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Guest post: Oh, it must be awful being in a wheelchair

milomilo Posts: 165Member Pioneering
edited September 2016 in Guest blogs

Most wheelchair users have probably been faced with the awkward situation when someone says "oh, it must be awful being in a wheelchair, I hope you're better soon". Usually I just mumble some remark and get on my way. Afterwards I think of all the ways that I could have responded...

Milo - man in a wheelchair

For a start, you don't know why I'm in a chair. Was I born this way? Or was it the old favorite - a car accident? Did I do something stupid and break my spine? In my case it is spastic cerebral palsy coupled with a childhood autoimmune illness. No, it won't get better and I'd rather not hear the story of your aunt's friend's brother who either got miraculously better or who died of some hideous, undiagnosed illness. Nor do I know everyone in a wheelchair -contrary to expectations we are not members of some secret society.

I could sit there and explain all of this. I could tell you of all the hospital stays, the muscle biopsies, the hours of painful physio, the failed surgeries and the countless splints and other appliances that never quite achieved the intended results.

Wheelchairs are not the worst that can happen

Although I've got used to these types of conversations over the years, they still rankle with me. After all, I wouldn't approach a stranger and say "ooh I'm sorry you've got bad hair" or "I'm sure your dress sense will get better".

For me, being in a wheelchair is far from the worst thing that could happen. With my chair, I'm active, I can move around safely and most of all, I'm independent. My chair may be an extension of myself but it is most certainly not a definition of who or what I am.

I'm married and have teenagers. Until recently, I'd been in more or less continuous employment for over 20 years. I play wheelchair sports and I drive a car. But of course, you don't see any of that, what you see is the chair. You don't see the person in the chair and you don't see the full life I'm leading

Don't feel sorry that I use a wheelchair, I don't have time to feel sorry for myself, I'm too busy living!

Oh and as a footnote, while writing this article I had a spectacular crash in my chair due to a broken paving slab. After being catapulted headfirst to the ground I had to sit for 15 minutes until my wife could come to my rescue, thanks to all those drivers who went past without stopping to help. A visit to A+E revealed a broken bone in my wrist. Is this holding me back? No, I'm all strapped up and eager to get straight back to living my life!

Replies

  • unluckyglounluckyglo Posts: 13Member
    I am sorry about your accident. I use a mobility scooter and know only too well the pavement problem. So many people on wheels with different medical problems. It is time the council's caught on. Put more dropped curbs and made sure the pathways are flat and safe.
    Maybe put a note on your wheelchair my life is more fulfilled than yours. Good luck
  • milomilo Posts: 165Member Pioneering
    Thanks @unluckyglo, I'd certainly like to see more consideration in regard to drop kerbs etc. Having said that, the pavements around here are pretty good on the whole.  Love the idea of the sign,  might need to slow down for them to read it though. ☺️

  • onyeeonyee Posts: 10Member Connected
    not quite a wheelchair comment but the one that always bugs me is when I introduce my son and people say 'what's wrong with him?'. well, frankly nothing! he has downs syndrome.  I could tell them about the faecal incontinence that has blighted his life due to the congenital bowel disease he also has, but who has time to listen to tales of pooh?! instead I just reply 'nothing, he's fine'.
    and then more recently when someone said to my foster child while walking with her kaye frame, I hope you're better soon!  she's not poorly, does she look poorly?  no, becoz she's not.  I was more polite and just said she's not poorly, but the reply was oh, well, still... hope she's better soon!
  • milomilo Posts: 165Member Pioneering
    @onyee that's exactly the situation I was talking about. So many people equate disability to illness. I may have CP but my health is good. Must admit that on a few occasions when an adult has asked me what is wrong with me, I've said I don't know, I was fine when I left the house. Mind you, if a child asks I explain my legs are wobbly and don't work very well. 
  • onyeeonyee Posts: 10Member Connected
    :D  I have less issue with children too.  but had forgotten how much children, and adults, stare.  doesn't seem to bother my fc, but it does me!
  • milomilo Posts: 165Member Pioneering
    @onyee generally I find that children are just curious whereas adults steer more towards nosey
  • WheelchairSteveWheelchairSteve Posts: 11Member Courageous
    I sense you share my attitude to using wheelchair, Milo. I'm delighted to be using one and wish those who don't did so, then we'd all be equal and everywhere would be accessible for all!

    For me, my wheelchair gives me FREEDOM! I couldn't get out and about with it.

    Alas, everyone won't use a wheelchair, but I'm delighted that the annual celebration of the freedom a wheelchair gives us, International Wheelchair Day, which I launched in 2008, has taken off around the World and is growing year on year.

    Find out more at www.internationalwheelchairday.com and hopefully evem more people will get involved and celebrate in 2017.
  • WheelchairSteveWheelchairSteve Posts: 11Member Courageous
    I sense you share my attitude to using wheelchair, Milo. I'm delighted to be using one and wish those who don't did so, then we'd all be equal and everywhere would be accessible for all!

