My summer kicked off back in June with a holiday to sunny Cornwall, and I’m still longing for those soothing sea views.
Living in the landlocked midlands, as I do, situates us far from the coast. So, for me, a trip to the seaside is a real treat.
I stayed in the biggest accessible room I’ve ever seen at a Premier Inn, located in Camborne.
There was enough space to have a party, and the disabled facilities were well-considered. I would highly recommend this particular hotel for wheelchair-users who require multiple carers and mobility equipment, due to the expansive floor area.
Whilst in Cornwall, I spent my days being chauffeured around by a good friend who lives locally. What a lovely obliging boy he is!
In all seriousness, it was great to get away and spend time with one of the few people I can completely relax and be myself with.
The first three days were gloriously hot and sunny, which allowed us to explore Godrevy, Polly Joke poppy fields, Lands End and Penzance.
GodrevyPolly Joke poppy fieldsPolly Joke poppy fieldsAt Land’s End
On the Friday night, we had a mate date in Falmouth where a lively sea shanty festival was taking place. I chucked pizza at myself (unintentionally) and stained my lovely lovely dress. Standard.
We briefly met up with a group of people, one of whom instantly recognised my midlands dialect, which amused me somewhat since I didn’t think I had an identifiable accent. Apparently I do!
She and I talked about how different the Cornish lifestyle is. And it’s true. People seem friendlier, happier and more patient. The pace of life is slower and calmer, and the area itself couldn’t be more of a contrast to what I’m familiar with. It’s a place you move to, not from. Idyllic!
Looking out to sea, Penzance – Following our visit to Land’s EndPosing in Penzance, Cornwall
On the weekend, the weather took a turn for the worse, along with my health. For no obvious reason, my chest played up on the Saturday, and so we chilled at Ross’s place all day – the most immaculate abode I ever did see. Ralphus (the dog) tried to cheer me up by licking my entire face rather enthusiastically. I have to say, it was the best snog I’ve had in a while!
By Sunday, I was feeling much better, so we drove to Newquay with the intention of visiting the aquarium. However, once parked up, we encountered a rather unfortunate wheelchair malfunction. After laughing inappropriately, I grabbed a somewhat confused passer-by for assistance, before making our way home, without saying hello to the aquarium fishies.
Next time, fishies. Next time!
Though sad to leave, it was a much-needed positive start to the summer after a tricky few months.
Cornwall, thanks for the memories. I’ll be seeing ya! ♥
Following a decent run of health, things took a dive in October, with one thing after another.
Covid hit me hard and put me out of action for a good 6 weeks, which meant another November birthday spent ill and alone.
I won’t lie, it wasn’t the best of times. But I do have the best parents who, despite being in their 60s, support and care for me, no questions asked. I don’t know where I’d be without them.
My dad – a man of few words, and the best man I ever did meet – wrote a really touching message in my birthday card, which had me in tears (it was a teary few months!).
As the new year approached, I tried my best to pick myself up and get back to some kind of normal – whatever that means.
Gotta keep on keeping on, right!
2022
Firstly, I dyed my hair from the usual blonde to brunette (wild, I know).
22nd Feb: The first face-to-face appointment with my muscular dystrophy consultant since 2019.
The highlight was buying a shit load of fruit and veg from the market stall on the way out – I know how to live!
The show was magical and this theatre is, by far, the best and most accessible I’ve visited.
It’s been a while since I roamed around Birmingham at 11pm – Such a rebel!
Things I’ve been enjoying
It’s a Sin – Set in London during the 80s AIDs epidemic, this 5-part miniseries has a great cast, a brilliant soundtrack (in my opinion), and the final episode is heartbreaking.
This is Going to Hurt – Having read the book by dry-witted former doctor Adam Kay, I was keen to check out this TV adaptation, and I wasn’t disappointed. It is funny, brutal, tragic and eye-opening. I highly recommend this one!
Lord of the Rings – Now 20 years old, I decided to indulge in a solo movie marathon and revisit this epic trilogy.
