Flash Says…

Disability myths exploded

Posted on: 2012-02-10

I often read ignorant comments in newspapers – or even whole articles – which clearly do not understand the disabled person’s situation nowadays. Perhaps these commenters do not count any disabled people among their friends and so have no personal experience or understanding. Don’t worry – I’m here to explain the basics and explode some disability myths!  Let’s start with some very commonly heard misunderstandings.

 
We get a free car

  • No! However, if the disabled person qualifies for Disability Living Allowance at the highest rate for Mobility (i.e. can barely walk or not walk at all), then they may opt to give up this money in return for use of a car via the Motability scheme. It’s essentially using their DLA mobility assistance for a hire-purchase car rental. Even then, any but the most basic models of car will require a deposit which the disabled person is required to pay, and you have to go through this process every three years.
  • Not everyone who is disabled with mobility problems will qualify for the higher rate of mobility DLA, so they do not have the option to get a Motability car.
  • Those who do get DLA may need it for other things – for example I spend mine on minicabs to get around. The higher rate is £54 a week (in 2012) and this doesn’t go far enough if you have other transport and mobility needs to pay for, so not everyone will want to give this money up in return for a Motability car.

Truth: There is no such thing as a ‘free car’. If a disabled person gets DLA at the higher rate for mobility then they can opt to give it all up to pay for a Motability car, but they may have to fund a deposit out of their own pocket to get the car that they need. If they give up the mobility component of their DLA then of course they don’t have it available for other needs.

 

We all have a carer (aka “Hello love, who’s with you?”)

  • No! Many disabled people live entirely independently, on their own.
  • Other disabled people live independent lives with the help of Personal Assistants (PAs). Note the term PA – the difference is that while a carer may take on a very medicalised, nursing role, a PA will do whatever the disabled person independently asks them to help with.
  • We don’t all qualify for care or assistance. For example because I can wash myself (albeit with aids) I don’t qualify for any help from social services, even for other tasks that I need help with such as preparing food or cleaning safely.

Truth: Some disabled people employ Personal Assistants to enable them to have an independent life; some have carers (in the medical sense) to tend to them; some have long-suffering spouses who muck in as necessary despite being unpaid; and some do not have, or don’t need, anyone to help them!

 

We get a wheelchair if we need one

  • Not necessarily. And those that we do get provided can be too basic – heavy and hard to manoeuvre or lift into the car – for our needs. To learn more, please read my previous article ”Your legs came for free – why don’t my wheels?”. My own chair cost over £2000 but the NHS only contributed £700 towards it, the cost of the more basic model that they would fund. This despite Wheelchair Services agreeing that the £2000 wheelchair was what I really needed. I had to pay the rest.
  • There are charities such as Whizz Kids who try to plug the gap and provide the chair which is actually required. The existence of these charities proves that people do not always get what they need through the NHS.
  • Even when a wheelchair is provided through the NHS it can take time. My first chair took 8 months from first appointment through to delivery.

Truth: People who need them will usually be offered a wheelchair but it might not be one they can lift, or propel safely. Many people revert to buying their own, with their own money or if they are in England they may get a partial contribution from the NHS (known as the ‘voucher scheme’). The difference in cost can be many hundreds of pounds, or in the case of powered wheelchairs, thousands.

All of the above points can be summarised as a belief that “we get the help we need” and as you can see, no we don’t! We don’t all get care, there is no such thing as a ‘free car’, and often the NHS can only provide a basic model of wheelchair.

Things are set to get even worse for disabled people when the Welfare Reform Bill takes away more of our funding, removing DLA and reducing the entitlements for those who cannot work. But that’s a whole other story!

Now to a few points about people’s conditions.

