Last month I attended Naidex for the first time, a disability exhibition for professionals and the public to see what’s new in the industry and get a chance to see products in person. It brings in a wide range of disabled people from all across the UK and I couldn’t move 10 metres without bumping into someone I knew from social media, it was just as much about networking as it was about doing some shopping.
There were an incredible amount of wheelchair users there across both days and whilst I was aware that there are a lot of ambulatory wheelchair users out there (wheelchair users who can walk) I was surprised by the sheer amount of people I talked to in both manual and electric wheelchairs who could walk, whether it be a a few steps, just inside their homes or out and about switching between a wheelchair and other mobility aids.
My wheelchair gives me the ability to conserve energy from
walking and standing for long periods of time, meaning I have energy to do other
things, like having a coffee or shopping. I call it my yes chair, yes I can go
shopping, yes I can go out for a coffee. Without my chair I would be unable to
do these things. Using a wheelchair has opened my world back up. – Amanda, 46, Fibromyalgia & Chronic Fatigue Syndrome
think the main difference having a wheelchair has made to my life is that I can
do things! I could exist without my chair but I wouldn’t be living. I travel
the country for Mixed Martial Arts events and concerts that I know I wouldn’t
be able to without my chair. And I guess that leads me onto the other thing.
What I want people to know about wheelchair users who can walk, is it’s not
some kind of miracle if we stand/move out of our chairs! Wheelchairs aren’t
just about being able to get from A to B, it’s about being able to live a life
full of adventures, and that’s what being in a wheelchair does for me. – Emma, 22, Cerebral Palsy Spastic Diplegia
Through social media I’ve connected with so many people like me but being presented with it in person was a completely different experience and across those 2 days I wasn’t scared to move my legs or stretch if I needed to, something I avoid doing in public due to fear of people’s reactions. Naidex was a safe space and it was incredible to be in that bubble, but as I left I soon remembered that the rest of the world hasn’t caught up with how varied each wheelchair user’s condition is yet and how diverse disability is. And so, it was back to being fearful of ‘exposing’ myself as being able to walk. That’s definitely not how I want life to be though, so I did what I know best and I started writing.
main issues I have are explaining to new doctors that using a chair creates
such a difference in my quality of life over painful and dangerous shuffling a
few metres at a time, why wouldn’t you? I was really lucky to raise enough
through friends, family and a million hours overtime to buy a super lightweight
active user chair that has been built just for me. That keeps me working,
albeit in an adapted capacity. – Holly, 39, EDS & Dysautonomia
This is a topic I’ve wanted to explore deeper on my blog for a while and when I went to Naidex I realised what it was missing. I wanted to show people what I saw there, a wide range of wheelchair users who can walk and who are in fact the majority, not the minority like much of society has been led to believe. So many people think of wheelchair users and think spinal cord injuries and being paralysed, they think of something binary. You can either walk or you can’t walk. But this couldn’t be further from the truth.
took a really (really) long time to come to terms with the idea of being a
wheelchair user. I spent years forcing myself to walk, causing so much
unnecessary pain and fatigue because I thought that if I ‘ended up’ in a chair
it was my own fault for not working hard enough at keeping my body strong
(something physio had pretty much told me when I first got diagnosed). This
mentality stayed with me as my body did decline, and it was only through small experiences
using a wheelchair at an airport, or my mum forcing me in one to get me out of
bed and look around shops, that I realised it could make a huge difference to
my life. From the moment I got my chair, I was annoyed with myself that I’d
held out for so long. To me, my chair gives me the freedom to go out for 5
minutes without ruining my entire day. It allows me to be in the office at work
without it knocking me out for 3 full days afterwards. Using
a chair isn’t about being lazy or not trying hard enough. At the end of the
day, to me, it’s about reducing suffering and increasing how much I’m able to
participate in not only outside life, but my own. – Natasha, 30, EDS with multiple co-morbidities
I started using a wheelchair when I was about 17, it was for things like shopping and supermarket trips at first, places which involved a lot of walking and not many places to sit along the way. It was a transit wheelchair donated by a friend of my Mum’s and it really opened doors for me. I was between surgeries and I’d been forced to leave school so my once weekly trips on the weekend were the one thing I often had to look forward to during the week. After my hip replacement we expected me to be walking without any mobility aids but that’s when my current chronic back pain started. I pushed through on crutches for a while but ended up being stuck inside all week again and so when I received my ESA backpayment, I used it to purchase a manual wheelchair I believed I could push myself. I could manage to on smooth services but I couldn’t use it independently and so the cycle began again. Each time I got more and more freedom but nothing really changed my life in the way my current powerchair has.
