Tag Archives | civil rights

UN Investigates Whether Torture is Happening at Judge Rotenberg Center

I clearly remember debates, as recently as since Obama’s come into power, Judge Rotenberg Centerabout whether the US uses torture to get information from suspected terrorists, and the ethical implications of doing so. It dominated the news for a while. Americans were really concerned about this question.

Why, I wonder, haven’t we been so concerned about the torture *definitely* going on (in my opinion) right under our noses at the Judge Rotenberg Center for children with autism?  I don’t know what else you call restraining a child face-down for seven hours for refusing to take off his coat and shocking him 31 times for tensing his body and yelling.

All Part of Judge Rotenberg Center’s Treatment Plan

This was part of Andre McCollins’ treatment plan. Even though it left him catatonic and put him in the hospital for nearly 6 weeks, Judge Rotenberg Center stood by it’s actions and fought against a bill that would prevent it from using aversive shock treatment.

The 2002 video that brought all this to light (which Judge Rotenberg Center fought to repress), was made available to the public in April. Some of the footage is here. Be warned that it is difficult to watch:

http://www.youtube.com/watch?v=UcQwsq-PKCg&feature=fvwrel

A US Senate Committee held a hearing into the aversive therapy used at the Judge Rotenberg Center, and the UN has been asked to rule on whether what’s happening at the Center is torture.

http://www.myfoxboston.com/story/18840703/2012/06/20/un-investigating-judge-rotenberg-centers-use-of-shocks

Judge Rotenberg’s reaction to this? The Parent Association said:

“We are outraged that these people would use our vulnerable children as pawns. The right to choose the appropriate and safe treatment for our children, when nothing else has worked, must remain an option for the small percentage of children for whom this is a matter of life or death,”

Judge Rotenberg’s response to all the attention it received from the 2002 video of Andre McCollins is here, for what it’s worth: http://www.judgerc.org/

And the government ultimately sided with them. The proposed shock ban was left out of the state budget, and the Judge Rotenberg Center can continue to use shock treatments for therapy.

Meet Me At Camera Three, Massachusetts Government

I’m sure that no one will be surprised that I call “bullshit” on all this. We treat our prisoners better than we’re treating these kids. Refusing to take off your coat is not a matter of life-or-death. Even if we lived in a world where you could justify shocking a kid because of that behaviour, you can’t justify retraining them for seven hours and shocking them 31 times. And I don’t really care that most children in treatment at the Judge Rotenberg Center don’t get shock therapy treatment. One child getting treated the way Andre McCollins did is one child too many.

Shame on you your endorsement of the continued abuse of children with disabilities. I hope that the UN says unequivocally that Judge Rotenberg Center is torturing these kids and shuts the place down. Shame on you too, administrators of Judge Rotenberg Center. I’d like to know how you sleep at night, knowing what goes on in your facility.

Okay, I’ll Stop Here

You get the point. Probably best to just stop here before I say something I really regret.

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The Medical Model of Disability and Civil Rights

Big thank you to William Peace over at http://badcripple.blogspot.ca/ for linking to and commenting on the National Disability Rights Network’s recently-released report, “Devaluing People with Disabilities”. I was not aware that the report was available, and I found it fascinating.civil rights I do worry, like William, that the people who read the report won’t be the ones that really need to read it, but I do like how thorough it is, how it frames the fight for disability rights as a civil rights issue, and that it uses the voices of self-advocates. Perhaps believers in the medical model of disability (especially people who support the use of the Ashley Treatment, discussed extensively in the report) will read it just out of curiosity, or a desire to justify what they believe, getting the report outside of the “preaching to the converted” circle.

“Devaluing People with Disabilities” uses the Ashley Treatment as a jumping-off point for discussion about disability rights as civil rights, illustrated specifically in the the ways in which the medical model of disability permeates ethics committees, hospitals and court systems.  Consequently, people with disabilities are, more often than anyone should be comfortable with, forced to undergo medical procedures (or have life-saving medical procedures, treatment, or even simple nutrition withheld) because of their disabilities.