 

We all want to “get better”

  • To understand what’s wrong with this statement, you need to understand the difference between the medical model of disability (which says “What’s wrong with you and how can we make you normal?”) and the social model of disability (which says “What access barriers do you have and how can we remove them?”). (For more information see this page on the BFI website.) However, what you need to know is that the social model is preferred nowadays, and so disabled people’s differences do not mean that they are somehow “broken” and need to “get better”. We just need any barriers to our access to be removed, so we can be equal!
  • Many Deaf people see their deafness as part of their culture, and those people use the term “Deaf” with a capital D. There is a whole Deaf community, and they have their own pub nights, discos, churches etc. Deaf people do not necessarily see it as a part of themselves which should be changed if it can be. This means that cochlear implants can be very contentious among d/Deaf communities.
  • Some people who were born with their impairment – for example someone with Cerebral Palsy – will just see themself as “me”. It’s the way they’ve always been, and if the impairment was removed they wouldn’t be “them” any more. This also applies to some people with mental health conditions which influence their personality. So not everyone would want to be “fixed” even if it was possible.
  • Other people will see their impairment as being static, so no matter how much effort they put in, it would not improve. For those people there is no point in hoping for a cure.

Truth: Not everyone with an impairment wants it to be removed or “fixed”, even if that was possible (which of course is not always the case). Of course it is a matter for personal choice – some disabled people are forever searching for solutions to improve their condition, but others are not. This area can be a minefield for the non-disabled person to negotiate but if in doubt, defer to the opinion of the disabled person that you are dealing with. This also shows why it is not correct to ask “what’s wrong with you?” – the answer might be “Nothing, I’m fine!”

 

We are contagious

  • Most of the causes of impairment cannot be caught. Of course there are some cases where the cause of impairment is a virus e.g. HIV. Even then, you can’t catch it from talking to us or normal discourse.
  • There will be other examples where the original cause of impairment was a virus such as measles, or perhaps a virus has triggered a chronic fatigue condition, but this was in the past and the person is no longer contagious.

Truth: Generally not! It is very rare that the disabled person has a contagious condition. Don’t let the fear of contagion put you off talking to or spending time with a disabled person. However if you have good reason to be suspicious, and a real need to know – for example if you work as an assistant to the disabled person – then just ask the person concerned if they are currently contagious or if there is any contact that you should avoid. Other than that, carry on as normal.

 

It’s ok to ask “What’s wrong with you?”

  • No, it’s very rude! It is none of your business why someone is disabled. Just because they may seem different or use an aid does not make them public property!
  • As above, not everyone believes there is something ‘wrong’ with them

Truth: You should avoid this kind of question as it can be offensive. If you need to ask the disabled person about their impairment, e.g. so you can provide a service to them, then you should ask them about any access needs they have (and focus on how to address these needs, not what the ‘cause’ may be). Read about the Social Model of Disability and then focus on how you can remove any barriers to their access.

 

If  you can walk, you can’t be disabled

  • Not true – there are many “invisible disabilities”. For example there are conditions which cause pain, or would limit the ability to walk far, which you cannot detect from looking at someone – lung or heart conditions for example, or joint pain. Worse, people with invisible disabilities often live in fear of being judged or even reported by neighbours who don’t understand their condition.
  • Plus of course, not all impairments are physical! People can be disabled by mental health conditions such as bipolar disorder or agoraphobia.
  • There are also variable conditions. Someone may be able to do an activity one day, but not the next. Indeed, sometimes undertaking an activity (like going for a walk) might mean that they then have to take time to rest and could not manage to walk for a few hours or even days. You don’t see the rest time as it takes place behind closed doors.

Truth: If the person self-identifies as disabled, then they probably are! You certainly cannot tell from looking at someone whether they are in pain, or will have to rest when they get home. To be honest, it’s probably none of your business.

That’s cleared that up! Finally a couple of myths on a hot topic…

 

We don’t go to work

  • That’s just not true. I know disabled people who work and if you think about it, maybe you do too. How about the actor Verne Troyer (Austin Powers’s Mini-Me) or the reporter Frank Gardner?
  • In fact some disabled people rely on their Disability Living Allowance to enable them to work – perhaps it pays for their transport to get there, or for ready meals when they are too exhausted after a day’s work to make food safely.
  • There is also a scheme called Access To Work, run through Job Centre Plus, which exists to remove barriers to disabled people working. For example it can provide specialised seating, or even an assistant if necessary, so that disabled people can work where possible.

Truth:  Disabled people do work, but perhaps not in proportion to their non-disabled counterparts, or perhaps they have invisible disabilities so you don’t know that the person at the desk next to you is actually a disabled person.

