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Critics Question Obama Choice For Disability Committee

By Michelle Diament | January 13, 2012

A presidential appointment this week to a federal disability committee is drawing backlash from a group of self-advocates.

President Barack Obama said early this week that he would appoint Autism Speaks executive Peter Bell to the President’s Committee for People with Intellectual Disabilities.

The committee of 21 citizens and 13 federal representatives is tasked with advising the president and the secretary of health and human services on issues affecting Americans with intellectual disabilities.

Bell’s appointment is now drawing criticism, however. Members of the Autistic Self Advocacy Network say they are disappointed in the selection of Bell who they call “anti-vaccine.” Specifically they cite Bell’s previous role as head of Cure Autism Now, which merged with Autism Speaks in 2007.

“Bell’s appointment shows such contrast to the forward motion the Obama administration has shown in the areas of autism and disability as a whole,” said Melody Latimer, director of community engagement for the Autistic Self Advocacy Network. “The link between autism and vaccines has long been discredited, and so an appointment placing an anti-vaccine leader in a position to influence a greater audience and re-open the issue is disappointing and ill-advised.”

Bell declined to comment on the allegations. In the past, however, he has spoken up about the possibility of a link between autism and vaccines. In one example from his days at Cure Autism Now, Bell disputed the findings of a 2004 report from the Institute of Medicine that dismissed such a link.

“We cannot ignore the rapid rise in the rate of autism that occurred during the 1990′s, in tandem with the increased use of thimerosal-containing vaccines in the U.S.,” Bell said in a statement at the time, which is still posted on Autism Speaks’ website. “We must continue to explore every possible avenue, including various environmental toxins, to get at the underlying issues that are affecting a generation of our children.”

Autism Speaks officials would not address the vaccine-related concerns directly but said they are very happy about Bell’s appointment.

“We are thrilled about Peter’s well-deserved nomination to this important advisory committee and share the White House’s commitment to improving the lives of all people with intellectual disabilities,” Autism Speaks president Mark Roithmayr said in a statement.

Bell also has support from some outside of Autism Speaks. Patricia Wright, national director of autism services at Easter Seals, said she’s worked with Bell recently to advocate for reauthorization of the Combating Autism Act and on initiatives focused on adults with autism. Given the significant number of individuals with both autism and intellectual disability, Wright said she thought Bell would bring a much-needed perspective to the committee.

White House officials said they will proceed with the appointment as planned and are waiting for some paperwork to be filed to make Bell’s new position official.

“The president stands behind this appointment and we look forward to Peter’s contributions to the committee,” Obama spokesman Shin¬†Inouye told Disability Scoop.

In addition to Bell, Obama has added several new members to the intellectual disability committee in recent months, including “Glee” actress Lauren Potter who has Down syndrome.


12 Comments (Open | Close)

12 Comments To "Critics Question Obama Choice For Disability Committee"

#1 Comment By vmgillen On January 13, 2012 @ 3:18 pm

Normally I don’t agree with the self advocates (in part because they generally belie the fundamental markers for diagnosis… at least before the APA changed the DSM – thereby promoting a public mis-perception of ASD). However, Bell’s group offends on many different levels – not least of which is a similar warping of public perception of Autism… and association with the vaccine controversy seemed to be a blatent attempt to get funding and publicity using a “hot” button issue: some parents and children were put at risk.

#2 Comment By John Best On January 13, 2012 @ 3:22 pm

Why do you print this crap from these idiots with ASAN?

#3 Comment By Dadvocate On January 13, 2012 @ 4:29 pm

More appropriate is ask President Obama, given one appointee’s outspoken, on the record opposition to the the Combating Autism Reauthorization Act (CARA) that, among other things, funds the existence of the Interagency Agency Coordinating Committee (IACC) for autism policy, why Ari Ne’eman, founder of ASAN still has a seat on that body. If he doesn’t support the IACC’s existence, why should he be allowed to exercise the responsibility to broadly represent our community on the Committee? And by the way, Peter Bell is anything but anti-vaccination…ask the folks over at Age of Autism. This looks like ASAN’s usual “blinders on” approach to autism advocacy, “Nothing about autism, unless we’re in charge”

#4 Comment By Mark L. Olson On January 13, 2012 @ 4:38 pm

It is disturbing that on a website that generally has solid reporting on issues about the disability community, including autism, that Michelle Diament is allowed to be such a shill for ASAN. Peter Bell is an exceptional addition to the President’s Committee. I speak as a parent of a teenager with autism, chair of a state subcommittee on matters critical to persons with autism, and a provider of residential and employment services to persons with autism. ASAN attempts to slander Bell as anti-vaccine when in fact he and the majority of the autism community are NOT anti-vaccine, but rather FOR better and safer vaccines, more intelligent vaccine protocols, and less influence by Big Pharma on real science and investigation, legislation, and adjudication. Worst of all, Latimer parrots a position about a possible link that in fact betrays the very population her group claims to represent.

#5 Comment By Zoe On January 13, 2012 @ 8:07 pm

@ Marc Olson, how on earth does reporting on a disagreement between organizations count as “shilling”?

