Lydia Brown Takes Us Around Autistic Community Politically & Culturally
Leroy Moore: Lydia, I saw your powerful video about the resent killings of people who are autistic by love ones and care takers. What has been your work around this issue?
Lydia Brown: Unfortunately, the very people who ought to be most supportive in their lives routinely murder autistic people. This is a common trend across disabled populations and is by no means a unique phenomenon in the autistic community. The video to which you refer was filmed at the Autistic Self Advocacy Network’s second annual vigil in Washington DC, as part of a National Day of Mourning for disabled people murdered by family members or caregivers—this event has been coordinated both years by Zoe Gross. I hope to be able to lend my voice to the fight against such gross injustices against disabled people. If my words or my work or even my very existence might lend credence to the unfortunately radical idea that disabled existence is no less worthwhile or valuable than able-bodied, neurotypical existence, then I may well succeed in some small way in turning the tide against the attitudes that dehumanize us and lead to our murders.
Leroy Moore: Being a person of color is it harder to get your ethnic community around disability issue and have you experience racism in the autistic community?
Lydia Brown: I am in a unique position where I am a transracial adoptee—my parents are white. As a result, I have largely been disconnected from the Asian, Asian-American, and Chinese communities, and find myself at times a stranger everywhere. That said, I have experienced casual racism and micro aggressions in both the autism and autistic communities. For example, discussions about social attitudes toward autistic people or availability of support services frequently center and privilege North American and Western European perspectives while systematically dismissing and de-legitimizing (or else, tokenizing or appropriating) perspectives from communities outside the white North American/Western European experience. Ableism is also frequently compounded by racism and classism that result in public policies on service eligibility and provision that disproportionately deny access to necessary, quality services for autistics of color and poor autistics. Partially as a result of this phenomenon, white, upper-class autistics and their families are much more likely to be able to successfully advocate for necessary services or against unjust actions than poor autistics and autistic of color and their families.
Leroy Moore: You describe yourself as a Radical Leftist please explain.
Lydia Brown: As one of my friends (who identifies as a progressive, liberal Democrat) put it, I apparently make her look conservative. I use the term “radical leftist” to describe myself because it’s about as accurate and descriptive as I can get without resorting to labels associated with particular ideologies that may or may not align with my particular beliefs. My politics are heavily influenced by Marxist pedagogy (though I’m not a Marxist), in that I am concerned with a transformative vision of social justice that moves beyond an upper-class, white, cis-het, liberal politic and toward a pedagogy of unlearning oppression by deconstructing imperialism and postcolonialist social structures and rhetorical constructs. I analyze societal institutions, cultural locations, and social structures in terms of axes and hierarchies of oppressive systems, intersectionalities of oppression and privilege, and identity politics.
Leroy Moore: You work at the Disability Cultural Center at Georgetown University. What has the center done and is doing?
Lydia Brown: The Disability Cultural Center does not exist yet. I am leading the initiative to establish and sustain a Disability Cultural Center on campus. The purpose of a Disability Cultural Center will be to coordinate, sponsor, and fund educational and social programming on disability pride and power, disabled identity and culture, and disability community and history. This fall, we formed a planning committee for the future center comprised of members of the Georgetown University community and stakeholders in the surrounding Washington DC area. Currently, the committee is working to spread awareness of the initiative, garner support from community stakeholders, and write the formal proposal for the establishment of the center.
Leroy Moore: Do you think legislative avenues must solve all of our problems?
Lydia Brown: Certainly not. Legislative advocacy and public policy work are important and have their place, but these are by no means monolithic solutions to systemic problems. In fact, disabled people face many problems for which legislation or policy changes pose no solutions. For example, a state could pass a law regarding hate crimes on the basis of disability (perhaps by enumerating disability status of a victim as an aggravating factor in an offense motivated by hate), but the existence of that law—even if enforced—would not end the epidemic of hate crimes against disabled people. It certainly would do nothing to address the systemic socialized and acculturated ableism that leads to them.