 

We are all on benefits

  • No – not everyone qualifies. Whether it is Disability Living Allowance for everyday needs, or Employment Support Allowance for those who can’t work, these benefits are very hard to qualify for, or to prove entitlement. Many disabled people do not qualify for a disability benefit.
  • Not everyone who is entitled to a disability benefit will claim for it. There are many reasons for this, from someone who is in the lucky position to feel they do not need the money, through to the fact that the forms are long and daunting and emphasise what you cannot do – some people find this too hard to face. For more information please see my previous article DLA – just a form filling exercise? If only it was that easy!

Truth: Not every disabled person you see will be on benefits, whether that is due to not being entitled or just not choosing to claim. But in any case, bear in mind that disability benefits should be there for anyone who needs them, as they cover the additional costs of living that we have to bear – no matter what our backgrounds. Also, the fraud rate for disability benefits are very low – about 0.5% – do you really begrudge some extra money to people who genuinely need it?

 

I hope you’ve found this article helpful and will share it with your non-disabled friends and colleagues – whether they voice it or not, I bet they’ve wondered some of the questions above at some point! If you can think of any more myths about disabled people which need exploding, please leave them in the comments section. I’ll be delighted to read them.

29 Responses to "Disability myths exploded"

I’ve come across people in some areas of disability who think that spreading fear about the contagiousness of their condition is a good way of raising awareness and, hopefully, funds for research etc. Last year someone gave a ridiculous speech at an ME conference in London, claiming that the virus she believed caused ME could, according to some study, be spread by mere breathing. If that were true, a lot more carers for people with long-term severe ME would get ME, and they haven’t. The claim opens up people with mild to moderate ME (if someone is bedridden and never goes out, it’s less of a problem) to a stigma that is just not necessary. It struck me as very desperate and irresponsible.

Wow, that does sound irresponsible. I’ve not heard of that before. Thank you for commenting.

There are also various myths about blue badges – that if you see someone getting out of their car and walking then they don’t need one; that most of the time they are abused; that they can only be used if the disabled person themself is driving; that parents with ‘naughty’ children (read: ASD or similar) can get one just because they don’t want to walk across supermarket car parks, and so on, and so on. As far as I understand it is very difficult to get a blue badge, it’s not always obvious by looking at someone to tell the reason why they need it, and I would prefer to assume they have a genuine need for it than to accuse them of using it fraudulently – but not everyone sees it that way.

In a way I was trying to get at the “if you can walk you don’t need a blue badge” with “if you can walk you can’t be disabled”. I completely agree with your comment. I’ve been told I “don’t look disabled” and I am “too young to be disabled” etc. by people who are waiting for a disabled bay and see me using one.

When people say “you don’t look disabled” I say “Oh! You don’t look judgemental!” and if asked to explain I ask how they could possibly tell how much pain someone is in just from looking at them. (I get a bit wound up by that, as you may be able to detect!)

I don’t know how much blue badge use really is fraudulent; I keep hearing different stats for that. Do you know any figures?

Thanks for commenting by the way!

Another example on the don’t ‘want to get “better”‘ theme are people who self-identify as neuro-diverse, a group label that covers autism, aspergers and a range of other development neurological issues and other conditions which influence the way in which people think and perceive the world around them. Being different doesn’t mean being broken, it just means being different.

I completely agree David. My daughter is severely autistic and she just wouldn’t be her if she was suddenly cured. Some parents spend their lives and all the money they can get on trying to find cures and therapies, but I believe that as long as she has a good life, opportunities to develop and people to encourage and care for her, she will be happy, and that is the most important thing to me.

I’m autistic and that part of me is just me. I do not want to fix it at all. I find ways of working with my autism to have a better life rather than look for the cure or something to change me. My other condition is Tourette syndrome and I would love for that to be cured! It is hard work living with TS because it changes every day sometimes! I get accused of ‘faking’ a lot because some days I can’t walk and have to use crutches, other days I can’t see and have to use a guide cane (try walking with your eyes permanently rolling into the back of your head!) and on lucky days (which seem to be getting rarer) I have only mild tics like sholder shrugging. When people see me with the crutches/cane one day and then without it another day they think I am faking it but in reality I never know what my condition will do to me next.

But I will shut up now and instead say well done on the article.

