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Why can’t I access a smear test?

Let’s talk….

This is a subject we need to talk more openly about, and that does mean ALL genders. it’s not a subject we should or can shy away from – yes it’s one of those taboo subjects that people in all walks of life struggle to talk about.

The lack of access to smear tests when you have a physical disabilities/impairments – I have been extremely honest and open about my own struggles as a disabled woman when gaining access to a cervical smear test. After having an abnormal result it took the next 10 years to finally have my next smear test but it did come at a cost that never should have happened just because of the lack of access.

When I say at a cost I mean money wise I like to call it ‘my fanny mot’ – not only did I have to go under I also had to spend 24hrs in a high dependency ward, I do have feelings of guilt because if I had the access I needed in the first place I probably would not of needed four procedures all at once which I know was to make sure I was okay after 10 years and wasn’t put under any extra distress, I just can’t shake that feeling Of what a waste of NHS funds just because of the lack of access.

Why? There is a huge stigma and misconceptions when it comes to disabled people- so let’s clear a few things up first. Yes we are and can be sexually active, yes we can have children if we choose and yes we have PERIODS.

Disabled people are being told they can’t have a test and worryingly – no it shouldn’t be down to any of the above as to why some disabled people can’t gain access but it isn’t just down to that, the lack of equipment and facilities within local GP surgery is a huge problem.

Two thirds of people that need cervical screening that have a physical disability/impairment are unable to attend one because of their disability/Impairment.

There is a massive disparity in the availability of the equipment and provisions across the country, while some disabled people are offered options like home testing and provided fantastic care, there is still so much more work that can/needs be done to ensure equal access for ALL.

We should all be able to access the healthcare we need when we need it, it’s important that GP practices and other providers are able to make the right adjustments where possible for those of us who have any sort of disability/impairments or limitation.

However, the problem does also lie with some GP practices having the lack of funds or being housed in unaccessible buildings. Changing attitudes is also just as vital to screening, as one in five people have been assumed not to be sexually active, therefore being presumptuous that cervical screening or being less at risk than non-disabled people that is not just dangerous but harmful.

In light of Cervical Cancer Prevention Week on 18 – 24th January please take a moment to sign this petition; link help make the vital changes needed for the future.

What are your experiences good or bad – do you worry about access or had no issues with access? Leave me a comment.

Kisses K

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How harmful is Inspirational porn?

‘Inspirational porn’ what do those two words mean to you?

The saying goes you “learn something new everyday” and if I am being completely honest that’s very true. It wasn’t until last year I came across the saying inspirational porn, unaware of what it actually meant. I wanted to dig deeper and find out more which forced me to confront my own role as a disabled person.

Inspiration porn pops up everywhere including TV, film, documentaries even the media. Most days you’ll come across at least one story or a video that’s gone viral describing disabled people as ‘overcoming their condition’.

So what is inspirational porn exactly – It is when you consider someone as inspirational solely because they have a disability/impairment. Why is that considered as inspirational? Because we exist? Does that make sense you? Finding people inspirational because of what they do; maybe that would include success in the face of adversity, maybe that adversity includes disability/impairment.

Now, you’re probably thinking, “I would never do this!” and I’m sure that’s true when reading it like this, you never would. But you’ve almost definitely seen inspiration porn, and maybe even shared it without realizing what it meant – it’s ok to admit you didn’t understand heck I will openly admit I have shared at some point in my life and I’m disabled some people might roll their eyes and say ‘well you should know better’. But it’s okay to not understand why it’s a problem, it’s when you then have the knowledge but still continue to do something that’s harmful to others.

Why is this a problem? The first example that comes to my mind are all the inspirational posters that feature people with some type of disability/impairments, like a wheelchair-user athlete or a child with prosthetic legs. Often these posters have something like”The only disability is a bad attitude” or “What’s your excuse?”.

This automatically suggests that a disabled person’s worth is measured by what they can achieve ‘against all odds’ by how closely they can replicate the typical life of a non-disabled person.

As harsh as this sounds the disabled community doesn’t exist to inspire others. Where as it is inspiring when someone does something incredible, just continuing to exist as independently as possible when you do have a disability/impairment isn’t incredible.

Through researching I found that ‘inspirational Porn’ isn’t a new term or phrase here’s a post by Cara Liebowitz back in 2015 in which she explains it to a non-disabled person in it, she says, “Reducing a human being – and a stranger, at that – to “inspiring” or “brave” or any of those labels is problematic, because you’re filling in qualities that may or may not be true in order to make yourself feel better.

Is there a solution? Absolutely yes. I believe every problem has a solution with in reason of course, it’s just how you solve that problem – ask yourself, “What did this person do that was inspiring or brave?” If the answer is, “They where in their wheelchair outside of the house,” when all they are doing is their normal weekly shop, then you are using them as inspiration porn. In other words it’s really simple in the grand scheme of things the solution is to stop, think and be more self-aware of why someone actually inspires you.

So my question is? what does the phrase ‘inspirational porn’ mean to you, have you ever come across it, shared it or like myself just learnt about it recently. Leave me a comment.

Kisses K

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My Heritage DNA kit

I have been meaning to write this for a while, and when I say a while we are talking about a year (like it’s a royal we!). so here we go no time like the present.

Finding out about my heritage until recently has never been on my radar which is surprising considering I’m such a huge history nerd plus having muscular dystrophy a Progressive muscle weakening condition you would think that finding out about my DNA Heritage could be something I would think about.

Finding out your ancestry has recently been taken to another level, in the old days you would have to trawl through endless amounts of public records to try and find out what your Great (x6) Aunt Fanny’s maiden name was. Now there is the internet and also at home DNA tests available.

I had been dropping very large hints that big i sending the link to the kit to hubby! – so you can imagine my excitement when I opened my MyHeritageDNA test kit – the results weren’t what I was expecting.

Of course I had a clear vision in my mind what I was going to expect as I knew some of my background, my family are English and Scottish, so I didn’t anticipate that I would be anything but British and Scottish from my sperm Donors side (sorry father) with a little Italian thrown in. I was fully aware I was probably going to be a little disappointed by my results as they wouldn’t show any new revelations but nonetheless, I was still hopeful and excited to try it and where I came from.

How does it arrive

Luckily I was gifted by hubby but you can buy one online and get it posted to your home. The MyHeritage kits retail at £75 but shop around as you will frequently find a special offers. This is an all-inclusive price that includes all the processing at the lab when you send your test back. You do have to pay the postage to return the swabs to the USA, but that was the price of one international stamp around £1.40, so it won’t break the bank.

What do you do?

The test is packaged well – provided In the box are two cotton swabs, 2 small plastic vials with liquid in and a small jiffy bag with the address printed on it. One swab you use in each cheek twisting it around on the inside of your mouth for 30 seconds, once you’ve finished put one swab in each vial provided and secure them in the bag. The next step is to then activate the kit on the MyHeritage website with the relevant code that you will find inside the box and post the sample off at the Post Office.

Waiting for your results

Now, this is where patience is a virtue. I did have to wait a around 12 weeks. It does seem like you wait forever before hearing anything but I just put that down to needing to know as soon as I’d done the first swab, but I have been known to get a little over excited about things; MyHeritage send you a confirmation email when it has been received in the lab, from there you can track the progress of your sample. The whole process does seem a little drawn-out but I am definitely no lab technician with absolutely no idea about the work involved, so I won’t count this as a negative I genuinely just wanted to find out my results.

My results

Results are in that long awaited email saying my DNA test was ready, they make it feel like a special event by playing a little video with your results which I loved, you definitely get the “wow” factor, rather than just reading through a plain boring PDF.

Are you ready here is what I am:

Crazy right? Scandinavian wasn’t a huge shock as my mum has mentioned that will probably come up but the Iberian wow and my Scottish roots are very clear to see. A family member on my Sperm donors side (sorry father’s side) has been I contact and turns out my nan is her great aunt I am even more excited to see what else I find.

Verdict

I am really impressed it totally over exceeded my expectations, i can see that a DNA test may be simply a matter of curiosity like myself, and it doesn’t give me more understanding of if anyone else on my mother’s side had/has muscular dystrophy but a DNA test may solve some mysteries or at least add support to well-developed theories. On the other hand, a DNA test taken for curiosity may provide strong motivation to pursue some serious genealogical research.

I am definitely glad I did it so if you’re looking for a present with a difference definitely get your hands on one when it’s on offer. After all, you have nothing to lose, but a heritage to gain!

Kisses K

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Why are people afraid?

Disability/impairment – what is it that scares people? It is a question I would love to get my wheels stuck into with a room full of people and ask why?

Who, just because we are disabled are being seen as different – less than, less able. If anything that’s being proven more though our voices to be an outdated untrue way of thinking.

This wasn’t always the case the lives of People with disabilities in 18th century England was very different most people with disabilities/impairments stayed in their communities instead of being placed in an institution, they lived and worked at all levels of society, from the poorest slums to the royal court.

While many institutions for disabled people were built during the 18th century period, the vast majority lived in family homes or on the streets and in the workplaces of their communities. People with disabilities/impairments lived at all levels of society, from the meanest dens of vagabonds to the highest circles of the elite and the royal court.

However, many did not live lives of destitution. People with learning disabilities – categorised as ‘idiots’ in this period – often still held down jobs and lived within networks of the family and friends -have you heard of Lord Nelson (1758-1805)? Even with one arm and sightless in one eye he led the British fleet and the deaf artist Joshua Reynolds (1723-1792) was the first president of the Royal Academy.

Throughout the ages the perception of the disabled community has changed that is very clear to see but has it moved forward or back? – could you see someone in 2021 with one arm, sightless in one eye leading our British fleet or someone who’s deaf being given an opportunity like being president of the royal academy?

As a disabled person, you are advised not to include your disability/impairments on your CV otherwise you won’t even make it to the interview stage. You’re twice as likely to be unemployed as a non-disabled person, even in the UK with the NHS, it costs on average £570 a month more to be disabled.

Businesses are only required to meet legal requirements and anything beyond that is an afterthought. With 1 out of 3 in Society thinking that having a disability makes you less productive than someone who is a non-disabled person, it’s not hard to see how prejudice surrounding the disabled community is something to be scared of – if you can become disabled at any time, reasons outside of your control, then you’re going hold onto as much control as you can.

Right now It is more important to make the outside of a building look beautiful and inviting, having anything that makes the building accessible like ramps are not incorporate within the original design layout. This also includes homes only 9% of new stock in the uk have basic access. What kind of message is that giving disabled people? Plus what message is that giving the rest of the Society?

22% of the UK population is disabled that’s a estimated 13.9 million people and right now UK businesses are missing out on the purple pound the spending power of disabled people and their families is a staggering 274 billion a year that’s rising each year by not being accessible.

If you build it, they will come.

We live in a world developed by and made for non-disabled people – it’s time to change there is no reason or excuse why disability/impairment needs to be unseen or mean less than anymore.

Leaving behind one-fifth of the entire world’s population isn’t an option anymore.

So my question still lies have we move forward or back? And why is some of the non-disabled Community afraid? What are your thoughts?

Kisses K

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I’m back! – My activism goals for 2021

Hey there, happy new year – missed me?

It has definitely been strange not writing but I stopped the urge to come back early, it was hard I can tell you. But I am all rested and ready to get my wheels stuck back into things, I love nothing more than a fresh diary to plan everything out and this year is no different. Fingers crossed this year I get to go back Into the big wide world.

As another year of blogging comes to an end, 2021 means ‘My Life Kerry’s Way’ will be 5 years old, wow.

As a disabled person I started advocating late in life because after being tired of not being able to live a life I/we deserve, I soon learnt as a disabled person you’re forced into fighting for your rights. After all, it’s the only platform we are given to share – not just our battles but for those who don’t yet have a voice.

Even though I fell into campaigning by mistake, it has become such a huge part of my life like it has for so many disabled people and their families. It’s hugely important for people with disabilities/impairments to be heard.

We live in a world developed by and made for non-disabled people it’s time to change that making the world a more diverse and inclusive world to live for ALL

My activism goals for 2021

This year my wheels are ready to get even more stuck in.

Continuing to build important relationships along the way – like with my housing association Habinteg who provided me with my forever accessible home, where I am able to choose to live my life not just exist, having an accessible home isn’t a luxury and everyone should have a choice and opportunity to live independently if they choose. #ForAccessableHomes

Of course I will continue fighting for my favourite subject ‘Changing Places Toilets’ these life changing facilities have saved my life along with many others – my campaigning has giving me the nickname #ToiletQueen. It’s so important for me to keep sharing and shouting why these facilities are so important for so many – the relationship I have built with my muscular dystrophy UK family has allowed me to share my stories living with a rare form of MD and the struggles it brings.

This is my own campaign – having had my own experiences with Wheelchair Services and how I was left with not just an unsuitable but an unsafe wheelchair for years. Having to endure not being listened to, also left feeling like a second rate citizen for many years, isn’t unfortunately a new concept, hundreds of disabled people are mistreated with horror stories worse than mine – it’s a working progress building a better understanding/relationship with my local wheelchair services to make these changes possible for others. I have some exciting projects coming up this year I can’t wait to share with you all.

Our voices after all are the most powerful tool we have. Roll on 2021

What do you prefer doing new years resolutions or setting yourself goals to achieve?? Leave me a comment

Kisses K

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Season greeting!

Hey there,

Wow can you believe Christmas Day is just two days way, it definitely doesn’t feel like a year has nearly passed us by. So before the end of the year I wanted to wish you a Merry Christmas and send you all the good vibes for 2021 – as heck we’re going to need it!

I know this Christmas won’t be the same for many of us – it’s definitely been a tough year in more ways than one.

I also wanted to say a huge thank you for your support this year without you I wouldn’t be able to do this i am truly thankful and grateful that you have not just been on this journey with me though out this tough year but also taken me with you on yours, it’s been a bumpy ride with plenty of ups and downs but I hope you will continue to allow me to be a part of.

Looking back though this year I want to take the positives, hubby and I got to spend more time together, I have met some truly amazing people along the way virtually of course. talking of virtually surprisingly I’ve been more busy because everything can be done virtually, I was named on the Shaw trust 100 list for the second year running as one of the most influential disabled people in the UK I am truly honoured and grateful for everyone that nominated me thank you from the bottom of my heart.

This year was also a huge celebration for the changing places toilet campaign after my 3 year relationship with Tesco’s we got to celebrate the hundredth changing places toilet installed within the Tesco’s superstore and extras throughout the UK I’m sure by now you don’t need me to tell you that toilets is my favourite subjects.

This year has been the biggest year for my blog yet with more of YOU lovely lot to connect with. You have all taken the time to read my blogs and sharing your stories not just with me but with everyone else it has definitely shown myself and others we are not alone and go though the same situation no matter what disability/impairments we have.

I truly hope that what ever your plans are this Christmas you have a wonderful time and please if you are on your own don’t hesitate to send me a message because I would hate to think that you were lonely and feel like you can’t reach out to anyone just because it is Christmas.

On that note, I’m going to be taking a well-earned rest over Christmas to recharge my wheels, eat way to much food (diabetic friendly of course) and chill out watching Christmas TV. And in the new year get my wheels stuck back into my campaigns and continued sharing my journey with you all. I’m also going to be working on some exciting plans for 2021 which I can’t wait to share with you!

So have yourself a very Merry Christmas. I know it is different to what we planned, but I hope you get to have some downtime. And remember our struggles and lifetime stories are the most powerful tool you have, use it to change the world to be a more inclusive and diverse place to live in for ALL.

Merry Christmas see you in 2021!

Kisses K

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Forgotten Minority – Accessible Advent

Those two words ‘forgotten minority’ you would think if you shouted these two words from the roof tops people would hear, listen and ask why do you feel this way, but over the years it’s been proven not to be the case.

It’s a cycle that seems to repeat itself over and over that makes you so dizzy you feel your going around in circles, and in a sense we are. As a disabled person myself I’ve spoken and written about this several times before as it’s something the non-disabled community should know and understand that tiny bit more.

So though-out December I have decided to join some of my wonderful friends in the disabled community in using #AccessibleAdvent – sharing one thing everyday in December that would make life more accessible.

