11 April 2013

Torture is Not Treatment

The Autistic Self-Advocacy Network (ASAN) has created a petition calling on Gemino Healthcare to disassociate itself from the Judge Rotenberg Educational Center (JRC)

"In Gemino's own public statement, Director Rob Misener described the JRC as 'an important organization' providing a 'truly inspiring' 'level of dedication and care.' Mr. Misener also said that Gemino will 'look forward to supporting their mission into the future.'"  JRC uses such forms of "treatment" as, according to the petition, "painful electric shock at the push of a button. Hours of restraint and seclusion. Food and sleep deprivation."  These aren't new charges:  I've been hearing the same things from people who have worked there, people who know individuals who have been detained there, and advocates of humane care for people with disabilities for years.  I urge you to go read the petition and strongly consider signing.

If you do, however, you should be aware that, according to ASAN's Lydia Brown, "Gemino has taken the unusual step of blocking Change.org's server" in order to avoid receiving any information about people who have signed the petition.  "If you want Gemino's executives to hear our message," Brown continues, "navigate to the petition's home page and scroll down to the part containing the letter (immediately after the links to JRC related information). Copy and paste the petition letter into an email to all of the following recipients: tom.schneider@gemino.com, mike.gervais@gemino.com, mark.roscioli@gemino.com, rob.misener@gemino.com, stacy.allen@gemino.com, joni.akins@gemino.com
That way, your email will land directly into the inboxes of the decision-makers. Let them hear the voice of our community! Torture is absolutely unacceptable and is most definitely not healthcare."

If you're not familiar with JRC and would like to know more, here is a description of its history by founder Matthew Israel, a student and follower of the behaviorist B.F. Skinner, and here is some information from opponents.  There's plenty more information online.

In my opinion, JRC should be shut down.  It trades on aversive conditioning -- punishing the people who are sent there for what are seen as negative behaviors -- and it does so in ways that would never be considered acceptable for anyone other than the most devalued, dehumanized people.  I don't think "torture" is too strong a word to use, and if prisoners at Abu Ghraib had been subjected to the kind of treatment many people at JRC are enduring, that would have been one more thing that horrified the world.  And there are more humane ways to work with people who behave in profoundly challenging ways.  As a result, I signed the petition as soon as I became aware of it, and I hope that other disability rights activists and advocates will, too.




30 October 2012

John Franklin Stephens on the R word.

In case anyone hasn't seen it yet, Mr. Stephens' "An Open Letter to Ann Coulter" is well worth reading.  Far more so than anything I have ever read of Ann Coulter's. 

14 July 2011

Insignificant Harm

Suppose that, when you were about 20 years old, you had been given the chance to go on the best, most awesome Spring Break experience that you can imagine -- whatever that would have been for you.  A week away from all responsibilities and any annoying supervision that you may have been subjected to.

And now imagine that you were not allowed to go home for a year.  That your family could visit you, but that you had to stay there in whatever paradise your imagination has conjured up.  That your family fought and fought for you to be returned to them but that it took a year for them to do it.

This might be distressing to you;  don't you agree?  It might be distressing to your family.

Do you think you might suffer "significant long-term harm"?

Thanks to Colin Revell, I've just read the story of Steven Neary, an "autistic man" "who also has a severe learning disability",* according to Caroline Davies in The Guardian, who behaves in challenging ways, and who went into respite care at the end of 2009 for a few weeks because his father, Mark Neary, with whom he lived, needed a break.  Local authorities, citing his behavior and the fact that he is overweight, then kept him there for "about a year" -- planning to keep him longer and to place him farther away -- with his father fighting for his release the whole time, before a judge had him released.  Mr. Neary now receives support to live in his own home.

"Though he was 'necessarily critical' of [the local council], said the judge, everybody concerned 'genuinely wanted to do the right thing', and problems arose 'from misjudgment, not from lack of commitment', according to Davies' article.  In addition, "The 21-year-old suffered no significant long-term harm, added the judge, although the events were distressing for him and his father." 


I find it very hard to believe that someone institutionalized for a year has suffered no significant long-term harm, and I don't think the judge would have believed so either if Mr. Neary had been nondisabled.  And that's even if the care unit was a good one.  I'm also tired of hearing that nondisabled people's good intentions (or alleged good intentions) mitigate in any way the harm they inflict on disabled people.  So while I am glad that the judge did the right thing and let Mr. Neary go home, I am frustrated by Ms. Davies' account of his response to the problem. 
I will give the judge credit for getting one thing right:  Ms. Davies quotes him as saying that Mark Neary "could be 'proud of the way in which he has stood up for his son's interests'."  I wish I had had a parent like that when I was 20.

*Note that while in the US "learning disability" generally refers to a specific impairment like dyslexia, in the UK it refers to more global intellectual impairment.

15 April 2010

See what I'm saying

I just got an email about the documentary See What I'm Saying.  It's about four deaf entertainers.  (Yes, that's a little "d" -- the website uses little-d "deaf" in many places where I would have expected capital-D "Deaf", even when talking about one performer they describe as being hard-of-hearing and not a native signer and the fact that she's been told that she's "not deaf enough.")

According to the press materials on the website, the film follows "Bob [Hiltermann], a drummer in the world's only deaf rock band" -- That seems like a pretty bold claim.  There aren't any deaf teenagers anywhere who have a band?  How could you possibly know that?  Presumably they mean the only professional band, which is quite possible.  But anyway -- "Beethoven's Nightmare, produces the largest show in the band's 30 year history;  CJ [Jones], a hugely famous and internationally renowned comic in the Deaf world, but virtually unknown to hearing audiences, fights to cross over to the mainstream by producing the first international sign language theatre festival in Los Angeles;  Robert [DeMayo], a brilliant actor who teaches at Juilliard, struggles to survive when he becomes homeless while living with HIV;  and TL [Forsberg], a hard of hearing singer finds herself caught between the hearing and deaf communities when she attracts her first major producer to record her first CD 'Not Deaf Enough'."

