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So let's say you are a wheelchair user
and can't get into a building. Well, you could say it's because you
can't walk. But an equally valid reason is because
nobody put a ramp. you have a different kind of brain,
with any of the wide variety of disability labels that exist to describe that, and you
are struggling in a classroom, it may be because the kinds of curriculum and the ways
that curriculum is being communicated to you is not being done in a way that is consistent
with your means. Today, as part of the social model
thinking, a lot of things like universal design for learning, which material can be
communicated over multiple different modalities and other educational innovations
to help people in the classroom. Essentially the social model put the
responsibility for dressing the very legitimate and very real problems associated
with having a disability equally on society and on the disability community.
And essentially in the words of Fred Astaire, it takes two to Tango.
Our problems relate to the way we are, but they equally relate to the way you treat
us because of the way we are. The social model's goals as opposed to
simply fixing disability can best be described by the words of the Americans with
Disability Act. Congress finds the nation's proper goals
in regard to disability are quality of opportunity, full participation, independent
living and economic self-sufficiency. That is essentially what the social
model says we should be striving for. In the autism world -- jumping back into
the autism context here -- this growing conflict between the autistic adult community
and its supporters and family world and what still the dominant voices in the autism
nonprofit establishment, really in a lot of ways mirrored the conflict between social
model and the medical model, which the autistic self-advocate community, largely
adopting the social model position and the nonprofit establishment about the medical
model position. Today, I think we can see a good example
of this kind of conflict. We want to put in practical terms in the
dispute that the organization I represent, the Autistic Self-advocacy Network has with
Autism Speaks. And, you know, a lot of this relates to
this question of can you separate out autism, the disability of autism and autistic people?
And our perspective is that while it's certainly not the only thing that defines who
I am and who other autistic people are, autism is the way our brains work.
And it's not like you can draw a line and say, all right, well, this part of the
brain is the autistic part. And this part of the brain is the
non-autistic part. And we are going to cut out that part
and we are going to put in -- it doesn't exactly work that way.
And so autism is while not the only characteristic of who we are, it is an
important characteristic. And once again, there is no non-autistic
person hiding behind whoever existed before the autistic person.
The belief is that autism is a recent disease that comes in the dark of the night,
so to speak, and you know, switches the formerly normal child with some changeling
child in its place. And, you know, I think you see this in
the rhetoric. You see this in their focus figuring out
what is the cause and how do we cure it. I think when the Autism Speaks, it was
first announced its forming of Bob Wright, chairman and founder, man of incredible power
and wealth, the former chair of NBC Universal.
This is man who has all the money and media access one could possibly have in the
world, which I think is a fair idea of how the organization grew so quickly.
But he announced in the founding press release, I want my grandson back.
Of course, his grandson was living with his mother in New York.
I think it was New York. But, the he most likely had a clear idea
where he was physically. From his perspective, his grandson no
longer existed in his body, he is no longer present, was off somewhere in the Nether
World, what have you. And there was something in his place.
So I mean that's the conceptual difference that we have about Autism Speaks.
On a practical level, this plays out in a few different areas.
As an organization, they have no autistic people on their board of directors.
They are an organization that employees countless people.
They have no autistic people in the senior leadership.
They recently announced they were putting one autistic person on their advisory
board and decided, well, that puts that issue to rest, let's declare victory and go home.
And from their perspective, this isn't a problem to them, by virtue of the fact they
are not really talking about autistic people. That's not what their organization is about.
Their organization is about autism, which is this separate thing.
And their mission is to protect the normal world from this abstract force called autism.
From that perspective, autistic people are sort of just the collateral damages that
happen to get in there, that happen to be created before they came to the rescue.
We believe that autism is something that's always existed in one form or another,
that we are the way we are. Obviously, we have a lot of need for
support and education and services. We need to fight for those things.
But we have a right to be involved and to have some decision making over this public
conversation about us. One of the slogans of the disability
rights movement and also the neurodiversity and autistic self-advocacy movement is,
nothing about us without us. That issue of representation is one of
our major conflicts with Autism Speaks. Another area of conflict, and this one
is sort of less ideological and more practical, is the organization really has
financial practices that are inexcusable no matter what model of disability you ascribe to.
The highest employee made $600,000 in 2008, which is about what the Columbus walk raised.
Congratulations, Columbus, you paid Geraldine Dawson's salary, and she is doing well.