Here’s days 1 – 19 of Accessible Advent:

  • ‪Day One of #AccessibleAdvent – I would love to see #StepFree access – why?? – Because there’s a 7% chance of being able to access family or friends homes!‬
  • Day Two of #AccessibleAdvent – Drop curbs – the lack of them makes it unsafe as we then are forced to use roads. Then you have “dropped curbs” which are still 2inchs high that’s not a dropped curb!!
  • ‪Day Three of #AccessibleAdvent – The lack of accessible #ChangingPlacesToilets – Over a 1/4 million people need Changing Places toilets to enable them to get out and about and enjoy the day-to-day activities many take for granted.‬
  • Day Four of #AccessibleAdvent – being disabled comes with a hefty pricetag having a wheelchair gives me my independence to move around not just my home but outside as well. My wheelchair isn’t a luxury our wheelchairs become our legs! Wheelchairs shouldn’t cost the same as a car.
  • ‪Day Five of #AccessibleAdvent – Accessible home – Just having the right adaptations to the home can create significant savings to the public purse. reducing social care costs for local authorities, health costs for the NHS as the number of accidents at home will significantly reduce.
  • ‬Day Six of #AccessibleAdvent – Safe pavements & redways. Nothing worse than trying to get somewhere & having obstacles in the way on pavements & redways like cars, bikes, scooters, bins or dog poop. Then your faceed with half the path missing or tree roots Bumpy ya bum!
  • Day Seven of #AccessibleAdvent – I would love for companies to ask for disabled people’s advice on products and whether they would work – let us test and trial – We are after all the ones you will be looking to buy your Products!
  • Day Eight of #AccessibleAdvent – I wish doctors surgeries where more accessible – having a treatment room available for disabled patients with access to a hoist & specialist bed.
  • Day Nine of #AccessibleAdvent – I wish for all automatic doors to have sensors at wheelchair height and not just push buttons, because not all people are able to push or reach the button.
  • Day Ten of #AccessibleAdvent – My wish for today – better Accessible transport – If we wanted to take a spontaneous trip we would need to book a week in advance & take out a small mortgage! That’s NOT spontaneous!
  • Day Eleven of #AccessibleAdvent – My wish today is a simple one! ACCEPTANCE
  • Day Twelve of #AccessibleAdvent – Today’s wish for there not to be a postcode lottery on vital life saving medical equipment like cough assist machines. Having one at home means less hospital stays, less chest infections, daily physio for your lungs & less of a drain on the NHS!
  • Day Thirteen of #AccessibleAdvent – Today’s wish for there to be more protection for disabled people when it comes to care agencies & the level of care, treatment & support a person needs!
  • Day Fourteen of #AccessibleAdvent – My wish is for Society to see beyond the disability – see the person we are so much more than just being a ‘disabled person’ We are human too!
  • Day Fifteen of #AccessibleAdvent – My wish Is for people to speak directly to us don’t just assume a disabled person won’t or can’t engage in conversation – not with our parents, friends, carer or PA’s, but with us, we are human & individuals.
  • Day Sixteen of #AccessibleAdvent – My wish is – Closed captions for them added and to be readable because everyone has the right to read what’s being said!
  • Day Seventeen of #AccessibleAdvent – My wish is that employment is inclusive for all – this year has shown remote working is possible in a variety of fields!
  • Day Eighteen of #AccessibleAdvent – My wish is that people are held accountable for their choice of words against disabled people. Especially people in the limelight that the younger generation look up to. After all we are not born to be prejudiced!
  • Day Nineteen of #AccessibleAdvent – My wish is that lifts are kept available & maintained in working order so wheelchair users & those who struggle with stairs can access upper floors.

Most people will never understand the struggles and barriers the disabled community face on a daily basis – and that’s okay, because why would they know if they don’t have anyone that can explain their experiences.

Leave me a comment with your very own ‘Day ? #AccessableAdvent’ and you even know I might just share it. Or even better post with us!

Kisses K

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I’m Kerry get me out of here!

In the words of Ant and Dec ‘Get me outta here’

It’s been 290 days since I left my home – you could mistake the beginning of this sentence for a meeting declaring my addiction to my home and to be completely honest you wouldn’t be far off the truth, my home has become my safety blanket as I’m sure it has for most people.

I’m definitely a human of habit around winter as it starts getting chillier I go into hibernation mode – My muscles don’t like the cold weather but then whose does, having Muscular Dystrophy, a progressive muscle weakening condition, my muscles work very definitely to most peoples – blood flows through our muscles helping to keep us warm but when those muscles can’t exercise like walking or moving around it becomes that much harder to warm up and keep warm.

Or another way to describe it is when a muscle becomes tight it can limit the blood flow into that area, the theory is when you put pressure on it you’re limiting the blood flow and then when you release that pressure more blood flows increasing the blood flow helping the muscles work.

It definitely scares me to think that in the 366 days of this year 290 of those days so far I’ve spent looking at the same four wall but what scared me more is when I truly work it out by the time the 1st January 2021 – which in the grand scheme of thing is only 16 days away, I will have actually only left my house a total of 5 times this year meaning that in actual fact it’s 361 days I’ve not left my home. Shit that’s scary! (Sorry mum for swearing!).

So yes I’m ab-so-flipping-lutely ready to leave my home, but as much as I’ve been shouting ‘IM READY, STAB ME IN THE ARM’ am I really? There are still many unknowns that make the picture more complex for disabled people, many of us face medical, practical or logistical barriers.

With the vaccine in full swing the NHS is rolling out the vaccine free at the point of delivery, top of the priority list is the care home residents and carers now with the news that some GP surgeries are now rolling it out. But are the current steps to create accessible information enough, and most critically will it come in good time?

Going to hospitals, sports grounds or pop up vaccines centres to access the vaccine isn’t a realistic option for many disabled people. For instance I don’t drive if I go somewhere far from home I rely heavily on a wheelchair accessible taxis or if I travel to the hospital that’s by the South Central ambulance service provided for by the NHS, but it’s not just travel, what about the accessibility within, this key issue needs to be addressed.

NHS stated that people should speak to their GPs if they know of any allergies they have. However, disabled people may struggle to see/speak to a GP or specialist health professional in time to discuss, or arrange the support or help they need.

This is urgently needed especially for those ‘who’ would need to be exempt it’s not that clearly laid out and without needed advice and guidance people like myself and thousands of others who are high up on the priority list may still avoid taking the vaccine, or not be able to give fully informed consent to do so.

Are disabled people, including those with complex medical conditions, ready for the vaccine?

The simplest answer is yes and no.

Yes, the vaccine is very much needed and welcomed by many in the disabled community as well as the non-disabled, plus it would mean the much needed end for so many that have been protecting themselves from the outside world having no real life human contact for nearly a year with family and friends.

No, in that there are concerns about effectiveness for specific conditions like muscular dystrophy and many more conditions and the accessibility of the program have still not yet fully been addressed.

Disabled people have definitely been the worst affected throughout this period, yet it’s not that surprising as I have always said we are the forgotten community, especially as almost two thirds of all deaths have been disabled people. Also those with learning disabilities and dementia have been severely impacted.

My hope that we now don’t go backwards and people learn and listen from this time as it’s proven even more that accessibility needs to be recognized and put at the heart of everything including the NHS.

How are you feeling about the vaccine are you worried, spoken to your GP or specialist or are you just dead against it?? Leave me a comment.

Kisses K

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My shoes are never dirty!

In a world that can feel like you’re not included we have to advocate for ourselves finding and invest our time in the little things that make us happy. I feel like I advocate for myself most days, I do still have my odd grumpy days but we all have moments right?

While being positive and choosing to live my life isn’t always easy, it also doesn’t mean I have to be unhappy and not find the fun and joy in things.

Of course I am aware of the things having muscular dystrophy has taken from me I have daily reminders, but I also know all of the things I am still left with – that I’m thankful for. The question is has muscular dystrophy given me anything? Now you would think my immediate and probably obvious answer would be NO it hasn’t, but like most things in this life, it isn’t quite that simple.

It’s a big question and I’m sure if you’re following my journey it would come as no surprise if I told you that my immediate answers are sarcastic. But no matter how sarcastic, small or seemingly insignificant my answers are it’s still something. Creating the thought process that allowed me to find some real answers.

Everyone has that favourite pair of shoes they can’t live without and god for bid any dirt! That’s where we find ‘wheelie-perk’ number one, what I love to call my feet ornaments my shoes are always clean – so clean in fact that my bright pink trainers have never been for a run. As I’m writing this I can picture my sexy bright pink trainers flirting with the world next time they are out the box, It’s the little things here people, just work with me.

Queue jumping, I can’t lie not having to wait in line is great, definitely makes you feel all VIP when I wheel up to a busy line and not having to wait 10 minutes. Hell yeah I can pay in 1 minute and wheel right off see ya. Admit it, you’re a little jealous of this one.

But queue jumping is not the best ‘wheelie-perk’. I know it’s shocking that there could be another but FREE parking across the UK! What else is there to say.

This next one is actually pretty exciting. I have a permanent seat under my bum with padding! Sore feet, tired of standing or itchy legs? Nope not me! – I never have to find a chair in a pub or stand at the bar, restaurant or cinema it’s ok I have my own thanks. Who needs to hear the words ‘take a seat’ when you can just have muscular dystrophy and spend your life in a chair? I think I went to far there didn’t I? Damn sarcasm.

So there we have it things I have now that I would not have without having muscular dystrophy a progressive muscle weakening condition. When I ‘sat’ down (pun intended) to write this post I anticipated it to be mostly sarcastic and hopefully a little bit funny. I did not imagined in the process it would remind me of how far I have come in acceptance and understanding of myself. Goes to show you never know where your mind will take you if you let it.

On a more unfortunate note, my forever-clean shoes will never need replacing so I may have to run them a few times if I ever want to justify new ones. Or I could lose one! people lose shoes right?

Kisses K

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Would you change it if you could?

A question I have definitely been asked a thousand times – Imagine if you could re-write your footprint though history.

Would you do it?

Removing all of your struggles, heartache and pain. Rewriting every regret – every bad decision?

Would you, take more chances – be braver or try harder?

Would you, sit through your life’s Polaroids cutting and editing out all the crappy parts of your history, discarding parts of your life’s history just to create your one perfect lifetime story?

A little bit tempted. It’s very easy to sit and daydream about the what if’s or if i wasn’t, i am not ashamed to say I have a few times since becoming disabled often wondering what my life would be like now had I not inherited Muscular Dystrophy a Progressive muscle weakening condition. When those daydreams start it’s hard to resist, it’s like your mind is being invaded with I wonder or I wish.

I wish I could stand next to my husband holding hands.

I wish I could remember what it feels like walking barefoot in the sand.

I wish I could physically hug my family.

Would I really want to change the life I’m living now changing the person I am today? – Because both isn’t an option, I cannot have my current reality and changing my past is genetically impossible.

By now you’ve probably rolled your eyes thinking It’s impossible to change your past so why are we even talking about this. But stay with me a little longer.

I have always believed things happen for a reason – some believe life is a series of accidents. From the moment of our first cries we’re thrown into a life we have no real control over, the earliest moments of our lives are a product of decisions and actions from parents or caregivers. It’s not until later on in life we start deciding and following our own path in life.

For some of us our path in life is paved out in genetic form which we have no control over and if we are truly honest no one asks to be disabled and that is okay to admit it’s a natural feeling to have at some point in life – doesn’t mean anything other than just that a simple thought.

When you truly consider every decision and action we make on a daily basis and can comprehend how the slightest change in your days could effect your life, you start to think of where you are and everything that had to happen for you to get where you are right now!

Now, I could wish my mum didn’t have the genetic genes that passed muscular dystrophy onto myself or my brother as I’m sure my mum and grandparents at some point in their lives had the same thoughts.

But my life didn’t go that way and if muscular dystrophy had missed my generation, there is no guarantee I would be where I today: Married, healthy (other than the obvious), safe and happy. So while it may seem perfectly reasonable to say that I would absolutely change my life footprint, I wouldn’t.

I certainly wouldn’t re-write my life because I love my life. I would not be the person I am today to ease all my past and future struggles, the lessons, the conversations, the understanding and the growth in myself why deny myself of that.

Never live with regret – if you think your going to regret saying it or doing it afterwards – don’t do it!

Everyone has struggles and as much as I don’t believe in having regrets I know people do. And I understand maybe your pain is too much. Maybe you would go back and re-write your story in a heartbeat, I certainly wouldn’t judge if you did.

Coming to peace with the negative aspects of your history takes a lot of hard work, a lot of self-reflection, even then, there are still some things that are just too hard. But being able to look at your life in the present and being able to say that changing what’s happened or your genetic footprint isn’t worth risking what I have now, is a pretty powerful sentiment.

I would love to hear your thoughts would you re-write your history? And why? Leave me a comment.

Kisses K

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The ever changing life living with Muscular Dystrophy

Life can change in the flash of a moment. Something we learn to adapt to whether you are the picture of perfect health or living with a disability/impairment.

My life is certainly no exception of this, life certainly isn’t predictable or come with a handbook to guide you through the timelines of life, it can change in the blink of an eye. Living with a rare form of muscular dystrophy a progressive muscle weakening condition, has certainly taught me the importance of living in the now.

I am the second generation in my family with this condition.

I have experienced both worlds the before and after Muscular dystrophy. The beginning of my life I could walk that now just feels like a lifetime ago.

I’ve had a powered wheelchair for going on 14/15 years now the transition wasn’t the easiest I’m not going to lie. I was angry I felt like my independence was ripped away from me, sounds rather dramatic when you say it out loud ‘ripped away’ but that’s how I felt at the time and for a long time after that.

It takes time with a lot of hard work on yourself as it can feel like everything you knew of your life has completely gone, it takes work, adjusting and taking control, rising above the challenge’s we are given. As crazy as this might sound to some of you if it wasn’t for those challenges we could never appreciate what we have.

The realisation of how big of a game changer a wheelchair could be.

Over the years I have had to adapt to the changes in my body, muscles gradually becoming weaker and losing the ability to do the simplest of tasks like washing my face this is the newest loss I have had to slowly come to terms with as it doesn’t just stop straight away it’s a gradual loss over time.

No matter how strong I am in general it’s still a hard reality to come to terms with mentally and physically, I don’t think that is something that will ever change for me, I still get angry and upset I just have a better understanding of myself and how I need to mentally deal with the loss of muscle memory.

This is just one of the reasons i started writing as well as becoming a disabled advocate, If it wasn’t for my dark days and all of the difficulties I have gone through and continue to do so living with MD, accepting my life from my wheelchair to losing other abilities I wouldn’t be here now to write about it.

It can be emotionally and physically devastating for some, just the thought of having to use a wheelchair as well as grieving the loss of a life that once was.

I leant to embrace my wheelchair and the freedom and independence it gives me. It’s a part of me the same as what comes next living with muscular dystrophy it taken me many years to get to where I am today, a lot of soul searching as well as theraphy.

This is why I believe it’s so important to share our voices and experience’s good and bad, if it helps just one person within the disabled community to feel less alone in their own struggles dealing and coping with the challenge’s faced personally and on a global level. You never know your experiences will help and uplifted.

Kisses K

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Embracing your disability

How Muscular Dystrophy shaped me as a person

Walking to Wheelchair – my story of transitioning

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International Day of disabled persons – Inclusion Is Long Overdue

With an estimated one billion disabled people living with visible and invisible disabilities/impairments worldwide and 14.1 million of those are in the UK, it’s no surprise that there are many barriers to inclusion in many key aspects of society. As a disabled person myself you might have read or seen me talk all about inclusion and the everyday barriers that most disabled people face.

It might shock you to know that not many people with visible or invisible disabilities/impairments enjoy access to society as they feel it’s not on an equal basis with others, this includes areas of transportation, employment, and education as well as social and political participation and of late the feeling of being ‘left behind and forgotten about’ by society in this current situation.

International Day of Disabled Persons falls on the 3rd December, it is a day that has been promoted by the United Nations since 1992. The aim of Disabled Day is to encourage and empower others to better understanding the people affected by a disability/impairment, making people more aware of the rights, dignity and welfare of disabled people.

The theme this year is “Building Back Better”

So why is accessibility still such a barrier in 2020?

Often accessibility is seen as a cost, when it can often be more of an investment, especially when the Purple Pound spending power of disabled people and their families is estimated at £274 billion a year and rising each year.

Living with muscular Dystrophy a progressive muscle weakening condition and the barriers that everyday life throws at you from accessing a toilet, restaurant or shops, even your workplace can be a barrier the list is endless, these reasons are why I started to share my experiences living as a disabled person in the hope that I could educate and shed some light as to the huge changes that need to be made within society – because being disabled isn’t a barrier the outside world is the biggest barrier any disabled person and their families will face!

Simple changes like making step-free access, automatic doors and the right equipped with inclusive technology does not seem like a huge ask in the grand scheme of things – I encourage you to think about how you can create a community that is inclusive for everyone.

If some within the non-disabled community continue to remain ignorant, as a society it will continue in failing to include disabled people. The need to fix or give pity isn’t wanted or warranted. But as humans we do have empathy, understanding and seeing things from other perspectives. It’s also good to remember that most of us either are, or will eventually become, disabled. So, it would seem a sensible, inclusive, future-proofing step to get with the program sooner rather than later.

There are a few exciting projects I’ve been involved in coming up on the 3rd December – might even be a Tesco changing places toilet reveal for #InternationalDayOfDisabledPersons so keep your eyes, wheels and everything else open on my social media!

Kisses K

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The reason to not stop telling children to stare at disabled people!

When you’re in a wheelchair or have a visible disability/impairment, it can feel like you’re wheeling around in a goldfish bowl when you’re out in public; ‘all eyes are on you’. It has become very much the ‘norm’ for me whether that’s down to my age or because my surroundings have become so transparent over the past 17 years it’s become second nature to expect it.

The human need for curiosity is a natural path for anyone to take no matter what age especially when it comes to disabled people, but in children it is always very apparent they want to ask about the funny looking chair that has wheels and why i can’t walk. As an adult, Personally I think it’s rather adorable and always make it a point to say hello or smiling at the little curious Angels/monsters!

These curious little cuties are the future generations. They’re Constant curiosity means their always learning, like little sponges soaking everything up. It’s that learning path to shaping their future attitude learning about all the different diversities in the world for the first time.

Sometimes, i will see parents hindering that learning curiosity by making the mistake of telling their children not to stare or point when there’s a disabled person in the vicinity. Why is this bad? Okay, yes staring isn’t polite but their children and only showing that natural learning curiosity to learn more. By telling your children not to stare at disabled people you’re not just hindering their ability to learn about a very misunderstood group of people, you’re teaching them at an early age ‘the stigma’ that being disabled or having a disability/impairment is bad thing and shouldn’t be discussed.

An example

I have plenty of friends with kids and eventually that little curiosity lightbulb into why I’m different to everyone else they meet as they get older, even more so when I arrive at birthday parties – by the end of the birthday party in cool auntie Kez with wheels because I’ve aloud them to jump on the back ‘holding on tight of course and with adult supervision behind them, to have a spin around. Just hearing the laughter and excitement in their voices while shouting ‘go faster, go faster’ They no longer cared about my disability/impairment I’m now the topic of conversation with their parents and with their friends at school as to how cool it was having a go on a wheelchair that moves just by pushing a joystick.

There is a beauty in acceptance plus by changing misconception is only bringing awareness to light. By me showing an allowing them to see my wheelchair in a different light than just something they don’t understand they knew I wasn’t so different. That simple little interaction changed everything.

