Help! We need ideas on how to destigmatize the wheelchair. #ClinicSpeak #MSBlog #MSResearch
“MS is many diseases in one. Not only does it floor you when you are diagnosed with the disease, but in those with relapse-onset disease it gets you again when you enter the secondary progressive phase of the disease; the point you realise that you have a progressive disabling disease. And again when you need a wheelchair; I did not appreciate the psychological impact it has on you when you have to migrate from using walking aids into a wheelchair.”
“At Barts-MS we run regular MS Preceptorships to teach various groups about MS. Our course is based on using case studies to illustrate specific issues in relation to MS. During last week’s preceptorship one of our MSers volunteers, who is struggling to stay mobile using a walker and FES (functional electrical nerve stimulation), reminded me how stigmatising using a wheelchair can be as a person with a progressive disease such as MS. Please note using a wheelchair as an MSer is very different to using a wheelchair after spinal cord injury. The paralympics have elevated spinal cord injured wheelchairers to the status of being celebrities. In MS the deficit is not fixed and gets worse over time; a very different scenario and prognosis to those with fixed deficits.”
“I was making the point that using a wheelchair would improve his mobility. Instead of consuming large quantities of precious energy walking and exhausting himself, he could conserve energy for other tasks by simply using a wheelchair. It would also mean he gets from point A to B quicker and he would be able to get out more and do more. Despite the logic of my arguments this particular MSer remains determined to avoid using a wheelchair. He has tried it in the past and hated the experience. For example, when he used a wheelchair in the past he lost eye contact with people they tended to look down on him. He also noted that they tended not to talk to him, but rather directed questions and comments to his partner despite them be related to him. He was treated as an inferior being. He found the whole experience dehumanising. Why should being in a wheelchair change the way people treat you?”
“May be we should redesign the wheelchair to allow people to maintain eye contact? These sorts of wheelchairs exist already. May be the emerging field of exoskeletons will keep MSers needing wheelchairs walking? Exoskeletons are very sexy at the moment and are being developed to enhance human performance; in particular for the military. Exoskeletons will not doubt be very expensive and out of reach for the majority of MSers. What we need is a solution now! We need to allow MSers to use wheelchairs and not be stigmatised. We need to refocus our attention on the wheelchair and develop ways to communicate its benefits and to get society to accept it. I would like to start a discussion around the wheelchair and explore ways of slaying ‘wheelchair stigma’!”
“MS is many diseases in one. Not only does it floor you when you are diagnosed with the disease, but in those with relapse-onset disease it gets you again when you enter the secondary progressive phase of the disease; the point you realise that you have a progressive disabling disease. And again when you need a wheelchair; I did not appreciate the psychological impact it has on you when you have to migrate from using walking aids into a wheelchair.”
“At Barts-MS we run regular MS Preceptorships to teach various groups about MS. Our course is based on using case studies to illustrate specific issues in relation to MS. During last week’s preceptorship one of our MSers volunteers, who is struggling to stay mobile using a walker and FES (functional electrical nerve stimulation), reminded me how stigmatising using a wheelchair can be as a person with a progressive disease such as MS. Please note using a wheelchair as an MSer is very different to using a wheelchair after spinal cord injury. The paralympics have elevated spinal cord injured wheelchairers to the status of being celebrities. In MS the deficit is not fixed and gets worse over time; a very different scenario and prognosis to those with fixed deficits.”
“I was making the point that using a wheelchair would improve his mobility. Instead of consuming large quantities of precious energy walking and exhausting himself, he could conserve energy for other tasks by simply using a wheelchair. It would also mean he gets from point A to B quicker and he would be able to get out more and do more. Despite the logic of my arguments this particular MSer remains determined to avoid using a wheelchair. He has tried it in the past and hated the experience. For example, when he used a wheelchair in the past he lost eye contact with people they tended to look down on him. He also noted that they tended not to talk to him, but rather directed questions and comments to his partner despite them be related to him. He was treated as an inferior being. He found the whole experience dehumanising. Why should being in a wheelchair change the way people treat you?”
“May be we should redesign the wheelchair to allow people to maintain eye contact? These sorts of wheelchairs exist already. May be the emerging field of exoskeletons will keep MSers needing wheelchairs walking? Exoskeletons are very sexy at the moment and are being developed to enhance human performance; in particular for the military. Exoskeletons will not doubt be very expensive and out of reach for the majority of MSers. What we need is a solution now! We need to allow MSers to use wheelchairs and not be stigmatised. We need to refocus our attention on the wheelchair and develop ways to communicate its benefits and to get society to accept it. I would like to start a discussion around the wheelchair and explore ways of slaying ‘wheelchair stigma’!”
