All day I think about it, then at night I say it. Where did I come from, and what am I supposed to be doing? I have no idea. My soul is from elsewhere, I'm sure of that. And I intend to end up there...Who looks out with my eyes? What is the soul? I cannot stop asking. If I could taste one sip of an answer, I could break out of this prison...I didn't come here of my own accord, and I can't leave that way. Whoever brought me here will have to take me home.

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02 November 2010

Autistics Speaking Day 2010

The past month has been busy for me on the advocacy front. I attended the 2010 SABE Conference in Kansas City, Missouri. While at the conference, representatives from organizations such as Autistic Self Advocacy Network (ASAN), Self Advocates Becoming Empowered (SABE), and the National Youth Leadership Network (NYLN) interviewed hundreds of people with disabilities on the subject of institutions. And boy did they have a lot to say.

Though the Developmental Disabilities Assistance and Bill of Rights Act, the Americans with Disabilities Act (ADA), and other legislative acts, decisions, and rules exist to serve people with disabilities, reality shows that many individuals who receive home and community based assistance do not experience genuine community environments or lifestyles.

When I interviewed conference attendees about what they think of when they hear the word community, I received responses such as: access, choices, equality, inclusion, people making contributions, living and working, and a place where you are allowed to come and go as you please.

When I asked interviewees to describe what they think of upon hearing the word institution, I received responses such as: bad, bossed around, disrespected, electric shock, forgotten, jail, lonely, limited choices, never visited, rejected, sad, segregation, and unworthy.

When I asked interviewees (a percentage of whom live in group homes or institutions) to share what they wish they could change about their lives, I received statements such as:
  • "I wish I could touch my own food first--before someone else does--and prepare what I want to eat for once in my life."
  • "I wish I had the freedom to fail. I wish I could make my own decisions, even if they are not always right."
  • "I wish I had a job that really means something to me."
  • "I wish I could get married and have children."
  • "I wish I could make mistakes without having the people in charge take my checkbook away from me as punishment."
  • "I wish I could come and go as I pleased."
  • "I wish I could choose my own friends."
  • "I wish my friends could come visit me whenever I ask them to come visit me."
  • "I wish people understood that people with disabilities can be of help and support to others. Just because someone uses a wheelchair, or just because someone might need help with toileting, does not mean that person cannot be of support to someone else."
  • "I wish I had real friends; friends that are not paid to be with me. I appreciate my support person, but they are paid to be my friend."
  • "I wish I could decide when I want to use the telephone. I have to ask permission like I am a baby or something."
  • "I wish I could have an iPod."
  • "I wish my group home did not have a sign on it. I think it scares people away. They see that and they keep on walking. They don't stop to chat like they do with our neighbors. I wish someone would stop and chat with me if they see me. I am different, but I don't bite."
The information we collected from interviewees will be shared with policymakers. After reading what we pooled and presented, I don't see how policymakers cannot be swayed in favor of closing down institutions and integrating people with disabilities into society. After all, it's the right thing to do. Community integration should be available to all people with disabilities regardless of where they live. And any standards applied must reach all community-based services and settings.

Kansas City wasn't my only stop. Dora Raymaker and I just returned from the Primary Care Research for People with Intellectual and Developmental Disabilities Workshop in Hershey, Pennsylvania.

After scampering back and forth through our connected rooms with big eyes and utter delight, holding hands and jumping up and down in our plush Hershey Hotel robes, admiring our chocolate-scented bubble bath solutions, ordering room service, (and--ahem--running round the outdoor flower gardens and ponds using false British accents pretending we were firing this gardener and that gardener--off with their heads!) we put on our professional hats to speak about Academic Autistic Spectrum Partnership in Research and Education (AASPIRE). Our presentation encompassed Community Based Participatory Research and how AASPIRE has employed this approach in its Healthcare study. Here's an excerpt from what I shared when it came time to explain how I felt as a community member being part of CBPR:

"At first, I found our internal emails to be too convoluted with scientific jargon to make any sense of them. I panicked thinking about how I was in deep water if my university degree and work experience combined was not enough to help me stay afloat in the world of CBPR. I possessed no inner resources to pull from in order to decipher the emails. Feeling shamefaced and unworthy, I dove under the table, knees shaking, nails bitten down. A week later, I peeked up from beneath the table and noticed the Principal Investigators of AASPIRE had emailed to ask how I was doing. I swallowed the lump in my throat and took this as a cue to come clean and explain I was an imposter, and that they should fire me and relegate me to the fringes of society where I belong. "No, no, no!" they said. "This is CBPR! We need you! We really need you."

When I heard the sincerity in their voices, I knew what I had to do: I had to confront them about their jargon. I had to confront them about the convoluted scientific email structures that made no sense to me. And to make a long story short, my suggestions ended up revolutionizing the way AASPIRE continued with the CBPR process."