Again, the organization only has, at the last point -- they made these figures
available. They stopped publishing it in their annual report, but it hasn't changed
significantly -- only 4 cents on every dollar that is donated to them goes back into the
community that raised it, in the form of services and support.
Very little is reinvested in the community. So you see a tremendous drain of funds.
Communities are facing tremendous budgetary pressures in the light of cuts and
lack of services and only a pittance of that -- I could go on around the money. It's
outrageous. It doesn't illustrate a point, but I
just put it out there. In terms of what their money is spent
on, predominantly they spend money, aside from salaries, on two things: That being
research and advertising. In these two areas, you do see a clear
idea of the conflict within the autism community, between the social model and the
self-advocate perspective, and the medical model and the perspective of those parents
who have been in charge of the autism nonprofit establishment.
Because in regards to the research to start there, the focus has been nearly
exclusively around questions of causation, what causes autism, and heavy investment
predominantly in genetic research with the idea that genetic research may at some point
result in a cure. And, you know, first, I think the issue
around causation, from our perspective, if you believe as we do that autism is a part of
the way we are, it's not something that's new, I think the causation question is not
terribly relevant except that of academic interest.
Around the question of genetic research, there are some things genetic research can do
that can be useful. There is research to personalize medicine.
Certain interventions might be more effective through the use of genetic research.
It's by no means the clearest avenue towards improving people's quality of life or
the one that's the most lacking for funds. And, frankly, the research around using
genetics and genetic research to improve people's lives has far less precedence and
far less promise than the research around using genetic research to do what's been
done -- Cindy has a call.
CINDY: Thank you, Ari.
ARI NE'EMAN: I think it's your husband. -- in the Down Syndrome world, which is
the creation of a prenatal test. There currently is -- currently is a 92
percent rate, 40 percent studies of selected termination in the case of fetuses that test
positive for Down Syndrome. I have no interest of discussing the
larger abortion discussion with a 10-foot pole. There is a significant difference
between saying I don't want to have a baby now and saying I don't want to have one of
those kinds of babies. So that's describes our differences with
them in the context of research. And finally we have the differences in
the context of advertising which really are extensions of the other kinds of differences.
It shows a fairly stark difference. To our point of view, the purpose of
raising awareness about autism is to increase the public's acceptance of autistic people
and thus make it more likely the public will be interested in supporting us with the
services and education that we need, in accepting us in their schools, in their
places of work, and generally having better lives for autistic people.
Less discrimination/more support, is a very simple formula.
The Autism Speaks approach has been very different. It's largely based on fear.
A classic Autism Speaks advertisement consists of some famous actor or actress
doing a voiceover saying, the chances of having your child being in a fatal car
accident, one in 23,000 or so. The odds of having a child being born
autistic, 1 in 110. Clearly, it is, give money or it could
happen to you. And you see this similar tactic in some
of their fund raising videos. One of the executives, in the Autism
Every Day video, announced that she had seriously -- she is saying this for the
camera; her daughter, 4-year-old daughter is sitting next to her -- she seriously
considered putting her 4-year-old daughter in the car and driving off the George Washington
Bridge. But she didn't because she had a normal
child as well and would somehow persevere on for the normal child.
When they were making this video, they informed all the families before the tape
recording, make sure not have your child's therapist come a week beforehand and not to
do your hair and leave your house as dirty as possible because that will get people to
give more money. You realize how horrifying it
is to have somebody who is autistic in your family. So
Autism Speaks' idea of advertising is advertising that raises awareness with the objective
of raising money, because, again, 15 then the money will help them eliminate autism;
and autistic people are sort of
incidental to this entire mission. To our minds, if you are raising money
to the detriment of the people you should be serving, you are not doing any good
whatsoever. Essentially, all of this question is
about -- all of this is about, is the purpose of autism advocacy about a world with happier
autistic people who live with more quality of life, are more likely to get educational
supports and interventions, are more likely to get the services and supports and
accommodations, maybe be able to hold a job, to live as independently as possible, to do
any of the other things that people with without disability aspire to.
Or is the purpose of autism advocacy to protect the public by creating a world
without autistic people? To us, that's a very stark and simple
choice. But in case you are having trouble
making up your mind, I think it does bear some, and certainly I am sure many of you
have very different interpretations to the facts I described.
And I freely admit, seeing as I am representing one side, to being biased and I
hope you have an opportunity to get into a back-and-forth on that during our question
and answer.