Why Are You Questioning My Need for a Wheelchair?

[davidgillon]

Really good Huff Post piece on how normies make it difficult for wheelchair users with invisible disabilities. Rings absolutely true.

(And another Bendy speaking out, pro rata we must be one of the most published disability sub-groups!)

Comments

[dubhain]

By and large, I agree with that article. (Disclaimer: I don't use a chair at present — I walk with a cane. However I've recently spoken with my doctor, and I may be having to get one soon.)

However, as someone who's had the plate equivalent of a blue tag before (and may be getting one again, as well,) I'll note that the blue tags are frequently abused. E.g. I used to live in a college town, and had a hell of a time finding handicapped parking spots. The students were fond of using grandma's tag to grab a convenient and free parking spot at the U. I can't count the number of times I saw a car whip into a blue spot, and a student or two leap out of it and run at full tilt across campus. (Yes, I reported it, every time.) So, under some circumstances, it may be appropriate to kick-up a fuss about it.

That said, back when I had the plate, I also got snarked at. I was a fairly-well-built twenty-something male, who walked with a cane. I got the sarcastic comments about people like me getting all the best parking, and harangued by senior citizens that "those spots" were only for people their age. I also got yelled at, because there wasn't a hang-tag on the rearview mirror of my sport little black coupe. (Apparently, the plate in the back didn't count, by their standards.) I even got threats from the old folks that they were going to call the police and have me jailed, for parking in their spots, because I was too young to park in them.

So...yeah. I can sympathize with the author of that post. I agree with her, on most of her points. That said, the hang-tags (and the plates) can be and frequently are abused. The proper course of action, of course, is not to harrangue the person in question. Rather, it's to report the suspected abuse to the cops, and let them handle it. 'Nuff said.

[davidgillon]

I can't count the number of times I saw a car whip into a blue spot, and a student or two leap out of it and run at full tilt across campus. (Yes, I reported it, every time.) So, under some circumstances, it may be appropriate to kick-up a fuss about it.

But what about the people, like me, who start out moving fine and then deteriorate rapidly? I often don't need my crutches when I get out of the car, if I'm going any distance I inevitably do by the time I get back. But if I'm only going 20m? If I need both hands to carry something? The whole point of invisible disability is you can't see it, you aren't qualified to judge, and it's none of your business in the first place.

I know people with an invisible disability who now won't use their blue badges because of the aggression they have faced from people who don't believe it is appropriate for them to have one. Setting the police on them is no better, it's just intimidation one step removed (EU blue badges are specific to owner not vehicle, the only way to verify one is to physically look at both sides of it).

And, above all in my opinion, this reinforces the public's misconception that the idea of 'genuine disability' and therefore 'non-genuine disability' is a valid one. It sets the scene for hate crime directed at those of us who don't meet the expectations of militant normies - been there, done that, done the media interviews, still had an MP claim people had a right to judge us.

[dubhain]

I'm one of those people, like you. Generally speaking, unless I'm having a bad day of it, I start out fine, and deteriorate from there. I've experienced the aggression you describe, first-hand, and often, both for my mobility issues and other 'invisible' illnesses. And it becomes my business, frankly, when there are no more of handicapped parking spaces available, and I'm fairly certain that one or more of them are being used by people abusing the permit system. It becomes very much my business, when I have to go through a great deal of additional pain, or not be able to keep a doctors' appointment or do some other critical task because I can't walk an extra block or more from where I have to park because there are no spaces left.

Does this give me justification for haranguing other drivers parking there, or demanding to verify their placards or plates? No. However, if I've a reasonable idea that someone's abusing the system (such as sprinting cross-campus as I describe above -- not simply walking twenty or even a hundred meters,) then I do believe I've a right to question to myself, and to ask Parking Enforcement to verify. Else, nothing happens, ever, to check the abuse of the system. And believe me — I don't know about the E.U, perhaps people are more respectful of the system, there, but such abuse of it certainly does happen in the U.S. I've had that go-round with family members and acquaintances who believe that it's perfectly acceptable to do so because "Everybody does it."

As to intimidation once removed: If one has a permit for a special entitlement, no matter how much deserved, it's only reasonable to expect that one's going to be asked to verify that they and the entitlement-holder are one and the same. That goes for a driving license, a voter registration, or a workplace access. Otherwise, the entitlement itself — in this case, the placard or plate — being specific to its owner is meaningless, and one may as well simply say that anyone who's 'lucky' enough to obtain one (by legitimate means, by loan, gift, or theft,) is entitled to use it.

Yes, people with disabilities are going to be stared at, and asked stupid questions by the public. Yes, we're going to have to verify the entitlements (if any) which we receive, which do not at all make-up for the difficulty and pain we experience trying to negotiate a world laid-out for people who are not disabled. In a perfect world, this wouldn't happen, and there'd be no abuse of the parking system or any other system instituted to help people like us get around a little more easily.

We do not live in a perfect world.