Leroy Moore: What do you think of all of this right and left wing media on this so called high rates of autism and other mainstream media frame around autism?
Lydia Brown: Fear-mongering has always been a common rhetorical tactic in constructing disability as something pitiable, undesirable, and threatening. Sadly, discussion of autism in the mainstream media frequently falls into the same tired tropes. This type of public discourse leads to a callous disregard for the value and dignity of autistic existence that disproportionately funnels millions of dollars into cure-oriented (that is, eugenics) research while severely neglecting research on quality-of-life issues across the lifespan. It would be almost laughable if the same rhetoric didn’t directly contribute to the attitudes that enable judicial officers and the media to justify and excuse the perpetrators of hate crimes against autistic people.
Leroy Moore: Would you ever think about running for political office and do you think a disability activist should run for office?
Lydia Brown: It’s not out of the question, but it’s certainly not an idea to which I’ve given too much thought. As I mentioned earlier, public policy advocacy on issues that impact disabled people is unquestionably important and necessary. Holding elected office could provide a disability activist a robust platform for addressing much-needed policy reform from an insider’s position, though such a decision should be undertaken with consideration to the significant amount of time and effort that must be invested for a successful political campaign, as well as both the potential advantages for and barriers to effecting meaningful change. It’s definitely not a choice for everyone, but yes, we should be able to participate directly in the policy-making process.
Leroy Moore: Do you think people see the cultural, art, advocacy and stories of people with autism?
Lydia Brown: Outside the Autistic community? Generally not. The predominant narrative of the lives of autistic people—when we are the narrators, rather than those around us—is what is known as the self-narrating zoo exhibit. This phrase encapsulates the prevailing notion that the only appropriate and legitimate narrative any autistic person has to share is that individual’s personal and private experiences as an autistic person, and that our theories and musings on politics, identity, culture, philosophy, or policy are inappropriate, unnecessary, or somehow illegitimate. When mainstream media does recognize the advocacy work of actually autistic people, it is usually presented like inspiration porn—a feel-good, human interest story that exploits the trope of disabled people as mentally defective and infantile by portraying anything we do as extraordinarily special and sweet simply because we are disabled. There are a few exceptions to these trends, but unfortunately, they have yet to enter the mainstream. Spaces like the Autism National Committee’s annual conference (AutCom) and the University of New Hampshire’s Autism Summer Institute often provide grounds where autistic people immersed in autistic culture engage with non-autistics genuinely concerned with becoming effective allies. Other spaces where Autistic culture flourishes, like Autreat and many small, private email lists, are largely unacknowledged by the neurotypical majority and provide spaces centered around Autistic people.
Leroy Moore: What are the main campaigns that you see are important to your community?
Lydia Brown: - Ending hate crime
- Ending healthcare discrimination (especially with regard to denial of life-saving treatment)
- Closing institutions and abolishing segregated schools, workplaces, and residences
- Ending abusive practices in educational and treatment settings (including restraint, seclusion, and aversive)
- Developing more equitable policies and practices for equal access and opportunity in housing, education, and employment
- Expanding access to augmentative and alternative communication for both autistic children and adults
- Shifting research dollars toward quality-of-life and lifespan issues
Leroy Moore: Tell us about the work of The Autistic Self Advocacy Network and what are they working on now?
Lydia Brown: This month, ASAN is launching the Autism Acceptance Month website (www.autismacceptancemonth.com) as part of a history of campaigns by autistics and allies to rebrand April from Autism Awareness Month to Autism Acceptance Month. ASAN is also sponsoring the Loud Hands Project (spearheaded by Julia Bascom), which is a transmedia celebration and collection of Autistic culture and community that released its first product, the Loud Hands: Autistic People, Speaking anthology, this past fall. ASAN is also a partner for the new National Center on Leadership for the Employment and Economic Advancement of People with Disabilities (LEAD Center), and will be collaborating with a number of key disability rights and employment organizations to develop resources and provide technical assistance on fully integrating disabled people into the workplace. More recently, ASAN released a policy brief on organ transplant discrimination against disabled people that can be found on the website at www.autisticadvocacy.org. Further information about ASAN’s projects is also posted to the website.