Furthermore, why do representatives from Autism Speaks (mottos: “It’s time to listen” and “Everyone wants to be heard”) complain whenever anyone quotes an autistic self-advocate in a news article? If you wanted the voices of autistic people to be heard, this should make you happy, not upset.

#6 Comment By Advocate On January 13, 2012 @ 8:14 pm

While in the world is the attention on who should or shouldn’t sit on a committee when the committee does little to help improve anyone’s life. And IAAC is the biggest joke around! We need to get on committees that deal with civil rights, employment, housing and poverty and dignity and committees that really do something. Until we all stop fighting and realize the enemy isn’t Ari or Bell, but rather those that daily discriminate against others and those that see it is ok to not employe people with a disability. Let’s ask Obama why a 80% unemployment rate of adults with a developmental disability is ok when our nation screams at a general 9%unemployment rate. Let’s stuff arguing about stuff that doesn’t really help those who need our help. Bell being on the committee means little to most people and let’s move on.

#7 Comment By Sarah On January 13, 2012 @ 9:45 pm

It’s simple John….. Because those who suppot neurodivesity have just as many rights to state their opinions, just like yourself with the antivax views that you carry and post on and on about in almost every thread I have seen that has anything to do with Autism as a whole……… Parents, professionals and individuals alike have the right to view both sides of the coin. Just because YOU don’t like what they have to say, doesn’t mean that everyone else has to follow your lead and dislike it too! Do you comprehend what I am trying to tell you? Good, now lets move on with our lives.

#8 Comment By Sarah On January 13, 2012 @ 9:47 pm

Edit to correct: support

#9 Comment By John H. On January 13, 2012 @ 10:04 pm

Looks to me that they gave ASAN and Autism Speaks equal time in the article, there are many reasons that the community should be concerned with anyone from AS on a committee. I for one do not want AS speaking for my child or my family but I have not been given a choice in this appointment, I have been part of the Autism community longer than they have been in exsistance and during that time they have done nothing to advance the quality of life for persons with Autism, with all the money and resources they have still nothing, and with an agenda of research first I don’t see any in the future. And now we have 1 person utilaterally speaking for all of us whether you agree with them or not, I find it also interesting that all AS will say is that they are very happy with the appointment….how about you say what his agenda will be other than raising money and spending it on causation research, because they would rather not tell us.
So we should be concerned about this for the fact that 1 person will represent all of us without an agenda to move any of our children or loved ones quality of life forward. Although the silence from AS speaks volumes about their “support” of his views, its time to move beyond the vaccine arguement and make serious decisions about serious issues that face people with Autism and there are alot of us that think that Autism Speaks is not qualified to do that. Autism Speaks should take their money back that they paid for that position and go back to their little corner of the world and raise some funds to pay for something that makes no sense.

#10 Comment By Allaboutacceptance On January 13, 2012 @ 10:21 pm

Appointing Peter Bell is not helping to calm the polarization within the Autism Community. Many are working tirelessly to create a more accepting world and are focusing on opportunities and brighter futures for those who are already in a stagnant system. The 21 Citizens who I would like to see on the committee would be Intellectually Disabled Adults, Parents, Siblings, Friends, Teachers and Daily Life Care Workers etc. rather than those on the Corporate Level.

#11 Comment By violetred On January 14, 2012 @ 8:41 pm

A presidential committee appointment is a political appointment. You want people on the committee who can influence legislation. Autism Speaks has a track record in this area…without their political muscle a lot of states would not have adopted legislation requiring insurance companies to cover therapies for autism. I may not agree with everything Autism Speaks does, but I am happy one of their members is on this committee. This is how it works in our government, like it or not. You need that inside person to wield their influence and get the job done. Frankly, that’s how most things work. Do we have successful IEP meetings because we know IDEA inside out and we show up to the meetings alone? No, usually we bring an advocate who speaks the same language as the bureacrats and helps our kids get what they need. I’m tired of seeing our government ignore the needs of people with disabilities. Maybe this committee and groups like Autism Speaks will help this to change.

#12 Comment By Mark L. Olson On January 16, 2012 @ 6:37 pm

@Zoe. Diament has a track record of publishing anything ASAN sends her, typically with their spin. As I said previously, this is inconsistent with the generally excellent reporting that appears on DisabilityScoop.com. I can’t speak to your remark about AS reps complaining when self-advocates are quoted as I am neither, and unaware of any such remarks. I am, however, a huge proponent of coverage on a disability news website of stories that advance issues benefiting the disability community.

The real story here is that one of the most caring and intelligent leaders with one of the largest organizations in the world working to serve the needs of persons with autism and related disorders is now part of a President-level group helping influence how the government can serve that population. (Whether this disability committee can actually accomplish anything remains to be seen. If the current state of dysfunction in Washington is any indicator, I’m not optimistic.) Instead, the headline, body and tone of the piece is all-ASAN.

Autism Speaks is an organization that started from one grandmother’s concern about her grandson’s future. It is the largest private funder of research into the cause and treatment of autism. It has had more impact on the passage of legislation to mandate insurance coverage for autism that any other organization (and we’ll need that continued support because insurance companies are quickly figuring how to worm their way out from under that mandate). From where I stand that earns them a seat at the table.


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