have only had a wheelchair around nine months but the difference it has made
already is amazing. People
assume my condition must have got a lot worse as I am now using a wheelchair.
It hasn’t, the wheelchair if anything makes me better. When use it I have less
pain, less fatigue and most importantly more freedom. I wish more people
realised that wheelchairs can be preventative, they aren’t just for the end of
the line. They can stop you getting there so quickly. – Kate, 35, Pigmented Villonodular Synovitis
first I used crutches when going out but found it all too tiring and would be
bed ridden for a couple of days after.
My life became so much easier when I got my power wheelchair as I’m able
to take it on the bus and days out cause me a lot less pain and
exhaustion. However I am often scared to
stand in shops to reach shelves as people tend to look disapproving like I’m
faking. – Debbie, Spinal Disc Compression & Fibromyalgia
I use my powerchair all the time outside my home and inside my home I walk. I live in a largely inaccessible home with stairs, far from ideal with my condition and pain but I make it work because I have no choice. I don’t tend to use mobility aids inside my home, we have a lot of grab bars and rails and I lean on walls and furniture. I could use my crutches but I find the pain it relieves in my back is not worth the pain it causes in my shoulders, arms and hands. You could come into my home and quite easily decide that I’m not disabled, that I shouldn’t be a wheelchair user because I don’t need my wheelchair inside my home. But without my powerchair I wouldn’t get further than where the grab rails stop at the end of our path.
began presenting with symptoms at age 20 in 2010. I fought the inevitable
changes as long as I could. Even pushing past tears to appear “normal” because
I wasn’t ready to be different. My mother had to force me to use a manual
wheelchair. To my surprise once I got past the embarrassment I realised it gave
me back my freedom. The only downside were the unkind comments and the
scepticism. Many suggested I was faking and would express their disgust. This had a detrimental effect on my self esteem
and I stopped going out because I feared being judged. I want people to know
that using a wheelchair allows me to get around easily without excessive pain.
Please when you see a wheelchair user walking please don’t immediately assume
they are faking. There are many disabilities that are invisible or present with
intermittent weakness. We are simply trying to live life so I really want
everyone to be mindful of your words and if curious please kindly ask. – Emerald, 29, Mitochondrial Myopathy
I feel like I’m most empowered I’ve ever felt right now and I’m certainly the most comfortable with my disability that I have ever been. I love my powerchair and think it’s so badass but it feels like being comfortable with being a powerchair user who can walk is one of the last hurdles for me to tackle and I’m definitely not alone in struggling with this as you’ll read from everyone who has shared their experiences and stories for this post. I still almost feel like a fraud, I question my disability all the time and question whether I really need my powerchair, despite knowing deep down that without it I’d be housebound. But that’s what happens when you live in a society that is so quick to brand something they don’t understand a lie, you start to buy into that too.
My wheelchair is my lifeline to the outside world; without it I would be
completely isolated and unable to participate in society. I have been using a
powerchair for about four years and had manual chairs before then that I
required somebody else to push. I have a long list of chronic illnesses that
cause chronic pain. I’m in pain every single day. Some days it’s worse than
others but every day I need mobility aids to get around. And whenever I go
outside, I use my powerchair. I can walk but not unaided and not for long.
