Flash Says…

Archive for the ‘Disability’ Category

I take a number of tablets every day. I’ve more or less given up respecting which are due every six hours and which every eight; I take them all every six hours and hope that things even out while I’m asleep. But that’s not what I ought to do. So would you like to write me this app?

I need far more than just a few self-set alarms on my phone! I’d even be willing to pay for an Android app, if it does the following:

  • Records the details of at least 20 medicines and the intervals in which they may be taken. This is important because phones and even special pill reminder machines only have 5-8 alarms that can be set. I have 11 meds which I need to take every other day, daily, twice daily, every 8 hours, and every 6 hours. Moreover, if my nausea is really bad when I wake, I take a tablet that can only be repeated every 8 hours. If nausea is less bad, or dizziness is worst, I take one that repeats every 6 hours instead. See how easy it is for even an intelligent person to cock this up?
  • It should respect phone settings – not alarming when phone is off, going to silent or vibrate when ringer is set to this, etc. but still showing on the screen.
  • I would like to turn off the alarm, by telling it “I’m going to sleep now” and to turn alarms back on by telling it “Im awake now”. At the point of being told I’m awake, it should tell me which meds are due and restart the countdown for each med at the point that I say yes, I’ve taken them. I guess if the phone is turned on after a period of being off, it should also check then whether any meds are now due (is that even possible?)
  • “Ive taken meds” should require a tap to confirm, in case I fell asleep again / got distracted after it reminded me they were due. Not sure how we deal with choosing not to take some – maybe there could be an option for each med to say whether it is regular or optional, and whether you want to be reminded about it whenever it can be taken, or only if it was already taken that day? Maybe an “I’ve taken all of them” button but also a “let me tell you which I’ve taken” button which then leads you through each med that was due – have you taken this (y/n)?
  • There needs to be some way of dealing with a reminder to take meds when I don’t have them with me. Maybe options like “I’ve taken them” “Remind me again in 10 minutes / 30 minutes / an hour”
  • It would be useful to be able to press a button and find out “What can I take now?” – for example if the pain is really bad and I want to know if I can take that extra NSAID or not. Particularly useful for people who have some meds which are optional and only taken as needed, so they may not be regularly reminded, but are an option if necessary.
  • It should keep an inventory. That is, each med should be able to be programmed with how many tablets you have, and how many you get per prescription or packet. Then when it thinks you have taken enough that you have only enough for a week at maximum dosage, it prompts you to get a repeat prescription / buy more. The inventory must allow for tablets which are taken two at a time. For example I have 2 x 30mg dihydrocodeine as I find it acts faster than 1 x 60mg.

So in summary
…Alarm options should be “Not taking any” “Remind me again in…[10 mins / 30 mins / 1 hr]” “I’ve taken some [leads you through which ones]” “I’ve taken them all!” and it should reset the countdown for each med at the point you confirm having actually taken it, rather than the time when the alarm went off.
…General features should be buttons saying “I’m [awake / asleep]” “I’ve taken something extra!” (for tablets taken as and when, or not every day) and “What can I take now?” as well as a med management menu (add / remove / edit a med)
…Settings for each med should be name, interval when it can be taken, number taken at once, remind or not?, and how many you have left. All of which can be entered / configured by the user.

So, do any of my geek readers have the ability and time to make such an app? I’d be glad to test it!

And my disabled readers, would this be useful to you? What would make it more useful?

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There is a petition doing the rounds, complaining that a wheelchair user cannot be seated with their family at the Paralympics because at the time they tried to book, the only available seating was a wheelchair bay next to a single seat. Several people have sent me the petition, assuming that as a disabled person myself, I would agree with and sign it. In fact, I think it is spurious to produce this complaint just two weeks before the event, and that if you want to campaign, there is a better time and reason to do so…

Why this campaign is badly timed

Tickets for the Paralympics went on sale a year ago. At the time I, as a wheelchair user, was told that every effort is made to keep wheelchair users with their friends. But with only two weeks to go, trying to buy tickets and finding there isn’t a space where your whole family can be accommodated around you is hardly a surprise. The time to complain – if it was relevant – was a year ago.

