Tuesday, 29 April 2014

Judge Rotenberg Center Should Have Shocks Banned - FDA Panel

Thursday, April 24, was a day that I'd been waiting for that day for a long time. An FDA advisory panel finally got to thoroughly hear both sides of the story of what goes on at the Judge Rotenberg Center, and to deliberate, based on testimony, whether what happens to the students there needs to be stopped.

And they made the right decision. I just hope that they act on it quickly.

Regular readers may remember that the Judge Rotenberg Center has come up a number of times in this blog, usually in posts talking about terrible ways in which disabled people still get treated by society. It got its first mention in its own blog post, in 2012. I remember reading the article prompting it and thinking, "For the love of all that's holy...these people give autistic children electrical shocks and call it "treatment?"

"Why hasn't someone done something about this?"

Judge Rotenberg Centre Faces the FDA

Although disturbing accounts of use of four-point restraint boards, isolation, and food deprivation as discipline techniques have from former Judge Rotenberg Center students, most of the controversy around Judge Rotenberg Center revolves around the use of their Graduated Electronic Decelerators to deliver aversive shock therapy. Aversive shocks, unlike the electroshock therapy used to treat mental conditions like severe depression, are delivered to the skin. A statement from the Judge Rotenberg Center said that the two-second shock, usually delivered to the arms or legs, "feels like a hard pinch but is otherwise harmless and has no side effects."

Former students, however, have told a different story. One former student described the shocks as feeling like "a thousand bees stinging you in the same place for a few seconds." Another described flashbacks and nightmares that she has about the shock treatment. The report I linked to at the beginning of this section contains many more accounts of the physical and emotional trauma that the aversive shock therapy has caused.

Gregory Miller, a former teacher's assistant at Judge Rotenberg Center, left because because of the pain his students were in. The Judge Rotenberg Center received FDA permission in the 1990s to use the GEDs,  but, according to Miller, at least one of the machines, the GED-4, was not FDA-approved. Media accounts (see here and here) support this. The GEDs at the Judge Rotenberg Center are illegally modified to deliver shocks up to three times greater than the FDA-approved limit. The FDA sent them a warning letter about this in 2012.

Had he known that units at Judge Rotenberg Center weren't FDA-approved, Miller says, he would not have used them on students, despite the treatment plans calling for their use. Lydia Brown has Miller's letter to the FDA posted on her blog, with his permission (she suggests first reading this letter, from a former Judge Rotenberg Center student, also posted with permission.) Both letters are very difficult to read, but show the disturbing scope of what's going on behind the walls of this "school".

Judge Rotenberg Center: The Supporters Speak Up

Supporters of aversive shock therapy, currently available in no other US facility but Judge Rotenberg Center, have said that it's helped where all other treatments have failed. Parents testified about children in great distress, constantly engaging in self-injurious behaviours like headbanging and eye-gouging, how medicines weren't working, how restraint was no longer an option. The Judge Rotenberg Center said in a statement:
"Without the treatment program at JRC, these children and adults would be condemned to lives of pain by self-inflicted mutilation, psychotropic drugs, isolation, restraint and institutionalization — or even death,"

But  I tend to agree with Margaret Nygren on this one.  The Executive Director for the American Association on Intellectual and Developmental Disabilities told CBS in an interview that studies have shown that the aversive shocks aren't going to help in the long run. As soon as the negative reinforcement is removed, the behaviour returns.  Given everything that we know now about the intense frustration involved with not being able to communicate needs as simple as "I'm hungry" or "I'm in pain", there's no reason to continue a practice that, more and more, is being shown that it causes more harm than good and that doesn't work in the long run anyway (see this article for more explanation).  As Nygren explains, we have to concentrate on getting to the root causes of behaviours, concentrate on communicating more effectively, and provide those that can't communicate using in ways that we've traditionally been able to understand ways of effectively doing so.

It's more work than using a GED. But I'd hope that people educating disabled children would want to do the work. I'd hope that people who said that they had children's best interests at heart would not *want* to torture them.