Using crutches causes my shoulders to dislocate, puts pressure on my wrists,
back, hips and knees, and leaves me in agony. My powerchair doesn’t do any of
that; my days out in my chair are longer, more comfortable and much more enjoyable.
I use a powerchair but I can walk and I can move my legs. People use
wheelchairs for a variety of reasons, mine are pain and fatigue. – Sarah, 32
I waited a long time before I
went into the chair almost full time. It took me 3 years of huffing and
puffing. Pain, dislocations and fainting before I decided that maybe using my
wheelchair might actually be good for me. And you know what the second I used
it more I felt like I had more energy. I could do more, go further and when I
wanted to I could stand and walk a little pushing my chair. It opened up the
world. Yes I get funny looks when I walk pushing my chair. But those people do
not know what my body is doing or the pain I am in. I don’t care about those
people anymore because now I am living my best life and I am able to do more. I
have travelled the world and now I am getting back into work because I am not
living a lie trying to walk everywhere and breaking my body. – Fuchsia Aurelius, 34, Vascular EDS & Spinal Damage
I can almost understand why those who walk with no trouble could find it confusing to see someone supposedly ‘give up’ walking when so many couldn’t see their life without that ability but, when walking is painful, difficult or fatiguing, you start to view it in a different way. It starts to become something you fear and avoid. And rightly so, if you were in pain you would take painkillers to manage it so why is using a wheelchair to manage things like pain and fatigue any different?
What an interesting post. I was at Naidex too btw, it's a great exhibition for getting in touch with the latest disability aids and adaptations. I walk inside my home but I always have something to hold on to. I am prone to falls and I know it's only a matter of time when I fall inside as I get worse. I can't go outside without my chair. What upsets me most is that all these people need their chairs for whatever reason, but the cost of chairs is ridiculously high. It's sad when something needed to have any kind of life has to cost an arm and a leg (excuse the pun!) x
Thank you! It is so frustrating that ambulatory wheelchair users are the majority and yet we are most likely to be turned down for an NHS wheelchair and struggle to get grants x
The provisions for wheelchairs and other services are a massive nightmare in the UK, and the perception behind people who can get around a little bit without a chair doesn't help either.
But I've taken to just buying my own wheelchairs now, as long as its price costs a quid a day or less, I'm happy. Weird way of looking at it, I know. But I'm not normal 😉
Most wheelchair users I know, myself included, have sadly had to buy their own wheelchairs too either out of their own pocket, through charity grants or fundraising. People seem to assume this is a US only problem but it's a major issue here in the UK too.
Thank you so much for writing this! I have cauda equina and chronic pain. I actively avoid going out except for essentials. This afternoon is a case in point. My husband and two youngest children (20 and 23) have gone to Sunday lunch to meet up with other family members. I know that if I did go I would be in pain today and possibly in bed tomorrow. My wonderful spinal rehab consultant has been gently pushing me towards getting a wheelchair and I have been equally gently rejecting the idea. Like you and to my surprise your other contributors, I can walk and do so within my own home. I have felt that I am not yet 'bad enough' to use a chair and that doing so would be admitting defeat. This is despite my consultant describing it as 'future proofing', allowing me to do things that I haven't been able to.
Your blog has given me good for thought, thank you so very much!!
I'm so glad this post has helped you! Using a wheelchair definitely isn't admitting defeat, it's simply a tool to help you live the life you want! x
Thank you for this excellent article. I was quite used to being stared at and hearing mumbling about me being a 'faker' whenever I stood up out of my powerchair. I blame Little Britain's Lou and Andy. However I will be forever grateful to actress Cherylee Houston, as when her character in Coronation Street, Izzy Armstrong, stood up out of her chair in The Rover's Return, people stopped starting and muttering at me.
I am so grateful to have her giving us that representation too!
great article and insight, i have lupus, this has caused lung disease and chronic fatigue, i cant walk very far before i become tired, sore or my legs just wont move, i have to rest every few metres which is a pain, i cant do days out or go anywhere with stairs and hills, a wheel chair has crossed my mind, this article has given me hope.