Something that caught my attention as I read through the material is the claim that this is "the first open-captioned commercial film in American history."  (I'm assuming they mean the first one in English, and I'm taking that claim at face value, because I am too lazy to try to verify it.)  Compare that, for example, to Touch the Sound, a documentary about a deaf percussionist that was not open captioned in theaters.  And it caught my attention for very selfish reasons:  I do okay with uncaptioned DVDs because I'm willing to back up and watch scenes over and over, but watching movies in a theater is frustrating at best, and missing auditory information is a big part of that. 

My city doesn't show up on the list of screenings, but I signed onto an email list to be notified if it does.  Whether it does or not, I hope it ends up being released on DVD -- that's still my preferred method of movie-watching.

18 March 2010

Not absurd in the least.

This really pisses me off.

In a column at The Detroit News (if I'm looking at the right link it's no longer available for free there, but it has been reproduced elsewhere if you want to google it) called "Does DPS's leader's writing send wrong message?" Laura Berman discusses Otis Mathis, Detroit's school board president.  Later, she asks, "[I]s he an example of the system's worst failings -- a disinterested student who always found ways to graduate, even when he didn't meet the requirements -- likely to perpetuate lax academic standards ...?"  And finally, "'Instead of telling them that they can't write and won't be anything, I show that cannot stop you,' Mathis says. 'If Detroit Public Schools can allow kids to dream, with whatever weakness they have, that's something. ...It's not about what you don't have. It's what you can do.' Because of his struggles and perseverance, Mathis describes himself as a role model. But is he?"

Although this is never stated explicitly in the article (there is a hint), Mathis identifies as a person with a learning disability.  Berman reports that he has some difficulty with reading -- he says that he might need to read something two or three times but that he can not only master, but memorize, what he reads -- and he writes pretty badly (she quotes a couple of sentences from emails he's sent).  Even so, he graduated from high school in 1973, before IDEA, and attended Wayne State after a stint in the Navy.  He didn't graduate until 2007, though, when the school dropped an English proficiency exam as a requirement for graduation.  Berman reports that he challenged the test in a lawsuit that went to trial in 1992, but presumably he lost.

Berman asks, "Is it absurd for a man who cannot write a simple English sentence to serve as the board president? Or to lead the elected board of a district that ranks at the nation's bottom for literacy?"

My answer is:  of course not.  Not being able to "write a simple English sentence" is not the same as being uneducated, as being unable to understand the problems confronting public education, or as being a poor leader.  Even if Otis Mathis in particular ought not to be Detroit's school board president (although Berman doesn't come up with any other reasons besides a certain kind of cognitive impairment that he shouldn't), there's no reason that someone like him shouldn't.

Moreover, a school system that writes people impairments off as inherently unable to assume the top roles -- at a time when we know how to educate students with those impairments to the same levels as nondisabled students -- has no business educating such people, and a public school system that has no business educating a category of children is a public school system that needs to be fixed.

Berman seems to think that having a school board president who cannot write grammatically correctly may encourage students to believe that they don't have to learn to communicate well in writing either.  I think she's got a small point here:  I do think you can consider producing well-written official documents to be an essential part of being a school board member, I do think that when well-official documents need to be created it may become necessary for a school board member responsible for drafting them to use an editor (paid for by the school board) when necessary in order to ensure that they are well-written, and I do think that a public school system should make it clear to students that if they want to succeed in jobs that involve writing they will have to be able to write well, with or without reasonable accommodation.  But the fact that the "lousy writing" quotes in the column come from emails and not official documents does kind of make you wonder whether any necessary accommodation is already being used.  Moreover, as Berman acknowledges that Mathis and his supporters point out, Otis Mathis probably understands much better than Laura Berman does -- or I do, or anyone who picked up much of written English by reading and writing it does -- what disadvantages people who cannot write well face in today's world.  And her suggestion that someone with an impairment that makes learning to write grammatically correct sentences and paragraphs and passages difficult to impossible is "disinterested" is the most absurd idea in the entire piece:  it shouldn't take much thought to realize that someone who makes it through high school and college despite an impairment causing the "3 Rs" to be a major stumbling block for him demonstrates a lot more interest than a nondisabled person who is otherwise similar needs.

And you know what?  This long after Section 504, IDEA, and ADA, a columnist writing about education really ought to understand the disability rights perspective well enough to be able to address the obvious DR criticisms of her position.

15 March 2010

Woman turns down sex

and the man in whose home she works (it's not clear to me whether she works for him) tries to have her fired.

Story here.

The reason I'm posting it on this blog is that the man is disabled, the woman is a nurse, and she apparently witnessed other nurses having sex with him.  When she refused, he claimed she was "unfit" to continue working in his home.

A (the? her?) nurses' union is starting a campaign called "I Draw The Line Here," against the expectation that patients should be able to demand sex from nurses, saying that "This type of action is not part of the job responsibilities of carers and nurses."

11 March 2010

David Askew "tormented to death"

Here is a link to a story in The Guardian about David Askew, a 64-year-old man from the UK identified as having "learning difficulties", who has been found dead.  Neighbors report that on an ongoing basis, with younger kids joining in as they got old enough, people who were "about 18 or 19 years old" would bother him.  He would either yell at them or give them money and cigarettes to go away.  Adults in the area gave up on calling the police because it was ineffectual.