I’m not saying to tell your kids to jump on the back of every disabled person wheelchair because that would be wrong you should always ask permission, just don’t tell them off for staring. Let them be curious, by go up and interact with the person. You will find most disabled people are more than happy to interact with curious little Angels/monsters and show them that we’re not so different or scary.

Kisses K

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Embracing your disability

Giving a positive message to new wheelchair users

Being disabled doesn’t make me a burden on my husband

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Have your say – your say matters.

The deadline is fast approaching and I need your help. Why because having your say means more than you probably think it does – by responding to the consultation before the deadline on the 1st December gives every disabled person and their families a voice for change.

Confused? If you weren’t aware already the government is now consulting on the long-awaited proposals to raise standards within housing, so that all new homes are built to better meet the needs of current and future generations of older and disabled people.

9% of homes in England deemed ‘visitable’ for a wheelchair user

Disabled people like myself and their families have been living in unsuitable homes or forced to live in care homes due to the lack of enough accessible housing available to live in.

I count myself lucky to now be living independently in home that better suits my needs it’s had a positive impact on my mental and physical well-being. But I should count myself ‘lucky’ everyone has the right to be able to live an independent accessible life by choice.

For so many disabled people the impact of not having access to an adapted home can be devastating. For example, disabled people living in inaccessible homes are four times more likely to be unemployed the impact can also mean they become isolated from society, having a detrimental effect on their mental health and mental well-being. It’s definitely did for me.

13.9 million Disabled people in the UK. 1.8 million have an accessible housing need – 580 thousand are of working age.

Building accessible and adaptable homes helps to increase disabled people’s independence in their home, keeping them safer, delaying or avoiding unwanted moves or trips the the hospital, all of which also create enormous social and public savings benefits.

Right now I only 1 new accessible home is planned for every 15 people over 65 by 2030. Do you think that’s enough? Because I certainly don’t, this is a really important chance for us to be heard, and if we raise our voices we can help forge a major milestone on the way to a more inclusive and accessible world.”

Don’t just take my word read more here: https://www.habinteg.org.uk/homecoalition/

So have your say let’s make a change together because your story is the most powerful tool you have and the only way to bring change is to speak up and share by responding to the consultation here: https://www.gov.uk/government/consultations/raising-accessibility-standards-for-new-homes

Please help me fight #ForAccessibeHomes You have until 11:45pm, 1st December to respond.

Kisses K

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For accessible homes

Accessible homes needed

Housing crisis

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‘How far have we come? How far have we to go?’

Be completely honest how much do you really know about disability history? Did you even know there was a month dedicated to celebrating? I’m sure most people would say no, even my own hubby said no when I asked, it wouldn’t surprise me if ‘no’ was your answer, it could very easily just pass you by without you even noticing.

Why? Have you seen anything being broadcasted on your local or national news outlets (TV or Radio) plus you won’t find anything within the school curriculum.

The Disability Discrimination Act is now 25 years old and questions remain as to why, in today’s society, there is still such extensive disability discrimination.

UK Disability History Month runs from the 18th November to 18th December 2020 (with an online launch).

This year marks the celebration of it’s 11th year, focusing on ‘Access’ and asking the questions ‘How far have we come? How far have we to go?’

As a disabled person who has been advocating for big changes within a world that still doesn’t see us, access is still a huge part of what needs to change. Our surroundings can have a big impact on our health from our homes to the area we live, if none of these are accessible it can make you feel isolated and unincluded.

Being disabled we often face barriers using local spaces because many buildings and events are still inaccessible. That’s why we should use Disability History Month to raise greater awareness and understanding of disability rights in our local communities.

It is so important to celebrate the lives of disabled people past and present. Which asks the the question why isn’t Disability Month celebrated more?

Did you know that King George VI had a very serious stammer and Prince Philip’s mother was born deaf and also had severe mental health issues? After the possible discovery of the skeleton of King Richard III and the revelation that he had scoliosis (curvature of the spine). In Shakespeare’s play, Richard III, his disability is mentioned often throughout the script, and yet it’s not taught within the school curriculum in a history lesson.

If people looked a little closer they will discover we all have ability, by listening to us when we “Stand up, and speak out” – we are changing History. We have a lot to say our voices are powerful together, we can’t turn back the clock to fight the discrimination and injustice of years gone by, but we do have the present and the future to re-write history together as one voice.

Lastly during this Disability History Month take the time to learn just one thing that’s pathed the course of history for disabled people,

If you know of an important figure past or present who was/is disabled, please leave me a comment below.

Kisses K

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Being proud of who you are

Walking to wheels – my story of transitioning

Muscular Dystrophy shaped me as the person I am

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A crappy situation but a basic need!

Today. I talk about the one invention that’s kept hidden behind closed doors but is undeniably important. So let’s talk “ode de toilet”

World Toilet Day is on 19th November. Yes at first glance, this seems like an unlikely candidate for a ‘world day’ and more like some sort of joke, but the day is nowhere as trivial or humorous as it may seem. All in all, it strives to draw attention to various sanitation issues around the world and work towards resolving them.

Do you just go to places expecting your toilet needs to be met?

Or

Rely on your own bathroom at home to meet your needs?

When you’re nicknamed the ‘Toilet Queen’ you know you talk A LOT about toilets but that’s ok because I would rather be known for talking a load of ‘shite’ when it comes to dealing with a basic human right we should all be entitled to. Whether it’s in your own home sitting on your throne playing Candy Crush or taking a basic trip out to your local supermarket when the call of nature happens we all expect to find a toilet that meets our needs.

What happens when those needs are not met? Many standard accessible toilets in the UK are unequipped, these so-called ‘accessible toilet’ in my opinion are very outdated in a world that’s ageing and living longer because of modern technology.

Why are standard accessible toilets outdated? Because some are to small to even fit a wheelchair on its own, without adding a caregiver or PA to the situation. If you are capable of transferring yourself you can be faced with the toilet being too high or low, grab rails are badly positioned/fitted or not enough, baby changing tables and bins all crammed into one small space or even used as a storage space.

What is a suitable accessible toilet that meets everybody’s needs? A ‘Changing Places Toilet’ if you have a complex impairment/disability and need space to move, a hoist, height adjustable changing bed and the toilet central on the wall for easy transfer either side with a height adjustable sink. 1/4 of million disabled people and their families struggle with just the basic of needs when going anywhere like a simple walk around a park, supermarket, cinema, museum, restaurant the list is endless.

1530 changing places facilities registered in the uk

However, it isn’t just about having that access to a toilet when your out, what happens when your basic toilet needs are not met even in your own home, because you’re unable to access the top floor of you’re home to use the bathroom or the toilet is too low or in the wrong position. Your forced into finding other ways like using a commode, adult continence underwear or a urine bottle.

2 in 5 disabled adults can’t fully use their bathroom.

Whether it’s in your own home or just going out – not having that access to something that is a natural bodily function and a basic human right your dignity is taken away.

What is the purpose of World Toilet Day? The purpose of World Toilet Day is to raise awareness about how many people in the world still lack basic sanitary facilities.

Ask yourself these questions:

Would you, a dignified adult, happily use a dirty toilet with a broken seat, smelling like it hasn’t been cleaned in a long time?

If your baby or toddler needed changing, would you use a dirty toilet floor?

Would you lie down an elderly parent or loved-one with dementia or parkinson’s on that same filthy floor to deal with their continence needs?

Would you happily use your living room as your bathroom?

Would you wear incontinences underwear even if you were capable of using a toilet in your own home but that toilet wasn’t accessible to use?

Kisses K

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Disabled and older people deserve better than ‘making do’

Most people take for granted but for some of us it’s the thing of nightmares!!

Changing Places – Why I started campaigning

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Can PA’s be friends?

A friend in need is a friend indeed

When you think of the term ‘Personal Assistant’. What are your first thoughts? – ‘She’s a bit fancy, ok for some to be rolling around with PA wish I could afford one, I would save so much time!

I was Watching the film ‘The Devil wears Prada’ and found myself giggling away, not because parts of the film are funny, but because It occurred to me that all the times I’ve used the term ‘my PA’, people automatically assume that I meant it in a conventional way.

But, what would you think if I told you that many disabled people, myself included, have personal assistants. Shocked?

I use the term ‘personal assistant’, or PA, to describe the person who assists me with daily living, yet when I use the term I’m often met with bewildered faces or laughter. However, when most non-disabled people hear the term ‘carer’, they immediately put you into that stereotypical box and assume you are vulnerable.

So why complicate matters? Why choose one term over the other? – Very simple not only do I prefer the term PA but also the power of language makes a huge difference. It can impact, not only how I feel and how others perceive me but also my PA.

The difference between ‘carer’ and ‘personal assistant‘

Personal assistance is a model of support that was pioneered by the Disability Rights community in the 1970s.

A relationship with a PA is very different from a normal colleague in the sense that they are required to perform intimate tasks, therefore maintaining boundaries and professional distance.

It’s Inevitable that working closely with someone will lead to friendships. After all, we spend a large proportion of our time with each other at work, that your bound to see the best and worst. It’s finding that right balance of knowing when to be professional as well as building a friendship.

Rather than depending fully on my husband still for 24-hour support taking a little stress and pressure off of him but also our marriage or waiting at home for the local authority carers to come on their rounds, which can be very restricting – having personal assistance means that someone receives direct payments from a local authority fund, so individuals can employ their support worker.

Is it really that important? Yes, because it stops disabled people from being at the ‘mercy’ of others or feeling like a burden. Direct payments have given me more control over my life the feeling of Independence and freedom, including the ability to create a schedule that works best for me. I am an employer and my PA’s employees. I deal with everything from payslips, tax, holiday cover and shifts.

I don’t have to feel like I’m grateful or that I’m a burden, as I’m contributing to society by creating two jobs. It’s very liberating; I feel very empowered.

The beginning of my journey with having PA’s it wasn’t the best start I found it hugely stressful with people taking advantage, late or not turning up at all which is unprofessional and disrespectful – However, saying that when you find the right fit in PA’s. which thankfully I have now it can be very fulfilling, enjoyable and I appreciate the camaraderie that these relationships bring to my life.

Do you have a PA or carer? Or are you a PA or carer for someone else? What is your relationship with them? Can this relationship also be a friendship and how does that work?

Kisses K

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When it all goes wrong with the Personal Assistant

Setting a new milestone with a personal assistant

Cough assist machine

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25 years on – The Disability Discrimination Act how far have we come?

It’s 25 years since the Disability Discrimination Act became law, but the campaign for equality goes on!

Passed on 8 November 1995 I was just 16 years old and very much clueless to a Community struggling in a world that discriminated against disabled people in regards to employment, education, transport, or goods and services. It’s a world I feel I was very much sheltered from but really should have seen more of the struggles as my own mum is disabled.

I watched a strong fearless lady raise two children never complaining of any of the struggles that she was facing in the world that doesn’t except her. My mum, and as an adult I now understand why my mum never really felt the need to sit my brother and myself down to explain the everyday struggles she faced – a world where there was no guarantee we would ever be a part of. Why, because muscular dystrophy a muscle wasting condition is a complex condition it can affect just one member of your family or it can affect a whole family like mine.

25 years on the BBC is to mark the 25th anniversary of the passing of the Disability Discrimination Act (DDA) with a series of dramas, documentaries, news packages and discussions.

How far have we really come in the grand scheme of things?

The DDA was amended in 2005. However, since 2010, Tory governments have made amendments to these laws, such as the removal of the Disability Living Allowance replacing it with the Personal Independence Payment (PIP), since the introduction of PIP many disabled people have faced even more hardship the cruel and inhumane sanctions regime, and cutting funding to disabled people’s led organisations. This was – and still is – a programme that need a lot more work to make sure disabled people aren’t left feeling demonised, and the lives and livelihoods of disabled people are not harmed mentally.

we still have such a long way to go to ensure equality for disabled people. As much as some things are better we are a far cry away from really being seen as equal in many ways, If anything the last few months have just proven how much work still needs to be done when words like ‘the vulnerable” are being used we seriously run the risk of going backwards and undermine all our gains over the last 25 years.

Over 14 million disabled people in the UK

  • 91% of homes do not provide the four access features for even the lowest level of accessibility – a home that is ‘visitable
  • 24% of disabled people do not have a home that meets their access needs.
  • 1/4 million disabled people and families can’t use a standard accessible toilet.
  • 75% of disabled people have had to leave a store or website, unable to go through with their purchase because it didn’t cater to their disabled needs.
  • 24% (18-34) can’t lead independent lives.
  • 60% of pubs and clubs inaccessible.
  • 80% feel overlooked during the pandemic.

For me, the most important thing is to continue fighting for the future of the next generation, to enable disabled people to use the law without the burden of it falling completely on the individual.

If it’s ever going to change. The change must come about with disabled people, nothing will ever be understood unless every conversation had about disabled people, involves disabled people.

Feel free to leave me a comment – I would love to hear your thoughts on how far we have come or what more would you like to see change??

Kisses K

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Being disabled and humour!

Being disabled doesn’t seem like it would be a laughing matter, and you would be right but in the same sentence I do think it has its place within certain aspects. Believe it or not it does have a degree of success as well, having that ability to laugh at myself not taking certain things too seriously I think takes courage especially with the way society sees disabled people. Plus it’s certainly helped shaped the person I am today!

It’s not about being good, it’s about being included. When you are disabled being isolated in some way is almost expected, yet how can this impact our use of humour?

Alex Brooker

I have Muscular Dystrophy a progressive muscle-wasting condition, over the years I have had to come to terms with changes in my health and life experiences.

To be honest, using humour is just part of my personality, that I’m able to share thanks to my friends and family never seeing me as a “vulnerable disabled person” and just seeing me for me, it’s been those comical moments in my life sometimes that have been Paramount in helping normalise your experiences. Constantly being upset or angry at your health or world isn’t healthy, yes it has its place like most things there’s a time and place for everything but it’s okay to find those moments of light.

Being disabled comes with its fair share of seriousness. That starts from when or if you receive your diagnosis, then the endless appointments, trying managing symptoms/condition. Ultimately and understandably it can take a toll and become mentally and physically draining after a while. But of course disabled people are allowed to have more in life than their condition, in the times it becomes consuming the ability to laugh can make the scary moments more lighthearted and manageable.

In the past I have used humour as a coping mechanism making that situation more lighthearted, in other situations I almost feel like I need to put people at ease with humour, making a joke before they do. I can take a joke and will more than likely give as good as I get, but it’s not very inventive to have to endure and listen to the punchline aims towards disabled people every time.

I am a little naughty with my humour at times. Once – we went swimming and the lifeguard said I’ll just go get the hoist to which I said ‘Ahh don’t worry just undo my seatbelt and just tip me, I’ll be fine I should float!” Or the time I told my husband friend after he said so sorry you won’t fit in my car that it’s ok to get a towrope attach it to his car in my wheelchair and I’ll follow on behind! – both their face where great at the time abs I guess in away it’s like my own free entertainment.

Being disabled definitely has its funny moments! Some might not be seen as a positive, but it can certainly make life very eventful. Some of the things I’ve done are pretty laughable; getting stuck in the Electric doors at the hospital. Getting stuck in a shower chair where I had to be cut out that was 1 fire engine, fast response ambulance, an ambulance and the jaws of death later, oh abs I was butt naked.

Yet it’s way more than that. I believe having the ability to laugh at yourself is hugely important. There’s a big difference between laughing at you and laughing with you.

Humour has a way of serving its purpose as a coping mechanism it can symbolise acceptance. Muscular dystrophy is part of who I am, but not all of who I am.

After all laughter creates happy endorphins!

Kisses K

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Ending the stigma

There’s no question that the stigma towards disabled people is very prevalent within society. Whether it’s someone seeing you as inspirational porn or giving you unwarranted pity – and honestly, when is pity ever warranted.

We have all had that one moment when you can feel that burning stare from someone you don’t know or a child has stopped in their tracks and points at the wheelchair asking why quickly push down and shushed by the parent whilst saying sorry.

How do you deal with someone staring or that parent apologising for their child, the sarcastic me would wink, smile and say ‘I know it’s my beauty, it can’t be helped I blame my mum’. Or just striking up a conversation with the parents letting them know that it’s ok to have that natural curiosity it’s human nature – It’s sad that society still has these stereotypes/stigmas about disabled people so by using the stares as an opportunity to make the world a little less ignorant towards disabled people. Surely is a good thing?

Your story is the most powerful tool you will ever own.

Sharing your own unique experiences gives non-disabled and disabled people that little more insight into a world they wouldn’t ordinarily see. Showing them we aren’t so different on the inside as we appear on the outside. What’s that saying!?

Will It require patience, yes absolutely unfortunately not everyone will be forthcoming in wanting to hear any of your struggles or wins in life. But I have found that sharing my story in person and on social media has been very beneficial. Sharing your life with others, especially strangers, isn’t something everyone wants to do. And rightfully so, you shouldn’t have to. But, it is a great way to spread awareness.

Don’t judge a book by its cover!

Don’t get to offended. I know this is easier said than done, especially if the stigma is in the way of comments that are meant to be rude and isn’t just an ignorant comment due to the person being uneducated. But, getting offended really doesn’t do either party any good because it doesn’t accomplish anything productive. By not getting offended, you automatically have the upper power, use that to your own advantage. In most cases, the person doesn’t mean to offend you — they’re genuinely ignorant towards disabled people because of the way Society see us. If you can hold your sh*t together long enough and I know how hard that can be, use your witty charismatic personality to shut then down. Witty banter is always a great tool because it’s show off that you’re a powerful, smart individual that’s separate from your imperfections or wheelchair.

Let’s be loud and proud. We can’t control our genetic makeup, but we can love it. Stop the stigma towards all disabled people. By showing the next generation it’s ok we got you!