Leroy Moore: Do you think that disability studies do a good job in teaching about people with autism and what they have provided in our communities?
Lydia Brown: When done right. Disability studies courses that actually emphasize and center the perspectives, theories, literature, and histories of disabled people—in this case, autistics—do well in countering ableist structures in academia that typically marginalize those perspectives while privileging able-bodied neurotypicals. Unfortunately, not all disabilities studies courses remember to do this, particularly in regard to autism, and frequently fail to acknowledge the agency, competence, contributions, and relevance of autistic authors, scholars, and theorists.
Leroy Moore: Have you been following police brutality/killings of people with autism?
Lydia Brown: Unfortunately. The area where disability policy intersects with criminal justice policy has long been an interest of mine, and is actually where my own advocacy began. Motivated by a concern for the potential and actual violations of the rights of autistics (and other developmentally disabled people) like me, I wrote legislation in Massachusetts that would mandate training about autism for all law enforcement and corrections officers in the state in 2009 that was filed for the third time this January. As part of my research prior to writing and filing the legislation initially, and as part of my advocacy now, I have been monitoring cases of wrongful confessions, wrongful arrests, police brutality, and police shootings and killings of autistics across the United States. I have a pretty thick binder sitting on my desk where I’ve printed about one-third of the news articles, police reports, and other materials pertaining to these cases. It’s a pretty depressing binder.
Leroy Moore: How can people support your work?
Lydia Brown: - Read writings by autistic people. Loud Hands: Autistic People, Speaking has an excellent collection of the foundational documents of our community as well as some of the best contemporary essays and blog posts as well.
- Take ASAN’s Autism Acceptance Month pledge not to participate in panels, conferences, or other events about autism that exclude autistic people.
- Donate money to organizations that actually represent and support autistic people. (Other than ASAN, the Autism Network International, the Autism Women’s Network, and the Autism National Committee all do good work; the cross-disability organizations TASH, Not Dead Yet, and the National Council for Independent Living are also good places to send money.)
- Find out what the laws are where you live about restraint, seclusion, and aversive. If the laws aren’t strong enough to protect disabled people from these abuses, contact your lawmakers and ask them to propose new laws that will.
- Find your local chapters of disability rights organizations or the nearest ASAN chapter, and ask what you can do to support their projects and campaigns in your own community.
Leroy Moore: What websites and other social networks that have strong politics and culture of people with autism?
Lydia Brown: The Autism Network International has a wonderful website at www.autreat.org, which is also the website for their annual retreat-style conference for the Autistic community. ANI also hosts a list-serv that’s been around since the 1990’s. The archives at http://archives.autistics.org provide an insight into the history and continual development of Autistic culture. ASAN’s website, at www.autisticadvocacy.org, tends to be more politically focused, though Julia Bascom’s Loud Hands Project (an initiative of ASAN) will become an ever-expanding transmedia celebration of Autistic culture.
LM Any last words?
Lydia Brown: Earlier today, medical staff at a hospital attempted to dissuade a prominent disability rights activist who is also Autistic from receiving a routine but life-saving treatment on the basis of disability status. Within the last week, a young man who murdered an autistic, gay acquaintance by dousing him in oil and setting him on fire received an appallingly lenient sentence of three and a half years in prison for the crime. These are both examples of the deadly consequences of ableist attitudes that devalue disabled lives and dehumanize disabled people. The struggle for Autistic rights is part of the struggle for disabled rights, which in turn, is part of the struggle for universal human rights and transformative social justice. For as long as teachers can restrain and seclude, clinicians can shock and traumatize, and family members and caregivers can abuse and murder with impunity, our struggle will not be over.
lydia@autistichoya.com.
Photo from the vigil was taken by Kory Otto-Jacob.