Introducing “Life Support” – a blog by Laura Hershey (and a tribute to Barb Knowlen)

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Last month, friend and colleague Laura Hershey started a new blog hosted on the website of the Christopher & Dana Reeve Foundation titled “Life Support.”  Laura is a (quoting from her website) “writer, poet, activist, consultant.”  She is also a board member of Not Dead Yet and a friend.  She will be posting bimonthly.

Her latest entry is related to a recent one here.  Laura has posted a blog entry titled “Remembering Two More Heroes.”  She opens with the news of the death of Paul Longmore, and provides links to tributes and information about his life.

The bulk of her blog is given over to a tribute to Barb Knowlen, a long-time activist and advocate who died in late July.  As Laura notes, very little attention has been paid to her passing.

As I mentioned in my earlier post on Barb Knowlen, I knew her work, but had never met Barb at all.  Laura has intimate knowledge of Barb Knowlen’s work and the impact it had on people.

If you really want to know about the impact Barb Knowlen had on people’s lives – working to that end until shortly before her death – then you should really go read Laura Hershey’s latest blog entry.  You might want to bookmark the blog itself while you’re at it.  Blogs that are hosted on websites don’t always show up google news feeds reliably – just go check it yourself once a week or sign up to subscribe to the rss feed.  –Stephen Drake

NDY Attorney Anne Studholme discusses Betancourt Ruling on WHYY

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I just received this in my news feed.  Taunya English at WHYY aired a piece on the Appellate Court Ruling on Betancourt v. Trinitas.  The case involved the effort of Trinitas Regional Medical Center in New Jersey to remove treatment from a patient over the objections of the family.  Having lost in a trial court, Trinitas – with support from other medical organizations – sought to have the trial court’s ruling overturned.  Since the court ruled the case moot due to the death of the patient, the trial court ruling stands.

Anne’s comments are at the end of the piece.  Comments from family attorney Todd Drayton are included, as well as remarks from Thaddeus Pope.

Anne Studholme’s comments:

Attorney Anne Studholme represents a coalition of disability rights organizations led by Not Dead Yet. In the appeal case, she argued on behalf of the group as a friend of the court.

Studholme: People with disabilities are quite sensitive to the sort of thinking which says, ‘Well, I wouldn’t want to live that way, therefore, he must not want to live that way.’ A lot of people say: Just try living that way for a while. You might find you prefer to live.

 Read the entire story here.

Just in: According to Thaddeus Pope, there is one article that reports the hospital hasn’t ruled out an appeal.

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Another loss: Barbara Knowlen 1941-2010

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I never had direct contact with Barb Knowlen, but I’ve appreciated her work as I’ve come across it in in film and in the disability press.  I also appreciated the posters from her “Barrier Breakers” that I encountered on the doors and walls of friends in the disability community.  Many more knew her through her work in helping disabled people live above the poverty level without losing their Medicaid coverage and other benefits.

On her facebook page, which is now a memorial page, she described her work this way under “employment”:

Self Employed – assist people with disabilities in Social Security issues; write Plans for Achieving Self Support, most people I never meet, work over internet

You can get a better feel for what that assistance consisted of by visiting the archived copy of the “Barrier Breakers” website at the Internet Archive.  Make sure to check out the posters that they used to offer.

For more about and/or by Barb Knowlen, check out:

When Billy Broke His Head – and other tales of wonder: Award-winning documentary by Billy Golfus, which Golfus says “ain’t exactly your inspirational cripple story.”

Maximizing Your Benefits was published in 2001 in New Mobility.

Finally, Mouth Magazine has a story by Barb Knowlen online that touches on concerns related to Not Dead Yet.  The story talks about the fears that many disabled people have about doctors – who don’t value them, who won’t listen to them, and are too ignorant and arrogant to realize they could kill some of us through this combination of factors.  In her case, it resulted in a very scary brush with a potentially lethal set of avoidable complications in the hospital:

PHYSICIANS ARE APPROXIMATELY 9.000 TIMES MORE DANGEROUS THAN GUN OWNERS.

Statistical proof: There are 80 million gun owners in the U.S., and 1,500 accidental gun deaths per year. There are 700,000 physicians in the U.S. who cause 120,000 accidental deaths each year.

It looks to this mathematician like doctors are approximately 9,000 times more dangerous than gun owners!

And who are they most dangerous to? Us, of course. People with disabilities, people who depend on medications, treatments, supplies, and attendant services just to survive — all of which have to be prescribed through a doctor.

Factor this in, too: people with disabilities get sick more often, and get a lot sicker than, people who are not disabled. And have less money to buy the best specialists, the most reputable doctors.

Too many of us don’t take the threat of dangerous doctors seriously. I didn’t.

I am a disability rights activist, with two decades in the independent living movement. I believed, preached, and lived the conviction that our lives cannot be defined by medical issues, that we cannot be controlled by doctors. I still do. But now I know how easily doctors can kill us.

Read the rest of Dr. Danger here.

The one consolation of losing vital people in our community is that they all leave us so much to remember them by.  –Stephen Drake

My thanks to Laura Hershey for informing friends on Facebook of Barb Knowlen’s death and to Maria ‘Ria’ Strong for looking up the “Barrier Breakers” site on the Internet Archive.

Two More Tributes to Paul Longmore

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The Los Angeles Times published a long obituary in the Sunday (August 15) edition of the paper.  Here are the first three paragraphs of the obit:

Unable to use his hands because of a childhood bout with polio, Paul K. Longmore wrote his first book by punching a keyboard with a pen he held in his mouth. It took him 10 years, and when he was done, he burned a copy in front of the Federal Building downtown.

By taking a match to “The Invention of George Washington” in 1988, the scholar brought national attention to a campaign to reform Social Security policies that discourage disabled professionals from working.

Some of the most restrictive penalties were soon lifted — including one preventing him from earning royalties on books — in a policy change that became known as the Longmore Amendment.

And – appropriately – there is another long obituary in AHA Today – a publication of the American Historical Association.

I’m still working on putting together at least a few of Paul Longmore’s NDY-related writings for the blog.  It might take a bit since some things that were once online seem to have disappeared.  All that means is it will take me a little longer than I’d hoped.  –Stephen Drake

An additional – and more accessible – copy of the Betancourt ruling

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Leagle.com is a site that describes itself as “dedicated to making legal content and the knowledge contained therein more accessible and discoverable than ever before – anytime, anywhere, for anyone, through innovative, relevant web-based and mobile-media solutions.”

They seem to be serious about that.  I know there are quite a number of people who have trouble – or are unable – to access pdf documents.

Leagle.com has posted the Appellate Court ruling in Betancourt v. Trinitas  in standard html format.  It won’t print out looking the same as the published ruling, but the content is all there – easy to access and read.