Wheelchair “miracles”

I finally gave in and bought a wheelchair last year, when a local store had them on special.

It’s not something I need every day, thankfully. Not even most days. In fact, I’m pretty sure my Mum has borrowed it and used it for my grandmother more times than Mr Happy has used it for me! But thanks to my Dysautonomia and Ehlers-Danlos Syndrome, I suffer from debilitating fatigue, I’m unable to stand for long periods / walk long distances, and I have a propensity for dislocating body parts. So Mr Happy kept prompting that it would be handy for us own one, and after missing out on several events where I could have gone if we’d had one, I gave in.

That’s why things like this BuzzFeed post hit me really hard.
Because I know, that could have been me. 

That could be me at a sporting event, standing up momentarily to show my enthusiasm and excitement.

But how does that moment of standing prove that I didn’t need the wheelchair?

Do those few seconds in a vertical position mean that I could have managed the long walk from the carpark to the stadium? That I could have easily stood in line for an hour, in the heat, waiting to be seated? That I could have handled climbing all the stairs to my seat?
Of course not. 

So how is it a “miracle” if someone stands from a wheelchair?

There’s a common misconception that everyone that uses a wheelchair is paralysed, and therefore should be unable to stand or walk at all.

Why does that misconception matter?

Because a lot of people who use wheelchairs AREN’T paralysed. ¹
And every time they behave in a non-paralysed way (e.g. standing up, walking a few steps), people get offended that they are using a wheelchair. 

“Why are you using that thing? If you can walk, why do you need a wheelchair?”  they demand, annoyed at the apparent ‘deceit’. They speak as though the wheelchair user has scammed them, tricked them into thinking they were disabled, when in fact, they’re just lazy or looking for sympathy.

But please, allow me to let you in on a secret.
Seriously, lean closer.
It’s pretty shocking.

Nobody WANTS to be in a wheelchair.
Needing one is annoying and humiliating. But there are a giant list of injuries, illnesses and disabilities that they can assist with. So if you see someone using one, and you realise they’re not paralysed, don’t assume they’re using it for fun.

“Are they able to stand / walk?” is not the bar that determines wheelchair use. If that was the correct question, then yes, someone who stood or walked would be a “faker” for using a wheelchair. But the correct indicator of whether someone needs a wheelchair is actually “are they able to stand / walk WITH AN ACCEPTABLE COST?”. If the cost of standing is severe presyncope or fainting, that’s an unacceptable cost. If the cost of walking is severe fatigue, or severe pain, or brain fog so bad they can’t remember what they were actually shopping for – that’s an unacceptable cost.

And if using a wheelchair lessens those unacceptable costs, then they’re not a “faker” for using one. That would be like calling an able-bodied person a “faker” because they use a car to drive the 10km to work. Technically, if they’re able-bodied, they could walk the 10km to work. But the cost (time, fatigue, pain) is likely unacceptable to them. Using a car lessens that cost. Same with wheelchair use.

I was amazed the first time I went clothes shopping using my wheelchair. Usually, an outing like that would wipe me out within an hour: I’d be pale, shaking, exhausted, in an incredible amount of pain, my heart rate would be through the roof, and I’d be in danger of passing out and injuring myself. I’d have to be taken home, and would be bedridden for at least the rest of the day, if not several days while I recovered. But the first time I went shopping in my wheelchair…I was able to stay out all day.  ALL! DAY!  I finished the day tired, but totally fine. I was able to buy the things I needed, and enjoy time with my sister. The difference was like night and day. For me, a wheelchair is a vital medical aid, not something I’m in for fun.

But, even if I WAS, for some strange reason, using a wheelchair just for fun – why is that any of your business? Are you the wheelchair police? Why should I have to share with you, a complete stranger, my personal medical details, to allow you to decide whether I’m justified in using a wheelchair (or a walking stick, or any other visible medical aid)?

I said at the start that I haven’t used the wheelchair much since we got it. The main reason is because, when I’m sick enough to need the wheelchair, I’m also usually too sick to deal with all the staring and questions from people.

Yes, I’m young to be in a wheelchair.
No, I haven’t ‘done’ anything to myself.
Yes, I have multiple chronic illnesses.
No, it’s not ‘nice’ to have someone push me around (I’d much rather be healthy & walk).

