Last week at the APSE conference, I ran into a Georgetown student volunteering at the Autism $peaks table who mentioned that they were thinking about starting an Autism Speaks chapter at Georgetown. As I told her in full hearing of the Autism Speaks staff person standing nearby, I will FIGHT from the administration all the way down to every member of the student body to make sure that NEVER happens--not at my university, not for as long as I am alive and in attendance.
I will use every poster, every Facebook status, every student group meeting, every list serv, every contact in the administration, every contact in student leadership, every member of the Autistic and allied and disabled communities, every weapon I have down to my own eye-teeth to END this idea before it EVER gains even the smallest bit of traction. Autism Speaks is an organization that does NOT represent Autistic people. They don't even include us in their leadership. Furthermore, their goal is to eradicate Autistic people. If you believe in equal rights for all people, including people with disabilities, you cannot in good conscience support Autism Speaks.
Fellow Georgetown students: Do not stand for speech that promotes ignorance, fear, pity, intolerance, and ableism. Autism Speaks would have you believe that its only opponents are "misguided high-functioning people." That is not true.
Autism Speaks is the organization behind the "Autism Every Day" public service announcement in which their former vice president stated that she considered driving off of a bridge with her Autistic daughter, and only refrained from doing so because she would also have had a non-Autistic child waiting at home; she made this statement on camera with her Autistic daughter in earshot in the room on screen. Autism Speaks is the organization behind the "I Am Autism" public service announcement in which an insidious voiceover claiming to be "autism" detailed all of the tragedy and horror and bad consequences of autism.
Autism Speaks regularly issues propaganda in which they say, "The rate of autism is higher than the rate of cancer, childhood diabetes, and AIDS combined," which compares a developmental disability to diseases. Their propaganda states that "1 in every 88 children will be diagnosed with autism." When we turn eighteen, we don't magically become non-Autistic. 1 in 88 people are Autistic. Autism Speaks would have you believe that we are living tragedies waiting for the day when we can be cured, when nearly every Autistic person I know does not want to be cured and does not believe in this concept of a cure. Curing me of autism conjures the same mentality as the idea of curing me of femininity; it's so fundamentally perverted and disturbing that words fail to describe how appalling and horrific the idea of severing an essential part of our humanity is to us. No, being Autistic is not sunshine and rainbows. But it is as much a part of who we are as our other attributes.
Among the Autistics who oppose Autism Speaks's anti-Autistic agenda are people who experience significant disability, people who have been institutionalized, people who have been educated in segregated "special needs" classrooms, people who have their own Autistic children, people who do not speak, people with multiple disabilities, and people who have faced extreme discrimination and prejudice against the disabled. Yet we are precisely the people whom Autism Speaks fallaciously claims to represent, and there is a large and growing number of us, Autistic people, who are vocal and adamant about our contempt for Autism Speaks.
Any organization that purports to "help" Autistic people, particularly at a university such as Georgetown that holds so highly the ideals of social justice, equity for all, and men and women for others, must be an organization that meaningfully includes Autistic people at all levels of leadership, including among the Board, officers, staff, and general membership; stands for practices, policies, and systems changes that will lead to equal access and opportunity across all spheres of life and the community for all Autistic people; promote positive and accurate information about autism, Autistic people, the Autistic experience, and Autistic culture; lend the most import to Autistic voices, whether literal or metaphorical, when determining perspectives, priorities, philosophies, and partnerships with other organizations or agencies; and support acceptance, understanding, and equal rights for Autistic people as Autistic people.
Autism Speaks fails all of these tests.
We cannot be a university that purports to support equal justice and equal rights for all if we allow the hate-mongering and fear-mongering that Autism Speaks represents to fester on our campus.
In the name of helping us, they hurt us. In the name of fostering "awareness," they propagate fear-mongering statistics and illogical analogies. In the name of serving individuals and families, they ignore the voices of Autistic people. In the name of appointing an Autistic person to one of their advisory boards, they perpetuate the tokenism of a marginalized population. In the name of science, they are complicit in perpetuating the dangerous and unfounded myth that vaccines cause autism. In the name of benefiting future generations, they threaten to commit pre-emptive genocide against all future generations of Autistic people. In the name of serving individuals with the most significant disabilities, they silence and de-legitimize the voices of all Autistic people, including those with the most significant disabilities. In the name of supporting Autistic people, their chapter leaders shout profanities in the faces of Autistic people who organize protests at their "Walk for Autism" events.
Autism Speaks does little, if anything, to benefit Autistic people, and what little they might conceivable do that benefits us is far outweighed by the gravity of their repeated failures and egregious violations of the principles that undergird the majority of progressive disability rights organizations, whether primarily social, advocate, or activist. The principles of the disability rights movement are to seek equal access and opportunity, not pity or charity, and respect for disabled people and people with disabilities to live as we are, and not in the perpetuity of hoping to become nondisabled because of societal projections and expectations; to seek full inclusion and integration of people with disabilities and disabled people across all facets of life and the community, rather than relegating us to nursing homes, institutions, segregated classrooms, and sheltered workshops; and to demand equal rights over ableist policies and practices in service provision, employment, education, healthcare, technology, transportation, and housing. Organizations that are in alignment with the principles of the disability rights movement are led, directed, and driven by people with disabilities rather than hand-holding or parading the few tokens included in any public role while nondisabled people rule the court.
