Self-Advocate Voices at the IACC

On May 4th at the Interagency Autism Coordinating Committee (IACC) meeting, autistic self-advocate (and artist!) Katie Miller gave the following testimony (captioned, though a little poorly).

In her testimony, Katie touches on key concerns to many in the self-advocacy (and broader) community, such as alternative and augmentative communication, health disparities, and the need for inclusion of all stake holders in the conversations about autism research. She discusses quality of life, services, education, transitions, and community support systems as key areas for attention--all items that have direct, immediate, and profound impact on the quality of our lives today and tomorrow. She emphasizes the need for respectful language. And closes with a warning about eugenics.

It is encouraging that the IACC has begun including us in discussion of the things that affect us most, and hopefully is an indication of greater inclusion in times to come.

Thank you Katie for the excellent testimony, and thank you IACC for the opportunity to present it. Nothing about us without us!

(Side note: The self-advocate presentation Katie references is mine, which you can see here (PDF ~1.8 MB). For the entire proceedings from the meeting in video or podcast see here.)

EDIT: Katie has graciously provided me with the written transcript of her testimony, so for anyone not loving the peculiar subtitles, the text is behind the more cut.

Dear Members of the Committee,

Thank you for allowing me the opportunity to speak today. My name is Katie Miller and I am here representing myself as an Autistic citizen.

I would first like to applaud the IACC for having a presentation on Assistive and Augmentative Communication given by an Autistic self-advocate. The significance of this is two fold. One, AAC is one of the most important areas of autism research because it provides non-speaking Autistics with ways to communicate. Communication is a basic human right and no one should be denied that opportunity. The limited numbers of AAC devices do not work for everybody. AAC research is vastly under-funded, leaving countless Autistics unable to express their thoughts due to lack of compatible technology. The fact that this presentation is being given by an Autistic self-advocate is also to be applauded. It shows that the views, experiences, and expertise of the Autistic community are valued.
It gives me great pride to witness an Autistic voice being heard.

While this is evidence of progress, Autistic voices should be a regular, organized, and consistent presence within the IACC, not an incidental occurrence. Out of eighteen members of the board, only one is Autistic. How can the committee succeed if it largely excludes the people it exists to serve?
Representatives of the Autistic Self-Advocacy Network have proven helpful to the Obama Administration as evidenced by repeat invitations to important service, education, and disability-related events, briefings, and exclusive bill signings. It is time that the IACC include a presence from the organized self-advocate community, such as a member of ASAN. We are here to help you understand the challenges and strengths of our diverse community. We are the experts on our Autistic needs, experiences, ideas, thoughts, and feelings, and we are eager and willing to offer you that insight.
Please listen to us.

One of the challenges many Autistics face is less access to healthcare, and often less adequate healthcare, than that of the average population. These disparities are common throughout the lifespan and effect Autistics with diverse abilities and living situations. The reasons for healthcare disparities are likely as varied as Autistic people themselves. How, then, do we research solutions?

We directly involve all the affected parties: Most notably Autistics, doctors, nurses, and primary care-givers, but also friends, family, teachers, social workers, public transit operators, health-care receptionists, and anyone else directly deemed relevant to a particular case. This collaborative approach to research is called Community-Based Participatory Action Research. It equitably involves all parties in the research process, combining the unique knowledge and strengths of each to produce the desired result. Research done collaboratively is more likely to result in the discovery of concrete problems and solutions regarding improper health care for Autistic people.

In addition to executing Participatory Action Research, I strongly urge the IACC to implement research dollar parity. For every dollar that goes into basic autism research, I want to see a dollar going into quality-of-life, services, supports, and education research. These are the areas that directly improve the lives of autistic people. While scientists spend billions of dollars searching for the causes of autism, Autistic children are being abused by their teachers, who lack the education and resources to treat them appropriately. Teenagers are shuffled from school to school, without ever getting an appropriate education. Young adults age out of the system, only to find they were not taught independent living skills and there are no programs able to help them. Autistic adults are being confined to institutions because community support systems are either non-existent or grossly underfunded. Whether an Autistic adult needs help holding a job or brushing her teeth, the fact is that research can and must be done to develop effective supports that allow Autistic people to reach their individual goals and lead fulfilled lives. Years are spend searching for a future cure, while Autistic people who are here now, who can be helped now, have needs not being met due to lack of research and funds. For every dollar, for every hour, that is spend in a lab looking for causes, think of how matching that time and money can make a real, measurable difference in someone’s life.

Secondly, I would like to point out that language matters. Autism is not cancer. Cancer kills people. Autism does not. When I hear autism compared to cancer, in terms of searching for a cure or in statements such as “autism is worse than cancer,” what I hear is that society would rather I was dead than continue to exist the way I am. I am fortunate to be able to express my opinion on this matter, but many of my fellow Autistics can not. Please do not assume that they do not understand or do not have opinions on what is said about them. Autism is not a disease or an epidemic: it is not contagious, infectious, or life-threatening. It hurts our feelings when you describe us as a burden.

The last points I want to touch on are the bioethics concerns and eugenic applications of genetic research. I believe that science for the sake of pure knowledge is not in essence wrong or bad in any way. It is how humans choose to use the knowledge we have gained through science that can lead to harm. I do not believe that it is wrong to be curious about the causes of autism. In fact, I myself am fascinated by the human brain and I enjoy reading about my own Autistic neurology in scientific texts. (By the way, all those journal articles many of you were complaining about earlier, well, I’d love to read them! If all those articles are overwhelming for you, you should hire Autistics to read them. Many of us love that sort of thing, and we’d be very accurate and meticulous in reporting on them.) However, I am deeply concerned about how cause-based research may be used. If a pre-natal test for Autism is developed, up to 90% of Autistic people may follow in the steps of those with Down syndrome, and never make it out of the womb. Because Autism is so complex and so varied, there is no way of predicting the future quality-of-life of an Autistic fetus only by identifying certain genes.

I am not taking a stand on abortion, but on eugenics. Today, we are abhorred by the times in history where groups as varied as the poor, mentally ill, blind, promiscuous, physically disabled, homosexual, Jewish, and others were labeled “degenerate” or “unfit”. In an effort to improve human hereditary traits, such people were institutionalized, sterilized, and of course killed. Of course, we now recognize these retched acts as massive violations of human rights.

Let’s not go there again. Let’s not segregate people from society by confining them to institutions when they could live in the community with the right supports. Let’s not think of people as “sick” “disordered” and “unfit” for living. Let’s not take an entire group of people, and, without their consent, attempt to prevent future generations of them from existing. Let us respect and accept all people for who they are. Let us support and educate all people and aid them in living the best possible life possible. Let us develop ways to help people communicate their needs and access healthcare. Let us change society to accommodate all people, and let us make the world a place in which everyone can grow, learn, work, play, love, but most of all, live.

Thank you.