Opinion piece: "Am I disabled?" by Joanne Limburg

[Andy]

I liked this. Written from the perspective of someone with a diagnosis of autistic spectrum disorder (ASD) but widely applicable to most, if not all, chronic illnesses. ME is mentioned once.

Do you consider yourself to be a disabled person?Yes: ☐ No: ☐ Prefer not to say: ☐

Yes. Because forms like this – and questions like this – always throw me into confusion, and sometimes into complete mind-stoppage. You appear to be asking a closed question, but ‘consider’ is a word I would use to open up a question. Forms are full of such questions, presenting themselves as straightforward logic gates, which on closer inspection turn out to be impossibly multivalent. Rather like everyday speech. You haven’t been specific enough, so I’ll just have to throw everything at you – at least then some of it will be what you’re looking for.

You can be verbally abused for using a disabled parking space when you don’t use a stick or wheelchair, and confronted if you’re using a wheelchair simply to conserve limited energy, and then have the nerve to quit it for a brief moment. It was not paranoia, but a fear of being publicly shamed that caused a friend of mine with myalgic encephalomyelitis (ME) to remain in her airport wheelchair, even when the mutual friend who’d offered to push her nearly forgot her and left her behind at passport control. That same reasonable fear of being shamed makes me hesitate when I have to fill in a form.

https://aeon.co/essays/what-does-it-mean-to-consider-yourself-a-disabled-person

 

[Kitty]

Really interesting, thank you. I've often wondered which box I'd tick if I was only being asked about my autism (I still haven't decided).

 

[Invisible Woman]

Sometimes it seems your damned if you tick "yes" & damned if you tick "no".

Perhaps my view is slightly jaundiced by having ME but I do have family members, some no longer with us, who had fairly significant disabilities.

"Yes" & it seems to me that you are perceived to be focussing on the negative and all that stands between you and the life you want to live.

"No" & the perception is that you don't need support at all, so what's your problem.

When for many people with the right support - saying yes & getting appropriate help - could significantly reduce the impact of the disability. For some people that's even to the extent of achieving just as much as a person without a disability.

The irony is I know able bodied individuals who don't achieve anything remotely near their full potential because they aren't that motivated or prioritise other things - holidays, social life, hobbies. They aren't judged for that.

The disabled individual is supposed to put in maximum effort while being judged all the while.

Why does it appear to be socially acceptable to judge disabled people who seek support to maximise their potential but not judge individuals whose own choices or lack of motivation prevent them from achieving theirs?

 

[TiredSam]

The last time I went to the UK was via ferry, I was worried about getting out of my car and having to go up all those stairs they have on ferries. Stairs are an absolute bugger and I avoid them whenever possible, and the last thing I wanted was a boatload of people behind me getting more and more impatient about how incredibly slow I was.

On the booking form it said I could tick the disabled box if I needed a parking space next to the lift. I (wrongly) assumed it was probably a special lift just for disabled people. So I ticked it.

On the European side (Belgium or Holland, can't remember) I was greeted with a smile, given a special thing to hang on my mirror, and told to go to the front of the queue with my hazard lights flashing. There I was waved through by smiling staff, all the way to the best parking spot on the boat, where a happy fellow cheerfully guided me into the space. I was rather embarrassed to find that the lift was next to the stairs, and anybody could use both. So I got out of my car and used the lift. No funny looks, no unpleasantness, nothing.

On the way back from Hull, the woman in the booth looked at my booking, must have seen the disabled / lift bit, and peered into my car, obviously looking for the disabled person, but there was just me. She gave me a suspicious, malevolent look. She didn't mention parking or lifts, neither did I. I got in the queue as normal, parked away from the lift, and walked to it from where I had parked hoping not to draw attention to myself.

 

[Kitty]

On the European side (Belgium or Holland, can't remember) I was greeted with a smile, given a special thing to hang on my mirror, and told to go to the front of the queue with my hazard lights flashing. There I was waved through by smiling staff, all the way to the best parking spot on the boat, where a happy fellow cheerfully guided me into the space.

I've only ever used a ferry once, due to a tendency to suffer from sea sickness even only dry land.

It was the Oban to Mull boat. I'd been dreading it, visualising something about the size of a fishing trawler, but the vessel that pulled into the harbour was the size of a modest multi-storey car park. Embarking worked exactly as @TiredSam describes it, really well-planned, fantastic staff, and we were even given a third off the price of our ticket. And the boat was so big that I'd never have known I was even on water, let alone suffer any sea sickness – it was great.

Until we got to Mull. The lift button was switched off during the crossing, but even after the boat had stopped, it didn't come back on again. So my friend and I found the nearest bench, and sat chatting excitedly about our wildlife trip whilst we waited for some kind of signal. It came, ages later, in the form of a Tannoy announcement, asking the driver with my registration number to please return to their car. We got back to find that we'd not only prevented the exit of most of the vehicles on the ferry, but delayed the return sailing!

It wasn't really our fault – I couldn't stand up to wait for the lift button to come back on, and even when it did, the light was so feeble you had to look closely to see it. And to their credit, the staff were lovely. Can't say the same for the coach driver with the Bristol accent, but I suppose I was asking for it!

 

[Invisible Woman]

I've only ever used a ferry once, due to a tendency to suffer from sea sickness even only dry land.

IM persuaded me onto the ferry crossing the Irish Sea, in winter from.Pembroke to Rosslare. I get sea sick in the bath. He reassured me that a) we would simply book a cabin on board and b) he'd checked the weather forecast and there were only going to be 5mph winds - practically a millpond!

We got on board and a) all the cabins were prebooked and b) I discovered he can't read a weather forecast for toffee, instead of 5 mph winds it was a force 5 gale.

Finally we found a quiet spot and I sat and watched as the boat seemed to pitch 90° to the left, lurch and then pitch through 180° to the other side, while the curtains apparently remained hanging vertically.

I focussed on my breathing.

Then the entertainment struck up. Some pillock with a guitar who decided to serenade me with Lady in Red. I had made a very unwise decision and put on a red jumper that morning. Given my face had probably turned green, I suspect i strongly resembled a Christmas elf.

Honestly, I didn't know whether to assault him with his own guitar or throw up on him.....

I am so grateful I didn't have ME at the time because I could barely stand, let alone walk.

 

[chrisb]

Are you entirely sure that it is the ability to read a weather forecast that is in question?

 

[Invisible Woman]

Are you entirely sure that it is the ability to read a weather forecast that is in question?

No.

He's a hard nut to crack though, no matter how sneaky the approach he seems to slither easily out of any traps laid.

Annoying.