“If you have MS and are using a wheelchair we we would like to hear your story. In addition, we need ideas! What can we do to destigmatise the wheelchair?”
CoI: I frequently refer MSers to wheelchair clinics for assessments; sadly I rarely address the psychological impact this has on the individual being referred.
I’ve used a chair for energy conservation a few times while traveling and it was a very humbling experience. The loss of eye contact and the view of the world from mid-level is very different. Have you given it a go yourself and tried a wheelchair for a day? Step outside the clinic and hospital environment and how many wheelchairs do you see in use in the world? I would venture a guess you find very few. Why don’t people in chairs leave their home more? Is it a psychological or accommodations barrier? Probably both. Destigmatizing the wheelchair requires familiarity and comfort with it, and that won’t happen until we routinely see users in public venues and see it demonstrated that it is acceptable and ordinary.
Or better still – develop drugs that keep young people out of the wheelchair.It's one thing to be 60 and in a chair and another to be in your 30s.I don't use any cos no need yet but what about scooters like people with weight problems use? Why does it need to be a wheelchair like in the old times?Also, I would generally welcome more blog posts on electrical devices like exosceletons etc. which can replace wheelchairs.
This wheelchair electric attachment looks really practical… you may find it usefulhttps://www.youtube.com/watch?v=p5vrYOcLqtA
Having used a wheelchair for the first time as an MSer in the airport it's a difficult experience as I disliked the change in attitude to me as I am mobile just fatigue when standing especially when traveling is a problem. I believe in challenging the brave cripple stereotype and this gives me the confidence to use a chair. I just used the chair to take part in a Mas band (caribbean carnival) and I did not get any photos taken of me by the press when dancing due to being 52 and not wearing a bikini (jokes) . Plenty of photos when in the chair which was a bit of a struggle as its a bit hard to engage in a dialogue during Carnival. I guess what I am trying to say with the waffle is the chair in my view should be deconstructed both to facilitate communication by making it higher and its meaning as a symbol of disability. Its a slow process but the more we are out and proud chair users the easier it will get. I can't be doing with the attitude of its giving up to use the chair. I would rather go places with the chair as an adjustment than say of well that's another thing I can't do. Finally the exoskeleton would make a fantastic Mas costume.
I'm a male who was a sports fanatic (running, diving etc.). I also loved the challenge presented by a long mountain walk…. MS robs you of that. When I near the time I need a wheelchair I know my time will be up. Wheelchair is to me, the start of the slippery slope to EDSS 8, 9, 10. As you say, if I had an injury which required a wheelchair, then wheelchair tennis or basketball would seem attractive. But MS, is much worse than that – it's manual wheelchair followed by powered wheelchair… When you walk around the poster sessions at MS conferences, or travel back to South Africa to rediscovery the beauty of the land, would you want to be doing it in a wheelchair. What about when you visit your children a university? MS takes a way much of what one enjoyed in life and precious things like independence. A wheelchair would be a metal reminder of what I have lost and how near I am to the dreaded higher numbers of the EDSS. Instead of redesigning wheelchair, wouldn't it be worth identifying ways to repair a damaged spinal cord. MS has one of the highest suicide rates (in men) and I suspect that the finality which comes with the onset of the need for a wheelchair is a major contributor. Others will make the choice of a wheelchair, unfortunately there are many like me who see it as the final nail in the coffin. I will fight for my independence, freedom and dignity for as long as I can. The time I need a wheelchair will be the time I know my battle is lost. Apologies for the long / blunt post – but I sometimes get the sense that neuros / others just don't get what MS does to you. The EDSS is the cruellest creation for a sufferer of this disease. The losses are unimaginable. Stopping progression, encouraging some repair should be the goal of research and will save people like me from having to call an end to a relatively young life because I refuse to be slumped in some dreadful seat with two oversized wheels. At the end of the day I'm a human being and what differentiates us from the apes is that we can walk tall.
It's sad that in 2015 we offering people wheelchairs and not the hope that this disease can be stopped and reversed. While it looks like great strides have been made in MS research, the sad truth is that when progression starts MS wins. I don't see a wheelchair as any compensation for loosing my ability to walk. Perhaps every MS neuro should have to spend a full week in a power assisted wheelchair to get a real sense of how degrading and dehumanising this is. No need to waste time destigmatising wheelchairs. Waste you time working out how to stop us from getting to the point where we need one. Neoprene knee support = fine (can tell people it was a motorbike accident); walking stick = fine (can tell people its from a motor bike crash); wheelchair = have to tell them that I've got a degenerative brain disease! MND Light. Stephen Hawkins without the astronomy PhD. No thanks.
