Invisible Illness Bingo.

I’ve posted before on my experience with invisible disability, and linked to amandaw on the “But you don’t look sick!” phenomenon. And for further background, everyone should read the “Open Letter to Those Without CFS/Fibro” at Not Done Living.

Now Annaham at Hamblog has come out with the Invisible Illness Bingo card, v. 1.0. “But you don’t look sick!” features, as does “Lucky! You get to stay in bed all day!” and “But I went through hard times too, and I managed just fine. Let’s talk about what a great person I am.”

Anyone who has experienced chronic illness is likely to recognise a few of these. (Perhaps you’d like to punch a wall or two.) If you haven’t had the pleasure of a debilitating but invisible illness, you might still recognise a few of these as having flitted through your head (or even emerged from your mouth) in the past when confronted with the frustrating reality of chronic illness in others. Perhaps when they’re all down on a card like this, we can all recognise these comments for what they are, and for what they do to people on the sharp end.

Filed under: disability, health, peeves

You’re not worth it.

As Tigtog discussed while I had this post desultorily in draft (it’s school holidays here!), the Daily Telegraph has posted a followup on CityRail’s complete lack of any workable emergency evacuation plans for people who can’t walk: CityRail plan to abandon disabled.

The comments section is worth a look. “paul of sydney” starts assigning value to people’s lives, and guess who’s not worth anything?

OK Morris, so its unacceptable for a fellow to be stuck on a train for a few hours while they get a forklift onto the Sydney Harbour Bridge to lift him off. So lets spend $100 million or so of taxpayers money to retrofit each and every CityRail train for something that might not happen again for another 20 years.

Get this, “paul” – the trains shouldn’t be retrofitted, because they should have been built with facilities for disabled people IN THE BLOODY FIRST PLACE. Accessibility shouldn’t be an afterthought. And you, or any reader here, could next week be the person in the wheelchair who gets to sit in a train carriage alone while you burn to death, or inhale toxins, or just starve or dehydrate, forgotten, over hours or days without a means of communication.

Bob Hodge touches on this situation in “The Complexity Revolution”:

“My new friends at NSW Rail would be very unhappy with this story. It would not help much to tell them that this is a standard ‘human interest’ article, nor that it is more complex than it looks. For instance, MacCauley is not typical of standard passengers who usually concern complexity-2 planners of rail networks. He is another butterfly, whose specific needs would be hard to predict or cater for.”

“Hard to predict”? No, no, no, no, no. It’s not a complex, unpredictable trivial detail that people who use wheelchairs also use public transport. It’s not a bizarre, unforeseeable event that sometimes systems will fail and you’ll need to use your backup system. Disabled people aren’t going to go away just because you want to pretend they don’t exist. Sheesh, this isn’t even Public Facilities 101, it’s junior school level.

Can anyone with a knowledge of disability law offer their perspective? Surely “Oh, um, I guess we could say that we, er, just wait for ambulances, then stretcher them out or something, yes, that sounds ok!” can’t be a legal emergency plan?

Filed under: disability, obstreperation, sheer incompetence

Disabled in a disaster? Just wait until we’ve helped all the real people, all right?

Lauredhel had a post a few days ago noting the plight of a quadriplegic man abandoned while the ablebodied passengers were evacuated during the train breakdown on the Sydney Harbour Bridge recently and told he would be evacuated “in two or three days”. (Luckily nearby construction workers showed some initiative and rescued him using a forklift.)

Apparently this was not just a regrettable lapse or someone’s wires getting crossed about emergency procedure, it’s standard operating procedure for CityRail: CityRail’s new generation of passenger carriages have been designed with no facility for evacuating wheelchairs at all.

A CityRail spokeswoman confirmed last night wheelchair passengers would not be able to access the evacuation ramps and must wait for a stretcher in an emergency on the new public-private partnership-funded trains.

The Paraplegic and Quadriplegic Association of NSW and Spinal Cord Injuries Australia fear the system will place wheelchair passengers at greater risk than able-bodied passengers.