The Ashley Treatment, the Medical Model, and Civil Rights

The Ashley Treatment refers to a number of surgeries and hormone treatments performed on a six-year-old girl with physical and intellectual disabilities back in 2006. Ashley’s parents, ostensibly to preserve her quality of life as much as possible, had her growth attentuated so that she’d always remain small. Doctors also gave her a hysterectomy and removed her breast buds, so that she’d not have to deal with menses or the sexualizing effect (minimizing, the parents said, her risk of being abused). The parents called Ashley their “pillow angel”, and justified their choices for her by saying that she didn’t have the cognitive capacity to recognize what had been done to her or what it meant she’d be missing.

The ultimate legal problem with the Ashley Treatment (and any medical treatment/lack of where parents, a doctor, or a court decides that a person is too “disabled” to make their own decisions about their bodies and what they choose to do/not do to them) is that it’s unconstitutional – hence the civil rights component.  It’s very much a civil rights issue, even though most people choose not to recognize it as one. There are cases, of course, where a person with a disability has a power of attorney for healthcare, but that’s very different than a doctor advising a family to remove nutrition when there’s no terminal disease, or not perform a life-saving surgery, because a person’s quality of life and prospect for “contribution to society” with their disabilities is so “low”.

The point is, we treat people with disabilities in very different ways when it comes to health care than we do people without disabilities. We would never think of violating the civil rights of a six-year-old without disabilities by removing the uterus and breast buds – why would one even consider such treatments? Yet, for one with disabilities, it was okay to alter her body in drastic and unnecessary ways, to deny her the chance to mature into a grown woman, and to take away her option to have children.

Kurt Decker, Executive Director of the National Disability Rights Network, puts it nicely in the introduction to “Devaluing People With Disabilities”:  “These conversations happen because the persons being considered are viewed as having little value as they are.  They are considered as not fully human, endowed with inalienable rights of liberty, privacy, and the right to be left alone – solely because they were born with a disability.”

If that’s not a civil rights issue, I don’t know what is.

Read “Devaluing People With Disabilities”, but be prepared – it will shock you. It should, at least.

http://www.disabilityrightswa.org/newsletter/drw-news/ashley-report-docs/Devaluing%20People%20with%20Disabilities%20final.pdf

William Peace’s thoughts on the report: http://www.blogger.com/comment.g?blogID=1556371561007953336&postID=1277439375401526973

More about the National Disability Rights Network: http://www.ndrn.org/

Image credit: cteconsulting / 123RF Stock Photo

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Canadian Charter of Rights and Freedoms Turns 30 This Week

I was reading Donna Thomson’s blog this week, and I stumbled across another reason why I’m proud to be a Canadian. Thomson, you may remember, is the author of “The Four Walls of My Freedom”, which I reviewed recently in this space http://www.girlwiththecane.com/the-four-walls-of-my-freedom/ .  This week she was in Ottawa to celebrate the 30th anniversary of the Canadian Charter of Rights and Freedoms.

Canadian Charter of Rights and Freedoms and Disability Rights

The 30th anniversary of anything, let alone such important legislation, is worth canadian charter of rights and freedomscelebrating. However, it’s worth noting that when the Canadian Charter of Rights and Freedoms was enacted, our politicians were processing some important information at the time. The world had just come off of the International Year of the Disabled Person in 1981. A Parliamentary Committee had produced Obstacles,  a very detailed report about the concerns of Canadians with disabilities. People who wanted disability rights included in the Charter made sure that disability issues were in the government’s face during the drafting process.

Government Fun

The government resisted – no other country in the world was doing this. It was “unchartered” territory (bad joke, yes).  Eventually, they made a compromise to the Committee: Protection to people with physical disabilities, but not mental disabilities.

As Sherri Torjman of the Caledon Institute of Social Policy writes in her blog:

“Members of the House of Commons Committee faced a serious crise de conscience.  They knew that this was a unique opportunity to ensure inclusion of disability in the Charter.  How many times in the course of history does a country renew its Constitution?  But they also knew that excluding mental disability from the Charter of Rights and Freedoms would make the Committee guilty of the very discrimination that its members were fighting to overcome.  The acceptance of physical disability alone would have been a hollow victory at best.”