The tickets have been sold. The Paralympics will be set up for the seating that has already been purchased. They won’t change their set up at a fortnight’s notice!

A wider campaign?

I attended the Olympics and at both the venues I found that wheelchair bays were next to a seat for your PA (assistant), and so it repeated: bay, seat, bay, seat. This is ideal for couples or single wheelchair users who may or may not have a PA, and a free PA ticket was included with every ticket for a wheelchair user.

This is also the way it works at Wembley normally, at many gigs and festivals. If complaining that you can only take one person with you and not your whole family, why not make it a wider campaign, to tackle the policy in general?

Provision for disabled people is always limited (as are regular tickets – there’s no infinite supply) and so space is at a premium. Sports grounds and venues have a set number of spaces for wheelchair users. Festivals will build viewing platforms to accommodate the tickets they have sold to disabled people. Although I think most events have the balance of accessible seating right, because wheelchair spaces are usually last to sell out when the normal tickets are all gone, I have still experienced a crush on a viewing platform, where there wasn’t even space for my PA, only for wheelchair users themselves. So actually, I would rather that you could not bring your family onto the viewing platform or into the wheelchair spaces. Your children could be denying a ticket to a needy wheelchair user who could have used it instead.

So what’s the solution?

When I attended the Oval last year, I was allocated a wheelchair bay and a seat next to it for my PA. My friends were accommodated in the row immediately behind us, so that they didn’t take up any wheelchair spaces, but we could still chat together when we wanted. Many venues will sell tickets in the row immediately in front or behind for the rest of your friends or family, so you can still be near each other and pass around the sandwiches. This is ideal – everyone together, with no abuse of a wheelchair space by an able bodied friend. If the venue you’re visiting won’t offer this option, that is the time to complain – and campaign.

I roughed out this article from bed over a week ago. It’s taken this long for me to have both the physical energy and mental stamina to type it up. Ironic, then, that I was writing about how hard it can be to manage a fluctuating condition…

When I was a teen, my best mate had chronic fatigue syndrome. We would often make plans to meet up, but often I would receive a phonecall just as I was putting my shoes on or getting ready to go out, saying “I’m really sorry, but I can’t”. I stuck with it – I trusted and believed my friend – but I didn’t really get it.

Now I’m in that position. I get it, alright. So let me explain how it is, why I can be unreliable and prefer to say that I will let you know how I am on the day. Or perhaps we made plans, had fun on one of my “good” days, and now you’re wondering if I’m really ill at all?

Weeks 1-2: I was ill, with exhaustion and a nausea that stopped me from eating. I thought “Ok, I’ll cancel plans, and when I’m over this bug I will reschedule everything”. No problem, after all everyone gets ill now and again.

Weeks 3-4: Shit, I’m still ill. I’m spending more time in bed than out of it. What’s going on?

Month 2: Think “I’m clearly still ill… I’ll see the doctor.” Of course, I can only get to see the doctor when I’m relatively well, so I can think coherently enough to make the appointment, and drive myself over there. My GP says we will “watch and wait”. So I agree, thinking “this is inconvenient, I won’t reschedule things yet, I don’t want to let anyone down.”

Then I had a good week. “Hooray! I am cured! Reschedule everything!”

A few days later the fatigue hit me again. Oh, shit.

Eventually you look back over your diary. In my case I had the horrible realisation that not only was I still ill, but that I was still getting worse. But I couldn’t just cancel life. So I arranged to see a few good friends again, with the caveat that if I was ill, I could take a raincheck on the day. However, some places – medical departments, hairdressers etc. – require advance booking. So I made plans, in the hope that they would work out. However, it was time to write to my GP, to let him know why I cancelled an appointment two weeks in a row – I couldn’t get out of bed. He needed to know how bad things really are for me, even if he couldn’t do anything about it other than repeat that we “watch and wait”, a phrase I have grown to hate.

You come to realise that you have no control over your life. And aside from the depression of not being in control of your health or your capacity to do things, you think “how can I take the power back?” Nobody seems able to help. It is now month 9 for me and there is no sign of my illness easing.