    For me, my wheelchair gives me FREEDOM! I couldn't get out and about with it.

    Alas, everyone won't use a wheelchair, but I'm delighted that the annual celebration of the freedom a wheelchair gives us, International Wheelchair Day, which I launched in 2008, has taken off around the World and is growing year on year.

    Find out more at www.internationalwheelchairday.com and hopefully evem more people will get involved and celebrate in 2017.
  • milomilo Posts: 165Member Pioneering
    @WheelchairSteve,  you've hit the nail on the head. My wheelchair gives me a freedom that I wouldn't of otherwise had. I've heard of international wheelchair day before but hadn't realised it was your doing. I think it's definitely something to be celebrated rather than feeling sorry for those of us who use one. 
  • WheelchairSteveWheelchairSteve Posts: 11Member Courageous
    I hope you, Milo, and the hundreds of thousands of others who use a wheelchair will come out and celebrate the freedom their wheelchair gives them. It doesn't have to be on International Wheelchair Day - any day will do, although IWD has a focus to which the celebration can be attached.

    I think we all accept there are still many challenges we need to overcome (attitude of others being one prime example you've already mentioned), but there's scope for all wheelchair users to build a community to help each other and start to educate the others.

    Please check a new initiative I've recently launched called Wheelchair Ambassadors (www.wheelchairambassadors.com). I hope you and other wheelchair users will want to engage with that, too.
  • Laura2788Laura2788 Posts: 1Member
    Milo thank you so much for writing this, it really made me smile :-). I can seriously relate, I have a number of hidden disabilities including Aspergers and the assumptions people can make are just staggering. I also always think of amazingly witty comebacks after the situation has passed which is really annoying.

    You are spot on about how people feel sorry for you while you are actually counting your blessings and enjoying your life. I really hope that when people read your blog it makes them think and helps them realise that everyone is an individual. 

    All the best,
    Laura.


  • milomilo Posts: 165Member Pioneering
    @Laura2788. Thanks for the great response I really appreciate it. I think you're absolutely right when you say people make staggering assumptions in regard to disability.

    The one that really annoys me is when people assume that just because I'm in a chair that it gives them the right to talk as if I'm either not there or that I can't speak for myself. It's interesting to see the reaction when I point out that while my legs aren't great,  my brain and my mouth work perfectly well (although my wife would be quick to point out that I could really use a filter between the two more often than not
  • milomilo Posts: 165Member Pioneering
    @WheelchairSteve. Have emailed you at wheelchair ambassadors,  I  really like the concept of it and would encourage others to sign up too. 
  • wheeler142000wheeler142000 Posts: 1Member
    People can be thoughtless. But the bigger issue we make with regard to their thoughtlessness the more it looks like we with disability's think we are special. Let them get on with it and don't make a fuss. They really don't care about our lives, and to be honest I couldn't give a jot about theirs either.
  • milomilo Posts: 165Member Pioneering
    @wheeler142000 you've got a point. Live and let live. One thing that does bug me though is that having a disability makes you fair game.  I was in the supermarket yesterday and had someone ask why I was in a wheelchair. This wasn't a kid,  I'd guess they were late teens.  Bear in mind I wasn't doing anything "special", just a bit of shopping and yet a complete stranger thinks that they have the right to ask that. 
  • WheelchairSteveWheelchairSteve Posts: 11Member Courageous
    milo said:
    @WheelchairSteve. Have emailed you at wheelchair ambassadors,  I  really like the concept of it and would encourage others to sign up too. 
    Thank you, Milo. You're on the ever growing list now at www.wheelchairambassadors.com, so I hope your enthusiasm will interest others to engage, too.
  • unluckyglounluckyglo Posts: 13Member
    @onyee @milo. In my case I find it hard to breath and walking very difficult, but I can stand and when I do it in supermarkets to reach one of the many things I can't reach from scooter. The amount of people who say look she is not disable she can stand
     As we know there so many reasons which are problems but not seen then they assume nothing wrong. Maybe we all need a medical plaque on us for the half of population not to know an I fortunate person who is unable to walk without aid.
    Or better still teach it in schools. I don't make a fuss nor do you. So why should they. Sorry pet rant
  • WheelchairSteveWheelchairSteve Posts: 11Member Courageous
    @onyee @milo. In my case I find it hard to breath and walking very difficult, but I can stand and when I do it in supermarkets to reach one of the many things I can't reach from scooter. The amount of people who say look she is not disable she can stand
     As we know there so many reasons which are problems but not seen then they assume nothing wrong. Maybe we all need a medical plaque on us for the half of population not to know an I fortunate person who is unable to walk without aid.
    Or better still teach it in schools. I don't make a fuss nor do you. So why should they. Sorry pet rant
    "Looking disabled"! One of the most difficult challenges many people face!

