In the spirit of the November holiday season, ASAN would like to give thanks this month to all of our members and supporters. We are grateful for all of the various ways in which you have stood beside our organization, and in which you continue to enliven our community and its efforts. We could not be successful without the contributions of all of our members and allies throughout the country.
Sometimes our goal of securing a world in which all Autistic people are supported, valued, and able to thrive within our communities may seem like an endless task. Certainly there are continual challenges and obstacles. This month, ASAN expressed our reservations about a recent study that questions the benefits of inclusion, as well as our concern about an upcoming hearing on autism before the House of Representatives that excludes any Autistic witnesses or speakers. But then the efforts of self-advocates paid off: Congress got our message, and invited Autistic speakers to the hearing, including ASAN president Ari Ne’eman. As we keep moving forward, it is important to reflect on the progress that we have made, and that we continually make. Our annual gala was a great success, and our members and chapters throughout the country keep taking action to support the cause of self-advocacy. ASAN continues to provide a space in which Autistic voices are heard and, while there is always work to be done, we recognize and celebrate all of our community’s victories, whether on the national, local, or individual level.
On a Wednesday in November a week before Thanksgiving, over one hundred leaders in the disability rights movement joined leading members of the Autistic community and allies in celebrating six years of innovation, service, and leadership from the Autistic Self Advocacy Network. With generous support from Gold sponsors Amerigroup Foundation and the Mitsubishi Electric America Foundation, and numerous other sponsors, the ASAN annual gala welcomed partners and supporters of Autistic empowerment and disability civil rights to Washington’s National Press Club for an evening of music, dinner, and engaging conversation.
ASAN presented Madeleine Will, Vice President of Public Policy of the National Down Syndrome Society, with the Ally of the Year Award, and Steven Kapp, a PhD candidate at UCLA and Co-Director of the UCLA/Los Angeles ASAN chapter, with the Award for Service to the Self Advocacy Movement. Ms. Will previously served as the Assistant Secretary for Special Education and Rehabilitative Services in the U.S. Department of Education, and Mr. Kapp has co-written two of ASAN’s policy briefs about proposed changes to the diagnostic criteria for autism spectrum disorder in the next revision of the DSM-5.
Between dinner and dessert, gala attendees heard from keynote speaker Kathy Greenlee, the Assistant Secretary for Aging and Administrator of the new Administration on Community Living, and special guest Kathleen Martinez, the Assistant Secretary of the Office of Disability Employment Policy at the Department of Labor. Administrator Greenlee spoke about the commonalities between issues facing the aging and disabled communities, and the importance of emphasizing supported community living options rather than segregated or institutional settings for members of both constituencies. Assistant Secretary Martinez spoke about the necessity of collaboration across communities and individual stakeholders in ensuring inclusion for disabled people.
Youth self-advocates and veteran leaders of the disability rights movement joined members of the local DC Autistic community to share strategies and stories of resilience and activism, public policy advocacy, and community engagement. During the speeches, though the room was full of Autistics and allies alike, the gala attendees joined in collectively flapping, rather than clapping, for speakers and award recipients in a true melding of Autistic cultural norms with the broader disability community. This year’s gala marked ASAN’s further transition into the cross-disability community in celebrating disability pride and empowering disabled people.
On November 14th, shortly before the ASAN annual gala, there was a panel at Georgetown called “Disability and Inclusion in the Humanities.” Lydia Brown, ASAN intern, writer of Autistic Hoya, and Georgetown student majoring in Arabic and Psychology, arranged this panel. Four speakers were invited: Kassiane A. Sibley, a current pre-med student and associate editor of “The Thinking Person’s Guide to Autism”; Elizabeth J. Grace, an assistant professor in Diversity in Learning and Teaching at National Louis University and writer of Tiny Grace Notes (aka Ask an Autistic); Renleigh Martin Spencer, a member of the Disability Center planning committee at Georgetown; and Ki’tay Davidson, the Director of Ableism Awareness and Community Outreach for the Disability Rights Coalition at American University.