And on… and on…

I know that a lot of people with chronic illnesses don’t use medical aids like walking sticks and wheelchairs in public, because they’re so often interrogated, or even verbally abused for using them. And that makes me sad. If someone spends their days struggling with chronic illness, and they find something that helps them, why should they have to hide it? Because society ‘can’t deal’ with things that don’t fit into their narrow view of disability, many people just miss out, rather than put up with the abuse.

So I’m mad at BuzzFeed. Here was an opportunity for them to correct the misconception that impacts so many people with chronic illness. Here was a chance for them to educate people, and make life easier for those who need medical aids in public.

Instead, they joined in the mocking.

And when Michelle over at Living with Bob called them out on it in this post, I agreed with every word. Here’s an excerpt:

“This is not about a lack of sense of humour, as is often the accusation made when people like myself question such ‘jokes’. Many of us in the chronic illness and disability community have well developed senses of humour. It is what helps make our lives bearable. We find the funny in the most unfunny of experiences. But we are using our own experiences, we mock ourselves not other people. We tread the hard path, the pain, the fear, the tears and the doubt, and we have the right to use our experiences. Others do not.”

Thankfully, when people pointed this out to BuzzFeed in numerous written complaints, BuzzFeed apologised, removed the offensive post, and featured something to correct the misconception they had just perpetuated.

Wait… no.
Sorry, I was dreaming for a moment.

When people complained to BuzzFeed about their insulting post, BuzzFeed pasted several complaints from the disability community into the piece, under the subheading, Disability advocates are offended by coverage of this moment as a “miracle”, and changed the title of the post to Disability Advocates Aren’t Happy That A Man Standing Up From His Wheelchair At The Australian Open Was Called A “Miracle”.

Basically they changed an already insulting post to also make the disability community sound like a bunch of whingers. But that seemed to be their idea of “fixing” the post, because they then added a lovely tag to the end of the piece: “This story has been updated to include comment from disability advocates and to reflect BuzzFeed’s editorial standards for reporting on disability.”

Well, BuzzFeed, thanks for the link!
I read those editorial standards. Obviously you haven’t, because the post you’ve published certainly does not reflect them.

Here’s the “Guidelines for Reporting and Writing about People with Disabilities” you reference. Their dot points include:
* Avoid sensationalizing and negative labeling.
* Emphasize abilities, not limitations.
* Maintain the integrity of each individual.

And the National Center on Disability and Journalism’s style guide that you mentioned?
Here’s their section on people who use wheelchairs, or are wheelchair-bound/confined to a wheelchair.

Background: People who use mobility equipment such as a wheelchair, scooter or cane consider their equipment part of their personal space, according to the United Spinal Association. People who use wheelchairs have widely different disabilities and varying abilities.

NCDJ Recommendation: It is acceptable to describe a person as “someone who uses a wheelchair,” followed by an explanation of why the equipment is required. Avoid “confined to a wheelchair” or “wheelchair-bound” as these terms describe a person only in relationship to a piece of equipment. The terms also are misleading, as wheelchairs can liberate people, allowing them to move about, and they are inaccurate, as people who use wheelchairs are not permanently confined in them, but transfer to sleep, sit in chairs, drive cars, etc.

So, BuzzFeed.
I see you have a cute bar graph at the bottom of your piece, asking for ‘my reaction’ to your post.

Since ‘epic fail’ isn’t an available option, I guess I’ll just have to go with the regular kind.
I think post is a fail on your part, BuzzFeed.

In the words of Gordon Ramsay…

Please use your influence to help the disabled community, instead of mocking us.
We’ve got enough to deal with as it is.

xx S.

If you’d like to read some other bloggers’ posts on this issue, you can click here to read Michelle’s full post about the BuzzFeed piece, or here to read another of her Living with Bob posts about this issue. Or you can click here to read what Sam over at Gimpled has to say.

What do you think of BuzzFeed’s post?
Do you use a wheelchair, walking stick, or other visible medical aid?

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Footnotes:
¹ Kaye, H. S., Kang, T. and LaPlante, M.P. (2000). Mobility Device Use in the United States. Disability Statistics Report, (14). Washington, D.C.: U.S. Department of Education, National Institute on Disability and Rehabilitation Research.

Researchers interviewed 1,599 wheelchair users in America. All were non-institutionalised (i.e. not in a nursing home, prison, or a residential facility for mental or physical disabilities). They were just the regular people that you might bump into on the street.