Disability Futures

Today ( Feb. 21, 2012) in the Maryland legislature, the House Health and Government Operations Committee held a hearing on HB 449, a bill to grant health care surrogates the power to donate “non-vital” organs (a kidney or lobe of a liver) of a person diagnosed to be in a persistent vegetative state (PVS). I know of four organizations that provided testimony, none of which is available online, though I have copies. The Maryland Disability Law Center, the MD protection and advocacy agency, registered concern about the potential for misuse.

Gee-What could go wrong with this???

Our bodies as technological products that can be deconstructed for recycling to more profitable uses. More sophisticated than "Soylent Green".Since PVS has a 40% diagnostic error rate, this bill really is about medical control and money.

Lately, I’ve been troubled by articles in the New York Times and The Daily Beast that imply that people with Asperger’s are not on the autism spectrum, but are merely shy or quirky. I’m not going to get into discussing the specific content of the articles, because Emily Willingham has already done a brilliant critique of both pieces.

What I want to address, from a different perspective, is the idea that anyone who “passes” as non-autistic for some portion of their lives (and by “passing” I mean “acting in a way that doesn’t look like someone else’s autism stereotype”) can’t possibly be autistic. This line of reasoning is so old and hackneyed that it’s rather wearying to keep speaking to it — mainly because it’s difficult to know exactly how. If I start describing all my difficulties for someone asking me to “prove” it, I’m blowing my privacy and giving away my power; after all, if I assert a disability identity, I certainly shouldn’t have to explain how I came by it. Besides, the whole act of explaining is a fool’s errand, because in the discourse of autism, if I can explain what autism feels like for me, I can’t be autistic.

Interesting post and an interesting blog. Well worth a look.

In prisons, however, approximately 60 percent of adults have had at least one TBI—and even higher prevalence has been reported in some systems. These injuries, which can alter behavior, emotion and impulse control, can keep prisoners behind bars longer and increases the odds they will end up there again. Although the majority of people who suffer a TBI will not end up in the criminal justice system, each one who does costs states an average of $29,000 a year.

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Researchers from Mount Sinai School of Medicine have discovered that decaffeinated coffee may improve brain energy metabolism associated with type 2 diabetes. This brain dysfunction is a known risk factor for dementia and other neurodegenerative disorders like Alzheimer's disease.

Interesting...

In the eyes of many medical professionals, a child with Trisomy 18 is doomed. Why bother to administer extra care? Perform heart surgery? Give the parents a reason to hope? Certainly, we experienced this attitude from medical professionals. A neurologist who saw Zane at 4 months for seizures said that his feeding issues were nature’s way of controlling the population. While this may be true, it is not something a parent wants or needs to hear when grappling with the fragile life of a child. When Zane had a gastrostomy tube placed at 7 months of age, a gastroenterologist at the children’s hospital told me how “psycho” it was that Zane was sent home under hospice care with a feeding tube. Better to starve him, was her argument.

There are many great doctors who have cared for Zane. There are many not-so-good ones as well. While Trisomy 18 is usually fatal, it is not always. And even with the shortened life expectancy of children living with the diagnosis, there should be a level of compassion on the part of the medical world when handling families such as ours.

We appreciated the neonatologist’s honesty about the statistics associated with Trisomy 18. But Zane is a living example of how the medical community is not the end-all of knowledge. They do not have crystal balls or prophetic gifts. As such, many of them should not pretend that they do. We had little or no hope for our son. With the doom and gloom presented to us, we lived in a place riddled with anxiety and hopelessness

Eprognosis is barely a week old, and we've already had over 500,000 pageviews (150,000 unique visitors).  For perspective, GeriPal is about 3 years old, and in that time we've had 400,000 pageviews.  We've had loads of press, including 6 stories in the New York Times about prognosis and eprognosis (Stories by Paula Span here, here, here, here, and here.  Story by Pauline Chen in today's paper here.  For a more complete list of media stories, see the eprognosis "About" page here.  Unexpectedly, about a quarter of our hits have come from Turkey, due to this news story.)

All this attention prompted my six year old son to say, wistfully, "I remember before daddy was famous" --  as if our lives have changed dramatically, and the paparazzi are chasing us down!

But seriously...what does all this mean?

The Department of Education's (Department) Office for Civil Rights (OCR) today issued a Dear Colleague letter concerning the Americans with Disabilities Act Amendments Act (Amendments Act). The letter and accompanying Frequently Asked Questions document (FAQ) provide additional guidance on the requirements of the Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act (Section 504) in elementary and secondary schools, given the changes to those laws made by the Amendments Act.

There is a long standing tension between bioethicists and disability rights activists and scholars. The exchanges between bioethicists and disability studies scholars in press and in person are polemical and often mean spirited. These exchanges transcend routine and strongly held scholarly differences. Simply put, there is a deep rooted personal and intense dislike between disability scholars and bioethicists. For example, Stephen Drake commenting on Peter Singer wrote that his "work as it pertains to euthanasia, infanticide, and personhood--the idea that some human beings are persons and others are not--is riddled with sloppiness and even dishonesty. To be fair, those traits aren't Singer's unique domain in the field of bioethics. Bioethics is a field that doesn't seem to demand intellectual integrity and honesty from professionals within its fold". Drake's harsh words are well within the norm. I get Drake's animosity--it is hard for any person with a disability to not take comments by bioethicists to heart.

Disability/Culture symposium, University of Michigan, January 31st to February 2nd 2012

Join us in our fifth annual arts-based research symposium at the University of Michigan:
Disability/Culture, January 31st to February 2nd 2012

Symposium Program (all events in the Duderstadt Video Performance Studio on North Campus, unless otherwise stated. Events marked ?open? are open to the public, just walk in. If you want to participate in other workshops, please email the symposium director, petra@umich.edu, so she can send you relevant information or readings)