Flash Says…

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.