Monday, April 06, 2009

Definitely not autism advocacy: the People First ribbon

People First attended the recent autism conference in Halifax, where their work was featured in my presentation. Here is the information People First provides with their black and yellow ribbon pins:

We wear these ribbons to let Canadians know that too many people are still locked in institutions.

We are horrified that Canadians keep institutions open. We are angry that new kinds of institutions are being built.

The black ribbon is because people in institutions are not safe. Many have died. We mourn their deaths.

The yellow ribbon is for liberation--we want all people in institutions to step into freedom.

All people regardless of the severity of their disabilities should live in the community with the support they need.
Here is how People First defines institutions:

An institution is any place in which people who have been labelled as having an intellectual disability are isolated, segregated and/or congregated. An institution is any place in which people do not have, or are not allowed to exercise control over their lives and their day to day decisions. An institution is not defined merely by its size.
Meanwhile, autism advocacy leaders in Canada have long insisted that autistics just naturally belong in institutions, a view which in consequence is enshrined in Canadian jurisprudence, under Canada's highest law:

Unless their condition is successfully treated, almost all autistic children are doomed to a life of physical, emotional, social, and intellectual isolation and eventual institutionalization - a tragic outcome for the children, their families, and society.
Here "successfully treated" means undergoing unlimited ABA-based autism interventions starting very early in life. Most autistics in Canada cannot meet this requirement, ergo autism advocates claim there is no choice except to lock us in institutions for our own good and the good of society. Canada's most powerful autism advocacy organization, FEAT (also known as "Medicare for Autism Now!"), adds that we must live in restraints and have our teeth pulled.

Canadian Senator Jim Munson, who has publicly supported FEAT, has used his power and influence to make it widely known that autistics' natural place is not in society or communities or families or the workplace but in institutions. Like other leading autism advocacy organizations and individuals, Senator Munson is insulting and undermining the very important hard work and achievements of People First.


Anonymous said...

I was thinking of visiting Canada with our son.My family is from Canada.Our son loves Paris and french.He would like to see Old Quebec.

Now I am not sure this is a good idea.I had every intention of telling the place where we will stay about his diagnosis,so they would understand why he might do something a little "unusual."

He already struggles with the idea he has "something wrong" with him.(He is high functioning and very self conscious of it.)The last thing he needs is someone being "short" with him.

I am saddend that the country that gave my grandparents life,is taking it away from these kids/adults.

Any advice on this vacation. Are there areas more "foreign/autism friendly"than others?

farmwifetwo said...

Canada is not an evil place. Most children with autism are in regular school classrooms, attend regular outside of school activities.

Neither of my children are "segregated". The little one who's on the severe end - 7yrs old - attends regular swimming lessons with the regular kids.

Institutions are necessary for some but most are under the care of Community Living (google). In regular housing and supported by caretakers.

There are people that cannot live on their own. Institutions, using her definition, could be my youngest son living with me as an adult.

These Neurodiverse autistics don't believe in therapies. They think autistics should be left alone. If they aren't taught to speak or communicate using some form of computer, pecs, sign... how are they to have their needs met??? Also, by learning, becoming educated and independant, then they won't need to be cared for by others.

I have noticed that AUTISTICS like Dr. Temple Grandin, are not welcome at these meetings. Probably b/c she and others like her, think that those that are doing the most whining on the HFA/Aspie end of the spectrum should stop whining and become active participants in society.

Also, there are ABA programs as she mentions... my youngest ended up in one. Most are not. Most are more play structured, family oriented and relaxed.

I'm surprised Michelle hasn't taken a swat at Ont's PPM 140... Which allows for proper social skills, behaviour teaching in the classroom. A simple token system has allowed my 9yr old to go from not understanding the social rules of the Gr 3 classroom to being a full participant - and a smart one - in his Gr 4 classroom. All someone had to do was explain what was going on and how he could be part of it and what the teacher's expectations were.

Michelle has her own agenda.


Michelle Dawson said...

In response to farmwifetwo, People First groups were started, a long time ago, by individuals with a great deal of experience in being institutionalized. In my view, they should be listened to.

Neurodiversity is part of the general idea that disabled people should have human rights. I disagree with farmwifetwo (who is posting the same comment everywhere), and with autism advocates in general, that this is bad for autistics.

