Who Speaks for Us? We Do.

 

Excerpt from The Inclusion Daily Express:

People With Autism Speak Out Against Autism Speaks
(The HillTop)
November 2, 2009
WASHINGTON, DC-- [Excerpt] Detached from the sea of walkers at the annual Walk Now for Autism Speaks fundraiser in D.C., was a group of about 15 autistic individuals who stood protesting.

Against the backdrop of the Washington monument, they chanted “Autism Speaks doesn’t speak for us,” and “Autistic people speak. Are you listening?”

Ari Ne’eman, founder and president of the Autistic Self Advocacy Network (ASAN), led the protestors. Contrary to the mission of Autism Speaks, Ne’eman and members of ASAN allege that the organization is actually exploiting the autistic community instead of helping it.

“I saw that all too often, autistic people are kept out of the public policy discussion about us and decisions are put forward that don’t fit with our needs and don’t relate to what we want,” said Ne’eman, who, along with the other members of ASAN, is autistic.

Entire article:
Autistic Plea Less Pity
http://www.thehilltoponline.com/autistic-plea-less-pity-1.2046862
Related:
Autism Walk on National Mall Stirs Controversy (WJLA)
http://www.wjla.com/news/stories/1009/674094.html

Comments

[Claire]

Ne'eman does not speak for "the autistic community" either. He speaks for a few high functioning types who prefer to ignore the reality of autism on the severe end of the spectrum. Parents and loving caregivers must speak for their children, some of whom cannot speak at all..and get them the sort of treatments that are appropriate to them. I highly recommend visit to Facing Autism in New Brunswick for an excellent perspective on the matter. http://autisminnb.blogspot.com/

[Aaron]

Claire, you are ill-informed. Ari does not ignore the reality of autism. In fact, ASAN's current main goal is to reduce the abuse that many are subjected to because the 'loving' caregivers that do not understand autism. As a parent, I recommend you try to work with the self-advocacy community. You may find yourself enlightened to the abilities of people on the spectrum and not focus so much on the disabilities. Maybe this may make you more mindful of your own child's abilities.

[Setting Facts Straight]

It is untrue that Ari Ne'eman speaks only for a "few high functioning types who prefer to ignore the reality of autism on the severe end of the spectrum."

Autistic Self Advocacy Network does not discriminate. Matter of fact, ASAN neither tolerates messages of hierarchy when it comes to autism, nor does it promote such ideas. ASAN is open to ALL members of the autistic spectrum. Many ASAN members and supporters are not only on the spectrum themselves, but are also parents of children who are considered as being much more impacted by autism.

I'm tiring of the damaging hurtful lies circulating that people who are Asprerger's autistic a) have no need for supports or b) do not care about other autistic people who have high support needs. Neither Ari nor ASAN promotes discrimination. Matter of fact, the only discrimination and prejudice I see on this site is coming from the commenter above who is promoting the Facing Autism in New Brunswick blog.

[Claire]

Sorry, I maintain my perspective. As for my daughter's abilities and my awareness of them, Aaron...you have no idea.

[BetterLifeforallAutistics]

One of the main reasons ASAN was protesting Autism Speaks is that only 4% of their enormous budget goes towards supports and services. ASAN knows the needs of Autistic people alive today are not being met, partially due to so much money funding genetic research and "awareness" (otherwise known as spreading hate and fear). I can't think of one parent who would choose to have their child's needs ignored over funding research to prevent people like their child from being born in the future. Even if you believe in eliminating autistic people from future generations, why would any parent put that goal ahead of their own child? ASAN wants a better quality of life for every person on the spectrum and their families. Autism Speaks does not share this goal and in fact they dampen it.

[Meg Evans]

Steve, thank you for letting your readers know about ASAN's advocacy efforts.

As both a parent and an Autistic self-advocate, I would like to see more communication and understanding between parents and Autistic adults, who share many common goals such as better access to community supports, services, therapies, education, and employment opportunities.

ASAN opposes the harmful practices of Autism Speaks as an organization. ASAN has no animosity toward the parents involved in the walks, who are unaware that almost all of the funds they raise will be spent on genetic research and high executive salaries, rather than on family services.

[Lydia]

When Autism Speaks includes actual autistic people on their board and in their decision-making process they will have graduated to true advocacy. Until then they are nothing more than a monstrously exploitative organization devoted to conning people out of money that could have gone to provide such things as assistive technology so real autistic people could speak for themselves. As such, they have a vested interest in not allowing or helping autistic people to speak for themselves.

[Savannah Nicole Logsdon]

Autism Speaks just speaks for themselves. It isn't just us "higher functioning" (By what definition? I've met non verbals who function otherwise better than I do myself, and people with prodigious verbal skills who must have live in care givers.) who are not okay with Autism speaks. To say that you can provide appropriate services without involving the person who you are providing services to is absurd and has been rejected in most other disabled communities- including portions of the Intellectually disabled communities.

Add in the disproportionate spending on heads of the organization and stigmatizing advertising, and it's horrifying. Pity advertising is a horrible stigma to overcome- please see the stories about the former "Jerry's Kids" who resent Jerry for making them objects of pity through things that weren't entirely accurate. Similarly, I and others resent accusations that we break up families and bring certain financial distress.