Kisses K

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Everyday should be a Purple day!

I was honoured to be asked to continue as an ambassador for purple Tuesday 2020 alongside some incredible other disabled advocates.

Let’s face it this year the whole ‘Shopping experience’ has been very different for everyone – because of shielding I have experienced the online shopping world more than ever throughout the last few months. As you can imagine it’s a very different experience you don’t have that ‘see it in-person feeling and touch’ like you would when shopping in person, which I have missed I’m a girl that likes to mooch around the shops much to my husband’s annoyance!

Not being able to shop in person has meant I’ve not battled the lack of access within shops, restaurants etc. But, having said that It’s been a very different battled with some online services like slots, the product being out of stock or not fully explaining the product and very little in the way of pictures.

Having to rely heavily on the access of the online services provider, how easy is that assess as not every disabled person is the same – visually impaired is very different to being in a wheelchair, for example, both of our needs are very different.

Other services have also been heavily affected like dental, health care etc – disabled people and their families rely on these services, myself I’ve missed vital Respiratory appointments because of access to the service.

helpless and not valued

Disabled people make up 1 in 5 in the UK that means the Purple Pound is an estimated whopping 249 Billion spending power of disabled people and their families, and yet hundreds of companies are overlooking their disabled customers.

So what does Purple Tuesday do? it’s a way of creating awareness for all companies to make improvements and realising the needs of their disabled customers, breaking down the barriers that make shopping difficult for disabled people. Last year 75% of disabled people have had to leave a store or website, unable to go through with their purchase because it didn’t cater to their disabled needs.

So what can online services do to start making their online services that little more Accessible for their disabled customers by just adding an accessibility tool guide gives you more options like changing the text colour, language, lines spacing and letter spacing.

Over 2,000 organisations have already committed to improving the customer experience for disabled people.

I truly believe that every day should be a PURPLE TUESDAY. Join me in sharing your good and bad experiences tag that service asking them to change because your story is the most powerful tool you have.

Come and join me on 3rd November– Tag me on your social media platforms with a picture of yourselves with your thumbs up and the hashtag #ThumbsUp

Purple Kisses K

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Purple Tuesday ~ Changing The Disabled Customers Experience

Trying to look good in a wheelchair!

Is feeling like a second class citizen ok!?

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Disabled people aren’t so different from you!

Statistics state that two-thirds of the British public feel awkward talking to a disabled person, why is this? Because disabled people aren’t that different from what you might have thought. Understanding, willingness and an open mind to learn to understand the disabled world.

We are just as human as you are!

This one is simple and straightforward as saying the words ‘we are human’ – at the same time it’s sad that we have to remind people that disabled people are people, too. If you’re looking for similarities between you and a disabled person, look no further. This obvious yet needed reminder should make you stop and think, disabled people haven’t been discovered by the starship enterprise living on a faraway planet. We’re all made up of the same beautiful cosmic dust, what a wondrous thing that we all have in common.

We love

Being human we all have this fundamental need to love and be loved. This complex human emotion that inevitably brings us together in this complicated yet amazing world we live in. Abs against all the odds, we reach out to one another to form a connection that we all hold dear to our hearts. Love does not discriminate on your ability, or any “differences”. – Disabled people love and are loved. We form romantic relationships, have family and friends we love, and most of all we are LOVED.

We like to enjoy ourselves

Now, not everyone, disabled or not, likes the same things if we were the same it would be boring and none of us would have anything to bitch about over a cocktail or 5 – People seem to be shocked to find out I do like going to the pub or a night out (granted not right now), but like many people in my age group. I think this frame of mind comes from “disabled people don’t leave their house” misconception. Just changing that one thought process about disabled people, maybe you wouldn’t be shocked to see us at the grocery store or having a yummy pub lunch. It’s sad that society doesn’t expect that just because we are disabled we couldn’t possibly have a social life.

We have hobbies and passions

Despite the common belief and misconception that disabled people just live to exist doing nothing, complacent due to our inability to be as physically able as you might be, sorry not sorry to pop that bubble for you. Ability doesn’t equal your worth. Passion and enjoyment in life doesn’t require any physical ability. It requires a lust for life and experiencing new things, however that looks for you; disability or not. My passions/hobbies are Music, writing, advocating, shopping, fashion, beautiful countrysides, human rights, new foods, meeting new people, formula One and travelling. I am sure whoever you are reading this right now, we have at least ONE thing in common. Well look at that, a disabled and non disabled person having something in common. who would have thought it stranger Things have happened?

We have friends

Society likes to believe when they see us out and about we are either with family or caregiver whether that’s a PA or carer, it never crosses their minds that non-disabled or disabled people might like us and we do have friends that enjoy our Company. I like to think I’m a pretty good friend.

We aren’t so different than non-disabled people even though the way we live and accomplish tasks can look a little different. we all have one fundamental thing in common: the need for human connection.

Kisses K

Are you disabled or non-disabled have you got one I might have missed off what do you we have in common? Feel free to leave me a comment.

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Being disable doesn’t automatically make me depressed

You don’t have to prove yourself

How to stop comparing yourself to others

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Disabled and older people deserve better than ‘making do’

Let’s get right down to the wheels this year has proven to be challenging for most people, but for too many disabled people the challenges have and still been significantly worse because of access issues within their home.”

Disabled people for far too long now have been expected to ‘make do’ and ‘just put up with’ being unable to carry out even the basics of daily living with very little or no Independence.

In September Habinteg Housing Association published the results from the YouGov poll that it commissioned. Worryingly, and yet not surprisingly it revealed that inaccessible housing had a significant impact on the wellbeing of disabled adults during this trying time.

  • 35% were “unable to carry out all daily tasks and activities at home without assistance.
  • 24% of disabled people do not have a home that meets their access needs.

To add insult to wheels, the Government introduced a temporary Care Act easement. What does that mean well it gives local authorities the means to not have to complete all the assessments or meet all the needs usually expected of them. Although not all councils have applied easements, this doesn’t mean that it’s not adding that additional worry for disabled people who require that vital and much needed assistance in order to live an independent life.

It is difficult enough for disabled people when they are living in adequate accommodation and require that extra help but for those in inaccessible housing, the problems are multiplied. Having experienced firsthand what it is like to live in an inaccessible home I can understand the difficulties that disabled people have faced over the months.

April 2020, 86.3% (9 in 10) disabled adults said that they were “very worried” or “somewhat worried” about the effects the current times was having on their life.

Including feelings of isolation, fears about contracting the virus and concerns about accessing vital services.

People’s homes have played a central role in most people’s lives for a significant part of the year. those in inadequate housing are more likely to suffer adversely; physically, mentally and emotionally. Also, a higher percentage of disabled than non-bodied people have reported feeling unsafe when leaving their homes, hence confining them even more to their own four walls.

Home building will need to be far more accessible than it is currently. With the possibility of further social restrictions shortly, the Government needs to ensure that local authorities are in a position to provide adaptations to the homes of disabled people to enable them to live independently.

This is why I started campaigning for better accessible homes as well as joining forces with Habinteg as an insights group member with other dedicated disabled people wanting the same outcome. #ForAccessibleHomes

This week I met everyone on the insight group, Virtually of course to discuss the accessible homes consultation followed with a virtual meeting with myself, Habinteg’s Nicolas Bungay and my local MP Ben Everett to talk about why we need more and better Accessible housing.

It cannot be denied or ignored that disabled and elderly people deserve more than just “making do”.

Kisses K

I would love to here what would you like to see in the accessible homes consultation? Feel free to leave me a comment.

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Referring to people with disabilities as inspirational

The word ‘Inspirational‘ it’s a funny old word but what does it mean, if you google the Word inspirational it comes up with ‘providing or showing creative or spiritual inspiration’.

Fact – if you have a disability you would’ve been called ‘an inspiration’ at least once in your lifetime!

I get called ‘an inspiration’ at least once a week, And this hasn’t just started happening since I became more known as a public figure. I noticed that peoples perception of me changed as soon as my condition progressed and I started using a wheelchair. As I have a Progressive muscle wasting condition called Muscular Dystrophy.

Normally I’ll smile politely and say, ‘thank you that’s lovely of you to say!’ but I’m alway left feeling slightly bewildered. I’m not telling you this to brag or say hey look at me I’m inspirational – I’ve just always felt very awkward about being called inspirational.

The way I see it is I start my day of the same as everyone else – well I have a little help! But I’ve still got out of bed, got dressed and been to the loo, just because I use a wheelchair doesn’t mean it magically happens any other way. In the grand scheme of thing there are plenty of non-disabled people that struggle to get out of bed every morning.

I’ve not won an Olympic gold medal or cured world hunger, Just because I have a disability doesn’t mean that I’m constantly overcoming adversity. Sometimes I’m just collecting food in my big boobs!!

I watched a video of the late Stella Young. She couldn’t of put it any better in a TedX talk, where she coined the term ‘inspiration porn’. For instance, a quote you might have seen ‘ the only disability in life is a bad attitude’. Stella suggested that society has been sold a lie: the idea that living with a disability is a bad thing, something that makes you exceptional. Seeing people with disabilities as inferior is imbedded within our culture. That’s 100% true Society isn’t born prejudiced.

I wouldn’t change my situation for the world. My disability is not something I am ashamed of – quite the contrary: I have huge disability pride, if I didn’t have my disability you wouldn’t be reading this article, I wouldn’t be a disability advocate or started campaigning.

So yes my disability may be a big part of who I am – it also does not by any means define me. I hate to burst everyone’s bubble, but having a disability doesn’t make you exceptional; it just makes you who you are.

An ableist society is what disables disabled people.

inspiration porn: memes that objectify the disabled community for the benefit of the non-disabled world to make them feel better about themselves, to create a feeling of ‘I’m glad I’m not in their position’ or ‘I couldn’t go through what you do!’.

Why do we/Society consider it not only acceptable, but complimentary, to say such things about disabled people? – Could you Imagine if part of who you are were used as a ‘worst possible scenario’. It would be problematic to repost memes like ‘at least your not overweight’, ‘life may be bad but you don’t have a face like that’.

It is not my intention to shame or call out anyone who calls me or anyone else with a disability inspirational. I don’t want to perpetuate the already existing awkwardness that exists between the two communities – two-thirds of the British public already feels awkward around disability, But clearly, society’s perception of what it means to live with a disability is flawed.

Everyone’s achievements including my own change the narrative towards disability in some way – it’s not that I don’t like the word inspirational I just feel very awkward around it. as I all I’m doing is trying to make the world a more inclusive place to live.

Have you ever been called inspirational and how do you feel about being called inspirational? Feel free to leave me a comment I would love to hear from you.

Kisses K

A friend Sanjeev has made a short and brilliant documentary Connecting Without Borders that I think you’ll all love.

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Is it too hard to understand we just want independence!

Lately, I have felt the majority of my conversations with people have been around the word independence – why I fight so hard and why we deserve to have our Independence. Surely it can’t be that difficult to understand why?

Maybe it’s just me and my stubbornness to make the world a more inclusive place for not just myself but for other disabled people too. Being disabled shouldn’t mean the world is closed off when it comes to accessibility like housing, toilets, shops, holidays, hospitals and care.

It’s scary when you hear someone saying ‘going into a care home you’ll be better off’ do we still live in an era where sticking disabled people into a home is the best and only option, all because the world can’t figure out that we are still human beings with a right to make life decisions, whether it’s living at home with a supportive family or receiving help from an outside source. It’s down to us to choose and for the rest of society to catch up.

The majority of society think it’s very easy to be disabled when in fact we have to fight for pretty much everything that we have from equipment to care, it’s not handed to us on an independent silver platter. Everything is a post-code lottery.

The unfortunate truth is that no non- disabled person will ever truly understand what it is like to have to fight for your Independence daily, they’re never gonna understand how it feels to be told you can’t go to the toilet, you can’t enter a shop, you can’t have your own home, access to vital equipment that will save your life.

From the basic to the essential.

Being able-bodied, your capability and freedom to live independently and autonomously will never be in question. But for disabled people “independence” can be that one thing we feel like we’re constantly dreaming about and spend their whole life fighting for.

An ableist society is what disables disabled people. To win full access and inclusion in society we need to continually use this idea in all our arguments.

Kisses k

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Is Ignorance really bliss!

The saying ‘Ignorance is bliss‘ but Is it when that ignorance is potentially harming others?

Most people that know or follow me know that I’m extremely active when it comes to fighting for an inclusive world, not just for myself but other disabled people whether it’s visible or non-visible, so as you can imagine the people that are close to me have seen my struggles first hand and just how much I fight for the world to just understand the disabled world better.

Last week I found myself being extremely annoyed and disappointed with someone that’s should quite frankly know better, just because they didn’t want to wear a mask in a public building because it was inconvenient for them they decided that wearing a sunflower lanyard for invisible disability was okay!

My disability might be visible to the naked eye but others not so much.

This had me thinking about everyone else that is miss using not just Sunflower lanyards but something similar. For what reason other than selfishness and ignorance of not understanding what it is like to have an invisible disability let along a visible one. I could quite easily have a conversation with this person but is it gonna make a difference when they’ve already shown their lack of understanding.

Society already makes it hard enough with the lack of knowledge and understanding into disabilities, without adding insult to the situation using a disability for their gain just because they think it’s okay or because they don’t think anyone is going to confront them. If it wasn’t for the current situation we’re all in would they even know that these type of things are available like the sunflower lanyard for invisible disabilities? My guess is probably not.

Why should I be down to us to educate, when some in the world is so quick to use something that wasn’t designed for them. It’s for that reason alone it’s not theirs to use.

Society right now – The conspiracy theorists standing their ground on not wearing masks on their soap boxes telling anyone that will listen – The moans about wearing a mask and making a point of saying they are – The exempt/Shielders wearing masks because they don’t feel safe – The under the nose wears just not understanding it’s meant to cover both nose and mouth and lastly the ones that think their The Avengers and invincible to even a common cold.

What category do I come under I will openly tell you I come onto the exempt category but I still wore a mask to not just protect myself but for my Nan, husband, mother-in-law, other family and friend on the 3 times I’ve ventured out only local as in 5 minutes from my home.

When it comes to applying for a blue badge, CEA card (cinema card) you have to proof your entitled to one. So why is it not the same when it comes to exemption on wearing a mask, they have made it as easy as a click of a button for people to use and apply for one, it just makes life even harder for these fighting to just be seen as equals and included in a world that just see us as inconvenience but convenient when they need something!

For those of you that are exempt here is where you can get your lanyard or badge:

Sunflower lanyards

Euan’s Guide

Kisses K

What are your thoughts on this subject? Feel free to leave me a comment.

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unhelpful and unwilling people

The yearly awaited text message pinged into my inbox Monday morning – ‘We would like to invite you for your annual flu vaccine. Please kindly call to make an appointment. Thank you’.

That seems like a simple request yes? Call, book, get jabbed in the arm simples!

I’ve been having the flu jab for over 20 year’s, why because living with muscular dystrophy a Progressive muscle wasting condition my body has a tendency to have a mind of its own that I don’t have control over, so the need to take control of what I can in my life is understandable. Like keeping as healthy as I can, protecting myself from catching the flu makes sense especially as muscular dystrophy affects my respiratory as well as other muscles.

Have you ever come access that one person who is just very unhelpful, unwilling and rude that no matter what you say they are just never going to help and yet if you dared to be rude or abusive and unhelpful towards them it would never be tolerated so why is it acceptable to do it towards us!?

I’ve struggled on and off with some of the receptionist at my doctors surgery some are like block aids you just can’t break though to get to the other side, which has put my health at risk sometimes because of the lack of knowledge and understanding.

Monday morning it happen again just this time I was gobsmacked at the response I got, when I said I didn’t feel comfortable attending the flu clinic with other patients as I was still shielding myself the responses was ‘well other shielded patients have managed to attend appointments in the surgery’. My response – that entirely up to them that’s unfortunately isn’t myself, then this ‘well if you don’t want the flu vaccination that’s fine’.

Frustrated and shocked yet when I sat back and thought about it I wasn’t entirely surprised unless you have a disability you’ll never really going understand the barriers, battles and anxiety someone that is disabled faces in a daily basis. But this constant need to have to explain my condition, how things affect me the dangers and the why I don’t want to be in a room full of people just baffles me.

Only I can control myself and what I do, I certainly don’t have control over how other people choose to live their life that’s the simple truth. So if I choose to protect myself and my health why is that taken as if I don’t want the flu vaccination!?

It really doesn’t take much to be understanding or caring to others needs especially at a time when people are so uncertain and nervous especially with their health is at risk – protecting ourselves doesn’t warrant someone to be rude just because we are looking after our needs.

I would like to point out that not all receptionist are rude or unwilling to help there is some truly wonderful receptionist that are willing to go above and beyond, thankfully the following day I got just that someone willing to help me.

I would love for you to share the most unhelpful and the most helpful experience you’ve had – leave me a comment.

Kisses K

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My boobs and my disability

Well ladies let’s talk tits, boobs or breast. Whatever you like to call them it’s a subject we should definitely warm our hands up to and Cop-a-feel, well that’s what all the adverts and professionals say checking yourself regularly is a good thing but that’s all fair and well – unless you’re physically unable to, being disabled or having a disability you can already be faced with a multitude of health issues, that’s before it comes to having cervical screening and mammograms.

Having Muscular dystrophy a Progressive muscle wasting condition I haven’t got the arm strength or ability to be able to check my own breasts, I’m lucky enough that my husband cops-a-feel every day – as he’s putting my bra on while he’s getting me dressed, so you can all get your minds out the gutter!! But yes he probably does know my boobs better than me.