Anonymous said...

Is it true that institutional care is no longer available in British Columbia? I read about that in Eaves & Ho (2008). That would seem to contradict the notion that institutions are necessary for some.

Michelle Dawson said...

In response to Anonymous, if your son wants to see old Quebec, then I hope he can visit there. I've visited Quebec once or twice and it is beautiful.

I think you risk getting a bad response to disclosing your son's diagnosis in many countries, but more so in some countries (like Canada) than others (the UK; but not a lot of French there...). A bad response can range from pity and condescension to fear, disgust or horror. You and your son might be on the receiving end of a lot of stereotypes and rude remarks or questions.

You may also get good responses. I've had the whole range of responses, from very good to extremely bad. I have no idea how to tell ahead of time. It is a sort of roulette.

Disclosing my diagnosis to my employer destroyed my career and put me in danger. It took almost ten years and a lot of legal work to mitigate some of the damage.

If you are interested, there are some more-likely-to-be autistic friendly places in Canada. For example, there is Prince Edward Island, see also this blog.

I've just been to Halifax, where the Provincial Autism Centre (very different from the typical autism society or autism advocacy organization) is doing some good things. Nova Scotia has the Autistic Self-Advocacy Council as well--there is no equivalent group anywhere else in Canada. But NS also has its share of autism advocates spreading false, pejorative information about autistics. So, sadly, there is no guarantee that a diagnosis of autism will be well received.

Michelle Dawson said...

In response to Joseph, institutions for developmentally disabled people in BC, home of the Auton case (whose trial decision I quoted), closed in 1996.

The remaining three institutions in Ontario have just recently closed. Closing them required legal victories over some parents who were demanding that they stay open.

Anonymous said...
This comment has been removed by a blog administrator.
Michelle Dawson said...

The deleted comment was fund-raising spam, including a URL leading to autism-advocacy-standard false information about autistics.

Anonymous said...

Mais je pense que l'université de Montreal, c'est une institution comme les dictionnaires n'est ce pas?

Mais je souhaite que leur dentisterie et meilleure pour les autistes comme ce qu'on recommande par FEAT :)

Roger Kulp said...

I think farmwifetwo does have a valid point.The neurodiversity people are unwilling to offer solutions as to how take care of more seriously disabled autistics.

They need to present clear cut,detailed plans,stating what alternatives they have to institutionalization,and ABA.If they cannot do this,then their complaints are largely worthless.

While I will not say there are no longer any institutions where autistics are warehoused and ignored, I do think there are those in the neurodiversity movement,who paint an unrealistic picture,by claiming things are just as they were in the bad old days.The same goes for ABA.

To listen to those like Ms.Dawson, you'd think it was still 1965 or something.

I have also recently learned that, ABA is now offered to adults on a very limited basis,and it seems to an excellent way to improve verbalization,and develop social skills,two things I desperately need.

I have mitochondrial autism.My functioning level fluctuates back and forth between high and low.Two years ago,I had an acute case of meningitis,and for the next twenty months afterwards,I was right back to childhood,with the meltdowns, eloping,head banging,and other severe problems of autism,those like Ms.Dawson deny exist.

I am not "low functioning" all of the time,but I am not able to live on my own either.I live with my 80 year old mother.

What alternative do you offer for someone like me ?

Michelle Dawson said...

In response to Roger Kulp, I suggest that if in his view I am providing false information, he should give examples of this. In order to do this, he would actually have to read what I've written, which does not seem to be the case.

Mr Kulp wrote, "To listen to those like Ms.Dawson..."

Who are "those like Ms Dawson"? Is Mr Kulp referring to People First?

Mr Kulp wrote, "The neurodiversity people are unwilling..."

Who are the "neurodiversity people"? Neurodiversity is part of the general idea that disabled people should have human rights. The general idea that disabled people should have human rights is enshrined in Canada's highest law.

Mr Kulp wrote: "...those like Ms.Dawson deny exist."

I find it truly emblematic of autism advocacy standards (those Mr Kulp is promoting as what autistics deserve) that Mr Kulp makes the stupefying claim that I deny that self-injury exists and deny that autistic lives are often very difficult.

