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26 July 2012

On Ableism in the Autism and Autistic Communities

It's everywhere.

"Autism isn't mental illness. We're not like those people."

"It wasn't an autistic person who would commit mass murder. Only people with actual mental illness, like psychopaths or schizophrenics do that kind of thing."

"Those ideas are insane!"

"Autism Speaks's idea of representing Autistic people is absolutely crazy."

"People who want to give their kids bleach enemas are just nuts. Their ideas are nuts."

It comes not merely from Autistics and non-Autistic parents and professionals and researchers but also from Autistics and non-Autistic parents and professionals and researchers who are disability rights advocates and activists.

I don't believe in vilifying people who aren't aware (yet) of their privilege and who don't have malicious intent when they use ableist language that denigrates people with mental or psychiatric disabilities, intellectual disabilities, or developmental disabilities. But I do believe in actively educating people about where these words come from--crazy, insane, loony, nuts, stupid, idiotic, moron, imbecile, retarded--and once someone knows the connotations of a word, it's their prerogative to decide whether they care to actively combat their own ableism or continue to perpetuate it through their language.

And it's absolutely disgusting when this type of ableism comes from the mouths of those who, of all people, ought to know better. If you're the average twenty-year-old class and ability privileged college student who has never heard of ableism and has never considered the origins of the word "insane," fine, I can give you some slack until someone tells you that the word "insane" was used as a diagnostic label to perpetuate discrimination, prejudice, and stigma against millions of people and you continue to use it. But if you're a disability rights advocate or activist, there is no reason whatsoever that you should be using such stigmatizing and othering language, especially if you've been told by other people that your language is ableist.

Take the humble pill, recognize your own strands of ableism, and stop using the ableist language. You are NOT benefiting yourself or any of the people whom you claim to represent or on whose behalf you claim to advocate because the language that you are using is directly contributing to attitudinal and societal barriers to equality, access, and opportunity for millions of people with mental or psychiatric disabilities. If you've been told--and I know many of you have been told repeatedly because I was the one who told you--that your language is ableist, then you need to stop using it. It is not okay to refer to ideas and people with whom you disagree as insane or crazy or nuts or loony because those are hateful and hurtful words just as much as the word retarded.

20 July 2012

All I want to do is weep

It's hard to speak today, let alone write.

My chest feels empty, and when I breathe, I struggle not to start shaking and crying. I force myself to sound normal in conversation, will myself to write coherent sentences. I crave solitude and company all at once, time to process and time for comfort. It's easy to offer quick, sound-byte answers. It's easy to ask the rote questions every time something like this happens.

It's hard to just... think.

It's overwhelming. Overloading. Not the information. That I'll grab and absorb as much of as possible as quickly as possible.

It's the emotional assault. All of it, all at once, unrelenting, uninhibited, unfiltered, crashing over me and crushing me and pulling me downward and suffocating and smothering me. I can't process it. It's all of them -- the people dying, the people wounded, the people terrified, screaming, running, unable to will themselves to do anything, unsure what at all they could do, what they can do. It's the shooter. The responders. The shooter's family. The victims' families. The survivors' families. It's inescapable and unavoidable and mumbled and jumbled together; I'm terrified and disappointed and furious and lonely and grieving and resigned and shocked and waiting and desperate and sad and thankful and worried and anxious and aching allatonce. There's no logic to it. No cool, distanced objectivity. No capacity to make intellectualized arguments about the politics, the religion, the circumstances. There's only this untamed state of heart.

Language is far too inadequate a vehicle to fully describe this. But right now, it's all I have.

I'll throw myself into my writing.

If I keep myself busy, maybe I can forget.

This happens every time. The media uses the same words each time it happens. Senseless. Tragic. Horrific. Those words are so shallow now. They fail to convey even the smallest portion of what this is, what this means, how we feel. Language is too blunt and imprecise a tool.

There will be too many funerals next week, the week after, that should never have happened, shouldn't have to be planned, arranged, and paid for.

And I'm waiting. I'm waiting for it to happen. It hasn't happened yet, but I know it will.

Someone, somewhere is going to say that the killer was autistic. Or mentally ill. Or insane. Or sick in the head. His lawyers are going to take their cue from the media, from comments on the internet, from past cases, and they're going to put it into their arguments, whether or not there is any documentation about his disabilities or lack thereof.

