Monday, June 30, 2008

Vera Just Needs a Ramp - Nothing Fancy

Late last week the Washington Post ran a story about the plight of people with disabilities in Russia.

Here’s the context:

Vera Samykina is an A student in all subjects who just completed ninth grade, a significant marker in Russian education . . . Samykina, 17, is determined to finish high school in two years and then pursue a university degree in English. She has never been inside a regular classroom, however. Most of her education occurs in her cramped Moscow apartment. Samykina has cerebral palsy, and until she was 15, tutors came to her house three times a week for a couple of hours to instruct her in her various subjects. For the past two years, she has been taught over the Internet by specialists in each subject.

Unfortunately, I’ve read these stories hundreds of times. Someone with a disability who has to fight hefty odds just to do things that the rest of us take for granted.

And the problems for people with disabilities, even in such a relatively developed country like Russia, are still quite elementary: lack of access, exclusion from school, treated differently because of their disability, etc.

The piece explains that even simple access issues are ignored, such as wheelchair ramps. Vera’s family has to physically drag her wheel chair up the 3 flights of stairs to their apartment. They have been unsuccessful in getting authorities to build a simple ramp.

Makes me want to grab a few 2 by 4s, saw, hammer, and nails, and head over to Moscow and take care of business.

Perhaps it’s time for a disability organization equivalent of Habitat for Humanity, building access and physically supportive structures for people with disabilities.

Offers, anyone?

Friday, June 20, 2008

Dangerously Stupid Professional Behavior

This is not an entry I wanted to write.

Gabriel’s dead, and nothing anyone can say or do will change that.

He didn’t need to die, and I don’t think it’s too much of a stretch to say that he died because of his disability.

He also died because so-called “professionals” engaged in egregiously stupid behavior.

As Canada’s Gazette reported this morning, 9 year-old Gabriel was autistic. Garden variety, it seems, with outbursts of inappropriate or loud behavior, or as the report noted, “He could be difficult to handle and easily agitated.” But not violent.

Gabriel had a classroom outburst last April the 17th. He got loud, and apparently didn’t comply with his teachers’ warnings to desist.

Nothing unusual there.

BUT, folks, here’s where the usualness of a child with autism engaging in autistic behavior took a dark turn:

When Gabriel continued to behave inappropriately, one teacher took him to the corner of the classroom and rolled him tightly in a weighted blanket.

An accepted intervention in Canada, apparently. With the heavy blanket wrapping him tight, and with only his feet exposed, Gabriel was suffocated to death.

I’m sorry, am I missing something? A weighted blanket?

The report goes on to inform readers that, yes, folks, a weighted blanket is an effective intervention for children with autism.

Don’t believe it, not for a second.

Just read the sanctimonious responses of the apparatchiks justifying the use of this barbaric intervention:

When used under the guidance of an occupational therapist, weighted blankets can be calming for autistic children, said Kathleen Provost, executive director of the Autism Society of Canada.

"They have a therapeutic use and can be relaxing," she said.

Many autistic children respond positively to sensory stimulation like touch, massage and weighted blankets.

Occupational therapists have found sensory stimulation is soothing to autistic kids and sometimes produces better results than medication.

Although teachers at Marie Rivier had received training and guidelines from occupational therapists about how to use weighted blankets, the rules were not followed the day Gabriel died, the coroner's report said.

Forgive my British heritage showing: Absolute balderdash.

The whole rationale for this violence involves so much quackery that I don’t know where to begin.

One: Any physical restraint is, by definition, not therapeutic – it’s a safety measure. It should be done very rarely, and then only under extraordinarily controlled conditions. I can’t think of any way that tightly wrapping and covering an agitated child has any legitimacy whatsoever.

Two: If the Autism Society of Canada sees this as an acceptable intervention, they should rename themselves the Crackpot Autism Society of Canada. Immediately.

Three: The sensory stimulation angle: it’s much beloved by physical and occupational therapists but is absolutely unsupported by empirical evidence. Acting professionally on this idea is like flapping one’s arms and believing that at some point you’ll be able to fly.

Four: Perhaps the scariest part of the report is the solemn observation made by officials that this intervention is OK as long as implementation rules are followed.

Here’s why Gabriel died: Because incompetent teachers, therapists, and administrators were sucked into a half-baked and completely unsupported intervention masquerading as state-of-the-art professional practice in dealing with children with autism.

Gabriel would have been better off, and alive, had he and his family avoided the “highly qualified” professional version of the Keystone Cops.

Monday, June 9, 2008

When Disability is a Death Sentence - Literally

In the most accurate sense of what disability means, skin color is not often an issue that jumps out at us from the news media. While we still live, unfortunately, in a world where skin color can often lead to prejudice, oppression, and even abuse, these evils are rarely provoked because of "skin color disability."

However, there is at least one instance where skin color does mean disability in the medical sense: Albinism. People with albinism inherit a genetic disorder characterized by the presence of little, if any, melanin and other skin pigmentation in their skin. They are especially susceptible to severe skin damage; most often skin cancer from exposure to the sun. Many have characteristic vision problems.

A medical disability, no question.

However, albinism is often also a difficult social disability in societies where physical appearance can mean the difference between being included or excluded based on a person’s physical characteristics.

Such is the case in Africa and many other developing countries, where people with albinism are seen, depending on who you are talking to, as either a curse or a blessing. Either way, Africans with albinism lose.

Yesterdays New York Times carried a heartbreaking story from Tanzania documenting the increased murder of Tanzanians with albinism because their body parts are prized for witchcraft potions.

Disability as death sentence.


Difficult enough that you live in a part of the world where your life expectancy is pitifully short (even by African standards) because there’s no money for sunscreen lotion (to say nothing of no education on how to manage the condition).

Difficult enough that your very visible medical condition marks you not as a human being, but often as the ingredient of some allegedly magic brew.

Difficult enough that you are an economic prize – but only after you have been mutilated or killed for your precious body parts.

Hats off to the Tanzanian Government, which has acknowledged the problem. They’ve taken some very aggressive steps to combat this horror – police protection, and the appointment of a person with albinism to the national government, for example.

The Tanzanians could go much further, though. 

How about the Tanzanian Government continues its good-faith efforts by signing the newly ratified UN Convention on the Rights of People with Disabilities? This ground-breaking international human rights agreement was meant to address exactly this kind of disregard for human dignity.

Let's hope it does so.

This sad and horrific story, at the very least, reminds us that we obviously have much work to do wherever disability prejudice is found.