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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Posts you might like to read

Embracing your disability

How Muscular Dystrophy shaped me as a person

Walking to Wheelchair – my story of transitioning

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

Come give me a follow and say hi.

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Posts you might like to read

Embracing your disability

Giving a positive message to new wheelchair users

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

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

‘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

Come give me a follow and say hi.

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Posts you might like to read

Being proud of who you are

Walking to wheels – my story of transitioning

Muscular Dystrophy shaped me as the person I am

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