As someone who (also) has a long term disability (a painful joint condition affecting my mobility) I already knew about pacing: the principle of working within your limits, knowing that if you overdo it – whatever that may mean to you – that the next day will inevitably be a day of pain, exhaustion and enforced rest. Infuriatingly, I can’t get this theory to work in reverse…

So if I have a medical appointment, or even if I want to go out with friends, I know that I must keep the following day clear for recovery. But even if I rest for the day before an appointment, it is no guarantee that I will be alert and ready to go on the day itself! I don’t know whether I will be well enough to get myself across town to the hospital department, despite all good intentions. And last minute taxis are expensive!

That’s why I’m unreliable, a flake, or whatever you’d like to call me. I’m at the mercy of my health, but if I’m unwell it’s not because I’ve been irresponsible, overdoing it or pushing myself too far – it’s just bad luck. When I say “I’ll come if I can” or “I’ll confirm on the day” then you know that I want to see you and I’ll do everything I can to be there, but sometimes my will is not enough.

It’s not all doom and gloom. As long as you don’t want to meet me before 3 in the afternoon, or to travel far from home, then chances are good that I will make it. This week I’ve hosted a friend (who had a 90 minute commute to see me, bless her), visited a local art exhibition cum party, and been out for dinner with family. I’ve also spent a lot of time in bed, in pain, or both, but at least that’s not been the whole story and I’ve made some happy memories along the way.

Chronic fatigue is one of those conditions that people don’t seem to believe in, until it happens to them… I see friends and acquaintances thinking this, not liking to say it until I do, whereupon they look relieved and agree. But whatever the cause of my symptoms, the illness has certainly struck me down, and all I can do is work with it. Fighting will just wear me out, and achieve nothing.

Whatever their diagnosis, if you have a friend with a fluctuating condition, please give them patience and understanding in the knowledge that it is probably frustrating them far more than you can imagine. And your continued friendship and support is probably one of the things which is keeping their hope going. 

I awoke from pain last night. The cause? I was lying on a small wrinkle in the sheet. That probably sounds ridiculous to you, but it’s only in recent years that I have realised that not everyone feels this way.

As with other physical issues as I grew up, I assumed that everyone experienced the same as me and that if nobody complained it was because they were quietly putting up with their pain, and I should do likewise. Even now I don’t know whether this increased sensitivity is an artifact of the Ehlers-Danlos Syndrome that I was born with, or another peculiarity.

Memories of finding touch painful go back into childhood. I clearly recall my mother touching me, fairly lightly, on the arm. I instinctively yelped “ow!” Her voice was a mixture of laughter, sarcasm and disbelief as she said “don’t be silly, that didn’t hurt you!” But when we visited relatives, she would still remind them “Flash doesn’t like to be touched” as they approached to say goodbye. Perhaps people thought I was emotionally cold, but being touched can be physically unpleasant.

Besides pulling the sheet straight in an attempt to banish wrinkles, I’ve always had a rule about not eating toast or biscuits in bed – the sensation of trapping a crumb between sheet and skin can be quite a discomfort. I also react to a loose hair against me in bed or inside my clothes. Fortunately, I am quite bendy so it’s easy to sweep out the offender!

This reactiveness makes itself known in other ways. My husband will lovingly joke about “my OCD”. He is referring to something I call “needing to be balanced”. For example, if I touch between my first and second finger, I need to touch between all fingers in a similar manner. I feel a need to be equalised symmetrically. But this isn’t a mental hang-up. After the touch, a sensation remains – sometimes a memory of the pressure, or perhaps a tingling. This sensation difference drives me to distraction, but if I am “balanced” by touching every finger (or whatever it may be) in the same way, everything feels the same and I can forget about it.

Some feelings don’t need to be “balanced” – holding a pen, or shaking hands, can remain one-sided. I’m not sure why this is – but sensations that I don’t feel very often may need to be matched.