They are worried that disabled travellers would be forgotten in a terrorist incident like the July bombings of the London Underground.

ParaQuad spokeswoman Deborah Schofield said evacuating wheelchair passengers from the side of the train posed a problem inside tunnels.

Filed under: disability, economics, health, sheer incompetence, technology

What do disabled people, fat people, and indigenous languages have in common? They’re not disposable.

Read ‘Ems for today:

Sunday Telegraph: Quadriplegic left on train

Mark McCauley, a man with quadriplegia, was abandoned on a New South Wales CityRail train for four hours when the train lost power. The ambulatory passengers were all evacuated one hour into the debacle. Luckily, he had his mobile phone on him. His first call, to CityRail, wasn’t so helpful:

“I rang CityRail and told the lady I was stuck . . . and at the end of the conversation she said ‘That’s fine sir, somebody will get back to you in two or three days’.

His second call was to 000. They just rang CityRail and had a manager call him back. McCauley reports:

“She said we can’t get you off the train until we restore power – it could be in the early hours of the morning.”

Mr McCauley was in need of medication by then. Luckily, construction workers volunteered to remove him from the train with a forklift.

CityRail’s apology? Two one-day free rail passes.

~~

Filed under: Read 'ems, disability, fat-hating, history, indigenous, moral panics

Rearranging accessibility: more on invisible disability accommodations

I wrote a post a while ago titled Stop and think: invisible access for invisible disabilities. It was a personal narrative of some of my experience with chronic fatigue syndrome. In it I mentioned a couple of accessibility problems that I had encountered repeatedly. So I thought I’d go into a bit more detail about some accommodations for people with all sorts of invisible disabilities.

The overriding principle here is: Anyone you encounter may have an invisible disability. They may not wish to disclose and explain that disability to every single person they meet; sometimes, getting out of the house is hard enough, and it’s too exhausting to contemplate spending another and yet another five minutes explaining and defending their (often quite simple) needs. In addition, they have a right to medical privacy. You can do your bit to make their difficult lives a little easier by considering invisible disability access in the various aspects of your life.

This is in no way an exhaustive list. Many items are based on my own experience, or that of others in the forums I frequent. Add your own!

Individuals:

- If you see someone who’s lost, don’t just point them to a sign and walk off – you don’t know whether they can read it. Give them verbal directions, or offer to show them their location. You don’t know whether the person has minimal sight or can’t read. If they are still completely at sea and you think there may be more to the story, ask if they need more help – perhaps they’ve become separated from a carer?

- Give people a break. The person annoying you may not be drunk, high or wilfully irksome; they may have a movement disorder (like cerebral palsy), autism, an illness affecting their memory or speech or cognition, a mental illness. Protect yourself if need be, of course, but be patient with minor irritations. Realise that the world has all kinds of people in it, and they all deserve access to public spaces.

Filed under: Life, autism, disability, education, health

Healthist cheerleading

Disease ‘n’ disability romanticists need to read this, at Twisty’s place. Twisty has a pile of sometimes scary and always downright nasty post-cancer-treatment symptoms.

I’m even hopping madder that I find myself capitulating. “So how’re you doing?” people ask me, and I almost always answer that I’m doing “great.” Because it would seem so ungracious to answer any other way. I mean, since after all I’m not dead and wouldn’t it be greedy and ungrateful of me to expect more than that?

Well, I’m puttin’ the kibosh on that bogus shit right now.

Word, word, word. Perky intrepid survivorists can burn their pom-poms and bite me. I survive because there’s no alternative (at least not one I want to consider). I find stuff I can achieve because the alternative is not doing anything, and that would suck too.

Maybe (some? most?) healthism-cheerleaders are catering to some deep fear. If you acknowledge the bad stuff, you can’t pretend it isn’t there, and you have to consider the fact that maybe you’re not going to be capable of running marathons and clubbing all night for the rest of your life. They don’t want to conceive of a world where their health isn’t under their control, isn’t determined by their Informed Choices. They don’t want to think about what it’s actually like to be sick, so they construct this mass delusion of fetishised survivors, with their Courage and their Moral Supremacy and above all their submissive Smiles.