And I respectfully disagree with your above-all opinion. The public is going to hold their misconceptions, regardless of what we do. The public knows quite well that there are people who abuse every single system ever invented, and that goes double for assistive systems. The public will be far more reassured that as few people as possible are abusing those systems if they've reason to believe that said systems are restricted and that those restrictions are enforced. If not, the public is far more likely to believe that 'everyone else' is getting to abuse the system, and the only reason they don't get to do so is that they can't get their hands upon someone else's placard.

I'm all for educating the public about 'invisible' disabilities. (Hell, I have more than one, so it'll only benefit me in the long run.) I'm all for educating them that it is emphatically not appropriate to harangue and attempt to intimidate an individual they see getting out of a car with a blue placard, simply because they don't walk with an assistive device or use a wheelchair. However, there does have to be a way to enforce the restrictions which naturally must exist regarding who may and may not use a handicapped parking placard or plate. Insisting that such enforcement should never happen, because it somehow will lead to hate crimes and make an individual feel judged is something which I (again respectfully) simply cannot agree with.

[davidgillon]

if I've a reasonable idea that someone's abusing the system (such as sprinting cross-campus as I describe above -- not simply walking twenty or even a hundred meters

While it isn't so much the case nowadays, up until a few years ago I could walk miles, and yes, probably I could have sprinted if need be, yet at any moment in there I could change from walking normally to barely being able to stand or put one foot in front of the other, and that change could happen between one step and the next. At that moment I just had to hope the car was as close as possible, because every step back to it would be agonising. And that's just one invisible disability of literally thousands of different syndromes and problems. Just because someone is tearing across campus doesn't mean they don't have an entitlement to a blue badge due to disability.

I do believe I've a right to question to myself, and to ask Parking Enforcement to verify.

Imagine you're the person whose disability is being questioned, imagine having to deal with questions caused by people who think they are fighting for the rights of disabled people, but who do it by assuming that your disability isn't valid and doesn't count. Imagine it happening every damn day. I've already mentioned I know people who have been intimidated out of using their badges by ongoing harassment from people who don't believe that they are disabled. Isn't even one person intimidated out of using their badge one person too many?

it's only reasonable to expect that one's going to be asked to verify that they and the entitlement-holder are one and the same

There is indeed an expectation that things such as these can be checked, but the right to demand that check is restricted to specific people (in the UK police and traffic wardens), not Joe Public, however well intentioned they may think they are.

I don't know about the E.U, perhaps people are more respectful of the system

Not remotely. But it's also very apparent that a very large part of the reported fraud is actually not fraud at all and arises from people who refuse to recognise invisible disability, or indeedd any disability that doesn't include paralysis and/or missing limbs, and therefore consider legitimate use to actually be abuse. And this is a huge problem in that it leads them to extend the same attitude towards disabled people in other areas of life. As I mentioned, I had one of our local MPs (Mark Reckless for those in the UK, UKIP's newest recruit - he'll fit right in) respond to an interview with me on my experience of disability hate crime by saying people were entitled to decide for themselves whether they thought disability was genuine and to be angry with us if they decided we were fakes. So forget medical training and checking your medical history, all Joe Public needs to do to decide that you're a fraud and a scrounger is catch a glimpse of you across a crowded street (well, it works for Atos!). And this isn't a theoretical risk, I'm well into double figures with instances of abuse on the street from complete strangers for walking while disabled (and that's with crutches), plus one physical assault (the idiot thought disabled=not dangerous - don't attack the man holding two clubs....) and one attempt to frame me for benefit fraud.

The last of those, even though quickly resolved - the investigator dismissed it before she was even through my front door, triggered the worst flare-up I have ever experienced. Three months after it was resolved I was still in agony, so any suggestion that 'if you're innocent you have nothing to fear' is simply flying in the face of the evidence.

David Perry wrote a couple of really good blogs on the issues faced by people with invisible disabilities. This one on the Kanye West idiocy http://edition.cnn.com/2014/09/16/opinion/perry-kanye-west-prove-disabilities/index.html, and a follow-up in response to his readers, with two revealing letters, http://www.thismess.net/2014/09/hidden-disabilities.html , the contrast between the two is utterly stark, and explains why we should never challenge anyone whose disability isn't apparent.

[jesse_the_k]

Indeed, I adore this sentence:

There are many reasons why a person uses a wheelchair, but the biggest thing to remember is this: if you do not know the person then why they use a wheelchair is none of your business.

Hmm, there do seem to be many excellent EDS-affected writers. Has something changed in the diagnostic weather so that we're hearing more about it?

[davidgillon]

why they use a wheelchair is none of your business.

Yeah, love it!

I think EDS is generally becoming better known, and there are a bunch of us who happened to coalesce on the BBC Ouch Forums a few years ago, which was an excellent training ground from which several of us have gone on to write in various locations - often with a bit of mutual encouragement, I was dragged into my own writing for Where's the Benefit that way. But there are a whole bunch of other writers such as the author of this piece who've emerged from the woodwork without contact with the rest of us (though it's always possible there's the encouragement effect of 'well, if they can do it').