Besides, there's shocking students who are putting themselves and others in danger for when nothing else (apparently) works, and then there's this:
"But the student told the FDA he received shocks "for things like noncompliance with staff direction, talking too much and being disruptive in class."

Other former students testified that they also were shocked for minor transgressions. That's not about keeping people safe. Cheryl McCollins, whose son Andre was shocked 31 times in the course of 7 hours, at Judge Rottenberg Center, at first for just refusing to take off his coat, said it best: "This is not about therapy. This about control, abuse and torture."

Bottom line? Find another job if you think that giving electrical shocks in the face of "noncompliance" is acceptable, because you don't belong in one where you have any access to children or members of other vulnerable groups.

Judge Rotenberg Center: Why Has This Been Allowed to Continue?

I clearly remember from my research methods classes that I took for my Psychology degree and the Behaviour Management classes that I took for my Developmental Services Worker certification that there are some things that you just don't do, in the name of either, to humans (or animals, for that matter). I doubt that most ethics boards would let you get away with research involving shocking most animals, let alone humans, to see how it made them behave, not in this day and age. Judge Rotenberg Center has even admitted that they can't test the GEDs as much as they'd like because of ethical concerns. So there are no ethical concerns with using equipment that hasn't been tested as fully as they'd like on children and youth that, in some cases, can't even clearly communicate how they feel about what's being done to them? L.A. Markham discusses some of the other implications of this position in her article about the Judge Rotenberg Center.

This may have started off with the best of intentions, but it's gotten seriously out of hand, under the watch of people who are supposed to be looking out for the best interest of the students at Judge Rotenberg Centre in particular, but also the safety and human rights of children in general, and despite the efforts of politicians like Massachusetts Governor Deval Patrick and Senators Brian Joyce and Tom Sannicandro. Even the UN has weighed in, declaring the use of the GEDs torture.  And yet, use of the GEDs still hasn't been outright banned.

Why not? If non-disabled kids in a public school were being shocked into submission, people would (rightly) raise ten kinds of hell. You can count on it.

The only reason that I can think of for why this abuse has gone on for so long is that these are disabled kids and, and that when people hear that receiving an electrical shock is the "only way" to get a disabled child to behave, they accept it as a reality that can't and shouldn't be questioned. A sad reality, yes. But just the way it is, the way that people used to think that disabled people belonged in institutions because "that's just the way it is." And *that* idea really scares me, because it tells me that society hasn't changed its view of developmentally disabled people all that much since those days. It's easy to understand why Goodwill got away with paying disabled people pennies an hour to work for so long, considering that a school that purports to be devoted to the well-being of disabled children thinks that electrical shock as a behaviour management tool is acceptable.

As I said, the advisory panel made the right decision. They will recommend to the FDA that the GEDs be banned.

Let's hope that everyone involved here does the right thing and makes it a reality.

FDA Summary of the April 24 Hearing

Greg Miller's Petition to Make Aversive Shocks Illegal - Please sign!

Tuesday, 15 April 2014

Thoughts on Disney's Disability Access Service Card (Or, Why itSometimes Sucks to Be Disabled)

In the last post that I wrote about Disney's new Disability Access Service Card, I said that it was receiving, at best, mixed reviews. Well, the chickens have come home to roost on that. Sixteen families of children and youth with developmental disabilities (including autistic children) are now suing Disney on the grounds that the new Disability Access Service Card regulations aren't ADA-compliant.  And I don't think that there's really much to say about this except that sometimes, as positive as I try to stay about my situation, it really does suck to be disabled. I think it must especially suck for children.

The Disability Access Service Card: The Complaints

I thought hard about what I wanted to say about this. It's a tough situation.

The Disability Access Service Card's older equivalent allowed families with members who were unable, due to disability, to handle waiting in line the option to move to the front of the ride lines. It was being abused, however, by families that hired a disabled person to accompany them to Disney parks in order to avoid waiting in line. The current Disability Access Service Card lets families schedule a time to go on a ride, depending on current wait times, so that they don't have to physically stand in line. However, they can only have a return time to one ride scheduled at a time, and the disabled person must be with the group in order for everyone to ride.