Thank you, I should have included neuro-diverse of course. Well spotted. I completely agree!

People often assume that I want my disabilities to go away. Admitedly the OCD is debilitating, and dyspraxia isn’t uch fun, but my tourettes makes me who I am. I wouldn’t be me if I didn’t randomly twitch. My friends all love me for it, it is my unique selling point. It also makes me very bubbly, enthusiatic and energetic. I don’t want to be “cured”. If a magic pill could make it go away I wouldn’t take it. It’s who I am.

People don’t get that – they often assume that everyone wants to “be fixed” even if it’s impossible. Personally I think I WOULD prefer to be free of Ehlers-Danlos Syndrome – I miss having a career and being independent, and I think if I didn’t have a reason to campaign for disabled people’s rights, I would still be speaking up for something worthwhile. But then I know others who wholeheartedly feel their impairment / condition makes them who they are, and they wouldn’t change that for the world. And I think both views are right – it’s down to the individual and how they feel.

I have Spina Bifida and i very recently had a doctor look at my feet for possible corrective surgery and say ‘We can get you walking much more normal/better – no problem!” – tried to explain that I thought ‘normal was a relative term. That the fact that my feet would be ‘straighter’ wouldnt necessarily mean I walked ‘better’ as I have no balance, walk with crutches etc… he didn’t seem to get it. And if doctors don’t get it… !?? I am fiercely independent otherwise, work full time, do have a car and live on my own without carers.. life is grand it really is but I am extremely lucky that I’m surrounded by people who don’t give my ‘disability’ a second thought.. :)

Doctors are wrapped up in the medical model, and I can understand that but they need to know when to apply a bit of common sense too!

As well as having mobility problems (2 crutches when out) I have rapid cycling bipolar disorder.
Whilst I wouldnt wish the downside of my conditions on anybody, the way I perceive things in light of them has made me alot more open minded, tolerant, empathic and I see things from an entirely different perspective………….. this I would not want to lose, because it is who I am and that side of me would disappear if that magic cure could be found.

It’s interesting, the concept that people with disabilities do not always want to “get better” or “be fixed” has really got people talking, I can see that there are people with a wide range of impairments who wouldn’t change who they are. And yet I can imagine that people who have not experienced disability would just automatically assume “of course they want to be normal, who wouldn’t?”

Hi my son has really bad twitches and muscular spasms and people are so cruel, i put off applying dor any entitlements for him as i was made to feel that he wouldnt deserve and DLA. I have now applied and am waiting for a response but am worried that people will judge him even more

How sad that other people’s ignorance would make you feel that way. I say apply and find out that way whether you are entitled, social services could also send an OT round to suggest any aids that would help if appropriate? Nobody will know if you get DLA unless you tell them, so don’t let people’s judgemental actions put you off!

Love the point about wheelchairs. I have fibromyalgia and most of the time I can walk, albeit painfully. There was no way the NHS were going to fork out for a wheelchair for me. Add to that I needed an electric/power chair, as on days when my legs aren’t working, there’s no way my arms are going to be strong enough to self propel! So I paid out of pocket (thank you credit card company!) for my own second hand power chair, the most basic I could find.

Ouch. I wish the NHS had more money for wheelchairs so people could get what they need. Even once mine had been approved in principle it took a few months before they had the money in the budget to sign off on their contribution. I don’t envy the staff of wheelchair services, who are doing a tough job with nowhere near enough funding.

Thanks for this Flash and heaven preserve us from ‘what everyone knows’! As you know, it’s one of my all time bugbears!

Very well written, I suffer from fibromyalgia/cfs and a few otgo with the disability,I managed to get my Dla after applying three times, I have worked all my life and was a single parent while I was working,I do not work at the moment due to being of ill for over a year,I would love to work but no employer will take me on due to my disability,

Thanks! Yes, of course that’s another issue – that disabled people often want to work but cannot get a job because employers would rather take on someone able-bodied. Horrid situation.