To those students at Georgetown who wish to support organizations that benefit Autistic people and fight for rights and acceptance, not a cure and demagogic rhetoric that harms us, consider supporting organizations like the Autism National Committee, the Autism Network International, the Autistic Self Advocacy Network, the Autism Women's Network, or even the Autism Society. For cross-disability organizations that support the disability rights movement rather than the medical and charity model of Autism Speaks, consider supporting or joining organizations like TASH, the American Association of People with Disabilities, APSE, the National Council on Independent Living, the National Youth Leadership Network, the HSC Foundation, ADAPT, Self Advocates Becoming Empowered, or the Maryland Coalition for Inclusive Education.
If your interests are academic or you wish to integrate research and practice directly, consider supporting or joining research efforts through the Academic Autistic Spectrum Partnership in Research and Education, the Institute on Disability at the University of New Hampshire, the Disability Cultural Center at Syracuse University, the Institute on Communication and Inclusion at Syracuse University, the Burton Blatt Institute at Syracuse University, the Center on Human Policy, Law, and Disability Studies at Syracuse University, the Institute for Community Inclusion at the University of Massachusetts Boston, the Society for Disability Studies, the Harvard Law School Project on Disability, the National Collaborative on Workforce and Disability for Youth, or even Georgetown's very own University Center for Excellence in Developmental Disabilities.
On a side note, perhaps you're wondering why there are four separate listings for entities furthering the principles of disability rights hosted at Syracuse University and exactly one for Georgetown. (For those reading who aren't in the know, Syracuse is Georgetown's major rival.) As a Hoya, I see that as a challenge to those of us at Georgetown to develop and maintain excellent programming and collaboratives supporting disability rights to rival those already in existence at Syracuse. After all, we can't allow ourselves to be outdone by them of all universities, can we? I've proposed it before, and I'm proposing it again--Georgetown needs to create, develop, and foster a Disability Cultural Center or a Center for Disability Culture in order to promote both internal and community outreach to both people with disabilities and those interested in becoming allies through both social and academic programming as well as supporting student-led organizations whose charters align with the philosophy of disability rights, in the same vein as the programming and outreach efforts of the LGBTQ Resource Center, Women's Center, Center for Multicultural Equity and Access, and the Office of Mission and Ministry. Without such infrastructure in place, it is far too easy for predatory groups like Autism Speaks to mislead students and plant their poisonous roots on our campus in the absence of a strong, administration-backed disability rights presence.
Our student body is diverse in many ways, but while we acknowledge race and ethnicity, nationality, sexual orientation and gender identity, political and religious beliefs, and socio-economic status as not merely valid social identifiers but those whose memberships are represented by a myriad of both student-led organizations and administrative offices on campus, we are sorely lacking in a unified, disability rights founded presence on this campus. Diversability is the student-run disability awareness club including both disabled and nondisabled students, while Best Buddies Georgetown partners presumably nondisabled students with members of the community with intellectual and developmental disabilities. The Academic Resource Center's primary functions in regard to students with disabilities are to facilitate and coordinate academic and housing accommodations, and to provide occasional programming around academic needs of students with disabilities. The Georgetown UCEDD and the Center on Child and Human Development (GUCCHD) are fairly severed from the main campus, the administration, and the student body, and primarily focus on serving children and youth beyond the gates.
A Disability Cultural Center, established as an administrative office on the same level as the LGBTQ Resource Center, Center for Social Justice, Women's Center, Center for Multicultural Equity and Access, and the Office for Mission and Ministry, would serve as the unifying starting point and foundation for all disability-related organizations and offices across the Georgetown community. A DCC would be able to allocate funding toward student groups like Diversability and Best Buddies Georgetown, as well as partner with the ARC or the GUCCHD/UCEDD, or any academic department or faculty member, in order to provide or promote social or academic programming around disability studies, disability culture, or disability rights. The increased public presence of a DCC would foster a greater sense of affinity for the civil rights model of disability among the student body, rather than allowing the University to become complicit in perpetuating the medical and charity exclusive models of disabilities, which is precisely the mindset that has allowed some students to entertain the idea that Autism Speaks is a good organization to have on campus when in fact it is the farthest from.
To my fellow Georgetown students, I implore you to say no to Autism Speaks and their brand of fear and pity propaganda about people like me. But do say yes to disability rights and to organizations that meaningfully and accurately represent disabled people.
To read more on Autism Speaks, see my letter to the Holy Cross President at Responding to Autism Speaks.