The Committee refused the offer, and the government ended up backing down. Thus, on April 24, 1982, people with mental and physical disabilities became protected under the Canadian Charter of Rights and Freedoms. We were the first country in the world to offer this protection to our citizens with disabilities.

Good on us. :)

Happy Friday!

Donna Thomson’s blog: http://donnathomson.blogspot.ca/2012/04/today-proud-to-be-canadian.html

Sherri Torjman’s blog: http://www.caledoninst.org/Blog/Post/?ID=5

 

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Decisions, decisions…

Elizabeth McClung and I have been having a conversation via comment on my essay “Get Up” decisions(from my 2006 book “Run, Run Because You Can”), which I recently posted last week. It’s got me thinking about decisions. Specifically, it’s got me thinking about how everyone has the right to make bad decisions.

Elizabeth Said:

“Trying 10 times and failing might mean setback right?

I can’t stop thinking about the complicit attitude and acts of visitors, nurses, and others in keeping this man who wanted to not be in a wheelchair to force him to be there…..for his own good (determined by others).

You wrote that your safety when climbing a mountain is not assured. So why did you get to climb and he got locked down against his will? Without further information I don’t know but it doesn’t amuse me or delight me, it makes me alternate between nausea and anger, as it seems a recorded discrimination based on age, not on will.”

I always appreciate Elizabeth’s feedback, because she often helps me to view things in different ways. I’d never viewed the story in the way she suggested. I’d always assumed that the staff had what they considered a good reason for keeping this gentleman from leaving, which was obviously what he wanted to do. Her comments made me start to think about what I would I would have done as this man’s worker if he was person with an intellectual disability.

What Would I Have Done?

It’s difficult to say, truthfully, because there’s a lot of information that I don’t have. Perhaps, like I was right after my stroke, he was confused about the new limitations on his body and didn’t realize that he couldn’t walk anymore.  Perhaps he had severe dementia and didn’t even realize where he was. Perhaps he was simply too ill to go home and didn’t want to accept it.

I realized after thinking about this that I really don’t know much about the policies for keeping someone in the hospital who doesn’t have awareness of how ill he or she is. If there are psychiatric factors associated with the person’s diagnosis, then the doctor may choose to keep him or her in the hospital on that basis.  This man may also have had a power of attorney making decisions for him. Or he may have been waiting for transfer to a physiotherapy unit. I had to wait awhile.

But, assuming that none of these were variables, did the hospital really have a right to keep him in when he’d so strongly expressed a preference to leave? Plenty of people without disabilities choose, for a variety of reasons (some of them not-so-logical)  to leave hospitals against medical advice.

The Right to Make Bad Decisions

I’d need someone who works in a hospital to answer me for sure. And I know that on some days I certainly wished I could “save” the people I worked with from making decisions that I knew were going to make life infinitely harder for them, especially if I couldn’t understand why they were making those decisions. But making decisions for people wasn’t my role, ever, and I would never want it to be.  It wouldn’t be fair of me to say, “This is better.” I just tried to present options, emphasizing that the choice was the person’s.

Everyone’s allowed to make bad decisions, no matter how much we wish they wouldn’t. I hope that if I’d been this man’s worker, I’d have fought for his right to make the decisions he wanted, even if they were ones with which I didn’t agree.

And I certainly would have had a conversation with the staff about the belt restraint on the wheelchair. Restraints should *always* be a last resort.

Thank you for the conversation, Elizabeth. I always enjoy talking with you.

Check out Elizabeth’s blog at http://elizabethmcclung.blogspot.com/

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Involuntary Sterilization: Never Again

Several feminist bloggers have recently written about a story out of Tanzania involving the involuntary sterilization of a woman with several children.  As an American doctors helped her to deliver another child, there was a problem with the epidural injection, and the woman stopped

sterilization

How much is the option to have a child worth to you? How would you feel if someone forcibly took it away?

breathing. The American doctor did chest compressions to save her life. Another doctor performed a tubal ligation, saying, “I think she does not need another baby after this.” The American doctor later called the second doctor’s actions “heroic”

Not Acceptable

When the story broke on the “Femnomics” blog, he defended his stance on the second doctor’s actions by saying that it had to do with realities of life in remote parts of the world and that the sterilization was done with the risks in mind of what could happen if the woman got  pregnant again. But all I could think about was large group of women who were sterilized “for their own good”.