There are other ways that my sensitivity irritates me, in particular to taps and bumps. I am talking about something relatively slight; if my husband slaps his hand down on the arm of the sofa, I feel the jolt through the sofa at the other end. Today, he flopped down on the bed next to me and the bouncing motion hurt. If someone bumps against my wheelchair, or sometimes just leans on its handle, I feel this, certainly as discomfort but often as pain.

Rarely, I have days when I cannot bear to be touched at all, when wearing even loose clothes is an irritant, when I don’t want my husband to hold me. Fortunately, days of such intensity don’t happen very often.

So, why am I telling you about my “touch sensitivity”? Firstly, in the hope of hearing from people who can relate to this. Do you feel the same? Please share your coping strategies in the comments below. I can’t be the only one with this condition! Are any fellow “bendies” affected? Is this what is known as hypersensitivity?

Secondly, this article is written by way of explanation and apology to anyone who I’ve glared at or flinched from. Perhaps you stretched out your legs and your shoe touched my wheelchair? Or maybe you patted me on the shoulder in a friendly greeting? This is the reason why I pulled away, or gave you an irritated look. It’s about pain, and not that I am being pernickety about personal space… although perhaps what I really need is a cocoon.

I have been through a marathon of my own… in order to buy Olympic tickets. Hooray, I’ll be able to enjoy the celebrations. But why does this matter so much to me?

You are probably not aware of my backstory. Well, I live about 2 miles from the Olympic Park. I’ve been so excited since the Olympics were awarded to London. Such a great event, on my doorstep! Amazing! So I was keen to buy tickets, to give my support and share in the experience.

The initial ticket phase was open for a few weeks. I had a quick look and realised I would have to spend quite a long time analysing the events, the session codes, the price ranges, and so on. It would take me a while to sort out. So I allocated the last week of the sale period for working all this out and taking time to make a coherent application. The sale dates were put onto my wall planner so I would be sure to make time for it.

My dad died on the weekend I had set aside. I spent days in a hotel with poor network access, sleeping whenever I got the chance, visiting my dad until he died and then planning a funeral immediately afterwards.

It goes without saying that I missed the deadline to apply for any Olympic tickets.

I was worried. As a wheelchair user, I didn’t think there would be any tickets I could use appearing on ticket exchanges. And all the packages (i.e. hotel plus ticket) would be for those who could use a normal seat. This excluded me.

At this point I wrote to Seb Coe. I explained my excitement about the Olympics being on my doorstep, and my sadness at not having been able to apply for tickets due to my dad’s death – and also my concern that wheelchair user tickets would not be available later on at ticket exchanges. I said I was willing to buy tickets for anything, so long as it was at the Olympic Park in Stratford – I just wanted to be there! To his credit, Lord Coe did reply – but it took him several weeks. The response when it arrived was brief and merely suggested that I go out onto the streets to watch the marathon. Not only was this missing the point (the fact that I live near Stratford) but it was inappropriate – it is difficult to get a wheelchair through crowds and the chances of getting near enough to see the runners, from my low vantage point, would be incredibly slim. Thanks for nothing, Lord Coe!

This really felt unfair. My home is in a zone which will have permit-only parking imposed upon it for the duration of the games. For eleven weeks, we will have restrictions on parking from 8am until 9pm, and it will be difficult if we need to arrange for visits, be it from friends or tradesmen. There will be other issues – not least traffic jams and crowded public transport – and it began to feel to me as if I would have to deal with problems caused by the Olympics, without being able to appreciate the Games in any way.

I was then frustrated as second and third waves of ticket sales were limited to those who had previously applied but been unsuccessful. These were closed to me, as I hadn’t made an initial ticket application. I watched as others excitedly tweeted about their ticket buying success. I saw my dream of attending the Olympics slipping away.

I looked into ticket sales held in other EU countries, but none of these had wheelchair user tickets available, only normal seats. Again, I was excluded. I began to despair.

Today, at last, tickets were on sale to the public. This was my chance! I was frustrated to see that wheelchair users could only purchase through the phonelines – yet we had to call the same phone number as everyone else. Due to disability I usually sleep through the morning, so I set an alarm in order to wake just before phonelines opened. I tried to get through and was told “we are experiencing high call volumes… this call will disconnect shortly”. Why on earth were wheelchair users, who could only buy by phone, forced to compete with the world and its donkey on the main telephone line? The recorded message suggested that you try to buy online instead, a kick in the teeth when I was excluded from doing so!