Got a few communication/language based ones: a) you can’t tell who has an intellectual impairment by looking – in both directions; you can’t identify its presence OR its absence by any physical characteristic a person might have, including things like the visible facial features shared by most people with Down Syndrome, the ability to make eye contact or control your own saliva, and whether or not you have involuntary movement or vocalisations.

and b) it’s not just unhelpful but extremely rude to try to speak in a ‘special’ way to someone you have assumed to have an intellectual impairment – regardless of whether they actually do or not. If they’d like you to slow down, explain terms or use more straightforward language, they’ll say so. It’s not your decision.

and while I’m at it c) there is NOTHING about someone using non-speech communication that automatically means that the person’s ability to hear, understand and respond to the spoken word is impaired. Don’t make me waste time and energy by having to tell you three times to please speak directly to me, in an ordinary way and NOT to any person accompanying or supporting me.

oh and d) Sign language users will not get anything useful from you trying to sign if you don’t actually know any sign language. You will just look very silly. Not all sign users are Deaf, and those that are can usually lipread. Save the frantic made-up gestures for a game of Charades and stick to speaking properly and making sure that we can see your face while you talk so that we can lipread if we need to.

Aaaargh. Sorry, Flash. Think I needed to get that off my chest!

No need to apologise at all! They are all very good points, and I can only begin to imagine how frustrating it is when people treat you that badly. Just because you need a communication aid does not mean you are stupid, or need someone “in charge” of you. Ugh!

I’m afraid I’m one of the people who thinks they can sign – I studied to Level 2 BSL but haven’t kept in practise. That said, when a Deaf man came to visit my neighbour and she wasn’t in, I was able to speak to her on the phone and sign to him what she said (wait, I’ll be there in 10 minutes) which made me feel the whole thing was worth it! And, in the past when I was just self-taught but my then-boyfriend was Level 1, we found a frantic man on a nightbus who was trying to get people to understand his signs; we understood where he was going, that his hostel would be closed – and took him home to crash on our sofa overnight. He spent a long time telling us about his father being shot in Northern Ireland, scary stories, before we crashed for the night. I am aware that I’m out of practise and should probably only be considered Level 1, though. And I don’t think I’m better than I am at signing, I hope! “Know your limitations” is good advice for everyone, in everything, at every time! So I hope I realise I can only recall the very basics – shame but I had nowhere to practise the skills.

Anyway I digress. Thank you for your comment – very valuable points.

I’ve always found the situation I find myself in with Disabled Passenger Seating quite amusing. I’m epileptic and have no easily realised aspects regarding any disability so I’m well aware that other people may be in similar positions. So, when getting on a bus and the designated seats have been taken the onus is immediately on me t’ inquire of the person if they have a disability, I usually don’t. Most people would not begin t’ contemplate why sitting there might be important t’ me unless I treated them to a demonstration. Top decks of Double -deckers are pretty much cancelled as a possibility as in case I injured myself paramedics would have difficulty getting me downstairs, unless I’ve done that bit of hard work for them mid fit. And that is why the space near the seats is useful in my case, I’m less likely t’ hit something around me and medics have more space around if needed. I’m uncomfortable with public transport for numerous reasons and usually just take the line of least resistance, stand or go upstairs. Few people would find any humour in this but when y’ live with a disability even the darker aspects can have a bolstering effect when seen through the right spectacles.Having a fit I once fell from the back of a lorry with a box of glass tumblers, falling on my head into the glass. One person fainted two people were sick, RESULT! X

Thank you, this is great! I’d also like to add to the other commenters here about the, ‘Can’t get better/won’t get better, therefore lazy’ mentality. It comes up in the case of education, as someone with dyslexia and ADHD, it’s not going to go away or magically ‘Get better’. I usually explain to people that ‘getting better’ for me is working out how neruotypical people want information from me and how to deal with them.

I will be reblogging this, it is brilliant.

I am 26, and have varying degrees of pain and mobility issues depending on the day. Very occasionally I can walk 50yds without any aids and not be in massive amounts of pain, most days I need crutches and some days I use a wheelchair.

I regularly get asked “Have you broken your leg?” and when I say no, it is arthritis, they follow up with “Will you get better?”.

Thanks, I’m glad you enjoyed (or at least appreciated!) the article.

It’s so annoying when people pass comment. It’s none of their business what’s wrong, and I’m sick of being asked!

Reblogged this on Fighting Arthur and commented:
This is well worth a read

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