When these things happen, there's always a second round of victims. And that's us, the neurodiverse. And we wait for it to happen because we know it will. It always does. Ableism is the inevitable byproduct of tragedy. And sometimes it comes from our own communities. I hear it from the mouths of some of my fellow Autistics, when they in the same breath reject the suggestion that a perpetrator is Autistic while declaring that he is just mentally ill. I hear it from parents, from journalists, from casual acquaintances. And every time, it cuts deeper, reopens the torrent of unidentifiable emotions mangled together in a bizarre and incomprehensible mezcla. It's a personal fitnah for me.

How can I begin to process that? I can't bring myself to read any more of the news because I dread seeing the accusation in print, in neat little quote marks where someone remarks callously, always so callously, that only someone who is mentally ill could do something so horrific and appalling.

No.

No. No. No. Your words hurt. Your words cut and damage and taint real people's lives, real people who suffer the indignities and consequences of your ableism, real people who are denied access to education and housing and employment and even relationships because your words hurt and people don't forget.

Don't use these times to perpetuate ableism. We already suffer enough for it.

It's coming. And there's absolutely nothing that I can do to stop it except wait for my emotional crucible to overflow again and pray for respite and focus. All I want to do is weep.

10 July 2012

Letter to Rhode Island Commissioner Gist

Note from Autistic Hoya:
This is a guest post from Andrew Collins, who is the co-chapter leader of the Autistic Self Advocacy Network Rhode Island, a member of the Governing Board of the National Youth Leadership Network, and a member of the Arc's Expert Advisory Committee. Formerly, he was the Public Relations Intern for Looking Upwards, Inc. 

_____________________________

Dear Commissioner Deborah Gist,

My name is Andrew Collins, Portsmouth High School class of 2012. Receiving my diploma was quite exciting—certainly one of the best moments of my life! I am writing to you because I feel as though this is a moment of glory every child should bask in.

I know you’ve heard much about this topic already, but please take the time to finish this letter. I hope that my personal example will be more effective than the angry calls and petitions. When I heard about the new diploma system, my excitement was inhibited by sudden sense of relief and fear; relief for being fortunate enough to pass the NECAP in 2012, but fear for those who may be receiving a certificate. I, a special education student who had received 4s on the reading and writing portion of the NECAP and nearly a 1 on the math portion, could have, on the right year and a bad day of testing, been one of the people who would be receiving the certificate in the new diploma system.

You were quoted in saying: “A piece of paper is not going to make a difference for a child, for any child in our state." Personally, getting a certificate instead of a diploma would have ruined me. Despite all your qualifications, you are not qualified to speak on behalf of every child in the state. I’ll say the same thing now that I said back in one of your 2011 hearings: this diploma policy fails to take into account the obvious emotional impact getting a certificate instead of a diploma would have on a diligent student, dismisses the fact that colleges and employers will notice the difference between certificates and diplomas, and assumes the state’s behavioral and academic support programs work well enough to ensure any hard-working student can meet the NECAP standards.

I just came out of the public school system as a special education student. I know what it’s like in there. My academic support program (it was an IEP) never really managed to get a handle on my learning disability in math; in fact the only reason I hardly managed a partially proficient score on the math section is because, as someone who has been tested as an intellectually “highly gifted student,” I managed compensatory strategies. A neurologically disadvantaged student who is neither bright enough to manage compensatory strategies nor fortunate to have a perfect support program is, speaking candidly, thrown under the school bus by the weight you place on the NECAP. Also, a student such as this or myself would almost never be able to earn your commendation on our diplomas, given we can get them. The fact that your commendation is only given to high-testing students is just another goal placed out of reach for disabled students. Instead, commend your students on their integrity, diligence, and passion.

Any way you look at it, people such as myself may be getting certificates solely because of learning disabilities we are neurologically incapable of overcoming. Being handed a certificate instead of a diploma, besides the obvious disadvantages it would put an otherwise bright person at, will in fact make an incredible difference. It would be one final, lasting, and forever inescapable branding of academic insufficiency and neurological abnormality. We’ve had our challenges; give us what we’ve earned.

Sincerely,
Andrew Collins

03 July 2012

How Autism Speaks Must Change

Editorial note (February 2014): I became aware that my original phrasing in this post, in disavowing the HIV/AIDS community, was a reflection of disability hierarchy, just as when physically disabled activists say their minds work fine or when autistic activists say they don't have intellectual disabilities (aren't "retarded") or aren't mentally ill as part of horizontally ableist attempts to validate their own identities. My original wording demanded that Autism Speaks apologize for dehumanizing and offensive language, including comparisons of being autistic to having AIDS. That was wrong, and I would like to apologize to any people who are HIV-positive or have AIDS who were re-traumatized or hurt by my original language in this post. 

