Tag Archives: Disabilism

Taking her place

Look at this beautiful picture of MLA Kelly Vincent, sitting in the Upper House in the South Australian parliament.

Kelly’s tribute to a friend who stood tall

I could do without the heavy handed reference to her friend who used a wheelchair in the headline – couldn’t they have referred to a friend who travelled proud, or something like that? But putting that to one side, it is a great delight to see Vincent taking her seat in the house.

Making a difference, already

Kelly Vincent’s seat in the South Australian parliament was confirmed just 20 days ago, and already, she is making a difference. Vincent stood on the Dignity for Disability ticket, and she is both the youngest woman ever elected in Australia, and the first person with visible disabilities elected to the South Australian parliament. She uses a wheelchair, and she has first hand knowledge of just how long some people are forced to wait to get wheelchairs in South Australia; she waited for her own chair for two years, and some people have been on the waiting list for even longer. She says that there are about 600 South Australians waiting for wheel chairs. That’s 600 people who can’t go out, can’t move around their homes, can’t go shopping, can’t engage in the usual activities of everyday life, because the government can’t find the money in its budget to meet their needs.

But it seems that since Vincent was elected, the money and the motivation has been found.

Disability Minister Jennifer Rankine says Cabinet has approved $7.5 million of funding to help clear the waiting list.

“There are people requiring, if you like, pretty standard equipment and we’ll be issuing that as quickly as we can,” she said.

“Obviously when people need specialised, custom-built equipment that does take a little longer, but we’ll be rolling that out as quick as we can.”

First win for Vincent!

I’m sure her presence in the House has helped in a couple of ways. The first way is obvious; the ruling Labor party may need her vote. The second is the politics of presence. When there were no people with disabilities in the parliament, it was hard for their voices to be heard, hard to communicate their needs, hard for politicians to understand just how life might for for people with difficulties. Now Vincent is right there, in the House, and there as an advocate for people with difficulties. As each piece of legislation is formulated and debated, she is able to let other parliamentarians know how things really are experienced by people with disabilities. Their experiences and needs become salient in any policy making as something that is always acknowledged, always considered, always given due weight. That can only result in an improvement to policy making and legislation. It’s a long term victory for Vincent and the people she represents.

Yes, I know I’m a bit rosy-hued about this. There will be setbacks and challenges, and it will take plenty of time and hard work to effect long term change for people with disabilities. But what a tremendous start for Vincent.

Lessons in language

I work on a casual basis at a couple of the local universities (all going well, by the end of the first semester next year, I will have worked at all three major universities in town – nothing like spreading myself around / too thin). In the semester just ended, I taught a course in professional ethics for students working in disability. My expertise is on the ethics side of that course, and I have been very, very grateful for the knowledge I’ve picked up around about the place from people writing specifically about living with disability.

I ran into problems in the last couple of lectures, with defining autonomy. It’s a critical value in Western liberal democracies, and highly relevant to people working in disability. It can be a yardstick, a constant question that can guide practice – does my action enhance or compromise the autonomy of the person I am working with?

But the students in this course are completely new to ethical analysis, and often they aren’t even sure what autonomy is. So I needed to come up with definitions for them, and given that they are normally very applied workers and thinkers (c/f the philosophy and political theory students I normally work with), the definitions need to be structured in a way that helps the students to connect with them. This is a common issue in professional and business ethics courses; it’s usually the first time many of the students have engaged with any formal study of ethics. Often it’s simply a matter of providing words and a conceptual structure so the students can articulate knowledge they already have intuitively, but in order to do that, I find it easiest to flesh out the very conceptual definitions of autonomy with more applied definitions.

And that’s where I suddenly realised that all the imagery I customarily used when talking about autonomy was just … wrong.

Very formally, and in very bare bones fashion, autonomy is the capacity for self-government. It’s the freedom to make and to act on choices.

Whatever. Often the bare bones definition doesn’t give students a sense of why autonomy is important. So from there, I talk about the idea of people being autonomous adults, of being independent and recognised as independent operators, of having a sense of themselves as being independent and worthy of respect, of being equals who are able to stand tall and look the other in the eye.

Ouch. As I opened my mouth to utter this phrase, one that I’ve used for many years, I suddenly realised that it was just wrong, not only for that class in particular, but for use in general. I stood there gaping like a goldfish, and eventually told the students that I was lost for words, and explained why.

I’m not likely to be teaching that particular course again: I was filling in for a semester while the person who usually teaches the course was on study leave. But given my areas of study, I’m highly likely to be lecturing on the value of autonomy again. So right now I’m working hard on coming up with something better to say. Any suggestions will be gratefully received, and carefully considered.

Why hasn’t this man been charged with assault?

(Potentially triggering)

A man who worked in disabled care, Andrew Lambert, has been reinstated in his job by an employment tribunal, after he had been sacked for “inappropriate behaviour” towards two intellectually disabled women in his care. [link to Sydney Morning Herald story – may be triggering]

To the great good credit of the organisation which employs him, the NSW Department of Ageing, Disability and Homecare, he hasn’t actually been allowed to go back on the job, but he’s now collecting his full salary.

Continue reading

Pick up your pens – activism time

I’m guessing that most Australians who read my blog also read Hoyden about Town (the whole world ought to read Hoyden about Town), but just in case you don’t, head on over there and read Lauredhel’s post about the proposed harmonisation of accessible parking rules. Under the proposal, people who are mobile, but nevertheless can’t walk far, will be excluded from using accessibility parking. Lauredhel has details about the proposed rule changes, an account of what it would mean for people who have limited ability to walk, and importantly, what you can do to help.