While I love this blog for the information provided and the dedication of Mouse and others, it falls down on the big aspect I am seeking – hope for a better future. I know you only report the research which is published, but there's always a smattering of images of shrunken brains and wheelchairs which does nothing for my fragile state of mind. I'd really like a timeframe as to when we will see real breakthroughs in the disease i.e. what's coming in 5, 10, 15 years. I know it's crystal ball gazing, but that's better than nothing for me. This post is in the bucket called 'MS wins in the long-run' the inevitable rise up the EDSS collecting, canes, wheelchairs and then a mattress before you meet you maker. It's not the indignity of sitting helpless in a wheelchair that's upsetting, more the acknowledgement that you aren't that far from the top of the EDSS mountain. Getting and using a wheelchair isn't really the issue, it's the bigger picture stuff of (i) your walking days are over and (ii) when the wheelchair phase is over, you are facing you worst nightmare. No CBT or psycho-babble can prepare your mind for this. I am on the side of the man you mention.
I agree with you – the blog should focus more on fighting progression and starting remylination and not how we can start loving wheelchairs (I'd prefer a scooter cos wheelchair sounds so Victorian).At the German MS site there is some news that a drug for diabetes showed good results at saving nerves so we're getting there but it needs to be quicker – 10 years is way too long for most of us – give us a pill in 5 years that we can get prescribed to save nerves.
we can start doing cure of the week but the fact is if we start filling the pages with animal experiments but this is not going to speed up the process. l am not in the business of crystal ball reading as we cant predict what is round the corner. I have heard we will have the end of MS by 2015 in some meetings i have been to.
You have identified some of the problems of using a wheelchair. Have you ever tried to use one on the pavement, getting onto.a bus, or going into many shops? Very difficult to self propel along a pavement, crossing a road. Try paying for something by credit card, so often the machines are on a counter at eye height. I think every able bodied person ought to be chained to a wheelchair for 2 or 3 daysMany MSers, myself included, use a mobiity scooter, not such a humbling experience and you have more independence.
I use a wheelchair occasionally for energy conservation, during relapses and to get through airports. I echo the comments about loss of eye contact and people speaking to the person pushing my chair rather than me. I do get a bit vocal when that happens. I also bring poor shop layouts that prevent chair users getting to the products they want to the attention of staff.I think part of the solution is to educate the public – I'm going to do a little video and share it through facebook and twitter. Explaining how they can better interact with us when we're sat down and how it feels to be ignored. Maybe we should post photos of ourselves on twitter etc doing a range of everyday / more unusual things in our chairs. #wheelchairusersrock ?However, it is only wheelchairs that some MSers (and people with other reasons for mobility problems) don't want to use. I'm amazed at the reluctance of some to use walking sticks, walkers or rollators. To me they're just the means to an end but other people seem to see mobility aids as something to be avoided at all costs. They don't get out and about nearly as much as they could because of this attitude.
"In MS the deficit is not fixed and gets worse over time; a very different scenario and prognosis to those with fixed deficit",. When I got bad enough for a wheelchair, my partner said I could participate in wheelchair sports. How wrong they were. My disease progressed and my arms were too weak to keep a manual wheelchair and my fatigue would not allow me to paly wheelchair sport. I was envious of those who had far paralysed lower body thanks to a car accident. Bad enough – but they can build from stability. MS never stops taking away. Having a wheelchair for an MSer is no badge of honour. It may preserve energy etc. but as Spock said in Star Trek "it's life Jim, but no as we know it".