Last year by chance it was actually myself that noticed I had a large lump on the inside of my left breast after doing my normal party trick of holding a small can of Diet Coke in between my boobs (big boobs come in handy sometimes!). I already had an appointment with the paramedic from my doctors surgery to came out and see me about something else, so to be on the safe side I spoke to her, she checked me over but wasn’t overly concerned but gave me a course of antibiotics as she could feel a lot of swelling around the lump.

A week later and no real change an appointment was made for me to go to the breast clinic at Milton Keynes University Hospital, i was slightly worried at this point for various reasons the lump for one and the fact I am use a wheelchair and had no idea how accessible it was going to be for me.

My first appointment – The nurses where great made me feel at ease plus made sure there was a room big enough for wheelchair and me plus hubby, asked if I was able to get onto the bed but said it wasn’t a massive issue as I could be examined in my chair after the doctor examined me she wanted to do a full MOT on my boobs as I was 40 at the time and had never had a mammogram or breast ultrasound scan.

Before I carry on just so you all know I’m ok nothing was found other than a few pesky cysts!

Intrigued on just how accessible it was going to be as a wheelchair user, how was they going to achieve getting my boobs squished into a machine!? not having the strength to hold my own boobs let alone my balance half the time!

Breast Cancer Awareness Month.

The appointment was made longer so there was no rushing round I could stop and start if I need to, the breast clinic had there own hoist which I was pleasantly surprised about but unfortunately that wasn’t charged over night so it had no battery, but it was ok this time as hubby came with me so he was able to stand me to sit into a specialist chair for anyone with Disabilities, this chair was higher off the ground and was able to recline so you could lay completely flat as if you was on a examination bed.

Hubby was asked to leave the room, i’d like to add very well looked after by the Brest clinic nurses with chocolate cake, coffee and the tv while waiting.

A third nurse was ask if she could help by holding my head and arms as a pillow was placed behind me for better Comfort. The mammogram machine was able to move up, down, left and right which definitely made things that little easier, top off boobs out and the chair push into position as far as it could go, pillows placed around me for support, boobs into the right position it was time to start taking pictures. I was amazed just how my boobs including my body could be pulled into that many different angles.

The whole process itself wasn’t completely painless as you can guess when your boobs are being flattened like a pancake that wasn’t hugely comfortable or painless. The nurse where amazing listened to every direction working with me to make me feel so comfortable and safe.

Picture time finished I was covered up and wheeled into a different room so the doctor could do an ultrasound scan, as I explained earlier of the specialist wheelchair they had was able to lay like a bed with the nurses still helping move my arms the doctor carried out the Scan.

As a disabled woman or person when it comes to having personal appointments or any appointments it can be very difficult physically, emotionally and mentally, when there’s no thought of what our needs are, it’s the simplest of things that can make the world of difference like a specialist chair, bed, hoist and more time.

I would love to here your boobie stories men included if you have one. Leave me a comment.

Kisses K

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What my wheelchair has taught me about life.

Everyday is a life lesson some way or another.

I have a rare form of Muscular Dystrophy a progressive muscle wasting condition I use a wheelchair 24/7, 365 days of the year unless we have a leap year of course. That has been my reality of more than two and a bit decades. But my wheelchair has given me a unique perspective that I wouldn’t trade for all the tea in China.

Transitioning for adults and children new to the disability community, the thought of having to use a wheelchair can already be hugely daunting and scary place but it’s also surrounded With some negativity. You only have to look at the words and phrases we use to describe it: “bound,” “confined,”. “have to use,”. While old-fashioned these words and phrases, unfortunately are still in our everyday language and the way we/Society think about disability.

My first wheelchair was when I was 25 wasn’t anything fancy or powered it was your standard run of mill manual wheelchair in sexy black of course from wheelchair services, with big wheels and long handlebars which gave me the option to not only be able to push myself and get around but it also allowed my partner, family or friends to push me where I needed to go. Hubby on several occasions wondered off and left me hanging around the shop aisle forgetting he needed to take me with him!!

Since then I have upgraded and had a few powered wheelchairs over the years that have given me even more freedom and independence you could say a whole new lease of life. At times, my wheelchair has also allowed me to see the not-so-nice side of life, but it has also opened up a world of opportunities that would not have been possible without it.

Example, my blog, the campaigning work with Tesco and Changing places, being a freelance writer, the awards I’ve won and tv/ radio opportunities without my wheels I probably would not have done any of these things.

Let’s face it when people see/met you for the first time your wheelchair is the first thing they see, it’s definitely been a conversation starters. using a wheelchair, you’re going to either stick out like a sore thumb or become invisible. I’m one of those really annoying people that constantly has a smile on their face which seems to work – allowing people to feel comfortable approaching and striking up a conversation.

While my wheelchair has opened up some incredible doors and positive lifelong friends, my husband and other amazing people. it’s also a reminder that there are some not so great people in the world. Having a wheelchair or any type of disability you will quickly notice that people will judge you. Stare at you. Say ignorant things. Say some pretty awful things. Say you can’t do it. Tell you no. Ask you a lot of questions.

Life can be hard. But life can be hard for everyone. Life can also be really, really great.

In the past, It would make me so angry I would want to scream and shout at them I quickly realised you can’t argue with stupid and ignorance will always be ignorance. But what I can do is teach the ones that want to make a difference by sharing my story, my struggles, the barriers I face every day. A wheelchair will quickly teach you who is worth your time and energy.

A wheelchair gives you the platform to be an advocate not only for yourself but for creating a more equal playing field for everyone else.

I’m thankful that I’ve been able to see the world on both sides of the fence from being non-disabled to disabled it’s definitely made me appreciate the life lessons, it’s taught me to see the world in a very different way, to be more patient, caring, understanding and humble.

A wheelchair gives you, your freedom and Independence the opportunity to participate in life, get engaged, and gives the gift of a unique perspective and valuable skills that will take you throughout your life.

The saying really is true that when one door closes, another opens. Focusing on the negative will only blindside you into seeing the things you cannot do instead of looking for the opportunities that you can.

The best life lesson that my wheelchair has taught me is to appreciate life! My chair has travelled with me, introduced me to lifelong friends, campaigned for a more inclusive and diverse world, allowed me to spend time with my family and friends, wheeled me down the aisle on my wedding day, I don’t know where I would be without it and it is a good reminder to appreciate the little things in life.

Kisses K

I would love to hear your Wheelchair stories what do you appreciate about having a wheelchair or you might not have one and have questions feel free to leave me a comment.

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Women Sexual Health and disability

Let’s talk about women’s sexual health, especially disabled women, sorry not sorry gents this might not be one for you but definitely stick around as you might learn something new!

It’s time we/us as disabled women spoke more about the barriers we are still facing when it comes to sex, periods and cervical screening. It’s definitely a subject we don’t speak enough about but most definitely should be. As who will teach the young disabled women plus make it so they don’t face the same barriers we all face today.

Let’s face it, It’s one of those subjects most of us shy away from disabled or non-disabled, it’s even more difficult when you have a disability because people have an assumption that we don’t or can’t have sex, periods or need smear tests because our bodies are seen as medical, not sexual.

Surprising this is one of the biggest questions I’m asked by someone I know or a complete stranger ‘can you still have sex, or want sex’. Shock horror Disabled people are out here having sex, let’s make that clear, But even when people accept that there is still a presumption we only sleep with other disabled people, so it doesn’t matter if we’re having safe sex or not – we can just have hanky-panky all over the place with each other without checkups.

It seems to be common practice to perceive people with disabilities as objects rather than complete people

I have Muscular Dystrophy a Progressive muscle-wasting condition and as my body changed year on year so the things like having a period or smear test became harder.

My husband is my full time care giver so does all of my personal care needs, trying to keep that level of women mystery about you is difficult in a relationship – plus how do you ask or even expect your partner to help with a period every month? so I made the decision to have a Marina coil fitted this stops all my period so I’m able to manage my period that way I must stress this might not work for all this if my personal preference.

Society’s view is that disabled people don’t, won’t and can’t have sex.

So what happens when no one will discuss sex, cervical screening and periods with you when medical professionals are letting you down when it comes to your sexual health, or when those around you see you more as a child than a sexual being.

With funding for sexual health services in England and Wales drastically cut in the past five years: it’s reported £64m less is being spent on services, equivalent to a 10% budget cut, according to the British Association for Sexual Health and HIV. A restructuring in 2013 has also seen responsibility for sexual health fall to local councils rather than NHS England. These cuts pose problems for all users and with Public Health England saying they seen a growth of 5% in the past 12 months in 2019. But with additional issues faced by the 13.9 million disabled people in the UK. These is already a lack of access to these health centres I.e no hoist, large enough room and bed available or untrained staff.

The real danger with the lack of access, understanding and knowledge. Disabled women are missing out on vital test/treatment like smear tests and contraceptive. My own experience with access to smear test I had a 10 year-long battle to get access for a re-tested after an abnormal result and a 5 year out of date coil resulted in me having to spend 24 hours in a high dependency unit and being put under for an operation just for a full fanny MOT!

I received so much negative backlash sharing my fanny MOT story online from the non-disabled community but that just shows the lack of knowledge, understanding and ignorance when it comes to disabled women and sexual health – it scares me to think of the thousands of women with disabilities that don’t have access to life-saving treatment like the cervical screening just because of the lack of access no one should have to go through what I did.

So what needs to happen we need to see better access at GP surgeries and sexual health centres and better education across the board when it comes to disability and sex, Not talking about these important subjects can lead to somebody feeling like a lesser person, feeling less desirable.

Just because we have a disability doesn’t mean we’re not hot and sexy!

Most of all, as women with disabilities we should feel empowered to talk about sex, periods and Cervical screening because it could save lives.

So let’s get talking ladies let’s show the world just because we have a disability we are sexy, sexual and deserve to be treated as just that and receive the same medical treatments as other women.

Please support my friends petition for better access: by clicking on the LINK

Kisses K

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My fanny MOT

HDU Ward 6 – Milton-Keynes University hospital

Accessibility issues within the NHS

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Incompetence nearly killed my mum!

Disclaimer: my life Kerry’s way is a personal blog. Any views or opinions represented in this blog are personal and belong solely to the blog owner,  and do not represent those of people, institutions or organizations that the owner may or may not be associated with in professional or personal capacity unless explicitly stated. Any views or opinions are not intended to malign any religion, ethnic group, club, organization, company, or individual.

I feel like I have been staring at a blank page for days, trying to process feelings I have locked away in order to stay strong and level headed – now it comes to write them all down I’m struggling – how do you process something that hasn’t happened to myself but to someone you’ve loved unconditionally your whole life. – I feel so much rage and hurt, helplessness, disrespected, fear, discussed, ignored, anxiety even hate. There isn’t an emotion I haven’t felt/feel. With one I just haven’t been able to suppress thought out this whole situation the worst feeling of them all ‘Failure’ the Constant feeling that I’m failing as a daughter to protect my mum from the very people that are meant to care and protect her as they would their own family.

I feel like my life is being held hostage by Caremark – someone please help me!

When you have carers/agencies you’re passing all of your care needs over to them, you’re entrusting your whole life to them. We all know that’s not an easy thing to do, so imagine losing all trust in the care agency.

Apologies don’t make a blind bit of difference anymore from this care agency ‘Caremark’ When I’ve witnessed them constantly continuing to be ableist, full of excuses, disrespectful, character assassination, lied, bullied, avoided the truth and quick to blame others for their lack of management, training and common sense.

Time to speak ‘MY TRUTH’ they nearly stole my mum from us because of their incompetence.

WHY – The level of care Caremark provide or lack thereof is classed as Domiciliary care whereas my mum needs are complex care/nursing care as she needs a cough assist machine and ventilator – domiciliary and complex care are polar opposite here’s why:

Domiciliary care is defined as the range of services put in place to support an individual in their own home. Services may involve routine household tasks within or outside the home, personal care and other associated domestic services necessary to maintain an individual in an acceptable level of health, hygiene, dignity, safety and ease in their home.

Complex care, also known as long-term care or continuing care, is given to patients with significant, continuing healthcare issues such as chronic illness and disabilities These health care issues could include muscular dystrophy, ventilators. Complex care requires the carer to be proficient in an array of specific caring methods, which can be learnt and taught at dedicated training centres. As well as providing complex care, carers should also consider facilitating patients to lead independent, active, and fulfilled lives whenever possible Carers can provide complex care to patients but, as mentioned above, they need to be proficient in specialist care techniques. These could include enteral/PEG feeding, stoma care, gastrostomy feeding, nasopharyngeal suctioning, oral suctioning, bowel management, oxygen therapy and tracheostomy care.

Caremark have made me feel so helpless on numerous occasions because of their openness to neglect and unwillingness to rectify their mistakes let alone admit they have made more than one mistake.

My mum is worth more than your bottom line and lining your pockets!!

There will never be any justification for their confident lack of not giving a sh*t who they send in, I’ve been so angry and broken-hearted so many times I’ve lost count like 6 hours of constantly calling the office and speaking to the manager ‘J’ I shouldn’t have to explain until what felt like I was blue in the face, that if a carer can’t even provide basic care needs they should not be sent. Which became an ongoing theme of leaving my mum with no fluids, medication, food, cold, in pain, no light, no repositioning or ventilator sometimes for hours or days. Yet numerous times Caremark was told of inadequate care.

Many times I have threatened safeguarding and calling the authorities as this wasn’t just neglect it was cruelty. My blood boils at the thought of how anyone knowingly treats another human being with such disregard and neglect, especially knowing this person is unable to move their own limbs and care for themselves. The simple FACT is they had knowingly put my mum in danger on multiple occasions.

Safeguarding have been called more than a hand full of times by different people, even another care agency.

If my brothers care team had not done an emergency step in, when my mum was found barely breathing and slipping in and out of consciousness with the Caremark’s carer doing NOTHING, even after my brother’s team stepped in this carer still didn’t report to Caremark that there was a serious situation – finding out this news broke me into a million pieces the one weekend I thought it was safe to not check-in like I normally do, this CARE agency very nearly stole my mum from myself and my brother because of their negligence sending inadequate and untrained staff. What makes it even worse is they continued to send this carer in the following days after this incident knowing they nearly killed my mum, THAT scared me. Whats even more concerning is that wasn’t the last time they sent this carer.

I’m now so petrified that every time I speak to my mum this will be our last conversation, my last memory, the last time I get to say I love you.

The lack of care from Caremark stems even from their supervisor ‘T’ – ‘this so called’ carer took what seemed great pleasure character assassinating my mum for 45 minutes on the phone trying to convince me that my mum is the issue, that she is rude, abusive and how carers didn’t want to go back. T told me that all they have ever done is be caring and helpful followed with I even scrubbed your mum’s infected toe with a toothbrush. I came off that call inconsolable and so angry how dare T be that disrespectful who on earth do they think they are, no child should ever be put though anything like that, especially when you know it’s all lies. It was at that point I realised Caremark just didn’t want to understand or ever going to understand let along admit or take responsibility for their actions. For the lack of training, language barrier or admit their carers have told them they didn’t want to do complex carer. No, it’s easier for Caremark to push ALL blame on the vulnerable disabled person.

Several occasions I have had to keep my mum company via the phone, one time was nearly 6 1/2 hours long until 3am talking, because we both knew it was going to be a ruff night for her. I cried myself to sleep yet every hour woke up to check my phone just to make sure I hadn’t missed a text or call. I’ve cried myself to sleep most nights or lost sleep in the fear of getting a message or worse a phone call.

Terrifyingly ruff days and nights aren’t the only issue, being told my mum has no care for hours is apparently acceptable to Caremark.

It’s been a constant mentally draining battle with Caremark to try and get adequate care, you would think I was asking for the impossible – If it wasn’t a language barrier it was lack of training or just rude bullying staff. We’ve all watched an undercover Panorama or Ch4 documentary on care agencies that provided home care with family members breaking their hearts watching video footage of their family member being mistreatment. Never did I ever think I would be that Family member I’ve watched hours of heartbreaking video footage – of numerous carers just being rude and bullying one example a carer could be seen repeatedly bullying saying ‘say my name, can you not say my name I can say yours’ with mum begging her to leave and stop or she’ll report her, the carers response was ‘report me, I’ve done nothing wrong!’. My blood has boiled on more than one occasion where complaints are not taken seriously even with evidence. Caremark are quick to report statements sent in by their carers, yet never called to check and see if mum was ok or hear Mums side of the story, is that because they would have to admit they lied on more than one occasion?

My heart sinks, my anxiety kicks in every time the phone rings or a message flashes up on the echo so worried to pick up or listen.

I had to sit back and watch Caremark make idle threats and backhanded comments to pull the care in emails for weeks, knowing that if I react there’s a very high change my actions could be taken out on my mum. It frustrates me there is never any repercussions with care agencies like Caremark. Even after you constantly complain to the people that are meant to be there to help you.

False promises with no action or repercussions.

I’ve been so physically and emotionally drained I’m unable to function some days where my husband and my own pa’s have been so worried about me putting my own health at risk. Having muscular dystrophy myself it hasn’t helped my mental health, but I knew I had to put my mum’s needs before mine. For the first time she needed me, my mum needed me to be strong for her, she had never felt like she could confide in me before now, as much as it is breaking my heart listening to the treatment my mum was having to injure I needed to be strong.

Do they even acknowledge or understand the lasting hurt and damage they have caused my mum, myself, my brother and family.

Your time is up, it’s time to truly hold your hand up and say you FAILED – stop hiding behind your lies and the CCG.

As for me I will continue fighting and supporting my mum because she’s worth more and deserves better than Caremark!

Kisses K

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I want to scream I’m still here!

I don’t know about all of you – I sometimes have this overwhelming urge to shout ‘Hello, I’m still here’ I’m not invisible while frantically waving my arms in the air – well, if that was at all possible, I’ll need to rope in one of my PA’s to do that part! I’ve openly said the disabled World is a forgotten world or afterthought and the fact it’s not a new concept most of us haven’t felt, read or written ourselves.