All four panelists were people with disabilities. Both Elizabeth and Kassiane are Autistic, and all four had personal stories to share above and beyond the discussion of the broad institutional issues that people with disabilities face in the humanities. Ableism–discrimination against people with disabilities–is a huge problem. Examples of ableism include making people get a more recent evaluation (We need to make sure you’re still autistic/dyslexic/using a wheelchair!) in order to get any accommodations, giving only the bare minimum of accommodations and that only grudgingly, insisting on viewing disability as a purely medical issue with basic accommodations that should mean the person now functions exactly as a non-disabled person does, and ignoring the existence of people with disabilities as people who are a part of the human condition. Kassiane noted that she needed to constantly remind her professors “that my … condition is the human condition. I am a person too,” and Elizabeth recalled that her fellow professors were the ones who had the most difficulty accepting the value of disabled perspectives on disability. Her students were excited to hear what disability was like from someone who actually experienced it, but her colleagues insisted that it was neither rigorous nor academic to use personal experience in this way.
The idea that disability could be an identity was also a big discussion point, both as something that is important and as something that still needs work. Kassiane told the audience about having to look up the sign for “Autistic” and how her American Sign Language teacher tried to correct her from saying “I’m Autistic” to “I have autism,” ending with Kassiane asking “You have deaf?” Of course he didn’t “have deaf”- the idea of Deaf and Blind being cultural identities as well as disability labels is more accepted than for most other disabilities, though even those communities are occasionally subject to others insisting that they are people with their disability, that they should “not let their disability define them.” While this separation from disability as a defining attribute was a step forward from concluding that a disability meant spending life hidden away from the rest of the world, it does not allow for a sense of group identity or for the inclusion of disabled people as a group in the same ways that other marginalized groups have aimed to be included–as a group of people that are different and whose differences are a part of their identity, not a medical issue that has nothing to do with who they are. Ki’tay noted that “We need to bring it (disability) into the cultural realm,” and Renleigh agreed, stating, “Any sort of identity studies should come first,” and talking about how we need to understand oppression in light of disability. These facets of disability studies are all important, and the panelists explained the importance of all these facets, their interactions, and the importance of proper disability studies in creating a culture of inclusion both in the humanities, and in society as a whole. Renleigh holds that promoting disability studies in the academic world will also promote disability culture in society, which is an important part of proper inclusion. Inclusion of a group should not depend on pretending that this group is exactly the same as everyone else, but on accepting and embracing the differences, and that requires more than a purely medical model of disability that ends at simply providing needed services.
Lydia Brown and Andy Voss
Around fifteen Autistics and allies gathered throughout the day on November 3 to stand by the side of the path where participants in Autism Speaks’ annual Walk Now for Autism would be walking. Our signs bore slogans affirming the beauty, value, and worth of Autistic minds, as well as information and graphics about Autism Speaks’s financial irresponsibility, lack of accountability to the DC community, and lack of Autistic representation in its board.
Despite some negative reactions and a large number of disappointing responses, dozens of walkers paused to take copies of our materials and several took the time to engage with us directly. While many who support Autism Speaks may believe themselves to be well-intentioned—for some, their support of Autism Speaks is driven by a desire for their Autistic loved one to receive access to necessary supports, or to secure a better future for their Autistic loved one—few are truly aware of the discrepancies in the organizations’s fiscal practices or the consequences of its rhetoric in portraying autism (and by extension, Autistic people) as something to be pitied and feared.
As those whose goal is a better society for Autistic people, a place in which Autistics receive the supports necessary to have the same opportunities and access across all spheres of life as non-disabled people, we were there to urge them to send their money to more worthwhile programs. In 2010, the DC Walk Now for Autism speaks raised over $760,000, yet, of that sum, only one $12,000 grant was awarded to a DC-based community service provider—only 2.6 cents on the dollar was returned to the DC community. And nationally, only 4% of Autism Speaks’s budget goes toward family and community services.
When it comes to research, the numbers tell a stark tale. Of the millions of dollars in research funding that Autism Speaks grants to researchers, only one percent goes to quality-of-life related research, and less than one-hundredth of one percent of that number goes toward lifespan or adult issues. While Autism Speaks’ research portfolio reveals the organization’s agenda of funding research into “causes, prevention, and a cure” for autism, it also reveals the organization’s evident lack of concern for funding significant research in areas of interest to Autistics and in areas that will directly impact millions of Autistic people living today.