For autistic children especially, the Disability Access Service Card has been causing more issues than it solves. Disabilityscoop.com outlines why some of the parents involved in the lawsuit have found the Disability Access Service Card policies especially problematic:
In the suit, a mother known as M.B. alleges that she waited in line for an hour and a half to receive a Disability Access Service Card for her 6-year-old with autism who is referred to in court documents as A.B. Even though she offered park officials medical documentation about her child’s inability to tolerate waits, the mother says she was given no choice but to schedule a return time at “It’s a Small World” which A.B. wanted to ride repeatedly. After riding twice, A.B. faced another hour-and-fifteen-minute wait and entered a “full-fledged meltdown,” the lawsuit alleges.

In a separate case, the suit indicates that a mother known as L.C. tried to take her 7-year-old with autism, referred to as J.C., to Disney World several times since the new policy took effect. L.C. said her child has had multiple meltdowns after learning of wait times to ride “Peter Pan” and “Winnie the Pooh,” with J.C. falling to the ground or jumping up and down with arms spinning around. As a result, L.C. is no longer taking her child to Disney parks and does not plan to renew the family’s annual passes.

As always, the comments on the article on telling. Some parents whole-heartedly support the lawsuit, and tell their own stories of how Disney's Disability Access Service Card is doing exactly the opposite of what it's supposed to be doing. Others talk about how Disney couldn't do enough to accommodate the needs of their disabled child. And others talk about how parents who expect that their disabled children should always be able to go to the front of the line don't want equality, but special treatment.

I addressed the last concern when I last blogged about the Disability Access Service Card, when I talked about how equality doesn't always mean that everyone gets treated the same way...it means that everyone gets equal access to what they need to be successful. And if "success" is a fun day for a disabled child with a minimum amount of stress for them, and decreased time in line is something that's needed for that to happen, then there should be a way to facilitate that. I think that parents were hoping that the Disability Access Service Card was still going to allow them to avoid problematic line-ups.

I do see where other parents are coming from as well, though. The list of developmental disabilities that could potentially cause difficult-to-manage behaviours that might be exacerbated by the limitations of the Disability Access Service Card is quite long, depending on how a disability manifests in a given child at a given time: Attention Deficit Disorder, Fetal Alcohol Syndrome, Oppositional Defiant Disorder (lots of "disorder" talk there, please excuse me; diagnostic language is bad for this), plus any number of mental conditions, none of which are a child's fault. But when there are a whole whack of kids who (legitimately) *always* get to go to the front of the line, there are also always a whole whack of kids who are also going to always have to wait longer.

Is that the disabled kids' problem? No. Their needs are not their fault. But it's not also particularly fair to non-disabled kids and their families, either.

There really is no easy way to make things fair for both groups, and I think that the Disability Access Service Card does represent efforts on Disney's part to level the playing field for everyone. What they've come up with one this first shot at the Disability Access Service Card probably isn't the best answer.

But this *is* just the first shot.

The Disability Access Service Card: Things to Consider

Which I know means very little if you're in the group that's actually being affected by all this. The unfortunate thing for these disabled children, who deserve a wonderful day at Disney World or Disneyland just as much as any other child, is that we're still at a period in history where we're learning about disability rights, accessibility, and accommodation by seeing what hasn't worked in the very recent past and improving on it using a body of knowledge that's still very much in development. It wasn't so long ago that society thought the "right thing" to do with disabled children was to tell their parents, "Put them in an institution and forget about them", and in some respects we still haven't come very far. We learn as we go along, and while it would be awesome to be able to perceive an issue, snap our fingers, and say, "Hey, taken care of! Attitudes altered, policies changed, loose ends tucked up, all neat and tidy!", it doesn't work that way.

