Recommended Reading for October 12, 2010

Darshak Sangavi at Slate: Should you crowdsource your medical problems?

To be sure, many patients with complex or poorly understood medical problems like amyotrophic lateral sclerosis congregate in large virtual communities such as PatientsLikeMe, where they share details of their medical treatments and symptoms with each other—and occasionally even launch their own unregulated and informal drug trials. These communities provide some helpful information and support for many people.

brigid at Feminists With FSD: On the FSD hierarchy and why it hurts all of us

A lot of support groups, both on and off the web do not want to recognize women with conditions such as endo as legitimate cases of fsd. We don’t have vulvodynia, vulvular vestibulitis, or vaginismus so we couldn’t possibly go through the same things as women with those conditions. I’m here to change that misconception.

Michael Janger at Abled Body: Web Content Accessibility Law Needs More Brawn

However, the newly accessible video content is only the tip of the iceberg. The major broadcast and cable networks that are covered under the new law produce about 100,000 hours of video content a year from their TV programs. On YouTube — which is not covered by the new law — almost 13 million hours of video content are uploaded annually, and that number is increasing. Over 99% of this Web-exclusive content is not closed-captioned or video-described, nor will it be required to be, under the new law.

Flash Bistrow at Where’s the Benefit?: DLA and work? Who is confused here?

The government has already said that the new medical test is intended to reduce the number of DLA claimants by 20%. But I am not sure how taking benefit from 1 in 5 people will “reduce dependency” (on what?) and “promote work” – indeed, several of the people quoted in my previous article about DLA would have to stop working if they lost that benefit, because they do not have enough energy or capacity to both care for themselves AND go to work. If the government think that turfing disabled people off DLA will suddenly give them the capacity to work, they are very much mistaken. It will just disable them even further.

Sam Roe and Jared S. Hopkins for the Los Angeles Times and Chicago Tribune: The final hours of Jeremiah Clark (major trigger warning for discussion/descriptions of abuse and neglect)

Jeremiah is among 13 children and young adults at the North Side facility whose deaths have led to state citations since 2000, a Tribune investigation has found. Some of these deaths, records show, might have been prevented had officials at the facility taken basic steps, such as closely monitoring residents and their medical equipment.

If you’re on Delicious, feel free to tag entries ‘disfem’ or ‘disfeminists,’ or ‘for:feminists’ to bring them to our attention! Link recommendations can also be emailed to recreading at disabledfeminists dot com. Please note if you would like to be credited, and under what name/site.

2 Comments

  1. The Slate article is particularly interesting seeing as there is a crowdsourced resource for vulvodynia, CureTogether… they are working on crowdsourcing information for more than vulvodynia now, there are many more conditions listed on the site.

    As for the quality of the information therein though – well, it’s complied much like anecdotes… some of the submitted ideas are redundant too.

  2. As a trans woman you have no idea how much we, as a community, crowd source our medical knowledge. The fact of the matter is that, for our community, the medical professionals out there, with the exception of a handful, are woefully uninformed or misinformed regarding our medical care!

    That, and the fact that many in our community self-medicate because prejudice in the medical profession either makes medical care completely inaccessible where doctors simply won’t see you or, if it can be accessed, the care is demeaning or abusive.