And so we, members of the local Autistic community and allies, held the ground beside the walk in the hopes of reaching those genuinely well-intentioned, to direct them toward supporting research and policies wanted by the Autistic community and away from supporting organizations that do very little to support those they claim to help. Occasionally, walkers asked if our signs were available for them to carry, perhaps because they saw signs as celebrating their Autistic loved ones. At another point, an older man with a mobility impairment who was using crutches joined our protest spontaneously, helping hold some of our signs and flyers for what might have been close to an hour.
It was a cold Saturday, and our hands and legs quickly grew numb. But we remained throughout the morning, knowing, believing that we might reach at least a few.
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In addition to the protest of Autism Speaks’ “Walk for Autism” in DC earlier this month, in October chapter leader Andy Voss and ASAN’s Sacramento chapter led a protest against Autism Speaks’ local “Walk Now for Autism” event. During their protest, the chapter members faced down a few cruel remarks from angry Autism Speaks supporters. ASAN is confident that most supporters of Autism Speaks are motivated by genuinely good intentions, and that even those who initially react in anger to dissent from the Autistic community can be reached by an appeal to mutual respect and community-building. As part of an open letter to those supporters, Andy Voss writes:
We have now protested Walk Now for Autism Speaks in Sacramento for two years in a row. A growing number of Autistic people, including members of the Autistic Self Advocacy Network from across the nation, assert that Autism Speaks fails to represent us. It uses hurtful, dehumanizing rhetoric about us, it pays unjustifiably extravagant salaries to its officers, and it funds research whose eventual goal is to prevent Autistic people from being born rather instead of funding supports for Autistic people currently living in the community.
With protest signs in hand, we passed out about 100 or so flyers to walkers as they left the walk. Many of those who declined our flyers did so politely. As we protested, we ensured that we remained polite, civil, and legal. Regardless, one walker told one of us “You’re a jackass,” and another muttered that if we could speak for ourselves, we wouldn’t be Autistic. At last year’s protest, one man said we were all losers, and another woman shouted several times from far away for us to “go jump off a cliff.”
Take a moment to think about the Autistic people in your life, whose “team” you’re on. If a classmate or coworker called them a jackass or a loser and implored them to jump off a cliff, would you not call that
bullying? Would you not insist that this sort of malice cannot be what a truly social world is built on? Ask yourself this: What makes this behavior more tolerable when perpetrated by Autism Speaks supporters against Autistic adults who speak out for their own rights?
I try desperately to give my constituents a balanced picture of the kinds of parents, relatives, and other supporters that Autism Speaks targets, and behavior like what I have seen from the angriest and most disrespectful walkers sometimes makes that a difficult task. You should not tolerate the blatant disrespect many of your supporters have for us in front of one another, because in the end it hurts the people you love.
Your love for your Autistic family members and friends is too great to be squandered on the whims of the enormously privileged neurotypical CEOs that make up of Autism Speaks’ board of directors. They speak for you as poorly as they speak for us, and we know that somewhere within you, you have the heart to tune them out and tune us in. After all, we are the people your children grow up to be. We deserve respect.
On November 14, I also went to the ASAN second annual gala. I was almost an hour late, having gotten stuck in traffic on the way from the Disability and Inclusion in the Humanities panel to the gala with the organizer of the panel and a few of the panelists who were also attending the gala, but what I arrived to was more than worth the wait. When I arrived, it was to…Autistic space!
Autistic space is not like neurotypical space. In Autistic space, stim toys are readily available, such as the blue ASAN Tangles at every seat, and carrying them with us to fidget with when talking to other attendees was completely normal. Instead of the loud clapping applause normally used, we use jazz hands or flapping at the end of speeches or anywhere that clapping would normally be appropriate. That the inability to use spoken language and having nothing to say are two completely different things is accepted as a fact, and is not an issue that leads to continuously needing to prove and re-prove competence. If and when a topic is difficult or triggering, it’s considered acceptable to step outside. There is no need to apologize for acting visibly autistic or for the “forgetting” of faces that can come from face-blindness or from simply not looking at people. Sure, this was a gala at the National Press Conference, but that didn’t mean that we suddenly needed to act like neurotypical adults at their most formal–the social rules common to the outside world need significant modification for use in Autistic space, including a requirement of being as direct and clear in communication as possible given current language abilities and a complete suspension of asking for eye contact. That’s what I found at the gala. I found people talking about important things in language I could understand and being OK with the people fidgeting and flapping and looking off in a completely different direction than the speaker, knowing that this was simply our natural way of being, not some attempt at disrespect.