Samwise has always been my favourite character. And why? His loyalty is unwavering and unconditional. We all need a Samwise in our lives!
Plus, the actor, Sean Astin, starred in The Goonies (1985), and remember, “Goonies never say die”!
~ BIG 80s fan here!!
Duolingo – At the grand old age of 33, I’m attempting to learn French, (super cool), after dropping the subject in year 9, in favour of German. And this time, I’m sticking with it.
Looking forward…
Spring is now well on the way, and with that comes warmer, sunnier, happier days ahead.
Though I’m no longer able to drive, which is incredibly limiting and frustrating, I will endeavour to get out and about as much as physically possible.
June – I’m off to Cornwall to spend some time with a good friend, and, of course, to see the sea – a rarity for this landlocked Midlander.
August – I’m excited to return to the Birmingham Hippodrome to see Les Misérables (for the second time).
I love the theatre, having seen many shows over the years. It’s one of my favourite things to do.
My last post was the first after a year’s absence!
So, what have I been doing in that time?
Well, I dyed my hair – wild, I know
From blonde (above) to brunette-ish (below)
Went even wilder and got filler + botox…
Making a dick of myself with a filtered selfie
…No, not really!! 😂
Embraced fluffy socks to hide my corpse feet (even when leaving the house!)
Me, sat in my powered wheelchair, wearing comfy fluffy socks
Accidently drove my wheelchair into the bathroom sink, bashing my knee – ouch!
Me and my bloody knee!Me and my bloody knee!
Redecorated my bedroom and deliberated for too long over duvet covers
Failed at knitting so took up crochet
Started learning French through Duolingo. In my opinion, so much easier than lessons at school! Although, to be fair, I did spend most of my time staring out of the window
Learned to play pool…online…sorta…
Went to my first ever supercar fest – Shelsley Walsh Hill Climb. I’ll be honest, I haven’t a clue about cars but it was a fun day and something different
Shelsley Walsh Hill Climb – Supercar FestMe, sitting in my powered wheelchair (held together by tape!), watching the hill climb at Supercar FestSupercar Fest – August 2021
A particular highlight was our accessible canal boat ride through the prehistoric Dudley tunnels, mined during the Industrial Revolution. We got soaked (from the rain; we didn’t fall in the canal), and I ended up looking like Alice Cooper with mascara running down my face. But it was memorable!
The Black Country Living MuseumOur accessible canal boatDudley canal and tunnels
Despite restrictions, I’ve managed to get out and about a fair bit – Roaming around aimlessly in the car, wandering along accessible forest trails, casually entering a local arboretum without paying, and even attempting the Malvern Hills!
Our view from Black Hill, Malvern
Taking on the great outdoors is definitely challenging in a powered wheelchair, and it’s been met with limited success. But, for me, it’s not what you do but who you do it with.
Grabbing a Tesco meal deal with someone you love ♥ is (to me) far more precious than partying with a room full of semi-drunk acquaintances.
Image Description: A wheelchair-user is seen facing a lift/elevator full of able-bodied people. Caption reads, “to you it’s the easy way. To him, it’s the only way”.
As a non-ambulatory wheelchair-user for the past two decades, I’ve experienced many frustrating encounters with lifts/elevators.
~ Being unable to fit inside because they’re occupied by physically fit (lazy, ignorant) able-bodied people
~ Getting stuck in them (once on a very old ferry!)
~ Getting stuck out of them (broken/out of service)
~ Waiting, waiting, waiting…
Image Description: Closed lift/elevator doors with a sign above displaying the words, “lift not in service”
As a teenager, I went shopping to my local TJ Hughes store (super cool!), which was on three floors. It was a crappy old lift but nevertheless I travelled to the top floor because, well, I wanted to!
When I came to use the lift again, it wouldn’t work – it was completely unresponsive.
Unable to walk at all, I was stranded on the third floor in my manual wheelchair.
More than a little irritated, I started hammering the call button on this lift, “you WILL bloody work!!”
It didn’t.
Image Description: ‘No Entry’ barriers surrounding an out of service lift/elevator. A repair man is trying to fix the lift.
