The people we're OK with killing

There's a powerful piece of writing by Tommy Christopher on Mediate about a major US network excusing the murder of a disabled child.

People with Autism Spectrum Disorders (ASDs) are routinely slandered in the news media, even by parents of autistic children, but nothing comes remotely close to a CBS News report that sickly excuses the murder of 14 year-old Alex Spourdalakis by his mother and an accomplice. The report has spurred a petition to have CBS News take it down, but they really need to air a complete retraction, and discipline everyone involved in this travesty.

On Friday’s CBS This Morning, reporter Sharyl Attkisson delivered a report that was fatally flawed on several levels, but I hesitate to even mention the reporting itself, because even if everything in the report was 100% above-board and true, it would not support the sick conclusion that permeates it: that Alex Spourdalakis’ mother had no choice but to murder him. This sounds like an exaggeration, surely, but it is not. This was the explicit message of CBS News’ report.

The closest anyone in this report comes to denouncing Alex’s murder is anchor Gayle King, who introduces the piece by saying “The case is extreme, but it shines a light on the struggles of hundreds of thousands of families coping with autism.”

Why can so many journalists involved in compiling and presenting this report be so blind? Christopher quotes Ari Ne’eman, President of the Autistic Self Advocacy Network and the first presidential appointee with autism:

"An ideology, a dangerous ideology that preaches that people are better off dead than disabled, is what led to Alex’s murder."

This is hardly just an American problem. Hate crime against the disabled is going up in the UK, aided by, yes, them again, the media. In the UK's case it's a drip-drip of stories about fake benefit claimants, allegedly sourced back to the government.

In another powerful piece for ABC Australia Stella Young details harrowing case after harrowing case of:

Disabled people who have died at the hands of family members, and so often the media uses terms like 'compassionate homicide' or 'mercy killing' to describe the actions. But the killing of a disabled person is not 'compassionate'. It is not 'euthanasia'. It is murder.

In one case a daughter was starved to death.

Angela Puhle pleaded guilty to a lesser charge of manslaughter and was sentenced to a three-year good behaviour bond. Further, the judge described Puhle as "a loving and devoted mother". He said:

"You did all you could over the years to ensure she could live as happy a life as possible for a person with severe disabilities that she suffered from."

She will not serve time in prison.

Consider for a moment the fact that in South Australia where Kyla Puhle died of starvation, the offense of ill treatment of an animal - whether or not that ill treatment results in death - carries a maximum penalty of $50,000 or four years in prison (PDF). Earlier this year Adelaide man Hally French pleaded guilty to bashing a dog with a pole and suspending it from a clothes line. He received a three month prison sentence. The dog subsequently made a full recovery.

Like Christopher, Young makes this point:

While the disability support system may indeed be woefully inadequate to support these parents, it cannot possibly be used to justify murder.

Of course not, but I do wonder if there is not a collective responsibility. A community, neighbours, relatives, who let down those disabled people. Professionals who, like is often reported when a child is neglected and murdered, who saw warning signs but failed to take action?

If we can understand racism or homophobia as being something pervasive, as not limited to 'bad' and 'good' individuals, as not a personalised 'sin', then surely disabalism is also a collective and pervasive issue? That disabalism killed these people?

If these parents were killing their kids because they're gay then we'd understand that the parents are personally responsible but also that the community let them get away with it and allowed that level of hate to fester?

Hugh Ryan wrote a powerful piece last month in the New York Times reviewing a exhibition about the first five years of HIV/Aids in New York. He chronicles how the exhibition whitewashes those institutions, like, but far from limited to, the Catholic Church, who were perfectly happy to watch gays die.

Bad history has consequences. I’m not afraid we will forget AIDS; I am afraid we will remember it and it will mean nothing. If we cannot face the root issue — that we let people die because we did not like them — AIDS will become a blip on our moral radar, and this cycle will repeat every time we connect an unpopular group with something that scares us.

I survived that time and I can well recall: people wanted people like me dead, that's just the truth. It wasn't just individuals, it was something far more rotten.

If murder and ill treatment of the disabled is getting worse that's not about a few bad apples, it's about our collective decision to allow it to happen.

Channel Four are idiots

Repost for Blogging Against Disablism, 2013.