In summary, the emails are now broken down and delivered in a format using the caps below with the answers plugged in beneath each one:

CBPR acknowledges the communities it works with as a unit of identity (something an individual *belongs* to), and builds upon strengths and resources of community stakeholders. It facilitates collaborative equitable partnership--never tokenship--in all phases of research. It encourages co-learning and capacity building among all partners, as well as focuses on community relevance of all research. The community itself defines relevance of the research, and the research conducted benefits the community and the researchers. For further information about CBPR, click here.

The catalyst for the development of CBPR was to address and solve the issues minorities faced in research. Many researchers tend to connect minorities in research with ethnic and racial minorities. However, the Autistic community is also a valid minority. Autistics are a small group facing challenges such as discrimination, marginalization, mistreatment in research, and underrepresentation. Having our own Autistic culture, language that belongs to our community [I am not a fan of this term, but for the sake of example, "Aspie"], social spaces, and events such as Autistic Pride Day and Autistics Speaking Day defines us as a legitimate community. To learn more, check out Jim Sinclair's description by reading about the History of Autism Network International.

In his work, Phil Schwarz has pointed out that members of the Autistic community, like members of the GLBT community, can be born into families who have no other autistic members. Family members who do not identify with the Autistic community may be at odds with the wishes of the Autistic community by taking part in advocating for cures, or pushing for normalization of individuals on the spectrum. CBPR gives the Autistic community a direct platform for dictating research agendas that are in line with the community's culture, goals, and values. Nothing About Us Without Us! CBPR gives the Autistic community a chance to have a say in research and science about us. It's designed to ensure that all research is beneficial to both the community and researchers. And, most importantly, CBPR is designed to give something positive and useful back to the community's it targets for research (e.g. it is not positive and useful for researchers to claim we have no imagination without consulting, as the the contrary is true). CBPR facilitates the very idea of Autistics Speaking.

Autistics are asking for acceptance, accommodations, equal civil rights, and services to help ALL individuals on the autistic spectrum in the here and now.

There's a lot of work to be done in the world of disability rights and self advocacy. It is my pleasure to work alongside those involved in this endeavor. It's time to end discrimination and segregation against disabled people. Happy belated Autistics Speaking Day.

Further resources (warning: these videos contain disturbing footage from institutions):

Video Suffer the Little Children

Willowbrook: The Last Great Disgrace


  1. Yay!

    I love the way you describe autistic culture/community. Especially the issues that occur when family members themselves are not on the spectrum (and therefore often don't hold the same priorities and/or cultural values).

    I'm planning on writing a belated Autistics Speaking Day post too. Tomorrow, I hope.

  2. The breaking down of e-mails is very useful.

    I think I could well apply it to blog comments.

  3. Thanks, Melanie (it's an honor to have you as a reader!)

    @Adelaide: Glad you found the email breakdown helpful. I couldn't live without it. Feel free to use it! :)

  4. Sounds like a really good time at the Hershey Hotel. And I'm glad that you were able to affect the way CBPR communicates to its members. Sounds like an important contribution.

  5. Greetings and salutations, Clay! Glad to hear from you!

  6. Sounds like a great month.

    Love the email suggestion -- why don't you put it up as a separate post? That would be useful not just for folk with autism but everybody in these busy times.

  7. This comment has been removed by the author.

  8. "The Autistic community is different in that family members may or may not be on the spectrum. And family members who are on the spectrum, may or may not identify with the Autistic community."

    The Deaf and LGBT communities work that way too. That's why I think it's so important to apply lessons learned from them.

    We need an organization in the Autistic community that functions the way PFLAG does, in the LGBT community:

    * to provide support to families, caregivers, and professionals who have chosen to cast off the FUDD (fear, uncertainty, doubt, and dread[1]) approach to "autism awareness" and to become allies to Autistic self-advocacy

    * to provide outreach, information, perspective, and support particularly to families new to a diagnosis, so that the FUDD approach is not the only one they hear, and so they become aware that autism does not have to be a tragedy, and aware of how to make that so. To help them make the journey alluded to in Jim Sinclair's "Don't Mourn For Us": to process and move beyond the sense of loss of a previously imagined future.

    The analogous support function that PFLAG provides to families of newly out LGBT young people, to cope with the consequences and changes of having an LGBT family member, is particularly compelling and there is a compelling case for building an organization that will provide the same kind of support *based on Autistic people's perspectives rather than on FUDD*.

    * to mobilize non-Autistic allies to help remove barriers Autistic people face in employment, housing in the community, continuing education, access to quality legitimate healthcare, building vibrant and caring social networks, and living in the community as consumer and citizen

    -- Phil
    [1] The acronym for "fear, uncertainty, doubt and dread" is intentional: "Be vewy vewy quiet... we're hunting *tweatments*!"

    (N.B: the first time I tried posting this comment, I got the CAPTCHA phrase "dredli" :-). I've deleted and reposted it in order to correct a typo.)

  9. Salutations, Phil! I appreciate what you've added to the comments. (Todah rabah, meod meod!)

  10. I agree with how this post brings appreciation to the readers. Very well explained...

  11. Glad to have you as a reader, franchiseguy01. Thanks for stopping by.