The outside world is moving forward as I watch from the window.

Yet when we remind the world that Society has left us behind that same society not all but some. Act as if we’re moaning that nothing is good enough when in reality all we are asking is that we are treated the same as the non-disabled world.

It’s paraded all over the media then as quickly as we all agree yes, yes this is how I feel it disappears. It then just feels like a broken record constantly repeating itself until something else happens and we give Society a little nudge again to remind us that we are here and nothing has changed.

Do you ever get that feeling you need to find a very big field and just scream!

You could even say that we’ve become so immune to being left behind we just get on with life and adapt because that’s all we can do until someone truly wants to listen. Which unfortunately is up to us to keep talking and sharing just why we feel left behind. Because how else are people going to learn the barriers we face in everyday life like accessibility with toilets, housing, shopping access to hospital appointments the list is endless.

So yes there is a need for action there is a need to scream I’m still here even in the ‘new normal’ everyone keeps going on about we are living and yes absolutely we will adapt because that’s who we are but no we shouldn’t have to we will keep fighting, why because of my life matters, your life matters, disabled lives matter.

I’m not here to educate you on disability, but I will.

EVERYONE is entitled to live in an diverse and inclusive world.

Kisses K

We all have our ‘we feel left behind stories’ so please sharing them with me by leaving a comment.

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For Accessible Homes

Have you ever looked around at your home and thought I really hate living here not because of the decor or the area that you live, but because you’re stuck in one room unable to access any of the other rooms in your home. This one room acts as your living room, bedroom, kitchen and bathroom.

For Accessible Homes week 14th – 18th September

Disabled people like myself and their families have been living in unsuitable homes or forced to live in care homes due to the lack of enough accessible housing available to live in. Back in 2018, I wrote about how the new ‘housing crisis’ that was being reported. Yet this wasn’t a new concept to the disabled Community we have been fighting the Government and councils for years screaming that there has been an issue way before it was being reported.

Safely in and out of your home is the simplest thing most take for granted, yet disabled people are living in a home that’s not designed for anyone with disability needs, how are we still living in a world that access to your own home is a problem, I’m lucky enough to have a home Provide by Habinteg that’s my forever home it’s made a huge difference in my life where I’m able to have my independence but with the population ages and rates of disability on the increase, less than a quarter of homes built outside of London by 2030 will be suitable for older and disabled people.

In July of this year, I met virtually with Housing Minister, Rt. Hon Chris Pincher MP, to discuss the lack of accessible housing in the UK. Alongside Habinteg’s CEO, Sheron Carter, Director of Strategy and External Affairs, Nic Bungay and Anna Dixon, CEO of Centre for Ageing Better representing the Housing Made for Everyone (HoME) coalition. The meeting was convened by Liz Twist MP

Sharing my first-hand experience of living in an unaccessible and accessible home I urged the Minister to launch the public consultation on accessible housing standards that was promised by Theresa May before she left her post at number 10 more than one year ago. This is after an Insight Report was published by Habinteg last year revealed just 1% of homes to be built outside London by 2030 are set to be wheelchair accessible properties. The Minister also mentioned that the disability strategy being led by the cabinet office, will include accessible housing.

On 8th September Robert Jenrick, the secretary of state for housing announce the consultation document and plans to make all new homes meet ‘lifetime’ standards the housing ministry is asking for industry views on changing building regulations to ensure all developments must meet the “category 2” standard for accessibility – broadly equivalent to the old “Lifetime Homes” standard.

Those whose homes do meet their accessibility needs have reported improved health and wellbeing. However, an accessible home is not only beneficial to the people living in it. Just having the right adaptations to the home can create significant savings to the public purse, reducing social care costs for local authorities and health costs for the NHS as the number of accidents at home will significantly reduce.

It’s not a luxury to live in a suitable home and I believe everyone, old and young, disabled and non-disabled, deserves to have somewhere to live where they can feel at home. Being a disabled person means you’ll constantly face mental and physical challenges so why not make the few changes to new builds that make it easier for people and families with a disability.

Kisses K

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Accepting a new normal

Accepting a new normal when I was just feeling like I had found my feet… well wheels!

‘Normal’ what does that even mean and does it really exist?

Everyone’s normal is different or we would all be boring. plus life has this way of dealing us different cards of change from time to time whether it’s through choice or necessity.

Being disabled life already throws many different challenges at you on a daily basis, and as much we take those hits time after time on the chin – obviously finding ways around them they can also be extremely difficult to come to terms with and, understandably, most disabled people often miss and mourn their old life I know I have even if I have embraced my disability it took me a long time to get to where I am today and yes absolutely I still miss many things I’ve just learnt to live without. So accepting this new ‘Normal’ is far from easy.

Finding acceptance is often the only way to enjoy life again.

Having muscular dystrophy A progressive muscle wasting condition – acceptance has had to become part of my life, as each year passes my body changes or I lose the ability to do something for instance recently the strength in my left arm has gotten weaker so wash my own face has become harder and harder.

With so many rule foundries, people not social distancing it’s hard to feel safe. The world maybe moving forward and opening and yet I missed and still can’t go to vital appointments with health specialist like my 6 monthly respiratory to check my lungs are doing ok, my neurologist doctor and his team.

So accepting this new ‘normal’ isn’t it going to be that easy for some of us.

I could totally say to you all right now look for the positives like I would in most situation and I’m totally not saying don’t as you should always at least try, but with so many of the disabled Community still feeling left behind as the rest of the world tries to move forward. In all honesty where do we even fit in within Society? With so much confusion, scaremongering and people just avoiding/ignoring the feeling of those that have been shielding or taking those extra precautions.

This year I have been out of my house 3 times – that’s 3 times in 8 months.

I don’t know about you guys but as much as I’m exempt from wearing a mask I’ve found myself wearing one on the two occasions I’ve ventured out only to my local shop 5 minutes away but still made sure I had one on. Why, In a way i feel It’s to prove a point that just because I don’t have to wear one I’m still wearing one because of people kicking up a fuss that don’t want to wear one but should wear one!

Acceptance – is a process that only you can do at your own Pace, it’s not a competition it’s about how comfortable your feeling about things, it’s not about how other people want you to feel. Its okay to say that we miss our old lives. That we miss who we once were. And it’s okay to be angry, sad or say that life is unfair. Because, sometimes it is.

So for right now in this moment I’m stubbornly throwing my wheels up at all this change it’s not bettering my life if anything it’s put my wheels in reverse!

Everything definitely is and feels different

But. I will find a new ‘Normal’ because like I always do I will do thing in my own time move at my speed.

Kisses K

Have you found your new normal or still looking for it?? Leave me a comment I’d love to know.

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Feeling anxious about returning back to normal

Barriers we face as disabled people

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Freedom is more than Just a state of mind, it’s my wheelchair

Independence. What does that one single word mean to you?

Most people take their Independence for granted – that’s ok because not everyone will stop and think about how in their every day life they are free to make decisions and act on them. Like being thirsty their ability to make themselves a drink, annoyed or bored by something or someone free to walk away, need the toilet to go looking for one and if a big hairy spider sits in the middle of the living room floor staring you down you can run away screaming and waving your arms like an idiot or just grab hetty the Hoover!

From the moment we’re born this is the first glimpse along the road to Independence from our first attempts at crawling, right up until our bodies don’t want to play at life anymore. We gain abilities to explore, learn and interact with our surroundings and other people – these are all hugely important parts of shaping who we are and understanding the world – right?

Learning the value of independence throughout our lives. We grow from dependent babies into ‘hands into everything’ exploring toddlers through to ’know it alls’ rebellious teenagers, finally making our way as independent adults into the big wide world.

But wholeheartedly most people won’t have even given the process a second thought, and like I said before that ok because why would you unless life didn’t quite go as it was meant to.

What if that Independence wasn’t there anymore due to an injury, an illness or a disability that didn’t disappear? Your environment would suddenly be your biggest enemy, that drink and toilet suddenly become unreachable.

This is my world along with thousands of others – I have a Progressive muscle-wasting condition called Myofribillar Myopathy muscular dystrophy – my experience of an independent world has greatly changed over the years growing up learning how to function as a free independent adult to now experiencing solely reliant on other adults for my Independence. In a way as each year passes I’m missing out on far more than just being mobile.

To me freedom is definitely more than just a state of mind my powered wheelchair symbolises freedom, independence and empowerment. It gives me that sense of control back in a life that I have to solely rely on others for help, it enables me to see the world differently but still see the world, I know first hand just how much difference the right wheelchair can make to one person’s life. It may only look like a piece of equipment with wheels you sit your bum into to you, but it’s this bit of equipment that gives me my legs back. So yes this bit of equipment is so important and key to having my freedom and independence.

Kisses K

What gives your freedom and Independence I’d love to hear from you leave me a comment.

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Campaigning 101

Over the last 3 years campaigning has become such a massive part of my world, which got me thinking about all of you, yes I think of you all on the odd occasion don’t get too excited now!

Have you ever thought about starting your own campaign or just wanting to get involved in a campaign/ing but just not sure where to even start. Well look no further here are a few helpful little tips I’ve found that have helped me along my campaigning trail.

START A CAMPAIGN

  • Find a campaign to start advocating for that you’re passionate about I.e Changing Places or carers rights for instance, but there are so many great campaigns already going it’s just a case of picking one you want to get involved in, in your Local Area. You might already have something in mind you feel needs attention.
  • Once you have your campaign your next step is to write an email to whoever has that YES power or who can pass it on to the person who’s in charge for the facilities for your campaign.
  • Share with your friends and family your campaign, social media is such a powerful tool these days when it’s used In the correct way.
  • Arrange a meeting your story is the most powerful tool you have when campaigning, sharing it in person even more powerful.
  • Contact your local newspapers tell them what your up to and why your campaign is so important. You can even see if there is an online local newsletter as well.
  • Start an online petition for your campaign or see if you can share one already established, then share your story along with the petition at the same time.

Well, that’s me, for now, I hope these little tips have helped you get your campaigning juices Flowing, feel free to reach out to me and share your campaign I’d love to hear how it’s going or what campaign you’re going to start.

Until next time thanks for popping by and reading!

💋 Kerry

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Rolling up your sleeve – Free Flu jab

It’s that time of year again, even though it feels like yesterday I was last jabbed in the arm – most of us are use/waiting to receive a text message or a call from our GP surgery inviting us for the annual arm jab. This year will be very different when it comes to having a flu jab the government and NHS have extended the annual free Flu vaccination scheme in England to reach more people. With the ‘possibility’ of a second-wave of Covid-19 to hit during Flu season this winter,

My opinion, it’s hugely important to get vaccinated but that is just me having muscular dystrophy a Progressive muscle wasting condition just catching a common cold can be deadly so the flu just the same. But as much as I feel it’s incredibly important there are a few people that don’t feel comfortable having or have a reaction to the Flu vaccination.

What changed

The minimum eligible age has decreased. Children in year 7 will now be eligible and anyone who is on the shielding list and their household members.

  • adults 65 and over
  • people with certain medical conditions (including children in at-risk groups from 6 months of age)
  • pregnant women
  • people living with someone who’s at high risk from coronavirus (on the NHS shielded patient list)
  • children aged 2 and 3 on 31 August 2020
  • children in primary school
  • children in year 7 (secondary school)
  • frontline health or social care workers

Over time the list has evolved as more groups have been added and individuals by their GP or specialists. Normally if you was classed as an extra on the list you would have to get special permission from their GP for the Flu jab. Crazy I know as I see it if you need or want to protect yourself or loved ones you should be allowed.

Why should you roll up your sleeve and get vaccinated against flu?

Influenza (Flu) is a potentially serious disease that can lead to hospitalization and sometimes unfortunately death. Every flu season is different, and the flu can affect people differently, but It does affect millions of people every year, hundreds of thousands of people are hospitalized and thousands to tens of thousands of people die from flu-related causes every year.

An annual jab in the arm protects you from catching the flu and spreading it to others, which may help lessen the burden on hospitals and medical staffs.

It gives people a sense that there are some things you can control

Old wives tail – people have believed in the past that the flu vaccination contains the flu it is made with inactivated (“dead”) or weakened viruses, which are not infectious, However, a flu shot may cause slight flu-like symptoms that can last for a few days, such as: mild fever. a headache

Your GP should contact you about your Flu vaccination but it is important to speak up if you feel you may have been forgotten. You may have been added to the shielding list without your GP’s knowledge. If you’re still unsure about the flu vaccination speak to your nurse or GP get more information from them, they are after all the experts.

Happy arm jabbing when your time comes

💋 Kerry

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Sharing in times of need.

Being disabled sometimes comes with a short or long list of needs It can feel like a military operation just leaving the house – well that’s if you’re anything like me and that doesn’t include my Mary Poppins handbag with the kitchen sink! Whether it’s equipment or supplies it’s not something we can just say ‘oh well it’s ok if we run out or leave behind’ so what happens when you do forget or can’t get supplies what then??

What if I told you there was a way? What if I told you there was an online charity that was designed for just that ‘time of need’ made up of individuals who are willing to help others by providing missing care consumables and specialist disability equipment in unexpected times of need.

So what’s this charity called??

Skiggle

A little about them – Skiggle is a nationwide online charity network of UK-based disabled people, family carers and health professionals. Their ever-growing community is made up of truly incredible individuals who are willing to help others by providing missing care consumables and specialist disability equipment because let’s face it, it’s happened to one of us at some point we just never know when something essential might be forgotten, go missing, or need replacing.

So, whether you’re running out of specialist feed, continence products or suction catheters, with Skiggle, there’s a community ready to come to your aid.

What does Skiggle offer.

SOS – Their website is connected to an SOS system where members can request care essentials immediately in unforeseen circumstances, free of charge, from someone else’s surplus supply.

Marketplace – They also have an online Marketplace where items can be bought, sold or offered for free. For personal safety and the safety of others, members will be asked to agree to our terms and conditions relating to the movement of products when signing up.

Anyone wishing to use the Marketplace following the loss of a loved one whether it’s a disabled friend or family member, they will add their Bereavement Angel to items this will help to ensure that any transaction is handled sensitively.

Facebook – Looking for advice or support? Their Facebook page is a very popular space where families and carers can chat, ask questions and recommend products to each other.

Skiggle is a unique name, for a unique concept

The reason behind the name –

A family brain storming exercise one Sunday morning with Christine’s two girls looking at a domain website. They all wanting a name that really stood out, then Christine’s youngest (7 at the time) thought of the name Skiggle it sounded a bit like Giggle. And there you have it a unique name for unique concept.

The story and people behind Skiggle

The mastermind behind this great online charity Is Christine she’s the mum of Will who has quadriplegic spastic cerebral palsy.

  • Christine -founder and charity manager
  • Helen – charity development manager

The charity development manager – Helen is Will’s carer she has been with Will of the past 7 years.

Both Christine and Helen care for will’s full- time, all while they co-running the charity on top of their care duties. Christine is a former dog groomer and cattery owner, and Helen is a former lighting technician in UK theatre.

The story

The charity was formed through personal experience: here’s Christine story in her own words.

“It all began one family holiday. We were going away for a few days, so we packed the car with all the usual holiday kit. In our case, clothes, food, buckets & spades, and everything Will would need; medication, continence products, feed, breathing equipment and extra clothes for the inevitable mishaps.

Excited, we set off on our family adventure! The holiday started brilliantly until we realised we had forgotten to pack a box of milk feed; feed that Will is reliant on and needed imminently.

Panic! What do we do now?

I rang the out-of-hours doctor. After three hours of trying, she was unable to get the feed and instructed us to drive home or check Will into a regional children’s hospital. We didn’t want our son to spend our family holiday in hospital so, to avoid infection, we made the trip home to collect what was needed.

Following this experience, my husband and I thought; if only there was a space to store everything we could possibly need, accessible any time, day or night. But who would fund it and where would it be located? No single location would be suitable.

Then a light bulb moment!

Many carers of people with additional needs have a ‘space’ in their own home. A garage, shed or spare room where everything they need for their loved one is stored. Someone, somewhere near us could have almost certainly helped by lending the feed we needed to get us through our short break. If only we had known who to ask or where to find them.

That’s when Skiggle’s SOS messaging service was born. An online community ready to help those in need and a place where you can find help when you need it most.”

What Skiggle means – Skiggle means extra grey hairs and a developing gin habit for both Christine and me, but it means offering a lifeline to people around the UK living with disabilities by giving them somewhere to turn in times of unexpected need.

I had the amazing pleasure recently in meeting via zoom these two incredible ladies. The passion that came through from both of them was just heartwarming and infectious, I could’ve totally spent the day just chatting about everything and nothing with both Helen and Christine. I can’t wait to see this online charity go from strength to strength helping hundreds of disabled people and their families in their ’time of need’.

Have you come across Skiggle or what are your thoughts about Skiggle? Feel free to leave me a comment I would love to hear from you

💋 Kerry

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Challenging myself – while fundraising for Muscular Dystrophy

Three weeks ago I came across a post on social media by Muscular Dystrophy UK, they were launching their big 60 challenge. Now normally when I see any fundraising events it’s either something to do with running or jumping out of a plane – unfortunately having Muscular Dystrophy myself I need to know my limits and running is definitely not one of them jumping out of a plane, on the other hand, I would definitely be up for by my husband might have a heart attack if I even mentioned it!

Thinking that this was an events that I couldn’t get involved in – until I read the words the ‘event for everyone – no matter your age or ability, where you live or how much time you can commit, anyone can take part!’ It was like music to my ears finally I can get my thinking cap on and raise some money for a charity that is so close to my heart.

My Challenge

For six days straight I got my legs out now don’t get too excited not in the way that you are possibly thinking!! – Over six days I did 10 minutes on my pedal bike making it 60 minutes altogether over 6 days.