At this point, I was left with no other option than to be manually carried down two flights of stairs by a member of staff. Talk about awkward!
Well, it was either that or, frankly, I’d probably still be stuck there now.
Thankfully, I’m teeny tiny, my wheelchair was lightweight and foldable, and the guy who carried me was young and smelt amazing! I was tempted to ask what he was wearing but thought better of it. I’m not that weird…
It was fortunate that I wasn’t in my current powered wheelchair. If I had been, I honestly don’t know what would have happened…forever stranded in TJ Hughes!
It’s a memory that’s imprinted on my mind. It shouldn’t have happened, it was annoying, undignified, embarrassing and yes, at the time, I was thoroughly pissed off!
Although, on reflection, it is pretty funny. Got to laugh, right!
Of course, it made me wary of using lifts in the future. But I really don’t have a choice! I’m not going to avoid them and miss out just in case something bad happens.
It’s inconvenient at the time but always resolvable.
IF I do ever get stuck again, well, then I’ll worry about it…IF.
Side note ~ If you are fit and able, and have two fully-functioning legs, please use them! Kindly take the stairs and let those in need access the lifts/elevators. Ta muchly!
Wealden Rehab Equipment Specialists share the benefits
of having an Occupational Therapist in the team
Care equipment specialist Wealden Rehab works alongside in-house and external qualified occupational therapists (OTs).
Our in-house OT, Gayle Cardwell has 20 years experience, benefiting the team with clinical skills that can
be transferred into private practice. The collaboration between care equipment
providers and clinical experts results in a truly personal service.
Gayle offers her knowledge and understanding of both mental and physical health and wellbeing to the product advisors at Wealden Rehab, emphasising the importance of a personal approach being necessary to achieve the best
outcomes.
Assessing each client holistically encompasses the environmental considerations, which improve solutions for installation of ceiling hoists and
more detailed clinical considerations for seating.
Installation of multiple celing hoist units at Foreland Fields School
Upon prescribing a piece of equipment, the occupational therapist must clearly show their clinical consideration. Gayle has devised and shared documents to encourage clinical reasoning when prescribing Wealden Rehab’s most popular
products. The documents are aimed at prescribing OT’s to consider the individual, environment, the task and to help justify the most appropriate outcome for the end user.
Gayle has provided a rigorous training program for all of Wealden Rehab’s product advisors, through individual and group training sessions. Her ongoing program is designed to enhance the assessments and the training they offer to their customers, which brings extra value.
Wealden Rehab recognise the
significance of having an OT in the team and a clinical approach in devising and delivering training for OT customers when prescribing Wealden Rehab products. We have observed increased confidence, greater understanding from OT’s in the
set-up and recommendation of our products, resulting in improving the end users
experience.
In the future, Wealden Rehab will be adding to the range
of products and, with specialist input, Gayle will be able to critique and share her clinical knowledge regarding new products. This will surely have an impact on the quality of life of many users, which is, Gayle says, ‘At the heart of
everything we do.’
Ceiling hoist installation by Wealden Rehab at the Chiltern School
Many thanks to Wealden Rehab for providing this guest post.
Josh Wintersgill, 26, was diagnosed with Spinal Muscular Atrophy Type 3 at 18 months old. He has been a full-time powered wheelchair-user since the age of 10.
He attended university, completed a placement year, works full-time, started his own business, and is now on the Great Britain Air Rifle Talent and Development Squad. Josh is able to drive a wheelchair accessible vehicle (WAV) and has lived independently since leaving his parental home at 18.
Josh shooting an air rifle ~ Disability Shooting Great Britain
1. University ~ Can you tell us about the process of putting a care package in place and living independently as a disabled student?
During my last year of college, I expressed an interest in going to university. After research with my social worker and factoring my needs and desires, we identified appropriate universities that fit my criteria. I then had to decide on a live-in carer or a care agency. I opted for the agency route in order to be as independent as possible.