I'm a full time wheelchair user. I was using a wheelchair out of the house 6 months after diagnosis and full time after 8 months. I have never had these feeling that some people are describing towards my wheelchair, and I think, perhaps, it's because I didn't have the time to see it as this big scary thing in the future.It's a tool, just like wearing glasses is a tool. I need glasses, I wouldn't not wear them and struggle to see. When I was really struggling to use my walker outside the house I needed to buy socks. I had got myself into a department store that was part of a mall. I was extremely frustrated, because I had no energy at all. I remember saying something like "just get me any pair, it doesn't matter." We had started the process of applying for a power chair, so my husband suggested I try one of the scooters they had available for use in the mall. I sat on my walker and he pushed me to get it. My shopping experience became night and day. I'm not someone who enjoys shopping at all, but I realised that with my fatigue and walking issues, another part of my independence had been taken. Sure, I had to ask someone to reach the higher socks and pass them to me, but I had the energy to make choices in my own time and not worry about falling. It really opened my eyes. By the time I got my own chair my mobility had progressed to such a point that I needed it even more, but it was not a psychological issue to me.I have dealt with all manner of discrimination using my chair, from poor service to inaccessibility. I deal with it by advocating for disability rights. I am currently involved started a big campaign locally to get better HandyDart (paratransit) provision. I have complained to multiple stores and restaurants about service. I have had curb ramps put in by the council in my local area in parts that were less accessible. I speak publicly about MS. My approach is to move on and deal with it as best I can.Somewhat ironically, the lack of mobility isn't my "worse" disability and it's not the one that I feel limits me the most. My worst symptom is fatigue, physical and cognitive, and my cognitive fatigue leads to me losing my speech. That leads to way more discrimination than being in a wheelchair, and way more frustration.Yes, we all hope for the advancements that mean that the wheelchair is not necessary, but in the meantime, for many of us, it's a reality. If you need a wheelchair, use one. Look forward and not back.
I can handle disability, but the MS illness is horrible.I'm in my mid-thirties and a wheelchair user. It sucks but it could be worse. Just look at the plights of displaced Syrians and North Africans for perspective. There's always a worse situation.
Some great honest comments about wheelchairs – and the fear of them. Nothing frustrates me more than the photos on MS websites of the happy MSer sitting in their wheelchair smiling doing the thumbs up sign! There a photo at my train station on the platform showing young woman in a wheelchair with her arms stretched out with some slogan about freedom. My Victorian train station doesn't have lifts just a rickety staircase. I met a young woman of 22 with SPMS in a wheelchair. She was living with her relatively elderly parents and they had their garage converted to downstairs bedroom and washroom. I dawned on me that the rest of her life would be spent in this wheelchair. Surely the top priority should be getting treatments to marker to stop anyone this young having to be a fulltime wheelchair user! Destigmatising the wheelchair isn't the issue. It's preventing or repairing the damage MS does to the spinal cord so that no young person faces this dreadful situation. I'm super annoyed today, because a bunch of neuros will be discussing academic stuff at MS Frontiers and they just don't get it in terms of the dreadful impact this disease has on young people.
Yep, I share your anger.I've been to an assessement last week with with a neuro cos I'm applying for disability pension (or what it's called here) and when I mentioned that I am traumatised by the prospect of a wheelchair cos I'm still young he said: look, I've got a patient who is 63 (so double my age) and she uses a wheelchair, is so happy and even still works! And the whole assessment went on like that – so I was stigmatised as a loony cos I'm young, scared of getting disabled and unable to work but hey, there is a lady who is happy in a wheelchair and forces herself to work at 63!I probably won't get the few quids and on top of that am labelled as oversensitive. So much for that. I wish someone would put this doc into a chair for a week with no money to live on and then we would continue our conversation!
Do you think that the 22-year-old woman has no quality of life? It may be diminished but she has to make the best of it, as might you.Please don't be vexed by disabled MSers. Don't see us as bad omens.
I'm not sure I like your comment, but get your fear.Maybe some MSers who get to EDSS 7 just learn to live with it. A certain degree of acceptance is vital. Adapt and overcome.
I share your anger and frustration. Too many MS conferences highlighing the great strides that have been made in MS research. Contrast this with MSers in their 30s and 40s having to rely on wheelchairs to get around. A sad state of affairs when in 2015 neuros have to play Paul McKeena and try to convince MSers that wheelchairs aren't that bad "look into my eyes, when I say the word wheelchair you will wake up and be thrilled to have a shiny new wheelchair". NO THANKS.
Surely stopping someone needing a wheelchair should be the primary outcome of all MS drug trials, not relapses or lesions.
Isn't it strange the air travellers that jump into the wheelchairs and buggies waiting for us at airplane doors have no qualms about using them. They're probably the same people that use disabled blue badges to park while they do their shopping. I don't care anymore, if I need my wheelchair I'll use it, cos I have to.
"De stigmatizing the wheelchair". This is the state of MS in 2015. We cannot ignore the reality of this disabiling disease and must make due but………sigh…….
"At the end of the day I'm a human being and what differentiates us from the apes is that we can walk tall."No, it is not. What differentiates us as humans is the ability in language, communication of artistic and theoretical concepts, highly developed empathy, intellect, ingenuity. The problem is the fact that many human beings, whether they have a neurological disease or not, do not use these qualities: Many hardly bother to use their brain at all. The wheelchair is not the problem, any more than the bicycle is. It is a means to get around.