After an hour manning my phone, I finally managed to get through, following an hour of redial at a cost of goodness-knows-what! Eventually I reached an assistant. I had done my research and knew that the only sports at the Olympic Park which had any ticket availability would be diving, handball, the early basketball heats, and hockey. To my relief, the telephonist told me that there was good availability for wheelchair users across all four events. Wow! I was spoilt for choice – glossing over the fact that my original preferences, for athletics and cycling, were long gone.

I was initially reluctant to consider diving – I enjoy it on TV, but I have a phobia of open water. However, photos of the venue persuaded me that the spectators wouldn’t be too close! I have never been keen on hockey, and only the earliest basketball heats would be at Stratford – and I really wanted to see a medal ceremony. I got thinking. Maybe I could learn to love handball…?

To my delight I was able to buy tickets for the men’s diving (10m platform final). I should be able to see Tom Daley dive for England! Only the more expensive ticket options remained, but surely that was worth paying for a once in a lifetime event? Having secured this, I also bought cheaper tickets for handball earlier in the same day – the bronze medal match. Time to learn about a new sport!

Next, the telephonist asked me if there was anything else I would like. I thought quickly – after all, this was probably my only chance to buy tickets and I didn’t want to let it slip through my fingers. I had previously managed to get a general pass for the Paralympics on one day (providing access to five sports, space permitting) so I had a quick search to see what else would be held on the same day, and found that the evening athletics session had finals in lots of disciplines, and lots of medal ceremonies. Amazingly I could snap up a ticket for that athletics session for just £30!

So at last I have my Olympic and Paralympic tickets. I feel like I deserve a medal just for jumping the hurdles that LOCOG put in front of me to get them! And of course my wallet is much lighter. But does any of that matter? I’m going to the 2012 Olympics, ready to support my country and to enjoy a wonderful spectacle near my home. What a fantastic thing to look forward to.

This week “The Undateables” hit our screens: a channel 4 documentary about 9 disabled people who are looking for love. The trouble is, the show starts off with a bad name and doesn’t get much better from there on…

Before the series had started, I was reading about people who had been affected by the billboard posters (which show 6 obviously disabled people, next to the term “Undateables”). Twitter was ablaze with comments such as “My wheelchair using daughter was called Undateable, thank you Channel 4”. No matter how sympathetic the show turned out to be, the billboards were a problem. Many more people will see the posters than will bother to watch the show, and the only message they will take away is that disabled people are “undateable”. Isn’t that charming? Channel 4 is clearly trying to draw people in to watch the programme, but I feel this sensationalist tactic has backfired.


Undateables billboard poster: original ownership of photo unknown

The show follows 9 disabled people (3 per episode) who have a variety of impairments, and who are looking for a romantic partner. The first programme dealt with Richard, who has Aspergers; Luke, who is one of the 10% of people with Tourettes who actually exclaim profanities; and Penny, a wheelchair user with “brittle bones”.

I followed the show while reading my favourite TV-centric messageboard. I usually read that forum for watchalong threads during the Apprentice or other reality TV programmes, when I find the comments fun and fair, in a community where I feel I belong. I had no such luck with The Undateables – and although the comments I saw were just made in ignorance, they made me want to cry. All my fears were founded – particularly as it became apparent that many people were watching the programme as some kind of freak show. Disabled people as the stars of car-crash TV.

Comments were unknowingly cruel. When we were initially introduced to Luke and Richard, respondents said that we were being broken in gently by not being shown anyone who looks different. Yet when a wheelchair user did appear, comments alluding to how she would only get a “fantasy f***” were made. When Richard was shown driving his car, viewers were surprised that “they give driving licences to people with mental problems” – er, actually it’s not a “mental problem” – the term is “neurodiverse”… oh what the hell, I’m fighting a losing battle trying to promote awareness in this case. At best, the comments about the disabled participants’ new relationships were things like “I think it’s sweet”. We are not children, you know. We do not exist for you to pat us on the head.