Once accepted by the university, I sorted accommodation and started looking for care agencies. My social worker provided me with a list of care agencies registered with the CQC, but it was down to me to make arrangements. The first care agency turned out to be unpleasant! So, after 4 months, I switched to another agency who I remained with for the duration of my university experience.
2. How was your overall university experience?
My overall uni experience was, let’s say, fruitful! From falling asleep in my wheelchair in front of the mirror to having university staff put me to bed within the first week because I was so drunk. It was clear that I was going to make the most of my 3 years at uni!
I got involved with numerous societies and activities to keep myself active and included with the student culture. I had a fantastic time and never experienced any discrimination or abuse. The staff made me feel at ease, allowed me to be as independent as possible, and provided access to necessary resources.
I graduated with a first class honours in IT Management and Business and, 4 years after graduating, I was invited back to receive an Honorary Masters in Technology.
3. You carried out an internship with Hewlett Packard during your studies, and then worked as a cyber security manager. What, if any, challenges did you encounter in finding employment and how does your disability affect your working life?
The general employment process with assessment days, face-to-face interviews and telephones interviews were fairly seamless. Most employers are extremely accommodating if you give them notice and make them aware of your access needs.
I do remember one assessment day with a popular car manufacturer where the activities impacted my ability to take part due to my physical requirements. This may have affected their decision to not employ me, even though I was just as capable, if not more so, than the other candidates. But apart from that, I have not had any issues finding employment.
Obviously, my disability limits me physically. However, as I work in technology it does not affect my ability to do my job. Yes, working full-time is not easy for me, but it’s also important to remember it’s not easy for able-bodied people either.
I have always been the sort of person who just gets on with it. I also believe that with technology making everything more accessible for disabled people, in most cases, our disability should not affect our ability to work. If you have any employer with an inclusive work culture, who is willing to support, understand and give you flexibility within the work place, then for sure you can work!
4. You returned to university to speak to students about entrepreneurship, and inspire them to start their own businesses. How did this make you feel and why do you think it is so important to encourage other disabled people to pursue any entrepreneurial aspirations they may have?
This gave me a sense of achievement and fulfilment. I believe that sharing experiences, whether positive or negative, helps others to follow their own passions and aspirations.
There is a general consensus that employment for disabled people is difficult to find, and arguably this could be due to the lack of inclusive employers. This is what makes the entrepreneurial world an attractive proposition for disabled people – it is flexible, offers them ability to work around their needs, and also avoids the hardship of being in a culture that is not disability confident.
5. You ventured into self-employment and founded AbleMove. Why was this so important to you?
I have always wanted to start my own business. When I realised I could create a product to make travel more assessible for disabled people, it was a no-brainer decision for me.
When you’re working on something you’ve created and can see the life-changing benefits, there is a real feeling of fulfilment.
Josh accepting his £30,000 prize from Sir Stelios (easyJet)
6. In 2018, you won the Stelios Award for Disabled Entrepreneurs from easyJet founder, Sir Stelios Haji-Ioannou. How did that make you feel and what impact has this had on you and your business?
Winning the award gave me a sense of personal achievement and recognition. It gave me a fresh perspective on developing my own business and the benefits it can provide versus working for a large company.
The prize money and a business deal with easyGroup Ltd enabled me to give up my full-time job in order to pursue my own business. This allowed me greater flexibility regarding how I manage my disability.
Award-winner Josh with Sir SteliosJosh and his family with Sir Stelios at the Stelios Awards for Disabled EntrepreneursJosh with easyJet founder Sir Stelios
7. Prior to winning the award, you had to move home and rent within the private sector. What challenges did this present?
The challenges with the private rent sector (PRS) are vast, especially given almost 85-90% of PRS homes are inaccessible for wheelchairs.
After applying for the Stelios Awards, I was told I had to move out of a good sized two bed apartment due to the landlords requiring their property back. Having lived there for 3 and a half years, it was time to start the dreaded challenge of finding a needle in a haystack.
It’s purely pot luck if you can find an accessible house to move into straight away that doesn’t need any adapations.
