- 11:16 pm - Fri, Aug 5, 2011
- 13 notes
8/5/2011: Symposium on Neurodiversity @ Syracuse University
This is not an exhaustive account of my day by any measure, just a quick synopsis of it.
So, I went. And now I’m back. :P
So I eventually got to the venue after going to the wrong building on the wrong campus and hearing some… unsettling noises coming from my wheel wells as I drove on the Thruway.
Seriously, this Goldstein person must have been loaded as fuck to have two buildings named for them. (Unless they were two different Goldsteins, then they should have a one-building-per-name limit or something.) I probably wouldn’t have even got there if not for a very helpful couple of employees in the first “Goldstein” building.
The symposium began with the keynote address by Ari Ne’eman (who some of you may know as the Founding President of the Autistic Self Advocacy Network) entitled “An Overview of the Neurodiversity Movement and a Discussion of Autistic Politics”.
After the address and lunch, I observed the session on autistic culture facilitated by Jim Sinclair (co-founder of Autism Network International) and Sola Shelly (co-founder of the Autistic Community of Israel), which laid out most of the key characteristics of autistic culture as opposed to the larger, allistic-dominated society, as well as a comparison of USian and Israeli autistic culture.
The second session I went to was about parents and allies of the neurodiversity movement, which was mostly a discussion of what their role is/should be in the movement. It was facilitated by Rachael Zubal-Ruggieri (a parent ally who works at SU’s Center for Human Policy) and Jim Sinclair.
I also bought a “Support Neurodiversity” t-shirt there. I might post some pics of me wearing it tomorrow.
Overall, I found it a positive experience. It would have been better if I didn’t drain my car battery by leaving my daytime driving lights on all day and have to wait 30+ minutes for Campus Police to come jump-start my car. =/ Oh, self, when will you learn?
- 9:22 am - Sat, Jul 2, 2011
- 1,022 notes
1. Autism Speaks talks about us without us. Not a single Autistic person is on Autism Speaks’ Board of Directors or in their leadership. Autism Speaks is one of an increasingly few number of major disability advocacy organizations that refuse to include any individual with the disability they purport to serve on their board of directors or at any point in their leadership and decision-making processes. In large part this is due to Autism Speaks’ public relations strategy of presenting Autistic people as silent burdens on society rather than human beings with thoughts, feelings and opinions.
2. They use fear and stigma to try and raise money off the backs of our people. Autism Speaks uses damaging and offensive fundraising tactics which rely on fear, stereotypes and devaluing the lives of people on the autism spectrum. Autism Speaks’ advertising claims that Autistic people are stolen from our own bodies. Its television Public Service Announcements compare having a child on the autism spectrum to having a child caught in a fatal car accident or struck by lightning. In fact, the idea of autism as a fate worse than death is a frequent theme in their fundraising and awareness efforts, going back to their “Autism Every Day” film in 2005. Indeed, throughout Autism Speaks’ fundraising is a consistent and unfortunate theme of fear, pity and prejudice, presenting Autistic adults and children not as full human beings but as burdens on society that must be eliminated as soon as possible.
3. Very little money donated to Autism Speaks goes toward helping Autistic people and families: According to their 2008 annual report, only 4% of Autism Speaks’ budget goes towards the “Family Service” grants that are the organization’s means of funding services. Given the huge sums of money Autism Speaks raises from local communities as compared to the miniscule sums it gives back, it is not an exaggeration to say that Autism Speaks is a tremendous drain on the ability of communities to fund autism service-provision and education initiatives. Furthermore, while the bulk of Autism Speaks’ budget (65%) goes toward genetic and biomedical research, only a small minority of Autism Speaks’ research budget goes towards research oriented around improving services, supports, treatments and educational methodologies, with most funding going towards basic research oriented around causation and genetic research, including the prospect of prenatal testing. Although Autism Speaks has not prioritized services with a practical impact for families and individuals in its budget, its rates of executive pay are the highest in the autism world, with annual salaries as high as $600,000 a year.
— Ari Ne’eman, ASAN President.
(Source: , via themalebridgettice)