Friday, 3 May 2019

I'm A Wheelchair User And I Can Walk

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.

Photo by Maciek Tomiczek

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 


I 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.

The 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.


It 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.

I 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

At 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.


I 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?
SHARE:

6 comments

  1. 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

    ReplyDelete
    Replies
    1. 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

      Delete
  2. 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 ;)

    ReplyDelete
    Replies
    1. 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.

      Delete
  3. 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!!

    ReplyDelete
    Replies
    1. 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

      Delete


Blogger templates by pipdig