After fighting with the council and various estate agents, we eventually managed to find a property on rightmove. Now, when moving home I need to consider carers since I rely on them throughout the day. My main PA (personal assistant) was unable to continue working for me, and so I had to re-jig and was then only able to maintain one PA.
Finding an accessible property and then having to manage your care situation around it is extremely stressful, tiring and irritating. On top of this, I was working full-time, getting the business of the ground, doing weekly exercises and training for the Great Britain Shooting Talent and Development Squad.
8. Can you tell us about your invention, the easyTravelseat. What is it and how does it benefit disabled people?
My travelling experiences involve being manhandled from wheelchair to aisle chair and then manhandled again onto the aircraft, which is highly undignified and uncomfortable. I therefore sought to create something that would help me travel in a more comfortable and dignified manner.
The easyTravelseat is a sling/seat combination that is designed to work as an in-situ piece of equipment. It is placed in your wheelchair, and you then remain seated in the easyTravelseat until you reach your destination.
For instance, when flying, you would remain comfortably and securely seated within the easyTravelseat for your entire journey through the airport, onto and during your time on the aircraft and off again.
Once I created it, I realised the many benefits it offers disabled people. It allows users to travel in a more safe, dignified and comfortable way, on all modes of transport. Furthermore, it opens up leisure opportunities such as canoeing, kayaking, skiing and so on. The easyTravelseat enables users to be transferred quickly and easily without having to be manhandled. The user is comfortably seated with their own cushion, a gel pad or foam.
9. Where did the idea for the easyTravelseat stem from, and what did the development process involve?
The development process involved researching the types of equipment already available, and the demand for such a product. I conducted market research to determine whether wheelchair-users would find the product useful. Then we identified a concept and progressed to prototyping in order to test how the seat would work. We then moved on to the point of manufacturing the seat and getting the required medical marking and approvals in place. During this process we had been working initially with airports around the lifting side of the device, including our sling manufacturer and then an airline. We started production in February 2019.
Josh Wintersgill sat outside an easyJet aircraft, ready to try the easyTravelseat
10. Does the easyTravelseat cater for disabled people of all shapes and sizes?
The easyTravelseat will cater for the majority of disabled users with the exception of very young children, bariatric passengers or people with extreme contoured seating.
11. How does the easyTravelseat compare with similar products on the market, such as the ProMove sling or the NEPPT Transfer Evacuation Sling Seat?
The difference with the easyTravelseat is the specific design and application of use for aircraft, whilst ensuring passenger comfort. It allows users to be moved around the aircraft, including during an emergency, and to then disembark the aircraft in a much safer, dignified and comfortable manner. All other slings are designed to be removed and offer no protection or comfort when in-situ.
Josh and carer demonstrating the easyTravelseatJosh travelling by car, using the easyTravelseat
12. What other assistance do you think airlines could and should be offering to disabled passengers?
I think the most important area airlines should be focusing on in the immediate is the loading of wheelchairs, both electric and manual, to prevent damage. It also concerns me the people on the ground lifting these wheelchairs are at risk of causing serious damage to themselves. There is industry equipment to load wheelchairs onto an aircraft without having to manually lift a wheelchair. This would help the loaders and reduce the amount of damage to both the chairs and the airport staff. Also, a secure area in the hold may also be advantageous to prevent luggage damaging wheelchairs during turbulence.
I also think the UK should be pushing (as Canada has done successfully) the airlines to provide free tickets for a carer when flying with a disabled person. After all, the airlines make it a necessary requirement for WCHC passengers who cannot move without any support to fly with a personal assistant/carer.
Airlines should also be addressing the toileting situation inside the cabin too. It is currently impossible for the majority of disabled passengers to access the toilet whilst flying.
Regarding hidden disabilities, there are those who are much more calm when they are surrounded by objects which are all different colours.
Long term, all airlines should be looking to allow wheelchair-users to remain seated in their wheelchair, inside the cabin, during the flight.
13. What does the future hold for you and your business?
The future is bright for easyTravelseat! We are off to a steady start with interest across the globe. We believe in an accessible aviation world and are able to provide an immediate solution to help reduce some of the significant problems with maintaining safety, dignity and comfort when flying with a wheelchair.