An electric pedal bike

On my fifth day I even had a special guest join me all the way in Cornwall my very best Cornish favourite human being Ross Lennon from A life on wheels which was amazing. It definitely gave my fundraiser a nice little push that it needed, and to have his support was even better.

My friend Ross on his pedal bike

My challenge is now complete my legs feel like jelly and definitely need a little rest but I’m so glad I reached my goal and target, I set my sponsorship target of £200 and I smashed it thanks to so many wonderful people that have supported and sponsored me through this cycle journey. To date I have managed to raise £342 which will go towards supporting the thousands people living with Muscular Dystrophy and their families.

I know this might sound crazy to some but I definitely feel like I’ve achieved something that I’ve wanted to achieve for so such a long time now, being disabled I am very limited to the types of fundraiser that I can do like I said at the beginning running definitely is not my forte!

It also wasn’t just about fundraising for me, it’s been a long time since I’ve really pushed myself out of my comfort zone pushing my body and mind. Having muscular dystrophy myself a progressive muscle wasting condition I knew I was probably going to have to push my body though the tiredness/fatigue testing my mind at the same time,

But i’ve always said that I would never let my disability stop me from achieving anything that I want to achieve yes it may have taken me six days, yes I have push my body more than I would on an average day, but if we didn’t test ourselves every now and then how would even know our limits.

Why the name big 60?

For more than 60 years muscular Dystrophy UK have been there funding world-class research and supporting families living with over 60 rare muscle-wasting conditions. Unfortunately like most charities, MDUK has been affected massively though COVID-19. it’s important to keep charity like MDUK going for years to come because of the massive work they do help not just people like myself but for the hundreds of families out there living with Muscular Dystrophy and for the not yet diagnosed.

💋 Kerry

Here my end video hope you enjoy because I’ve had a blast.

A roundup of my Big 60 Challenge over six day’s

My just giving page

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My life with Myofibrillar Myopathy – Muscular Dystrophy

Lately, I’ve spoken a lot about having a rare form of Muscular Dystrophy a progressive muscle-wasting condition – If you’ve been following my journey you’ll already know and if not welcome.

I’ve never really explained in detail the type of rare Muscular Dystrophy I have and how it affects me so It’s probably time I explained a little bit about my MD maybe you know someone with MD. Or, maybe you’re new to the world of Muscular Dystrophy.

You might be surprised to know according to the muscular dystrophy UK website there are over 60 forms of muscular dystrophy – It’s a large misconception that Muscular Dystrophy is it’s own disease, but in reality, it comes under the umbrella term for several types of muscle weakening diseases. Certain types of MD can appear to be very similar but at the end of the day, all are unique and affect each individual differently.

The type of MD I have is called FHL1 Gene mutation – In other words, I’m a superhero! that comes under the family of Myofribillar Myopathy. There are different types and my type happens to fall into this category. The FHL1 gene provides instructions for making 3 versions of a protein that plays an important role in my muscles for movement (skeletal muscles) and in the heart and other Muscules within the body, You can’t just have Muscular Dystrophy you can have a type of Muscular Dystrophy.

What are Myofribillar Myopathy?

Myofibrillar myopathies are a group of conditions called myopathies that affect muscle function and cause weakness. They primarily affect skeletal muscles. A weakening of the heart muscle is also common.

Symptoms of myofibrillar myopathies can vary widely and affect each individual differently, even within the same family, for instance, my brother was diagnosed at a very young age, my mum late teens and of course myself 24. Typically depending on the underlying genetic within the family. Most people with this condition begin to develop muscle weakness (myopathy) in mid-adulthood. However, symptoms can appear anytime between infancy and late adulthood.

Common symptoms

People with myofibrillar myopathies can experience weakness in the muscles of their hands, arms ankles and calves, frequent falls caused by weakness in their feet (I always remember my friends saying it was like watching a tree fall in slow motion!) – as a progressive muscle-wasting condition weakness in the muscles closer to the body can also develop muscle pain, joint stiffness and abnormal side-to-side curvature of the spine (scoliosis).

Muscles responsible for speech and swallowing can also be affected leading to swallowing difficulties even changes in the tone of voice. Breathing can also be affected and get weaker, causing difficulties and leading to respiratory problems. You’re heart being a muscle also you may experience problems that can be mild or severe.

So now you know a little bit about my type Muscular dystrophy how does it affected my life – I can no longer walk but stand with help, rely heavily on a powered wheelchair as my new set of legs. My spine is slightly curved, my tummy leans to the left, i’ve learnt to become ambidextrous because I’m naturally right-handed and now my right hand and arm doesn’t work as well as my left. My heart likes to skip a beat every now and then but if my hubby asks it’s obviously for him! And my lungs don’t let me screen the house down which my hubby loves but my face will happily tell you mood I’m in. All in all I class myself as one of the lucky ones I don’t have any real pain and try to live a happy healthy life embracing my muscular Dystrophy as part of my identity.

I hope this has given you a little insight in my type of muscular dystrophy. As MD can affect just about anyone, most types are genetically inherited. I say most because another misconception is that they ALL are genetically inherited.

We all have our unique thumbprint within a world of billions that’s makes us 1 in a billion.

💋 Kerry

Do you have muscular dystrophy or know someone? I would love to hear from you.

Disclaimer: I must emphasise that the following information is representative of my own personal experience.

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Being disabled doesn’t automatically mean I should be depressed

I’m one of those really annoying people that you meet/see that constantly smiles about absolutely nothing and always says hello to a complete stranger as I’m wheeling past. I think I’m a happy go lucky person that tries to see the positive and not the negative in every situation, I try not to sweat the small stuff – picking each battle as I go along very wisely.

My glass is always half full, not half empty!

So why do some people think that just because I’m a disabled person I should automatically be depressed, I’m praised because I “keep smiling despite all that I have” – yes I’ve experienced a life without muscular dystrophy but I’ve spent more of my life living with muscular dystrophy, Learning along the way to accepted and embraced it as part of who I am.

Every so often I encounter strangers who say “look at you smiling away with all that you have”. I usually respond by saying thanks life’s not that bad while laughing, because I truly don’t understand why someone would automatically think my life is full of doom and gloom. Yes, of course I have bad days who doesn’t just because I’m disabled doesn’t mean I’m not like every other person out there,

But how do I explain my internal battle, how do I reveal a ‘weakness’ when people already see a very visible one. because if I let my inner ‘weakness’ out for everyone to see then it will become part of my reality, a bit like someone who invades your space and doesn’t get the hint to leave. Even more so how can I make people understand that my disability isn’t what triggers my mental health?

Muscular dystrophy is a progressive muscle-wasting condition of which I have a rare form of [Always knew I was rare one!!] it wasn’t something I was born with but it was already in my genes and didn’t become noticeable until my late teens. I know what both worlds look like standing and sitting. Yes it was hard at the beginning to really accepted and embraced my new life as a disabled woman but It is part of who I am, so how can I dislike or reject it? It would be like rejecting and hating myself over something I had/have no control over. I would definitely rather love myself than hate myself.

When you say this to people, I can see the disbelief behind their eyes and that look of pity slowly comes across their face, all while thinking ‘we know you aren’t happy because of your disability, and just trying to hide it’. Maybe my face is telling a different story to what I’m thinking who knows? Having a disability does not have to affect your quality of life – my quality of life is only affected by the lack of accessibility, inclusion and knowledge within the world. (Please remember this may not be the case for all as one size doesn’t fit all).

It baffles me people can’t see there are so many other factors that will affect your mental thoughts, like childhood trauma, relationships. It can sometimes feel like your constantly ‘fighting’ a new daily battle; for instance, whether it’s for acceptance, a job, new equipment or your age because people believe you should have a short shelf life. and you know it’s your disability that is being rejected. Missing appointments or events because you can’t find a taxis or they won’t stop because of your wheelchair.

My question why are some so quick to blame the disabled Community, is this not an outdated attitude? More importantly, why would people really want me to be miserable because I have a disability? In reality, it is them that have the problem with my disability and not me!

Any advice to be given would be to look at the person, not their disability. Look at our inner characters, not our appearance, talk to us. Get to know the person inside not the person you automatically see. Do all of that before making sweeping assumptions based societies stereotypical beliefs that have been ‘taught’ throughout the years about being disabled.

As the saying goes don’t judge a book by it’s cover!

Over the years I have worked hard – learnt that talking and writing about my mental health has not just been beneficial to myself but also to others in similar situation.

💋 Kerry

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Is it disability or accessibility – The social model

This is a subject that I’m coming across a lot more lately whether it’s online or in conversation – the social model of disability. What does it actually mean? Many people that are disabled see it in different ways, why because one size doesn’t fit all, in other words, each person’s disabilities affects them in different ways – for one it could be a pain aspect then for another it’s accessibility.

The social model of disability identifies systemic barriers, attitudes, and social exclusion.

The social model of disability is based on two distinctions between the terms impairment and disability. The word impairment is used to refer to the actual attributes (or lack of attributes) that affect a person, such as the inability to walk or breathe independently. The word disability is used to refer to the restrictions caused by society when it does not give equivalent attention and accommodation to the needs of individuals with impairments.

In other words – example, if a person is unable to climb stairs, the medical model focuses on making the individual physically able to climb stairs. The social model tries to make stair-climbing unnecessary, such as by replacing the stairs with a wheelchair-accessible ramp. According to the social model, the person remains impaired with respect to climbing stairs, but the impairment should no longer be considered disabling in that scenario, because the person can get to the same locations without climbing any stairs.

As a disabled woman, I try very hard not to make my impairments an inability but in the same sentence as a campaigner for disabled rights who fights for better access in a world that is still struggling for inclusion, it hard not to see that it’s not my impairments that’s the problem it’s the accessibility.

Councils, high street shops, homes, supermarkets even the government have been for years denying accessibility and passing g the buck on each other – expecting someone else to provide a facility they could easily provide, to make it more inclusive for the disabled world that are just asking for better facilities.

Many people seem to have this misconception if somewhere says it’s ‘accessible’ it automatically means it has a ramp, maybe electric doors or a lift. But that doesn’t make somewhere accessible, It simply just means you can get in. Being fully accessible means you have to catered to ALL walks of life so that everyone is able to enjoy the venue and access the same things, regardless of ability or non-ability. And as an ambassador for purple Tuesday – the purple pound is the spending power of disabled people and their families – is worth a staggering £249 billion and is estimated to be raising by 14% per year.

In the words of Jack Sparrow, “The problem is not the problem, the problem is your attitude about the problem”

And this is where lies the problem the law is outdated and out of touch with the disabled Community, when you have non-bodied people trying to navigate a world they have no experience in. This just allows people to interpret what suits their building/business, which in some circumstances is understandable as what may be reasonable for a multi-billion pound company may be extremely unreasonable for a small newsagent for example.

The lack of knowledge and understanding has meant that people with all different types Impairments are still being treated like second class citizens in their communities. We are not treated as equals and are left feeling unwelcome in many places. And it’s not just the disabled person who feels this way, it’s also our families and friends that feel the frustration.

Having Muscular Dystrophy a progressive muscle wasting condition means I cannot visit places for any length of time unless I can get my powered wheelchair inside and they provide a changing places facilities, yes we all knew at some point I was going to mention my favourite subject, if you’re not sure what a changing places toilet is – it provides a bigger safe space for more than one care giver, a ceiling hoist, toilet central to the wall making it easier to transfer from either side and high adjustable adult size bed. A standard old style ‘disabled’ toilet may work for some but it’s an outdated facility whereas a changing places toilet can be used by ALL with visible or invisible disabled people.

The Government announced on the 19th of July 2020 – new legislation was passed making it compulsory now for any new large builds a changing places facility will need to be built within.

The passing of the buck will never completely disappear unfortunately as Society finds it very easy to pass blame on to people with impairments as the problem. Because taking responsibility for the lack of accessibility is a concept some people find very hard.

I will leave you with this thought – The disabled population is the largest minority group on the planet – it is also the only minority group any one of us could join at any time.

What are your thoughts on the social model of disability? Feel free to leave me a comment I would love to hear your thoughts.

💋 Kerry

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Having a disability isn’t a weakness

Having a disability isn’t a weakness, it should be seen as a strength.

What does the word disability mean to you?

When you look at someone with a disability what do you see strength or weakness. Is the first thing that pops into your mind ‘oh bless it must be hard’ or ‘I’m glad I’m not them’ or how can they add anything to Society.

I have a rare form of Muscular Dystrophy and progressive muscle wasting condition, I was diagnosed at the age of 24 but before that the signs where already showing from a teenager, first came the limp then the muscle weakness gradually got worse and worse I’m my arms and legs. But I’ve always believed it should never hold me back from anything I want to do, yes, I might take longer to do certain things and of course, there will be things I can’t actually do like run a marathon but with careful planning why can’t anyone with a disability achieve anything,

My disability doesn’t define me. I just happen to have muscular dystrophy it just part of my identity.

As someone with a disability over the years I have faced many people telling me ‘I can’t’, even my own husband has in the past he obviously knows better now! These are just a select group that don’t know you or your disability that will openly tell you, you can’t or bully you because of your disability. This just drives me even more, so I can wheel on by saying sorry what did you say, I can’t what!

A bruise will heal, a cut will heal, but when you let somebody take away who you are, it’s more damaging than any broken bone and deeper than any cut.

Disability is sometimes perceived as a negative [sadly, generally by people without a disability. Viewed as the worst possible thing that could happen to someone. But your wrong it’s so far from it. The word “disabled” can be seen in a good light. Look at all the amazing disabled athletes, movie stars, with so many amazing people out there that have a disability just talk to one and you’ll see. There’s nothing wrong with being disabled, Disability is not an ugly word. Disability isn’t a bad thing.

I certainly wouldn’t be in the position I am in today without my disability and be able to utilise what I know about living with muscular dystrophy, I wouldn’t of started my blog, become a disability campaigner or won awards, everything I have achieved is, yes because I’ve worked hard but it’s also been achieved living with a disability.

I will never let my “disability” get the best of me. I, myself, don’t see my body as disabled. I look at muscular dystrophy as a little bumps in the long road we call life.

Having a disability doesn’t mean we don’t add to Society we can still get married, work, have sex, have children.

It’s time to show people that disability has ‘ability’ in it. People look at a disability as a weakness but it should be seen as a strength. The representation of disability needs to be improved. If we can make this happen, we will in turn help change attitudes towards disability across the world.

So. The next time you look at someone, think about what they could be going through. Whatever their disability might be, don’t think for a second it will hinder their performance. Who knows, maybe they’ll teach you a thing or two.

💋 Kerry

Have you a disability how do you see it as a weakness or strength?? Feel free to leave me a comment I would love to hear your opinion.

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The barriers we face as disabled people

Have you ever had a moment where your face tells a thousand stories, that real eye-rolling moment in a conversation when someone says ‘oh I know just how you feel I once had an injury and couldn’t do anything for weeks’, I don’t know about you but I can pretty much tell when someone is about to say something along those lines and I’m thinking ‘please don’t say it, please don’t say it’? nope. There it is, you totally said it!

I spoke about ‘Ableism’ in my last post and this is one of those moments but not in a nasty way more of a they just didnt think before opening their mouths. As a disabled woman living with muscular dystrophy a Progressive muscle wasting condition I know the barriers, I face with a disability, as I’m sure most of you do. So what are the biggest barriers we face?

5 Biggest Mobility Barriers For People With Disabilities

Accessibility – The Physical barriers in our lives can be a huge stress to anyone with any disability that can cause anxiety, depression even feeling segregated from the world. it’s not a question of having the ability to go out it’s a question of does the restaurant, shops, GP surgeries, working environment even a toilet have the right access. When you’re faced with Physical barriers it can be down to the simplest of things like steps, stairways, kerbs, escalators and paving. If you cannot access the entrance of that shop or go to work because of a narrow doors or steps your facing a barrier that your unable to defeat.

The law has prohibited discrimination against Disabled people for more than 20 years, and yet we still face many barriers and sometimes find it impossible to access services. This is largely because it is left up to us to enforce this law.

By taking action to combat discrimination, you don’t only make changes for yourself: you are improving things for other Disabled people.

Public transport – Disabled people face considerable challenges when it comes to public transport from bus drivers not willing to take down the ramps, the bus being too old, forgotten on a train or no access to the platforms even staff refusing to allow you on. The lack of wheelchair-friendly taxis can even pose as major barriers.

1 in 4 disabled people say negative attitudes from other passengers prevent them from using public transport, while 40% often experience issues or difficulties when travelling by train in the UK,

Work environment – The barriers faced by disabled job seekers will vary from individual to individual, the first barriers many disabled people face is the simple act of disclosing their disability. It brings a fear that this disclosure may lead to discrimination. Employers are also under a legal obligation to provide reasonable adjustments for their disabled employees, but what is provided varies from employer to employer. some disabled people rely on PA’s [Personal Assistances] or carers and require some level of care during the work day but frequently care packages, provided by Health and/or Social Care within a local authority, aren’t enough to cover them.

The government’s Access to Work grant goes some way in covering specialist equipment and support but many aren’t sure what support employers should supplement and Access to Work is only available for paid employment – those working on a voluntary base do not receive any help.

Accessible housing – With a chronic shortage of suitable housing some disabled people are feeling trapped in unsuitable homes. There are over 400,000 wheelchair users in England living in homes which are neither adapted nor accessible, according to a Habinteg estimate, which will only add to the pressures on the health services, and local authorities.

Just 9% of English homes currently provide even the most basic accessibility features.

Disability awareness – A lack of understanding and awareness of disability is also a significant obstacle; nearly half of non-disabled people feel that they do not have anything in common with disabled people, and 26 % admit to avoiding engaging in conversation with a disabled person.

13.9 million disabled people living in the UK.

I would love to know what barriers do you face in your every day life? How does it make you feel?

💋 Kerry

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Are you being Ableist – And don’t even know it.

