“I Had Asperger Syndrome. Briefly.”

An interesting Op-ed from the New York Times titled “I had Asperger Syndrome. Briefly” explores the process, and history, of asperger syndrome. Benjamin Nugent writes,

The general idea with a psychological diagnosis is that it applies when the tendencies involved inhibit a person’s ability to experience a happy, normal life. And in my case, the tendencies seemed to do just that. My high school G.P.A. would have been higher if I had been less intensely focused on books and music. If I had been well-rounded enough to attain basic competence at a few sports, I wouldn’t have provoked rage and contempt in other kids during gym and recess.

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Here We Go Again: Canada Bars Family of Autistic Teen

Recently, we told you about an immigration restriction case involving a family living in Montreal. We then told you about the resolution of that case.

As evidence that the recent case was not an isolated incident, this Ottawa Citizen article describes a similar case.

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I Hate “Special Needs”

Of course I don’t hate so called people with “special needs”; I hate the label “special needs”.  I’m no fan of other forms of “politically correct” language (for example, visually impaired, partially sighted, or people with disabilities).  But at least I can understand the motivations behind employing these terms.  The word blind (to the uninformed) connotes the complete absence of sight.  I would rather expand the widely-accepted meaning of the word blind, but I get the motivation behind introducing a term that suggests an inability to see very well without being completely blind.  Similarly, I understand the desire to want to emphasize that the physical variation isn’t the entire person.  I don’t like the way the phrase “people with disabilities” implies that the person possesses the disability rather than it being imposed by social factors, but we do wrong if we fail to acknowledge anything more about a person than the physical variation that results in disability, and “people first language” is trying to address that wrong.

That said, I can’t find worthwhile motivations behind the use of the term “special needs”, and I strongly reject the sentiment expressed by the term.  What it implies is that there is a group of people who possess a set of needs that differ from… differ from whom? From those who are normal I suppose.  What is overlooked by this attitude is the ways in which social factors (e.g., power and status) can shape needs and determine which ones get marked off as “special”.

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Parenting, testing, disability, autism

In a recent comment on an older post of Kristina Chew’s, “Eugenics, Fear, and Pain” over at Change.org, one parent says:

I found out three days ago both of my children are positive for the PTEN mutation. There is a link between PTEN and autism. I think it’s that one in every 5 people with the mutation have autism–very strong odds. I opted for genetic testing with my son. The triple screen came back very abnormal. He had 1:6 odds of Down Syndrome. I opted out of an amnio. I’m glad I did because he did not have Down’s and I’m unsure they could have told me if he had the PTEN mutation. Since only 1 in 250,000 people have this mutation I highly doubt he would have been checked for it. I didn’t know I had the mutation until 2007 even though I had every sign there is–just no name. We did not do genetic testing with our daughter. I guess the point of this is sometimes problems exist that aren’t detected. No one is guaranteed what society sees as a “perfect” child. My daughter was placed on the PDD spectrum before her second birthday. We didn’t understand the link at the time as this was around the same time as my PTEN diagnosis. She’s so beautiful and smart. The only problem is reaching her through language sometimes but intervention is changing that. Last night she was speaking to me quickly as she does and I didn’t understand her. I slowed her down and BOOM there was meaning. It’s frustrating for her in not being able to get her point across easily but she’s making great strides.

I just cannot fathom anyone not thinking my child’s life is worth it. As someone who has been through 24 operations and 3 diagnoses of cancer by age 30, my quality of life hasn’t been the greatest. My own father once said if he had known what I would go through he wouldn’t be sure he and mom would have had me. I cannot begin to explain how painful that was. Continue reading

Pet pills, “ASD”, sexual morality, exclusion, and a fairytale

and not all five in one post, but each in its own, as I run 5 more posts from What sorts from roughly mid-2008 to early 2009.

Is your dog on Prozac?

Autism spectrum research and disability language alternatives

PZ Meyers on the enhancement of sexual morality: a modest proposal

The ethics of exclusion, the morality of abortion, and animals

A fairytale for my grandchildren

On reasonable accommodation

Here’s the beginning of a recent autobiographical post from AbnormalDiversity, where you can go if you want to read the whole thing. It tells us a lot about how universities are organized, and what our social priorities are.

OK, so I’ve found out that the midterm in my women and gender studies class requires that I write three essays during the course of the exam, and I know that it’ll be really painful to write that much by hand in a short time, especially when I’m anxious. Well, since difficulty with writing can be a feature of autistic people, and I’m registered at the university as an autistic student, shouldn’t I be able to use a computer to write my exam?

Not so fast! They can’t just take my word for it! They need a doctor’s note, which means I need to bug my Dad about making an appointment with the doctor, so that I can go and tell her what I need and she can write it down. Why is this necessary, again? My doctor doesn’t actually know what accommodations I need, she’s literally just writing down whatever I tell her, so why can’t I just tell them directly?

But anyway, we get the doctor’s appointment, a couple of weeks after I first figured out that I needed it. Then I miss it. We reschedule, and finally I’ve got a doctor’s note saying I need to use a computer for essay exams.

Cognitive Disability and its Challenge to Moral Philosophy

Readers of the blog who followed our Thinking in Action series of blog posts on the above-named conference, held in New York in September 2008, as well as others, might be interested in having a look at the finished papers from that conference. They have now been published in a special issue of the journal Metaphilosophy (which strikes me, at least, as a strange venue). The table of contents is below and from here you can link to the abstracts for each of the papers; for the full versions, you need an individual or institutional subscription, it seems. To see some videoclips from the conference, together with critical commentary, check out the Thinking in Action posts themselves; nearly all of these directly discuss the talks at the conference corresponding to some of the papers listed below. The videos are both closed captioned and have transcripts with them to enhance accessibility.

thanks to shortintro for the blog comment that drew this to our attention.

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ARTICLES

INTRODUCTION: RETHINKING PHILOSOPHICAL PRESUMPTIONS IN LIGHT OF COGNITIVE DISABILITY (p 307-330)
LICIA CARLSON, EVA FEDER KITTAY
Published Online: Sep 18 2009 11:37AM
DOI: 10.1111/j.1467-9973.2009.01609.x

Abstract | References | Full Text: HTML, PDF (Size: 161K)
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