We will now look to ensure easyTravelseat is easily accessible in as many countries across the globe as possible in the coming years.
On Friday 5th April, I attended an evening performance of Les Miserables at the Birmingham Hippodrome. Over the years, I’ve seen several different shows at this theatre, and have always been impressed with their accessibility.
I am a non-ambulatory wheelchair-user, and so my primary focus is wheelchair access. However, the Birmingham Hippodrome is continually making improvements in order to be more inclusive and cater for all disabilities.
We all know how difficult it can be to book tickets for shows and concerts when you have a disability. But I can honestly say, I’ve never had a problem booking wheelchair-accessible seating at the Birmingham Hippodrome. I’ve never had to dial the booking line the minute tickets go on sale, which is often the case for other venues, and there’s even a choice of where to sit!
The Arcadian is a manned carpark situated just around the corner from the Hippodrome. It offers sufficient disabled bays and cost £7:50 for the duration of our stay (around 4 hours). This is Birmingham – parking aint cheap!
Wheelchair Access ☆☆☆☆
The Birmingham Hippodrome, refurbished in 2000, is easily accessed via the main entrance. There are multiple double doors as well as an automatic door, with security staff always on hand to assist if required.
The main front entrance of the Birmingham Hippodrome – fully accessible to all.
There is then a wide, gradual ramp to the right of the central stairway. This leads to two large glass lifts/elevators. Again, there’s always multiple members of friendly staff available to assist with doors, directions and the operating of the lifts.
The main entrance from inside the Birmingham Hippodrome.Inside the Hipppdrome – multiple levels accessed via stairs and two glass lifts/elevators
We sat on one of two raised platform areas at the back of the Stalls (lower level), known as the Lounge. Despite being at the very back of the audience, we had a great view of the stage, and since we were elevated, we didn’t have to head-dodge!
There was also plenty of leg room and space for multiple wheelchairs, so it was very comfy.
Seating plan showing the accessible Lounge area at the rear of the Stalls (lower level).Our view of the stage from the Lounge seating area.
There are multiple accessible toilets, all of which are clean, spacious and impressively well-maintained. They even smell good! From my point-of-view, the only thing lacking in this department is the addition of a Changing Places facility, which would no doubt be a huge asset. For this reason alone, I had to deduct a star from my rating.
In 2018, the theatre made a conscious effort to be all-inclusive by installing gender neutral toilets.
Gender neutral toilets
“The theatre offers a programme of signed, audio described and captioned performances. Touch tours have been introduced, so blind and visually impaired can familiarise themselves with the props and scenery before attending a performance and assistance dogs can be accommodated with care being provided for the dog during each act.” ~ Birmingham Hippodrome website
Now, I’m generally a fan of Russell Crowe, but as Javert he was total crap. The guy who played the same role in the theatre production puts old Russ’ to shame! Man, what a voice.
The entire cast was brilliant, with no weak links. How they maintain such a high quality performance, night after night, demonstrates the talent and professionalism of each individual.
Warning: Spoilers..!
All credit too, to the costumers and production design. Particularly impressive were the ensemble scenes at the barricades, and the moment Javert meets his watery end.
For me the highlight was the solo performance of Bring him home by protagonist Jean Valjean (played by Hugh Jackman in the film version). NOTE PERFECT!
If musical theatre is your thing, go and check out Les Miserables!
Les Miserables balloons at the Birmingham Hippodrome
So, this year I managed to make it to the first day of Naidex, having last visited over a decade ago!
For those of you who aren’t familiar, Naidex is Europe’s biggest trade, professional and public exhibition for all things disability and independent living.
Fortunately for me, it is hosted fairly locally at the Birmingham NEC, which is around an hour’s drive from where I live.
First thing’s first, I was pleasantly surprised to find that disabled parking was free – winner, winner! For all other events attended at the NEC, the parking charge is a hefty £10.
I’ll be honest, my main reason for visiting Naidex 45 was to meetup with a few friends, including fellow #MDBloggersCrew member, Fi Anderson.