Ableism

This is definitely a word I’m seeing pop up more and more, but this word has always been lurking in the corners as if it’s waiting to say ‘remember me’. It has played a very significant role in all of my life even before I was diagnosed with Muscular Dystrophy because I grow up in a house where my mum has muscular dystrophy.

So what is Ableism – it’s discrimination and prejudice against people with disabilities based on the belief of what Society deems ‘normal’. At its heart, ableism is rooted in the assumption that disabled people require ‘fixing’ and defines people by their disability. Like racism and sexism, ableism classifies entire groups of people as ‘less than,’

For me, as a disabled woman I often find it hard calling someone out or addressing the subject on ableism, just because like many forms of discrimination, it can come from a place of ignorance or able-bodied people with ‘good intent’.

A great example that I have encountered many times is those that do not have a disability believe they know more about someone’s chronic condition or impairment more than the person with a disability. I have a rare form of Muscular Dystrophy a progressive muscle-wasting condition caused by changes in the genes responsible for the structure and functioning of the muscles, there is no treatment or cure.

But I’ve lost count of the number of times I’ve been told by a stranger that I should just build up my muscles with the correct exercise and food. It doesn’t work that way yes exercise will keep the muscle memory but will never ‘build more muscle’. Hold that thought while I go sign up to a gym and solve all my issues.

As much as I’ll make a joke out of it, it’s really not that funny in the grand scheme of things when you look at the bigger picture. I’ve not just grown up knowing this condition it’s now very much my life so I definitely don’t need someone to tell me to ‘exercise more’ As if I don’t know what’s best for me.

Condescending? Yep. Patronising? Yep. Harmful? Absolutely.

Facing ableism every day can be exhausting, and yet we are expected to be something more. We are called inspirational, incredible, superheroes.

Surprisingly we’re not all the same, everyone’s experience of disability, their conditions and symptoms are different and complex. Unless you are an expert on that condition. Probably best to button it, keeping your comments to yourself – Try learning from listening. Telling someone their condition can be ‘Fixed’ by doing something like more exercise to build up the muscles. Is belittling plus it’s also saying they have no ability to make decisions about their own wellbeing.

I’ve also received many messages from people saying ‘I have excellent news have you heard of this a cure’ or I deserve my disability because of something I did in a past life or I should have been aborted. These experiences haven’t been sunshine and roses, plus these are all based on the premise that disability is a bad thing or a punishment. Er, NO. It’s also annoying when people treat you like an infant and not the grown arse woman you see in front of you.

As much as we didn’t pop to our local supermarket to pick up a disability of our choice, don’t just assume we’re all crying ourselves to sleep every night, wishing not to be disabled. Yes, some days are hard than others, but most of my daily struggles come from living in a world that’s not as inclusive for ‘All’.

Just recently I read something where a non-disabled person had an unpleasant encounter with a disabled person ‘they were really rude and snappy with me when I was just trying to help!’ I can almost guarantee that many instances of this ‘help’ could be seen as ableism. it comes down to the ‘thinking you know better than the person with the disability’.

Scope reported that 1 in 5 brits feel awkward about disability.

The reality is ableism isn’t a rarity and this feeling of awkwardness non-disabled people feel just leads to exclusion and why it’s not seen as a huge deal. Disabled people are still just people, we can have our bad days like everyone else, scream, shout even swear, struggle with mental health on top of our physical impairments.

This is probably why non-disabled people feel so comfortable and just shrug off using an accessible facility or parking space when they have no reason to use it, other than it just being convenient for them. Ableism can manifest into verbal interactions like using disability as a punchline or mocking, physical actions or less obvious prejudice, all of which will still have significant impacts on the lives of disabled people.

Getting rid of ableism is to recognise what’s happening to push back against the ideologies and practices and remove them from society, But making sure people with disabilities to the table where decisions are being made.

💋 Kerry

What are your experiences with ableism or have you been ableist and not even realise until now? Leave me a comment.

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Home care agencies neglect and indifferences – Who’s responsible

In 2017 it was reported that ‘social care’ was in cataclysmic crisis.

Disclaimer: it’s important to remember NOT ALL Carers and Care Agencies are the same and this post is just about care at home not care homes.

As someone who relies heavily on having extra help at home due to having a disability with complex needs I have experienced having a council sent care agency as well as a private care Agency. But I’m sure we have all watched a documentary or read in the news a horror story about having home care and the level of care people have received probably with your mouths wide open, hitting your social media platforms in utter disgust that people are actually treated this way, all while screaming at the TV! Or you could have you own horror stories.

Last week I sent out a message on my social media asking people if they didn’t mind sharing their experiences with me of having care agencies who provide their care at home, It was a mix of good and bad but mostly bad. It seems to be a common frustration with most people that use care agencies the lack of –

  • Communication (language barrier)
  • Skills
  • No Basic knowledge
  • Respect
  • Common sense
  • Lack of Training
  • Lateness
  • Jobs never completed
  • awareness

but in the same sentence, some people’s needs were met and they had nothing to complain about.

There are an estimated 13.9 million people living with a disability in the UK.

What is adult social care?

Adult social care covers a wide range of activities to help people who are older or living with disability, physical or mental illness live independently. It can include ‘personal care’, such as support for washing, dressing and getting out of bed in the morning, as well as wider support to help people stay active and engaged in their communities. Social care includes support in people’s own homes (home care or ‘domiciliary care’); support in day centres; Social care is often broken down into two broad categories of ‘short-term care’ and ‘long-term care’. Short-term care refers to a care package that is time limited with the intention of maximising the independence of the individual using the care service and eliminating their need for ongoing support. Long-term services are provided on an ongoing basis and range from high-intensity services like nursing care to lower-intensity community support. Both long and short-term care would be arranged by a local authority and could be described as ‘formal’ care.

In 2018/19, 841,850 adults received publicly funded long-term social care, primarily in care/nursing homes or in their own homes. In addition, there were 223,605 episodes of short-term care provided.

When I was reading everyone’s comments some of the stories were heartbreaking to read, Disabled people with complex needs are being put in dangerous situations because of the lack of knowledge and skills.

Here are a few examples (Disclaimer these are the words others, not myself),

  • Most didn’t like staying for the full length of time but expected to be paid for it. No training in regards to using vital equipment. Carers are given no information except name and address when going to someone for the first time. Lack of communication, Lack of knowledge in regards to mental health issues. Being taken advantage of my memory problems. Not willing to help with basic home hygiene. Lack of respect/understanding/common sense. Carers using your equipment for their needs.
  • No awareness of the emergency situation around them I.e losing consciousness because the carer had communication barrier and didn’t have the knowledge and skills in how a ventilator worked.
  • I don’t consider myself complex at all but due to my need/ wishes but angecies don’t seem to cope with understand my needs it varies from day to day, carers are used to working with the elderly and know what they are doing and what they need. The lack of knowledge mean that i been stopped from standing as they assumed i couldn’t walk (and forgot) people from the office have always worked against me rather them with me.
  • My experiences of having Carers for a year employed via the council. Left me very vulnerable more than once. Not much good to say I’m afraid!
  • I’ve been left without care again this evening as they arrive early they never arrive on time. Often hours late or early and just expect me to be ok with it. I’ve lain on the floor for hours or had no medication or food multiple times.
  • I’ve been bullied, left hanging in pain in a hoist while they make themselves a cup of tea, gone with out fluids and food for ever 12 hours. I’m bed bound and been left in the same position for hours because the carer didn’t have the skills or knowledge to under what I needed.

And these are just a few examples of what disabled people have/are going through, even just having to write them all down after reading them again infuriates me at the way people are treated when you rely on care 7 days a week, 24 hrs a day, 365 days of the year. But yet your you’re expected to be treated this way and grateful for the care given. This will be hugely detrimental to anyone’s mental health and wellbeing when already faced with everyday struggles of living with a disability.

Unfortunately, you can’t teach common sense or awareness that is down to the individual but the Agency is itself can make sure that the appropriate training and knowledge is given before sending somebody into care for someone that relies heavily on their help for their care needs.

We also need to remember that For every bad carer out there, it does unfortunately reflect on all the amazing carers that do the job because they care and enjoy the job it’s not just a job to them.

My question is who is accountable. The carers? For their actions or The administrators of these care agencies or the local authorities like commissioning support units and CQC Care Quality commissioning. Surely more can be done, yes.

💋 Kerry

I would love to hear what your experiences with having care at home? Good or bad? You might even be a carer with your own story to tell, feel free to leave me a comment.

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Overcoming negative body image – when you have a disability

Overcoming negative body image is never easy, even harder when you have a disability.

Have you ever compared yourself to somebody else? Yep me too. So many of us are guilty of obsessing over our bodies or what other people think and the way we look. With social media platforms like Instagram, Tik-Tok and YouTube you can’t help but look at others and what new trendy, look, weight loss program or treatment to make you look good is out.

As a teenager growing up in the 90’s it wasn’t much different to now, the only difference is we didn’t have social media, yes that is correct NO SOCIAL MEDIA I’m sure all of you under 25 would find that a very strange concept! I always remember my mum saying to me as a teenage ‘it’s not a fashion show you know’ I never understood because all I wanted was to look like all my friends, they always came across full of confidence and I just wanted to be the same. Obviously all grown-up now it makes total sense what my mum was saying, I never had a school uniform so it definitely was a free for all on what everyone was wearing and how they looked. I mean fruit of the loom and high ponytails was a big trend in my day!

We are our own worst critics.

My early 20’s I found my body confidence with the attitude of ‘I don’t give a f**k’ i loved my body how I looked I had found my identity as a woman I felt sexy, it wasn’t until late 20’s when I was diagnosed with a rare form of Muscular Dystrophy A progressive muscle-wasting condition, as I started fighting with my body more and more my body confidence gradually disappeared especially when I started using my first wheelchair. It slowly became a downward spiral in how I looked at yourself I wasn’t that sexy blonde with the ‘I don’t give a f**k’ attitude anymore, I now looked like I was carrying triplets and 3 dress sizes bigger.

It’s been a long road to love myself again – I still struggle at times.

With a real lack of relatable bodies within the media and fashion industry, it is even more difficult for people with disabilities to have a positive body image. Especially when Society tell you disability doesn’t scream sex appeal, plus I don’t know about anybody else but I find this Constant battle with our bodies is exhausting and so unhealthy.

A survey done in 2019 by Muscular Dystrophy UK found that 80% said the body image had a negative impact on mental well-being.

Loving our bodies can be so hard when Society sometimes doesn’t allowers, with people still thinking it’s acceptable to body shame someone’s image. The term ‘body neutrality’ has become more popular after being used by activists such as actor Jameela Jamil who started the movement called ‘I Weigh’ the aim is to understand that loving our bodies isn’t always realistic and having days where you don’t is OK – it’s about finding the balance. In the grand scheme of things it’s definitely a better and healthier way to look at yourself .

But. As much as I agree I think it’s harder for someone with a disability to not forget the role their body plays in how you live your life, you can’t just pack a disability away in the cupboard, so sometimes it’s not as straightforward to just detachment mentally from your body when your body lets down. For disabled people to truly feel confident, beautiful, valued and proud of who we are there needs to be more than a few movements to tell us that we shouldn’t give a sh*t what people think and that loving ourselves is okay.

So let’s show the world just how fabulous, beautiful and fierce disability is, and we need to see society embrace disability – not turn away from it.

💋 Kerry

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A letter to my 10 year old self.

I have always loved the thought of being able to travel back in time to maybe the roaring 20s or the flower power age of the ’70s, even 18th Century could be interesting but especially travelling along the course of my own life. I think it’s got a lot to do with recognizing how much my life has changed — from who I was as a 10-year-old girl to who I have become and how my experiences have shaped me to who I am today.

So here goes.

Dear 10 year old Kerry.

Hi – I’m your 41-year-old self. Don’t freak out, I know I seem really old and I promise to try to keep this brief because if I told you all the ins and outs of the last 31 years you’ll probably question how we’ve even made it this far. Surprisingly mum was right, as you get older you really do get wiser. We’re definitely not we’re we thought we would be living the country village life surrounded by horses.

Life has been full of surprises, twists and turns, I’m looking at you now playing roly-poly and cartwheels in the back garden with grandad and Giles treasure those moments with grandad and give him a big hug and tell him you love him, I know you already have questions of ‘why you’, no one will ever tell you this so I will it wasn’t your fault he was the teacher and adult and you are strong enough to turned it around to not be a victim. I’m sorry to say you will face more ups and downs in your teenage years some great moments and others not so much like being bullied by people you thought where friends and the relationship with your stepdad not great but you find love and calm in riding and looking after your horse Tom just know that everything will be alright and you get through it.

You will live with your dad and his family a few times but it never really works out, he’s a bit of a useless father to you but you end up having a great relationship with one of his daughters later on in life she’ll be a big support that comes as a welcome surprise. some people are just not meant to be in your life and this is okay you will begin to understand when you get a little older.

Mum is your hero She will be there for you through it all helping you even when you doubt it, don’t be scared to tell her about being diagnosed with Muscular Dystrophy at 24 out of everyone mum can help you transition through the hard and dark times. It’s takes you awhile to come out the darkness and truly embrace your disability. You will struggle at times to find your identity while trying to understand where you fit in within Society just don’t be afraid to ask for help and that’s okay. You got this, the family will be a huge support and you find some truly amazing life, long friends, along this journey. You even get married yes married something you tell people for years is never going to happen!

You will eventually find your calling and passion as a disability blogger and campaigner. I could tell you about all the special things that you are going to experience when you become a campaigner but I am going to save that for you to experience first hand. I will say though it’s going to completely change your life and those around you. Plus it’s an incredible journey you definitely don’t want to miss.

This virus outbreak in 2020 is going to be one for the ages. I’m not sure how to quite explain the magnitude of it and put it into words. But you will have to shield yourself from the outside world as well as the outside world from you over 140 days. It’s not going to be easy and you question a lot about life and why Is the disability world such a forgotten world. And don’t worry you will see family and friends again.

Before I say see you in 31 years – Allow yourself to be the best version of you learn from ever experience, never regret anything you do and never let anyone tell you what you can not be. People will try telling you differently and not everyone will embrace you if they don’t like you so what, remember if everyone liked you you’re doing something wrong, so Instead of focusing on those people focus on the ones that do. Your life is going to be full and you will have many moments of laughter, tears and happiness. keep working hard, enjoying life, I’m proud of who you are going to become!

💋 Kerry

What would you say to your 10-year-old self??

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BIG announcements for Changing Places

It would be pretty unusual if I didn’t talk about my favourite subject on today of all days Changing Places awareness day!

My journey with Changing Places started with a blog I wrote in 2017 it seems like such a long time ago but in reality, it was 3 years ago. After reading a blog written by my now beautiful friend Carrie Aimes from Life on the Slow Lane. That was my first introduction to a Changing Places facility where I quickly realised that the years of struggling to use a standard disabled toilet had come to an end. But then it dawned on me the lack of any of these facilities available in the UK from this I found I had a real passion for campaigning for disability rights. And here is where my ‘favourite subject’ begins.

I have been very fortunate within my campaigning work it has taken me in a direction I never thought it would.

With over 1/4 million disabled people and their families with complex needs a standard disabled toilet just doesn’t cut the mustard. With a toilet shoved in the corner of a space too small to move, let alone fit one carer and a wheelchair, a red pull cord and handrails make no difference. Standard disabled toilets are just frankly an out of date toilet that’s not accessible to all.

For me as campaigner when a new changing places facility is built it’s a huge win, it doesn’t matter where it has been built it is still a win and one more to add to the list. Why, because its not just about my needs it’s about how many disabled people’s live will benefit, for the better.

The Announcement;

Today – Changes will be made to legislation to make Changing Places toilets mandatory in new, large public buildings in England. The announcement was made by the Ministry of Housing, Communities and Local Government (MHCLG).

Government announcement

And

More funding will be made available to install Changing Places toilets at 37 motorway services stations. This announcement came from the Department for Transport (DfT).

This incredible news and fills me with huge amounts of joy having access to more changing places toilets means ‘freedom’. For not just myself but the 1/4 million other disabled people and their families. Making a much-needed change the building legislation will make life easier and more fulfilling, having access to a safe space that most people take for granted on a daily basis I.e shopping, cinema and trips out just opens up a whole new world for everyone that needs these life-changing facilities. Having news like this It’s a huge boost to the changing places campaign there is still a long way to go but this is a step in the right direction with every new changing places facility that is built. When I started my campaigning journey myself and many other disabled people had a lot less freedom due to the relatively small amount of changing places available throughout the country.

All these changes are helping myself and thousands of others ”To live the life that we choose, not one that is chosen for us’

This has been long awaited it was first mentioned in June 2018 when Paula Sherriff MP shared my story along with a few others in the 10 minute rule bill in the House of Commons. As I’m sure you can all imagine not being able to shout this news from my wheels has been extremely hard. Plus being apart of something that is changing future lives, is as you know something close to my heart and one of the reasons I started campaigning. Along with every campaigner, I am ecstatic that this news falls on changing Places awareness day.

Announcement made by MDUK

Below are quotes from MDUK CEO & Tesco property manager.

We are delighted with this news. The changes to legislation will improve the quality of life for 250,000 disabled people, and their families and friends. They will have much more access to enjoy what others take for granted – the basic human right of access to a toilet when they go out! This wouldn’t have been possible without the tireless campaigning of so many people. I am delighted for the campaigners, individuals and families that this will benefit.

A quote from Catherine Woodhead – CEO from Muscular Dystrophy UK

I’m really proud to have been involved in driving this change, with changing places facilities now available in more than 75 Tesco supermarkets across the UK. A fantastic achievement and a credit to everybody that has played a part in delivering such an important initiative – yourself [kerry] included.

A quote from Paul Shepherd – Tesco property programme manager

💋 Kerry

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