Gah.

Filed under: disability, health, obstreperation, peeves

MPs shocked, utterly shocked

A cautionary tale from across the ditch: Maia, of Capitalism Bad, Tree Pretty, has a post up in the sad told-you-so category, Politicians Shocked About Predictable Consequences of their Policies. The policy in this case was New Zealand’s public health system privatising the provision of disability support, with contracts for assistance services put out to tender to for-profit companies.

Surprise, surprise. Disabled people are not getting the services they are entitled to, and the contractors who won the tenders are complaining that they can’t find enough employees willing to do the necessary work, especially on late shifts and weekends. As Maia points out, the news article she links has missed some important words in their reportage here on the absence of willing workers here, and those words are “when they pay near minimum wage”.

The MPs who were shocked, shocked I tell you, are either fools or liars (usually both). When you subcontract services out to companies with the lowest tender you drive down wag[e]s. In fact that’s usually one of the main points of this subcontracting.

Quite.

Filed under: Politics, disability

Another one for the social crime list: Parenting While Disabled

A few days ago, I talked a bit about invisible disability and the access issues that people seem to just not think about. Today I’ve been reading the Blogging Against Disablism Day posts at Diary of a Goldfish. Tokah has a post up at From Where I’m Sitting:“Universal Design… not!”. Her rant shouldn’t be revelatory, but it is.

Tokah parents a six month old girl, and has been unable to find childcare equipment that has been designed with wheelchair accessibility in mind. Change tables are an exercise in pain, highchairs are unusable, strollers are useless, and cots:

If the side is up, I can’t reach over it. If its down, it blocks me from getting close enough to reach into the crib.

I poked around the web a little. It returned few pages, mostly from the UK, talking about childcare assessments for parents with disabilities. Almost all of the equipment links I followed led to equipment for parents with sensory disabilities, like baby monitors for Deaf parents. did find this one off-the-shelf wheelchair babycarrier. Just one.

It seems most parents are left to either try to adapt themselves to clunky, inaccessible equipment, or to get someone to custom-make items like this accessible cot. (How many adapted items meet written national safety standards, I wonder?)

This is a problem that should be trivially solvable. But it just hasn’t occurred to manufacturers that a person who uses a wheelchair might be a parent. Or that a parent might just be someone who uses a wheelchair. Or it has, but they can’t spin enough cash from it. Sheesh.

Check out the rest of the BADD posts, and keep a watch on the Gimp Parade for tomorrow’s Disability Blog Carnival #14.

Filed under: disability, family

Stop and think: invisible access for invisible disabilities

This is my first personal post about being sick. A “coming-out”, to some of my online friends. And a whole lot of elaboration, for those who know I’m sick, but don’t know the details. It’s taken me ages to write, and I haven’t re-drafted it: here are my musings, in the raw.

Becoming Sick

I have moderately severe chronic fatigue syndrome, or something that looks very much like it. I first got sick two and a half years ago, quite suddenly. After a few months of feeling just a bit off, not bouncing back with my self-prescribed generic good-food-and-fun-and-exercise cure for tiredness, I suddenly crashed. Over the course of about two weeks, I crashed hard. I became unable to work, and daily living was full of what suddenly seemed to be insurmountable obstacles. I dropped things, felt off balance, walked into things, had large-muscle twitches, thermoregulation problems, I was suddenly blanketed in pain. My short-term memory came and went and I couldn’t concentrate on more than one thing at once, a huge change in cognitive function for me. Most noticeably, activity didn’t pick me up like it always had in the past. Before, if I felt a little off I could go for a bike ride or a swim or a choir rehearsal or a night out dancing, and feel invigorated by it. After, I’d walk a couple of blocks then flump down absolutely exhausted. This was the first time I’d ever felt like this, and it didn’t make any sense!

Filed under: Life, disability, health