Fi Anderson outside the Changing Places facility, at Birmingham’s NECHappy to see a Changing Places facility at Birmingham’s NEC!
Together we did a few laps of the place, trying our best not to bump into people. In fact, within the first 10 minutes of arrival, some bloke cleverly decided to walk backwards and very nearly fell on top of me. Thankfully he was young and not unattractive, so I didn’t mind so much.
It was a challenge to navigate the crowds, making it difficult to approach people and stop to chat. I spotted a few familiar faces but was only able to talk to a few, unfortunately. I did manage to briefly catch up with Mr twodoughnuts, though he wasn’t overly impressed with his first experience of Naidex. I have to say, I agree with his assessment!
For those of you planning to attend Naidex in the future, I would advise pre-planning your route as it’s tricky to locate specific stalls amongst the crowds and chaos!
As disorganised as it was, I was gutted that I couldn’t be there for the second and final day, purely because my mate SimplyEmma was judging on the Changing Lives Award panel!
SimplyEmma (far right) judging on the Changing Lives Award panel at Naidex 45
Would I go again?
Honestly, it depends who’s going! It’s a good excuse to meetup with friends and fellow disability bloggers from all over the UK. And, it would be nice to represent the #MDBloggersCrew (properly) at some point. But otherwise, it wasn’t really my cuppa.
Just a few magazines, leaflets and flyers collected at Naidex 45
If you attended Naidex 45, let me know what you thought by leaving a comment!
The recent trending Twitter hashtag #AbledsAreWeird, created by disability activist Crutches&Spice, has got me thinking about my own encounters and interactions with able-bodied society.
Uncomfortable? Awkward? Frustrating? Yup!
Here are some examples of my experiences as a non-ambulatory wheelchair-user (with Ullrich Congenital Muscular Dystrophy). I’m sure they are not unique to me!
Let me know if you can relate to any of the following scenarios…
Accessibility
Stranger: There’s only a few steps. Me: I can’t walk, hence the chair. Stranger: They’re only small steps. Me: Nope, still can’t walk I’m afraid. Stranger: Oh, not even with assistance? Me: Not even with assistance. Stranger: Not even a little bit? Me: Not even a little bit. Stranger: Not at all? Me: Not at all.
Awkward, deafening silence…
Stranger: There are steps but we can just lift you (in a powered wheelchair). Me: Thanks but this chair is really heavy. There’s no way you’ll lift it.
Stranger then attempts to lift me in my wheelchair, only to complain of the weight.
Stuck in a long queue of fit, young able-bods who look me up and down (in my wheelchair) but still choose to wait for the one and only lift/elevator rather than take the stairs, which would be much quicker!
A young driver in flashy sports car races into a blue badge bay and gets out without displaying a badge. Me: Excuse me, have you got a blue badge? Driver: No! Have YOU?! Me: YEP! (waving my blue badge at the driver while sat in my Motability WAV).
Being unable to access public disabled toilets because they’re being used for storage!
Entering a public disabled toilet after a mother and baby have just used it. It absolutely stinks and there are used nappies on the floor!
Online Dating
Guy: okay, can I be honest? Me: yes. Guy: let’s be real, you’re no one’s type. Are you! Me: erm, thanks!
Me: I can’t walk. I have something called muscular dystrophy. Guy: oh. Right. Okay… Me: yup… Guy: so is that something you could change if you work on your fitness? Me: no. Afraid not. Guy: not even if you try really hard and actually make an effort?
Me: I’m a wheelchair-user. Guy: oh right, what’s wrong with you? You self-propel, yeah? Me: no I can’t do that, and there’s nothing wrong with me. Guy: but I’ve seen some really fit girls in wheelchairs. They play basketball and all sorts! Me: yeah, that’s never gonna be me. Sorry.
Me: I’m a wheelchair-user. I can’t walk at all. Guy: oh, okay. What happened? Me: nothing happened. I have something called muscular dystrophy. Guy: I just Googled it. Wow that really is a disease isn’t it!! Me: fear not, it isn’t contagious.