(Read the whole story on the Tanzania sterilization here, plus the American doctor’s defense of his actions, here: http://femonomics.blogspot.com/2011/11/involuntary-sterilization-cowboy.html)

Involuntary Sterilization in North American News

Meanwhile, North Carolina is currently trying to decide how much monetary compensation is owed to the 7600 people that its Eugenics Boards declared should be sterilized involuntarily between 1933 and 1977. According to a recent New York Times articles (http://www.nytimes.com/2011/12/10/us/redress-weighed-for-forced-sterilizations-in-north-carolina.html?_r=2&pagewanted=2&seid=auto&smid=tw-nytimes), 31 states had such eugenics programs. They were  “an experiment in genetic engineering once considered a legitimate way to keep welfare rolls small, stop poverty and improve the gene pool.” The “feeble-minded”, or people with intellectual disabilities or mental conditions, were often targets.

Not that America has the monopoly on the this. Forced sterilization was widespread in Canadian institutions for decades.  Even after the eugenics argument had fallen from favour, sterilization for women was still favoured as a way to them and the women who support them handle menstruation easily, as birth control, and as a way to protect them from abuse (see http://www.wwda.org.au/steril2.htm for a discussion of this).

Not Enough

North Carolina is currently proposing that the each person that was forcibly sterilized be given $20 000. I don’t think it’ll surprise anyone where I stand on this. There’s a scene in the film “Erin Brockovitch”, which (in case there’s anyone left out there who hasn’t seen it), deals with a lawsuit over a town’s water that’s got a cancer-causing compound in it, courtesy of a very large company. When the lawyers are trying to hammer out a settlement for each citizen that’s been affected, Erin says, (and I’m paraphrasing), “I’d like you to consider what your kidneys mean to you…or your ovaries…or your kid’s health…and times that by a million…and then come back with an offer. Anything else is insulting.”

I think that’s the kind of consideration that’s needed here. These people need to go home and look at their kids’ baby pictures, and think about how they would feel if the choice to mother or father that child was taken away from them without their consent (and quite possibly even their knowledge). And think about just what that sterilization was intended to do. And multiply whatever number they come up by another, substantial number. Then they might be getting close to a reasonable settlement.

And put the laws in place so that this never happens to anyone else again.

Anything else is insulting.

 

 

 

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International Day of Persons with Disabilities

International Day of Persons With Disabilities

international day of persons with disabilities

December 3  is the International Day of Persons with Disabilities. It’s a day to celebrate the contributions of people with disabilities and to raise awareness about their rights.

I knew that I wanted to blog about this in some way today, and I spent a lot of time thinking about it last night, and kept coming back to what Michael Bloomberg saying that having making all the cabs in New York accessible wasn’t necessarily what people with disabilities wanted.

What Do People With Disabilities Want?

I’m not a scholar in the field, but I’ve worked with people with disabilities for over fifteen years, and I’ve been living with my own disabilities for over a decade. I think that our needs are fairly simple.