I've taken the position that autistics are human beings with human rights, and Mr Kulp sees this as a very bad thing. I've taken the position that autistics deserve to benefit from and be protected by recognized standards of science and ethics, and Mr Kulp sees this also as a very bad thing.

Mr Kulp has taken positions and promoted standards that go a long ways towards guaranteeing that autistics have poor outcomes. From what Mr Kulp wrote here, there is nothing I could write or do that would alter Mr Kulp's positions or views.

So I can't solve Mr Kulp's problems any more than I can persuade Mr Kulp to inform himself about someone's work before making numerous claims about it.

Michelle Dawson said...

I forgot to add, in response to Mr Kulp, that People First groups (which Mr Kulp seems to be objecting to) are run by and for people who are written off by autism advocates as "low-functioning."

In my view, People First groups have done far more to improve the lives of developmentally disabled people than anyone else.

Anonymous said...

I think farmwifetwo does have a valid point.The neurodiversity people are unwilling to offer solutions as to how take care of more seriously disabled autistics.

They need to present clear cut,detailed plans,stating what alternatives they have to institutionalization,and ABA.

@Roger Kulp: I find this quite surprising, considering that a couple of comments prior it was made clear that institutions had been shut down in BC. Obviously, those who lobbied for this must adhere to neurodiversity (even if they don't call it that) and they must have found alternatives that are better to institutions, albeit probably not perfect.

Furthermore, I'm not aware of any adult outcome study that shows ABA prevents institutionalization.

Anne said...

Roger, the movement toward deinstitutionalizing people with developmental disabilities has been going on for decades. In Canada, the People First organization has been active in working out arrangements for community inclusion of the developmentally disabled.

Here in California, the law provides that people with developmental disabilities have the right to "treatment and habilitation services and supports in the least restrictive environment," and the California Department of Developmental Services has a variety of living supports that include institutions (congregated living for 16 or more people), group homes, and supported living in private residences.

Capitol People First has been prosecuting a class action lawsuit on behalf of the residents of the institutions to enforce their right to choose the least restrictive living arrangements that are possible for them. That lawsuit was recently settled.In the settlement agreement, California DDS agrees to develop new community programs and housing options.

It's not like the idea of deinstitutionalization is some recent pipe-dream of the neurodiversity movement. It's a goal that's been adopted as public policy in a number of jurisdictions, though its implementation hasn't been free of problems.

There are some people, like autism parent Harold Doherty, who are hoping to reestablish institutions where they have been closed, at least for autistic people. And there were certainly some parents and guardians who intervened in the Capitol People First case to argue against giving institutional inmates the choice of supported living in the community. But by and large, I don't think you'll find much sympathy for the idea that moving people out of institutional living is "largely worthless" as a goal.

Michelle Dawson said...

Thanks Anne. The appeal court ruling in the Capitol People First case was part of my presentation in Halifax. So was People First's decisive role in the Eve case at the Supreme Court of Canada.

You can find a history of People First in Canada here, here, and here.

Anonymous said...

So true, Hope for our kids still lies above...

Chun Wong said...

I really didn't realize that Canada was like that - a very informative post. It's scary that some countries are so "backward" about autism and other health concerns/disorders. We definitely need to raise awareness!

Astrid said...

I don't liv ein Canada, but in the Netherlands. Here, deinstituionalization has happened since the 1970s or so and I used to think it was quite a bit along until I myself ended up in a sychiatric hospital, where I have been for 1 1/2 years now. Since my hospialization, I gradually realized how wary community service providers are of people who, for one reason or another, seem "too bad". Note, we have many community places for developmentally or psychiatrically disabled people, although unfortunately autistics fall between the cracks, but many have strct requirements before you can live there. In my own case, if the only reasont o be in an institution woul be being a threat to myself or others, I could've been out of it for over a year. Now due to a lot of ureaucracy, I may not be able to get housekeeping help, must be able to deal with support available only part of the day, cannot have any (even very minor) behavior problems, and must be able to structure my own daily activities, if I want to live in the community. None of this, in my opinion, has to do anything with whether your residence is an institution or a community housing project.

Gwyneth Bison said...

( video )

a credo for support ( people first version) :