To those who find my criticism of Autism Speaks too harsh, and to those who insist or are resigned into accepting that Autism Speaks will always exist and must change rather than disappear, if Autism Speaks were to make an absolute sea change, I would accept it under the following terms and no less:

1.) Adopt a community-based participatory research model for all grant review. Specifically, at least 55% of all scientific advisory boards and grant review panels must be comprised of Autistic people (who can sometimes also be parents, professionals, or researchers), while the remaining members may be non-Autistic family members, professionals, and researchers. Furthermore, these boards and panels must have actual decision-making power.

2.) Autistic people must be meaningfully represented and included throughout the organization's leadership. Specifically, the national Board, all local or regional Board, and all advisory councils must meaningfully include Autistic people as at least one-third of the members or appointees at a basic minimum, with the targeted number at 55% representation. Those members must have equal decision-making power as non-Autistic members. Furthermore, Autism Speaks must hire competent and qualified Autistic people at all levels of the organization, from entry-level positions to the top ranking executive positions, without regard to communications differences, and these people must not be tokens, but must have legitimate decision-making power. Additionally, Autism Speaks may choose to create a supplementary advisory committee comprised entirely of Autistic people, provided that that body has meaningful decision-making power.

3.) Research priorities must shift toward the needs and desires of Autistic people. Specifically, funds set aside for research must be allocated toward research on topics such as integrated and inclusive education, integrated and supported employment, supported and independent living, access to healthcare, sensory integration issues and therapies or coping mechanisms, augmentative and alternative communication, discrimination in employment and housing, postsecondary and workforce preparation and outcomes, person-centered and individual-directed transition planning, and abuse of Autistic people by caretakers and service providers. Furthermore, research that focuses on identifying the etiology or specific genetic causation of autism, environmental "risk" factors, development of a prenatal screening, or recovery or cure should not be pursued as this is not research that will benefit the millions of Autistic people alive now, many of whom do not want to be cured, including many Autistics with very significant disabilities. Research that focuses on improving quality of life and removing barriers to access should become the only priority.

4.) Materials produced by the organization must only provide accurate, positive, and objective information. Specifically, any fundraising campaigns, public service announcements, informational sheets, or other materials must focus on acceptance and understanding of Autistic people instead of framing our lives as tragedy or pity narratives. Materials must move away from exclusively deficit-based language, fear-mongering statistical comparisons or analogies, or otherwise dehumanizing or othering language. Additionally, Autistic people must be consulted and meaningfully included throughout the development of any fundraising, promotional, or informational materials. Furthermore, Autism Speaks must apologize for previous dehumanizing and offensive language in organization-sponsored public materials, including the rhetoric used in "Autism Every Day," "I Am Autism," and the constant comparisons of the likelihood of being Autistic to the likelihood of a child dying in a car crash, being struck by lightning, or otherwise dying. Additionally, Autism Speaks must repudiate all remarks that appear to lend credence to the debunked vaccine-causation myth.

5.) Advocacy priorities must shift to those accepted and pursued by mainstream disability, disability rights, and self-advocacy organizations. Specifically, advocacy must focus on establishing policies and practices at both the national and local levels that promote equal access and opportunity for Autistic people in education, employment, housing, healthcare, and civic and community life, which is often achieved by varying levels of supports and services appropriate to each individual. Regardless of whether Autism Speaks takes a more "activist" role in this sense, funding allocated toward advocacy must be reviewed and approved by Autistic people. Furthermore, Autism Speaks ought to be supporting measures to end segregated education, restraint and seclusion, aversive punishments, inequity or inaccessibility in healthcare, sheltered workshops, or institutionalization.

6.) Autism Speaks must undertake an effort to reform its finances and budget. Specifically, executives and employees must be paid fair wages commiserate with their qualifications and duties, and with consideration that the organization is a non-profit, not a private corporation. As few funds as possible should be allocated toward fundraising, as the majority of funds ought to directly support and benefit Autistic people.

7.) The organization must partner and collaborate with national and local cross-disability and disability organizations in order to promote research, programming, and advocacy that align with the priorities of Autistic people, as expressed by such established organizations as TASH, the Autistic Self Advocacy Network, and the Autism National Committee. Furthermore, the organization must make all effort to educate its employees, members, and volunteers as to both the changed priorities and practices, and the reasoning behind them.

Until all of these things happen, I will never be able to withdraw my indictment of the organization. I am willing to talk to whomever will listen, but I will not forget the repeat offenses that Autism Speaks has accumulated. Autism Speaks has the opportunity to make a sea change in its philosophies, policies, and practices, but a partial reformation will be no reformation.

01 July 2012

Georgetown: Say No to Autism Speaks

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.