Australian comedian Adam Hills has attracted worldwide attention for blistering comments he made this week about fellow comedian, the legend that is Joan Rivers.

Rivers has been slagging off pop diva Adele for her weight and Hills went to town on his show The Last Leg. He said:

How dare you make fun of one of the best female role models on the planet for the way she looks. Adele is one of the very few women in pop music that I want my daughter to look up to – and you’re making jokes about the way she looks? When you’re so insecure about your own face, you’ve spent more money on it than the producers of Life of Pi spent on that tiger?

And much more ...

An American blog I follow alerted me to it but the embedded YouTube clip has been taken down because stupid Channel Four made a DMCA take-down request. As it has for the many other attempts to put Hills comments up on YouTube.

Why? What possible negatives could there be for the clip going viral? It makes absolutely no sense.

I'm sure Hills is just delighted (not) at C£4's actions.

Perez Hilton has video up so you can watch thanks to him after the jump:

Life in a Wheelchair

Bit late but here's my contribution to 'blogging against disabilism'.

Wheelchair use ain't easy and one of the best ways to see this is to see life from a wheelchair users perspective. It seems to me a great use of video to show this and 'put yourself in their place' for the able-bodied, plus a great way to silence moaners about having to create ramps etc.

I hope at some point in the near future to produce a video showing this in my home town.

Here's some videos showing what I hope to show and some other talky ones.

Life on Wheels


Getting up from a Laying Down Position


Is a joke, right?


Ask me first!


One challenge after another


Also have a look at the clips from this documentary.

It definitely helps to show people. Listening to a screen reader, watching a very disabled person use the web, experiencing a wheelchair - all of this changes perspectives straight away.

It's also important to enable people to raise concerns. Life with a disability is tough and so being the 'complainer' just adds extra work. Any time you can encourage disabled people to take the lead on accessibility, take it.


Postscript: forgot to mention that this post occurred to me when I read How People with Disabilities Use the Web on the W3C website - I thought this idea could use some video.

Commentator asks 'where's the subtitles' - good point. If I find them I'll post them.

Against disabilism - Ensuring accessibility

Today is 'Blogging against disabilism' Day and it's timely. I've got the issue on my mind right now. Plus I'm attending a conference on the subject tomorrow.

So what is disabilism and what's this day about?

Well firstly, the term's possibly unfamiliar, like a fair few 'isms'. You'd think it means either something esoteric or what you think it means.

It's the latter. It's discrimination:

Says Wikipedia:

'Ableism is a term used to describe discrimination against people with disabilities in favour of people who are not disabled.

Advocates of the term argue that ableism is, like racism, and sexism, a system by which main-stream society denigrates and devalues those with disabilities, while privileging those without disabilities. In extreme cases, morality, worth and intelligence may even be equated to being ablebodied or ableminded, while disability is conflated with immorality, stupidity, and worthlessness.

An ableist society is said to be one that treats non-disabled individuals as the standard of ‘normal living’. This results in public and private places & services, education and social work that are built to serve 'standard' people, excluding those with various disabilities.

The presumption that everyone is non-disabled is said to be effectively discriminatory in itself, creating environments which are inconvenient or inaccessible to the disabled. Inclusion means that all products, services, and societal opportunities and resources are fully accessible, welcoming, functional and usable for as many different types of abilities as possible. An ableist society tends to isolation, where an inclusive society tends toward sociability and interdependency^{[citation needed]}.

In the U.S., the Americans with Disabilities Act enacted into law civil penalties for failing to make a public place accessible to individuals with certain impaired abilities and/or using standard assistive technologies. In the UK, the Disability Discrimination Act 1995 and 2005 attempts the same. There are also disability rights activists attempting Inclusion movements in various countries.

The caveat empor to all this, in my opinion, is the issue of resources — you cannot avoid it, although often the issue is circumvented. Because for a society to (truly) grant access rights, for example, usually requires resources. And 'rights' can and do clash.

Some of the societies I've worked with have few resources to start with, so this issue resonates differently around the world and is not universally the same.

In those societies which don't resource the severely disabled for example — because they can't — I wouldn't want to see our Western, privileged view prevail. Or, god forbid, a religious or PC one.

Where in my view 'disabilism' should be sited is human rights, because in different societies it's the value of a human being, for what they can contribute, which counts.