It takes time, and dialogue, and a step forward and two steps back. And sometimes an infinite amount of patience. And I believe that it really does take the assumption of good intentions. Maybe not every employee at every Disney park is perfectly modelling attitudes of inclusiveness and accommodation (and when discrimination happens, people need to report it, and Disney needs to build trust with its customer base by dealing with it in a timely and appropriate manner), but I don't believe, as these lawsuits allege, that there's a plot afoot within the Disney corporation to purge the parks of autistic children. If I did, then I'd be calling for a very different discussion, and probably paying very little attention to this Disability Access Service Card.

(And if disabled children were being abused or dying at the hands of Disney in their parks, then everything that I said about having to live with the fact that this process taking time and patience and the assumption of good intentions goes out the window. But that's not what's happening here, thank God.)

I concede that it's possible that Disney is being run by heinously ableist people. I've never seen any conclusive evidence of that, and don't figure that the public ever would, should it be the case - the people that run Disney are simply too business-savvy to let the corporation be seen in that light.  Disney doesn't like negative press, including people who talk about being discriminated on the basis on disability in the theme parks. I think that Disney will refine the Disability Access Service Card as it learns what does and doesn't work, despite its stance on the lawsuit that it's already fully complying with ADA regulations. Politicians may not be aware that disabled people want to travel, and will return to places that accommodate their needs and make them feel welcome, but you can bet that the head people at Disney are aware of it. They can't afford not to be.

Again, cold comfort to the people who have to put up with an organization with lots of money and resources just "learning as it goes".

The Disability Access Card: Sometimes Disability Sucks

I like to stay positive, and I don't say things like, "Disability sucks" very often. But yeah, it does suck that disabled children leave Disney World and Disney Land having had a bad experience, just because true inclusion is a goal that even huge companies with lots of money still struggle to reach...or often even understand. That'd be a hard thing for any kid to understand. How does a parent explain to a child, "They couldn't handle your needs very well, so we may go somewhere else for vacation from now on, or maybe we'll go when you're a bit older..." when Disney World is the only place that child wants to go?

I'm not a parent who's been hoping, hoping, hoping that Disney World was going to be the place where I could have a family vacation, complete with my disabled child. I could see how it would be...very difficult.

The bright side is that, as far as I know, a whole lot of people have survived without ever visiting  a Disney theme park, or only going once. I only went once. It was cold, colder than the Toronto climate that we'd left. My parents hated Florida and vowed never to go back. My sister and I turned out just fine. (Well, arguably fine. Mostly fine, I think).

An easy decision for my parents...maybe not so easy for these parents that are suing. Again, I don't presume to know.

There are just lots of things to consider here before jumping to lawsuit territory, I believe. The money spent on a trial could buy a lot of kick-ass vacation in places that are very committed to accessibility and to making sure that guests of all ages can participate in all activities.  (Check out the website for Hasquila Amazon Lodge...jungle fun in the only accessible lodge in Ecuador!)

As usual, there are no easy answers. I don't know why I expected that there would be.

Thursday, 3 April 2014

Thoughts About Disability Awareness Days

So, a disability awareness day came and went this week: World Autism Awareness Day, on April 2.  My Facebook feed was lit up with pictures of city landmarks bathed in blue light, and autism-themed memes, and pictures of friends' autistic loved ones.

I didn't write anything this year, or post anything on the Facebook page, or even tweet anything, as I have in past years. The first year I had this blog up, I think I wrote a post for *every* disability awareness day...or week...or month. On Autism Awareness Day this year, I had a terrible headache and was just trying to get through the day, or I probably would have at least put something on my Twitter feed and the Facebook page.

But I don't think I would have written a blog post.

Call me cynical, but disability awareness days in general are starting to leave me a little cold.

Disability Awareness Days Preach to the Converted

It's not that I don't think that disability awareness days in general are a good idea, and it's always effective, particularly on social media, to see large numbers of people posting in support of something. But I think that people have become remarkably good at tuning out what isn't personally relevant to them (even if it's all over social media campaigns or right in front of their face, like the CN Tower being lit blue) and if autism is something personally relevant to them, chances are that they've already investigated it.