Guy: oh, so you can’t walk at all? Me: yeah that’s right, I have muscular dystrophy so I can’t weight-bear. I use a powered wheelchair. Guy: okay…. Me: it’s fine if you want to ask questions. Guy: so…you don’t have sex then?? Me: why’s that? Guy: well, I’m guessing you can’t feel anything…you know.
Woman: aww, I’m sure you’ll find a nice guy in a wheelchair to date! Me: or just a nice guy!?
Social Worker Review
Assessor: are you able to make your own decisions? Me: yes. Assessor: always? Me: yes. Assessor: (with a sceptical expression) but…if you needed advice when making a decision, who would you ask? Me: myself!?
Socialising
Stranger, whilst leaning over, “It’s good to see you getting out and about”
At a restaurant with a group of friends, all of whom are able-bodied. Waiter comes to our table, looks at me in my wheelchair, and starts rambling about a friend of his who lives near a Paralympian. None of us know quite how to respond.
At the pub with a friend who goes to the bar to get us drinks. When she returns, she says a guy at the bar who she knows told her he didn’t realise she’s now a carer. She had to stop and think for a moment and then replied, “I’m not her carer. I’m her friend! We’ve known each other almost 20 years!”
The guy looked absolutely dumbfounded.
Driving & Mobility
“Wow, you learned to drive? Is that safe? Did you have a special instructor and a special test?”
“Your wheelchair’s a bit battered. Looks like you could do with a new one! I suppose you just call and get a replacement through the NHS?”
“Do you have to have training and a test to drive that thing? [my powered wheelchair]”
“They [wheelchairs] cost HOW MUCH?! Why are they so expensive? Can’t you just save up?”
University
“Oh, you went to university? Good for you! It’s something for you to do, isn’t it. How did you manage though?”
I am 30 years old, and I have the progressive condition, Ullrich congenital muscular dystrophy. As a result, I am completely non-ambulant. I use a powered wheelchair and am unable to transfer without the use of a hoist and support from carers.
Imagine being denied the basic human need to go to the loo; being unable to access a toilet whenever you need to. Imagine having to hold in the urge all day, every day. Having no choice but to strictly limit your fluid intake to the point where you cannot risk drinking from morning until evening. Living with dehydration, impaired mental function and recurrent infections, simply because adequate toileting facilities are not made available to you.
#FitToBurst
This was my life until 2011, when I underwent medically unnecessary surgery to insert a suprapubic catheter. Of course, I didn’t want an operation, a General Anaesthetic (in itself a huge risk due to my poor lung function) or an indwelling catheter. By no means is this an easy fix, believe me! But I just couldn’t do it anymore; I was making myself ill and relied on assistance from others in order to carry out the seemingly simple task of toileting. No longer could I inflict undue stress on my body and mind.
So, I resigned myself to the only option available to me at that time; a suprapubic catheter. With this, I no longer need to transfer from my wheelchair or depend on other people. I don’t have to struggle and suffer the indignity of using small, dirty and ill-equipped public disabled toilets. But, 250,000 disabled people in the UK still do.
Often, there is not enough room to fit a wheelchair in a disabled toilet, let alone space to transfer, adjust clothing and accommodate a carer too. Baby changing facilities get in the way, grab rails are too few and carelessly installed, the toilets themselves are too low, and hoists…what hoists?!
The majority of disabled toilets I have used throughout my life have been vastly inadequate, filthy, often neglected or used for storage!
I think it’s important that there are Changing Places facilities everywhere, including smaller towns, villages and rurally as there are many disabled people (like me) resident in these locations too.
#incLOOsion
The lack of such essential facilities locally makes me feel restricted, excluded from society and considered less important.
The 19th July 2017 marked the second Changing Places Awareness Day and eleven years since the campaign began.
Each registered Changes Places toilet includes:
1. – a height adjustable adult-sized changing bench
2. – a tracking hoist system, or mobile hoist where not possible
3. – adequate space for the disabled person and up to two carers
4. – a centrally placed toilet with room either side