So, should it in ours.

If you start from that point, our society has the resources to enable many more citizens. It's a human right we can easily uphold if we choose to. And the daily cases in the UK where people have made no effort for disabled people - laughed at the effort, pitied it and upplayed it - should be understood as denial of human rights.

Having worked with and seen just how powerful computers and the web can be for disabled people, denying that — especially for reasons like so we can pay 1p less on our petrol tax for example — just feels like denial of the rights of fellow humans, fellow citizens. We collectively decide where our resources go.

The Day was set up by the blog 'Diary of a Goldfish' and this is the second year. And the aim is "to write about disability and rail against the discrimination that disabled people continue to face".

JackP told me about it and I jokingly replied that I'd ranted on the subject only that very day in an email. We both work for councils. My comments come largely from that viewpoint, plus I don't live this subject (so I'm kindof hoping this has been said).

See, what bugs me is technical talk, and - worse - mere technical comprehension, about accessibility. I'm fed up with it.

Not because it's not important — it's essential — but because it amounts to a very small hill of beans in the end.

No. Technical accessibility is largely, straightforwardly fixable with the truly difficult being ensuring that it actually, consistently happens — humans, able bodied ones, are the issue. Even all the complicated stuff thrown up by web 2.0 and mass Flash usage will be technically fixed. Partly by the market.

But it's largely also not prioritised — there is a very strong 'all or bust' vibe and hence a key, real world driver is often plain guilt — and this leads into my main point/hurdle.

What I'm thinking about is ensuring accessibility, which can be seen within my wider peer community, in my view, as 'the next stage' when really, my point is, it's the only stage.

I'd like to post this, on this day, as a different way of speaking about this subject. Ensuring it.

And the only way I can think you can do that is by being led by disabled people, led by the user, just as you should be with web development generally.

But is this what happens? No. Whilst you're 'fixing the accessibility' do you actually know if disabled people consider you accessible? Do you ask them? Can they answer you - do they have the capacity? Is it only one type of disability you ever hear from? Is what you are making accessible of any use? Has the accessibility software you've just blown your budget on done anyone any good?

Do you do things on disabled people's behalf?

Thinking more widely, doesn't the website actually reflect the organisation? If your council hasn't got it's act together in lots of other areas are you just making innacurate or incomplete information accessible?

So many web developers in my group whinge on about technically getting accessibility right. Why? What are you making 'accessible'? Are you actually letting down disabled people or have you just convinced yourself you are? Did a disabled person tell you you are?

These are questions I could have posted many times to comments within my community on this subject.

See how far we've actually got to go, just conceptually, in considering 'accessibility'.

For me, in thinking about this is does come back again and again and again to the user and being led by them.

How many accessibility conferences in the public sector have had no disabled attendees?

How on earth can we (the abled) know what to prioritise?

I have a story with this. I saw an incredible piece of kit, on CSI of all places, called Trekker. Now the poor blind woman in peril (that's a new one) had one of these and - F*** me - it showed her which floor she was on. GPS genius. Bye bye Baddy.

Now being a boy, I loved it. But one of my blind (female) friends practically salivated at the thought.

Thing is, bought wholesale, back-of-an-envelope, this piece of kit (on it's own, no training, believe me that would self-organise as if by magic) could be delivered to every registered blind person in my city for well under a million pounds. But the value, the liberating value, would be many, many times that. A million in the scheme of things is nothing and you could easily make a business case.

When I was on a conference forum once and mentioned this story, though, a fellow panellist from a blind people's group (who wasn't blind) gave me the right old eyeful.

I can see why. It's 'off-message' and all a bit 'pie in the sky'.

Why? Because we're settling for so much less. There's no roadplan to get to Trekker for all.

One of the things I've always noticed with minorities (I wonder why, could be the 'gay' thing ... ) is that those people asking for their rights are 'militant' and the rest are 'grateful'.

What minorities want and what they get given are very often, maybe always, two different things.

Well I'm sick of pity and gratitude too. Let's talk human rights. Same as one of the reason's we're getting rid of anti-gay discrimination is because all society loses because of it, we need to resource disabled people to our society's capacity.

Resources and priorities. Sticks and carrots. Let's move to Ensuring from Compliance.