I have had fibromyalgia and chronic fatigue syndrome for over 20 years. I have never used my wheel chair because of my age and have had many embarrassing moments pushing myself that I have been unable to move in a store or public place because of pain. I have my COVID shot scheduled and just realized I would have to use it because of the lines. I was in full on melt down and searching for help when I found this article……. thank you ……
I am going to use my chair. I am going to save my energy for my kids and my self and not use all my spoons embarrassing myself trying to make it through the line. I was to worried about being embarrassed about not needing the chair like I should… or being worried about what others think or I pray to god don’t say. I have worried since I was 17 that people would judge me ….. but I need to be on my own side and try to spare myself pain when I can. I will try in those moments I’m anxious and worried to remember all of you and all of your words. And this article. God bless
Thank you so much for this article. I cannot understate the importance of hearing from other disabled wheelchair users. I have been disabled for almost three decades but have never lived anywhere accessible to have my own chair or walker. About four months ago, I moved into a temporary living situation with wheelchair accessibility. Today, I finally received my first chair. I understand the guilt that we feel when able-bodied people look at us although there is nothing wrong with us, or that we're pretending to be sick, rather than pretending to be well. At 50 years old, I'm only beginning the journey into my new life with the help of my wheelchair. Reading the experiences of different people who were made to feel shame because they are temporarily capable of standing or walking very much empowered me. It made me realize that it is not just me – I will not allow people to shame me and I will be kind to myself in those moments when I do. This article gives me courage, it validates my experiences as a disabled woman – there is a range to my abilities – good days and bad days. That it does and will fluctuate and that there should be nothing shameful or embarrassing about that for me. Tomorrow, I'm starting a new life as a wheelchair user thanks to this article in the people who share their experiences in it, I will go forward proudly. Peace.
I am SO glad that this post could help you, this is exactly why I wanted to write it! I hope you go on to have so many amazing experiences as a wheelchair user!
Thank you! It is 4 months later and my motorized chair (I named her Creature) and the freedom she gives me is amazing. I am very grateful I found your article and was able to read about people's experiences and realize I'm not alone in my varied ability/disability. I am still proud in my chair and not at all ashamed when I get out to stretch, walk a few feet or need to grab something from the bag in back. It has been pure joy since then and this was instrumental to that! Peace.
This comment has absolutely made my day! I hope you enjoy your new freedom for many years to come! x
Thank you for this. I have a lot of issues going out and doing things, but I also have had this story in my head that even if I'm in excruciating pain, I'm somehow not "sick enough" or "disabled enough" to start considering, let alone actually using, any kind of mobility aid. This has helped me immensely.
I am so glad it could help you!
I've been wondering a bit about this. I don't have any formal diagnosis because I think the NHS is happy to think my back pain is somatic, and therefore has never really investigated the cause. But it started just before I was 20, and has only gotten worse. I can go shopping if we drive there and if we only go to 2 or 3 shops maximum. But standing for a long time is impossible! I had to wait an hour for a bus once, and there were no seats at the stop, so I sat on the ground because I was already aching from walking to the bus stop. Someone asked if I was alright and I was like "yes???" as I was just sitting! Anyway! I keep thinking how I can't do things like go to demonstrations, and I realised I could go if I had somewhere to sit/take a break from walking a bit. I dunno what to do. My problems aren't that severe (I can walk 400m before it hurts – I measured it) and without any formal diagnosis, I don't feel like I should use a chair. Even a bit. I keep telling myself I'll get better, but I don't know. It's been 20 years, and been very bad for 7-8 of those. I'm kinda stuck in the house because going places hurts.
Wheelchairs are a mobility tool like any other daily living aid, they are designed to make your life easier, so if using a wheelchair would be of benefit to you then don't let anything stop you! Even if it's just for longer distances/days out, if it will help then it's worthwhile trying. Do what you need to do to live the life you want! I spent a long time waiting to see if my pain improved, and in that time I missed out on a lot of life and I regret not using a wheelchair sooner.