  1. Access to Buildings When we’re cut off from buildings and from areas in buildings, we’re cut off from experiences and from participating fully in the community. We don’t have choices and opportunities that everyone else has.
  2. Access to Resources The current struggles to make web pages more accessible, to make menus easier to read, to make the justice system more navigable, etcetera, seem like overkill to some people without disabilities. But when you can’t see a computer webpage because you’re red-green colour-blind, or you can’t read a menu because the print is too small, or you can’t don’t understand what your public defender is saying to you because you’ve got an intellectual disability, you’re at a distinct disadvantage because of your disability.
  3. Respect for Rights and and Knowledge of Responsibilities  People with disabilities need to live in communities where, like everyone else, they have rights and responsibilities. People with disabilities, adults and children, are at a much greater risk for bullying or assault, sometimes by people are supposed to be taking care of them (paid and unpaid). Abuse can come in all forms (verbal, sexual, financial, violation of privacy, theft). Other rights that get disrespected are as follows: the right for a person to make their own decisions about their life, to be in relationships, to try new things, and to make health and/or money decisions. People with disabilities deserve to have rights abuse allegations take seriously, and need to understand that they have the responsibility to behave in ways that respect others’ rights. Failure to do so will result in consequences for them, just as it would for people without disabilities.
  4. Opportunities to be a Part of the Community  Everyone has ways that they can contribute. Community members need to be open to having all sorts of people as volunteers and employees in the community and makes everyone feel welcome at community events.
  5. People-Centred Supports for Assistance When Necessary  Not everyone needs help all the time, but sometimes something comes up with which people need assistance. It’s always nice to know that someone will be there if you need, whether it’s a paid or non-paid support.
  6. Income Support for Those that Can’t Work That Actually Reflects the Current Cost of Living  The amount that individuals receive on the Ontario Disability Support Program  leaves them at a poverty level.

The Challenges

Right now, setting up frameworks within communities where we can ensure that these five things are adequately addressed costs is taking a lot more time than it should. I believe it’s at least partly because educating governments about the importance of getting funding to help address these issues is taking a long time. It’s simply not high-priority.

And I think that’s partly because you can’t appreciate how vital these issues are until you’ve lived them.  I know from experience that it’s difficult to realize how frustrating it is not to be able to get into a favourite restaurant in a wheelchair until you’re in that position.

I didn’t know until a couple of days ago that International Day of Persons with Disabilities existed, and I hope it will bring some much-needed awareness to what still needs to be done.

On the lighter side, here are some people with disabilities whose accomplishments we really need to celebrate on the International Day of Persons with Disabilities:

  1. Rick Hansen
  2. Christopher Reeve
  3. Albert Einstein
  4. Terry Fox
  5. Stephen Hawking
  6. Michael J. Fox
  7. Helen Keller
  8. Ludwig Van Beethoven
  9. Thomas Edison
  10. Charles Darwin

More about the International Day of Persons with Disabilities:

http://www.un.org/disabilities/default.asp?id=1561

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Election Day in Ontario

Today, Ontario is electing a new Premier. I’m curious as to how Ontario agencies who electionsupport people with intellectual disabilities have assisted the people they support to prepare for voting. I’ve never worked with any people with intellectual disabilities in my career who have been interested in voting in an election, so I’ve never had to go through that process. But I know that people with intellectual disabilities certainly do vote in elections. And why shouldn’t they?

Issues Affecting People with Intellectual Disabilities

The provincial governments administer income support for people who have disabilities that prevent them from working. In Ontario, this program is called the Ontario Disability Support Program, and it also covers medical, dental and eyewear costs. Most people with intellectual disabilities receive at least some support from this program, or have found work to supplement their income support with the help of the ODSP Employment Supports Program. They deserve to know which party is willing commit resources to keeping ODSP income support at its present level (which is only enough to keep people living at a poverty level) and who is committed to raising it. It’s important that the people affected by the issues vote and get their voices heard.

Every Canadian Over 18 Can Vote in an Election

I understand that the concept of an election might be difficult for some people with intellectual disabilities to understand. I’ve tried to explain to people I’ve supported why they should pay their taxes, and that was difficult enough. There’s much more to an election than, “We pay taxes so that the government has money to run our schools and post offices and to pay our doctors to take care of us when we’re sick” (there was more to the conversation than that, but that was the gist). And the thing about taking large amounts of time to prepare people for things like voting in elections is that front-line workers really have too much to do already. Their days are pretty packed.

However, every Canadian over 18, whether or not they’re living with disabilities and regardless of how well they grasp the issues involved, is entitled to vote if they want to. The politicians don’t care if a vote is well-informed or if someone votes because they like the sound of the person’s name; a vote’s a vote. So if a person with intellectual disabilities wants to vote and has had no education about elections at all, we really can’t, as support people, stop them in good conscience. They wouldn’t be the first to go into the voting booth not knowing a thing about any of the names and what they stand for; they won’t be the last.

It would just be much nicer if they had some preparation, some awareness, before going in, to the extent that agencies can manage. For those people supported that indicate prior interest, it’s the right thing to do.