Call to activism: many people with disabilities to be excluded from accessible parking under proposed scheme

Lose the language. Now.

Cross posted

bad02

This post is my contribution to Blogging against disabilism day.

I’ve noticed, not so much at In a Strange Land, but sometimes in comments, and more frequently in comments at The Hand Mirror, and very, very frequently elsewhere in the NZ blogosphere, ‘ableist’ language. That is, language that uses disabilities to disparage something. Very, very simple stuff, like saying that something is lame, or that someone had a bit of a spas / spaz.

Just.Don’t.Do.It.

Here’s why. (This is very much Disabilism 101 – old, old news to people who work with these issues all the time, but evidently, not much known elsewhere.)

You can say that x is bad just by saying, “X is bad.” But another way to say it is to compare x to something (which is also perceived is bad). So, “X is lame” carries that same connotation i.e that “X is bad.” The two statements are equivalent. And from there, it’s just a short step to: “Lame is bad. You are lame. You are bad bad bad.”

Sure, you can pick apart the language logic, and point out that of course, being lame is not something that people normally welcome, that being less than able bodied in any way is not desirable. And really, that’s all that you are saying.

Whatever. The point is, you are using language that describes the way that living breathing thinking feeling human beings are, language that describes integral parts of their every day reality, and using that language to say that some other totally unrelated thing is bad. What people with disabilities hear, and what I hear too, is language that mocks and denigrates them. It’s all so very negative, so very disempowering for people with disabilities, and yet it is so easy to avoid.

So lose it. Make the effort and find another word. Here’s some that you can use:

flimsy
inadequate
insufficient
unconvincing
weak
unsatisfactory
inept
pathetic
deficient
hollow
meagre
perfunctory

And instead of knocking people who have cerebal palsy, which is a heart breaking condition, by saying that you, or someone else, threw a spaz, what about talking about having a wee tanty. It carries exactly the same connotations.

English is a very rich language. Next time, instead of plumbing only the depths of disabilism, that is, language and behaviours that deny the humanity of people with disabilities, make a little effort, try being just a bit sensitive, and mine the rich resources of English instead.

Recommended reading

I bought the Australian Women’s Weekly (NZ edition) today. Not my regular magazine purchase – my more usual Thursday indulgence is the new New Scientist.

I had a special reason to get the AWW (NZ) – our friends Belinda and Karl, and their son Harry, feature on pages 108 – 109. The AWW (Australian edition) has an article on autism in Australia; Belinda and Karl and Harry are the local colour in the NZ edition.

Harry has autism. Full-scale autism – not the more mild, and less easily detected, Aspergers Syndrome. Harry’s autism was identified very early on, when he was about 16 months old. Aspergers is often not identified until much later, because the indicators are much more subtle.

He’s a fantastic kid, despite the evident behavioural difficulties. He’s cuddly with his parents, he responds to direct conversation, he participates in games. I have seen him play very successfully with my two younger daughters, with all three of them totally focused on a model ship and all the little pieces and ‘men’ that could be moved about on it. On the same visit, when we all went off to visit Kelly Tarlton’s, he was very keen to sit with my elder daughter – he thought she was lovely (she is, of course). He responds to people, he’s talkative, and more than just talkative, he’s communicative.

And like both his parents, he’s very, very smart. He’s no legendary idiot savant – he’s just a bright kid, operating through autism.

None of these things have happened by accident. Karl and Belinda worked out very early on that Harry was not in the normal spectrum of behaviour. Once the initial shock passed, they set out to find out more and more about autism, and about how to work with their son. They have worked extraordinarily hard with him, using charts, photos, rewards, punishments (such as no more computer time), written words, endless repetitions of basic behaviours, to help him to learn how to communicate. Their goal is not to change their son, but to help him to be able to function in our society.

They have spend a huge amount of money doing this – around $200,000. Harry is at school now, with a Department of Education funded teacher aide. The particular grant is an Ongoing and Reviewable Resources Scheme grant, known as an ORRS grant.

Here’s the real problem. Because Belinda and Karl have worked so hard with Harry, because they have poured in the time and effort and money now, his behaviour is manageable, to the extent that funding will most likely be withdrawn at the end of 2008. At that stage, the people assessing eligibility for ORRS grants will visit Harry again, assess his behaviour, and decide whether the grant should be renewed. But Belinda and Karl have worked, and continue to work, so hard with Harry that his behaviour is much improved, so he is unlikely to get the grant again. Yet given the nature of autism, which is not ‘curable’, if the funding for a teacher aide is withdrawn, then Harry is likely to be unable to function in a mainstream classroom.

It’s a lose : lose scenario for parents of autistic children, and parents of children with other disabilities. If they spend time and money now, then in future years, instead of getting assistance so that their children can be educated, and become self-supporting citizens, they will have to pay all over again. If they had simply not bothered, then funding for teacher aides would have been available.

This is a real case where a fence at the top of the cliff would save so much grief in future years.

I salute our friends Karl and Belinda. Autism destroys relationships – the main Australian based article in the AWW gives a break-up rate of 87%. Belinda and Karl have been through some very rough times, but they are still together, and still there together for their children. And their son is a lovely lad.