One comment which made me cringe suggested that disabled people shouldn’t be too picky in who they date; that we can’t afford to pick and choose, so we shouldn’t turn people down. When one “undateable” decided not to meet their date again, this was criticised. Why? There are words for those who force a sexual relationship on those who don’t want one. Disabled people have just as much right to say no as anyone else. We have a right to choose who we date, and if someone doesn’t float our boat, we shouldn’t go along with it! I’m sure that in time, the new daters will learn whether they are setting their sights too high, but that’s another issue. Doesn’t everyone want to score above their weight?

To be honest, I think the programme suffered from the sensationalism which it had allowed to creep into the promotional posters. For example, why was Richard accepted for a dating show? He clearly doesn’t get out enough to learn social skills, which is why his first date ended when he started helping himself to his partner’s food. There was no chance he would succeed.

I believe that in general, disabled people – like any other singletons – should make the effort to join social clubs and groups. If you don’t go to work, this is even more important. Eventually, as you get to expand your social circle, hopefully you’ll encounter someone that you fall for. Someone who will accept you for who you are – disabled or not. And if this doesn’t work out, then after a few years of exhausting all the social avenues open to you, by all means try dating agencies as an extra route to find somebody special.

But it was cruel to put Richard in the position of a blind date, when he clearly had no idea how to behave in polite company. He liberally sprayed his clothed body in deodorant. He stole food from his date’s plate. He flexed his muscles at length – something which he clearly thought was clever, when it was just gross! In short, he was set up to fail. Really, Richard should have been joining social clubs and learning how to interact with other people before even considering meeting one-on-one. And maybe after spending months socialising, he might find a girl who he liked – or at least be better equipped to deal with a romantic experience. Throwing him in at the deep end with a date was not fair to either party. To that extent, the programme made me cross.

Luke was at the other end of the spectrum. A charming, good looking chap, all that was “wrong” with him was his coprolalia – obscene Tourettes tics – calling out “dirty slut!” for example. But Luke proved himself to be friendly, quick witted and appealing. I’ve canvassed my friends and none of them would be put off by his tics – so in many ways he had it easy compared to the other “undateables”. Luke was soon paired up with someone he liked, and to be honest he didn’t seem to need any special help when dating. He was just a normal person who happened to slip up now and then. Don’t we all?

Finally we met Penny. She is a wheelchair user, 3 feet tall, with osteogenesis imperfecta, who was hoping to meet a 6 foot tall policeman. She was shown with her friends, so she obviously doesn’t need help to get out more or to learn how to behave. But Penny was picky – making a decision about her date as soon as she saw him (she didn’t like the fact that he was a wheelchair user, ironically enough) and so she was determined to have a bad time no matter how hard her date tried to engage her. I felt rather sorry for him. She didn’t seem like a very good advert for disabled people – she was close minded and determined that things would be a failure whatever happened. I know people like that, who are attractive and outgoing but they tell me that they won’t fall in love because they are so dislikeable. And that’s the key to it all – disability or not, if you are sure you will not find a soulmate, then it becomes a self-fulfilling prophesy! Given how quickly Penny formed her opinion, I felt that speed dating might be better for her.

In future shows of the Undateables we will meet people with facial deformities through to a man with Down’s Syndrome. I hope they have better luck in love. But more to the point, I hope that they will be able to show that disabled people are just ordinary people with a slight difference here or there – and that we are not “undateable” at all. Based on the first episode, I don’t hold out much hope.

Incidentally, I hear that unsuccessful applicants for the show were invited to be “dates” for the people featured. So expect some more disabled pairings – and if the programme makers are resorting to that, it seems that they have missed the point of disabled people wanting to reach out and find dates that they wouldn’t normally meet. It also sounds like Penny was never going to be paired with a policeman!

If you are disabled and would like to make friends or find dates among the disabled community, I recommend you try joining The Outsiders – don’t apply to become part of a televised freak show.

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.