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

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!?

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

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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