Good luck to all the candidates.

 

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“Please Don’t Feed the Disabled People”

All things considered, the town that I live in is very good to people with disabilities.

Living with Disabilities in a Small Town

If I’ve ever been in trouble (like, I’ve felt a seizure coming on or I’ve simply needed to sit down and rest), local businesses have been more than accommodating about letting me sit down and get a glass of water, or get a cab if I’m walking somewhere. I’ve actually had seizures in public, sometimes with not even enough warning to say “Seizure” before I’ve passed out, and woken up in the hospital; once it was a nurse from Toronto in town for the weekend who took it on herself to call the ambulance, and the other time, being in a cab, the driver simply turned around and drove me to the hospital.

The toughest kids in town have fallen over themselves to open doors for me, and I’ve had complete strangers offer me a ride when they see me start to walk home. I actually got the name for this blog from how I imagine many of the people in town see me (the ones who don’t know me, at least): “the girl with the cane” who’s always walking around.

I’ve also felt grateful that the folks that I work with who have intellectual disabilities have a generally good experience in my town. People know them, they do volunteer and paid work, they’re active in churches and community groups.  They’re recognized and, for the most part, welcomed in the community. Not to say that things are perfect. I’ve heard people mock them. But I think that, generally, people know who they are and they keep an eye out for them. I appreciate that. I’ve known some of these people for over half my life, and I like to think that there are people who appreciate their presence in the community as much as I do.

If anything, sometimes I wonder if they’re a little *too* welcoming…

Popcorn Break

My town, though small, did have a movie theatre for a long time. I worked there for a summer in my teens, serving popcorn and pop and chips. Every night without fail, a middle-aged man with intellectual disabilities named Howard used to stop by the theatre on his evening walk for a free box of popcorn. It was a ritual that the owner had started, and Howard obviously expected it.

 

This did not sit right with me.

“We make other people with disabilities pay for their popcorn when they come to the movies,” I said to my co-worker, who’d been there several months longer than I had. “And no one needs that much popcorn.”

She shrugged. “Do you want to tell him that he can’t have it, after all this time?”

“Well, no…”

So I watched it go on, night after night, feeling more and more uncomfortable with it. I could remember a time when this really wouldn’t have bothered me, but I’d been volunteering with a local agency that supported people with disabilities for about a year, and it didn’t now. This wasn’t like feeding a deer that wandered into your backyard every day.    This was a human being with disabilities who was learning that,for some reason, he was entitled to special treatment. Maybe he didn’t understand why he was getting free popcorn – but the rest of us knew. I wanted to know what our boss got out of giving Howard free popcorn every night.  The only thing I could think of was that he thought that he was somehow doing him a favour, or that he thought it was “cute” when Howard asked, “I have popcorn, please?”

I never did ask him why.  But when my father mentioned that he’d seen Howard getting free food somewhere else in town one day, I got annoyed.

“I really wish they wouldn’t do that,” I said. “He has his own money – I’ve seen him use it. He doesn’t need hand-outs, and he doesn’t people making him think that it’s okay to go around asking people for food. That’s not a good way to function in society.”

“We’re living in a society here!” – George Constanza

I only worked in the theatre one summer, and I don’t know if the ritual with Howard stopped, or when. I know that a lot of people would argue that we really weren’t doing any harm – maybe we weren’t. My boss was a kind-hearted man, very generous by nature, and I’m sure absolutely intended no harm.

But I fully believe that if they wouldn’t have given free popcorn to a typical customer, they shouldn’t have been giving it to Howard, or any person with disabilities.

I’m not a mean-spirited person. I’m just a person that believes that we need to look at adults with disabilities as *adults* first and foremost – not children who need a treat when we see them, or who get to never grow up because of their disabilities…but fully-grown people who get to participate in the community as fully-grown people.  Will some of them need some support to do this?  Of course. But they are still adults, with adult rights and responsibilities…like paying for snacks at the movie theatre.

We do them a disservice to people with disabilities when we take these opportunities to be everything they can be away from them. No one wants to be a child forever.

 

 

 

 

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