I heard about self-advocacy and including people in communities, about the importance of Alternative and Augmentative Communication, and about needing to stand together. I heard about not letting the world isolate and mistreat any group that they were somehow convinced was really the group to isolate, no matter how much “but this time we’re sure!” we might hear. They’re never as sure as they think they are, not with Autistic people and not with anyone else. I heard more about the Loud Hands Project, which I submitted a semi-poem to, and finally got to see the video used for fundraising for it. All things affirming the acceptance of autism as a difference that is a disability not in need of elimination or cure, but simply support for a different way of being, were to be found at the gala–it was one of few spaces where I felt completely safe.
Kassiane wrote after Autreat that she had found her family, that it was the Autistic community, and after traveling to Washington, DC for the annual gala, I have to say the same. The Autistic community is another family for me, one that makes sense and that understands both the advantages I have and the difficulties I face. The Autistic community understands that this is who we are, for better or for worse. The gala itself may have only been two hours out of a busy day, but in a world that is not yet designed for people with brains like ours, it meant family and it meant home.
News and Advocacy Updates
Last week, ASAN expressed concern about the initial lack of Autistic speakers participating in an upcoming hearing before the House Committee on Oversight and Government Reform. On November 29th, a hearing on autism-related issues will be taking place before the committee. Thanks to the efforts of the self-advocate community, Autistic voices have been heard and Autistic speakers have been invited to the hearing, including ASAN president Ari Ne’eman.
In a recent statement, ASAN commends the Oklahoma Human Services Commission and governor Mary Fallin for upholding the states two to three-year plan to close its remaining institutions for developmentally and intellectually disabled people. In their place, the state will provide for community-based services and living arrangements.
The journal Pediatrics has released a study critical of the benefits of inclusion for autistic children and adolescents. ASAN has released a statement questioning the methods and scope of the study, pointing out flaws that the study’s authors themselves have acknowledged. ASAN maintains its support of inclusion, and looks forward to studies that address how to improve inclusion efforts, and how to provide all students with opportunities to thrive among their peers.
Last month, a thirteen-year-old self-advocate named Henry Frost made the news when he fought to attend general education classes at his local middle school instead of a separate specialized program. ASAN is pleased to report that Henry has won his right to attend Wilson Middle School, where he can access general classes and pursue his full educational potential.
December 3rd marks the International Day of Persons with Disabilities. As part of observing this international event, ASAN and our allied organizations are reminding our supporters that the US Senate will be voting on whether to ratify the United Nations Convention on the Rights of Persons with Disabilities (CRPD). This would be final step in the process of ratifying the treaty in the US. Along with the United States International Council on Disabilities (USIC) and the Association of University Centers on Disabilities (AUCD), as well as numerous other disability-advocacy organizations, ASAN encourages advocates to take this opportunity to speak out in support of the CRPD. Voice your support for the ratification of the CRPD by posting on social media outlets and/or contacting your Senator. USIC has provided sample language for tweets and phone calls and a list of Senators’ contact info. For more information about the CRPD, the National Council on Disability has compiled a study comparing the treaty to existing disability-related legislation in the US.
National Federation of the Blind of Kansas reports that workers under the country’s largest sheltered workshop for the blind, Envision, are dissatisfied with the renewal of Envision’s federal contract. Under the renewed contract, workers continued to be exploited through subminimum wages and a lack of training to prepare them for competitive employment. According to a press release, Tom Page, media contact and 1st Vice President of NFB of Kansas, stated:
“We are disappointed when operations such as Envision act as though they are anything but a last resort for blind persons seeking employment. The fact is that many tens of thousands of blind people have found employment in main stream professional jobs with duties ranging from being employed as doctors, lawyers, office professionals and practitioners of professional trades such as electricians and general contractors. Most workers in sheltered workshops simply have not had the opportunity to learn the skill sets that make these or other careers possible. When sheltered workshops such as Envision represent themselves as main stream employers it supports the mythology that blind persons are unable, unwilling, or unfit, to pursue competitive employment.”
ASAN supports the National Federation for Blind in speaking out against exploitive sheltered workshops and in calling for programs that instead empower disabled people to work for competitive and livable wages. Mr. Page can be reached by email at firstname.lastname@example.org.