With one exception, which I'll talk about in a moment, the people that posted, and liked, the autism awareness messages on my Facebook feed were people with autistic loved ones. I've seen the same thing happen for Down Syndrome Awareness Day, a variety of stroke awareness days, and other disability awareness days. It all feels very within-community and insular.

Disability Awareness Days Are One Day a Year

In addition, the "like", "share", and "retweet" ease of social media, combined with the one-day-a-year focus of disability awareness days encourages a passive, shallow activism in those that want to support a cause, but don't really want to *do* anything.

I know very few of these people, by the way. The disability activists that I know and admire are utilizing social media to augment and draw attention to activist action in the offline world that frequently leaves me amazed. Their efforts make my own look utterly insignificant. I'd call them out by name, but they'd be embarrassed.

I'm talking about people that "like" something that goes by on their Facebook feed because it makes them look like they're a socially responsible person, and then don't give another thought. I used to be one of them about international news when I was in university. Someone would ask me, "Isn't it terrible what's happening in...?" and, wanting to appear socially aware and worldly, I'd emphatically agree, having no idea what they were talking about.

I wonder now if those people were actually onto me, and thought, "So what are you going to do about it?", the way I think sometimes when I see a lot of likes and comments on a disability awareness day post. I think it's a question that we all need to ask ourselves, as disability advocates, to keep ourselves honest.

When a disability awareness day is over, what are we going to do about it? Forget about it for another year? Or work to keep awareness up all year and positive change happening?

I'm not saying that everyone who supports a disability awareness day has to become a warrior for that cause. The exception on my Facebook feed that I mentioned earlier, which I really liked, was a picture that a friend had shared of two autistic young people in her church (presumably with their permission). She simply said that she wanted to show support on Autism Awareness Day for two young autistic people that she was really enjoying getting to know.

That simple, positive message, that autistic people contribute to relationships, is a very powerful disability awareness day message.

Speaking of messaging...

The good thing about disability awareness days is that they're a chance to send a powerful, concentrated message to society about disabilities. And the bad thing about disability awareness days is that they're a chance to send a powerful, concentrated message to society about disabilities. If the message is slanted toward the medical model's stance that disability is biological and and a "sickness" that needs curing, that has implications for what the disability rights movement is trying to achieve. It's so easy to set ourselves back, practically without realizing it.

And if people dispute that medical model rhetoric is still out there, or that we need to examine whether the language of disability awareness days contributes (as we should be examining whether the rhetoric of all information sources about disabilities contributes to negative ideas about disability and how disabled people are treated), consider the following:

  • Concerns about low quality of life sometimes prompt doctors to counsel mothers to abort a fetus with Down Syndrome. Also consider the case of AWA, a man with Down Syndrome given a DNR order in a UK hospital that neither he or his family even knew about, let alone consented to.

  • The story of Amelia Rivera, initially denied an organ transplant because of intellectual disability. See also the story of Paul Korby.

  • The cure-slanted rhetoric of organizations such as Autism Speaks. See "I Will Not Light It Up Blue" by Michelle Sutton for a commentary on this as it relates to Autism Awareness Day.

Words are powerful. We need to remember this. We need to make sure that we're getting the message across that we want to on disability awareness days.

Do I believe That We Need to Do Away with Disability Awareness Days?

No, not necessarily.

Not at this moment, anyway.

I don't think that, as a tool for engagement with the wider the community, they're all that effective, but that they can be one part of a strategy for engagement with the wider community to raise awareness of a given disability.  We're not at that point where people are so familiar with disabilities and the idea that disabled people have more in common with non-disabled people than they do ways in which they differ that we can do away with days that remind people of that...but maybe we need to ask ourselves whether disability awareness days are contributing constructively to getting that message across and, if they're not, how they better do that.

But I think the goal should be to not have a need for them. It'd be nice to live in a world where we all just recognized that people are different and have different needs, and not have to pathologize that to guide interactions (as in, "He has autism, so I will interact with him this way...")

Idealistic, yes. But you have to have a dream. :)

World Autism Day kicks off Autism Awareness Month in many countries. What are your thoughts on disability awareness days? Months? Days versus months?