    In some ways, being in a wheelchair makes it easier to achieve that perceived acceptability, but having the ability to occasionally get out of your chair, however rare, can easily make the situation worse, as you've highlighted. 
  • MSmum99MSmum99 Posts: 26Member Courageous
    I have MS and for a long time I would not have a wheelchair - I question my reasoning now but society conditions us to think "wheelchair - no hope"  I spent about 2 years going nowhere (literally) then bit the bullet to take one on holiday so I didn't miss out. I have to say in the last 4-5 years I've used one no-one has questioned why? except for children which I don't mind and just say "My legs can't run around like yours do!" 
  • milomilo Posts: 165Member Pioneering
    @MSmum99 I have cerebral palsy and for years I struggled to walk. I finally switched to using a chair full time and it has improved my life immeasurably.
  • galvin66galvin66 Posts: 18Member
    I had to use a wheelchair in my teens, but mostly I use sticks, usually after many falls.... I have a fun tale to tell....... Once my knee had a splint on it, I was on crutches and out for a few drinks with a friend.  We two girls look pretty good in our 20's (I am now 50), and after years of folks asking what's wrong with you, this day I had had enough.  Anyway these two guys started chatting us up.  I pretended to be from Switzerland and explain I had obtained my injury from the Winter Olympics, downhill slalom....... Gosh they really believed me and wanted to know all about my sporting career!!!???! My friend found it very hard not to we herself laughing...... WELL we all get fed up of people invading our private lives, true??? SUCH FUN XX
  • TangoTango Posts: 4Member
    Milo I would like to think it is the type of person who goes on jeremy kyle that would ask you a question like (what are you doing in a wheelchair?). Firstly it isn't any of your business  secondly move along nothing to see here.. So you crack on with your life & have a good one. It isn't a dress rehearsal. Cheers Terry.
  • basiclee08basiclee08 Posts: 71Member Courageous
    I am New to Using a wheelchair and being disabled after a RTA. yes I  Got that Alot close Friends were fine. Others Talked to you Like a Grandma would. I  think for me took awhile to get my head around being in a wheelchai shout lived as not one for being poorly or letting something beat me. A Great sense of humour and good People around me am getting there slowly. Talking. To othersI found a godsend 
  • RhonaRhona Posts: 13Member Courageous
    I was a professional dancer when MS came calling. I needed to use a wheelchair, particularly after a number of falls. When I upgraded to a power wheelchair I rediscovered freedom and independence. As many others have mentioned I don't mind answering children's questions about it but I try to include their parents in my answer so they have a chance to 'learn' as well.
  • WheelchairSteveWheelchairSteve Posts: 11Member Courageous
    I never mind answering questions from kids. I consider it all part of the mass education process needed to help people understand disability and the challenges we all face.

    However, it's often the parents that need to understand more about what our lives are like than the kids, as there is much more integration in schools these days than when I went to school, so they have much more exposure to disability through their peers and friends.

    I was in a lift recently when a young girl asked her parents why I was in a wheelchair. There was a mixed response from the parents - the Mother told her to mind her own business, while the Father thought it was OK to ask! 
  • milomilo Posts: 165Member Pioneering
    edited September 2016
    @WheelchairSteve I generally try and answer kids questions and find it refreshing that they are curious an unembarassed to ask. I also find that they often throw you a curveball and ask something totally unexpected. 

    Mind you it can be fun telling a nosey adult a farfetched reason as to why you use a chair just to see their reaction. 
  • RhonaRhona Posts: 13Member Courageous
    I was thrown a curveball on Saturday when I was at a model railway exhibition and a young child pointed at my wheelchair, and asked what it was and I happily replied but then she pointed at the controller and asked if it was the boiler !
  • WheelchairSteveWheelchairSteve Posts: 11Member Courageous
    It would be good to get a poll, @milo, amongst contributors to this fascinating thread as to whether people are happy to answer questions about the reason they're in a wheelchair.
    Being willing and able to do so is clearly supportive of Scope's excellent "End The Awkward" campaign, which needs much more exposure.
  • Chris_ScopeChris_Scope Posts: 695Member Pioneering
    An excellent idea @WheelchairSteve, watch this space :)

  • WheelchairSteveWheelchairSteve Posts: 11Member Courageous
    I'm delighted you like the idea, @Chris_Scope. I often think many disabled people feel isolated in how we deal with the situations we encounter. I believe the reality is we all have similar experiences and will be more willing to share our knowledge and experience if we know we're not alone in how we think.
  • milomilo Posts: 165Member Pioneering
    I'm delighted at the way this post has generated so much discussion.  I genuinely feel that isolation is a problem faced by many with disabilities. 
  • WheelchairSteveWheelchairSteve Posts: 11Member Courageous
    You've hit the nail on the head, @milo. "Isolation" and a "perception of incapability" are often feelings disabled people have. I'm sure I'm not alone in stating I don't feel isolated and am capable of many things - I may just to do them differently.

    Society has imposed barriers that make doing some of these things difficult when using a wheelchair.
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