Against eugenics, and for a future that includes autistic and disabled people

Blogging Against Disablism Day 2017

In 1993, autistic advocate Jim Sinclair wrote “Don’t Mourn For Us.” It read “This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be… Don’t mourn for us. We are alive. We are real.” It appeared in the Autism Network International newsletter as an outline of a conference presentation they had given to parents of autistic children.

There are still many people and organizations who believe that autistics should be mourned for in life, rather than death; that there needs to be a way to find the ‘normal’ child who has been lost to autism, or prevent more autistic people from existing – cure culture. Cure culture creates dangerous dynamics, in which there is a strong focus on “fixing” autistic people, along with “battling” and “eradicating” autism. This culture also creates fear of autistic people and traits. One of the sources for the common cure culture we still see today lies in eugenics, a movement that gained popularity in the early 20th century.

It has been twenty-four years since “Don’t Mourn for Us.” We have made much progress. These include advances in representation, such as Julia the autistic Muppet and the company Apple putting out autism acceptance ads. Disability rights appeared on the political stage in a major way in 2016. The Autistic Self Advocacy Network, founded in 2006, has already become a significant player in national public policy. There have been pieces of legislation – like the 2010 Affordable Care Act – that benefit many autistic people, along with court rulings favoring disability rights and inclusive education. The Centers for Medicare and Medicaid Services issued an HCBS settings rule in 2014  that aims to give people with disabilities support in real community settings. Lindt Chocolate stopped donating money from their chocolate bunnies to Autism Speaks. And there are more victories, large and small, I could name.

But some of the largest autism charities in the nation, such as Autism Speaks, are still ones that reject advocacy by autistics, and some people still believe in discredited theories of causation and quack cures. But more disturbing is the eugenics ideology being seen in US politics, and around the public conversation on disability – an example being immigration restriction. The ideas behind eugenics say that behind the moral failings of people – and of society – there is a hereditary cause. Some people, supporters of eugenics argue, are “born to be a burden on the rest.” Conversely, supporters of eugenics also believe there are genetically and morally superior individuals.

As Sarah Jones writes for New Republic: “But eugenics, though discredited, has never been abandoned. In fact, the most powerful people in America appear to enthusiastically embrace the idea that humans can be divided into inherently superior and inferior specimens and treated accordingly… Of course, none of the people in Trump’s inner circle would describe themselves as eugenicists. They would call themselves capitalists, patriots, and Christians.” Examples include Trump’s statements on genetic superiority, Steve Bannon’s desire to “limit the vote to property owners,” and Jeff Sessions’ support for the 1924 Johnson-Reed Act – an immigration restriction law heavily influenced by eugenicists.

And Jones is right. Eugenics ideology is rampant, but I have not yet seen any political figures actually proclaiming themselves a eugenicist. Eugenics has a bad, discredited name to it now, and it’s more persuasive to masquerade under the guise of “Make America Great Again” then outright call oneself a eugenicist. It’s more convincing to cloak eugenicist views in words and actions that make people feel proud, to appeal to people using discriminatory views without ever saying one is endorsing eugenics.

As ASAN’s executive director Julia Bascom wrote for Slate about the Trump administration, disability, and the autistic community,

He sees my community as damaged goods. Recent reports indicate that, in addition to meeting privately with anti-vaccination groups, the Trump administration may convene a task force to relitigate the clear and settled science on this issue, potentially headed by noted anti-vaxxer Robert Kennedy Jr. Like so many of his policies, this isn’t just an issue of a lack of respect for people with disabilities—we cannot forget that this dishonest and unscientific nonsense has a body count.

This administration espouses eugenicist views. This administration buys into dangerous causation theories. This administration sees us as a public burden. Eugenicist views run through so much of the history of cure culture and causation.

Eugenics is a threat to the autistic and disability communities, and it is a threat to so many others.  This threat is palpable as the White House and Congress try to strip 24 million Americans, many of whom are disabled, of life-saving health insurance. It is clear in a leaked draft of an executive order targeting disabled immigrants and their families. We don’t know if Jeff Sessions’ Department of Justice will enforce the 1999 Olmstead ruling, which helps keep states moving toward community integration – along with the Medicare and Medicaid funding that is at risk. It is evident when the White House lights it up blue for Autism Speaks’ brand of awareness rooted in harmful rhetoric and support for causation research.

But, as ASAN’s statement on the White House lighting it up blue reads, “ASAN will not let our community be forced back to the too-recent time when the public consensus was that autistic people should not exist.” I’m with them. The autistic community, and the disability community, must fight as we are able to against eugenicist and discriminatory policies and attempted actions. We cannot go back to being seen as nothing but a collection of causation theories, damaged and broken and in need of “fixing.” And we must fight against any policies that promote prevention research, policies that tell us we should not be part of humanity’s future. Because we are part of the future.

Blogging Against Disablism Day 2015: One of the Lucky Ones?

(Please visit http://tinyurl.com/BADday2015) for more Blogging Against Disablism Posts)

I’m one of the lucky ones. I’m one of the lucky ones. Maybe. I do feel invisible. Mostly I feel lucky because I’m about to graduate. Here, have some official statistics of disability in higher education in the United States:
  • Students with disabilities represented nearly 11 percent of all postsecondary students in 2008, according to a federal survey.1
  • The graduation rate in 2013 was “approximately 26%, half of the rate of students without disabilities.”2
  • The National Council on Disability reported in 2003 that “ Resources in higher educational institutions are often inadequate, leaving disability service units in the position of having to make decisions based upon budgetary considerations rather than upon proven effectiveness (NCSPES, 2000).”3
  • The National Center for Education Statistics reported in 2009 that “a few of the barriers cited by institutions as hindering implementation of Universal Design to a moderate or major extent were limited staff resources to provide faculty and staff training on accessibility issues (52%).”4
  • Since many schools are understaffed, the importance placed on “school disability services offices collaborating with other campus offices, such as academic departments, counseling centers, financial aid, housing, student activities, special events, and career services, to provide the full range of services that students may need” becomes strained.5
  • Many schools also do not have the proper resources in place to support students with varying psychological health needs.6
  • In a report by the Association for the Study of Higher Education in 2013 on students with disabilities, it found that “students with disabilities may feel invisible on college campuses.”7
    • A solution to this, according to ASHE, is social change: “institutions must also move to create social change in their campus communities. The perception of students with disabilities must change in those individuals who do not identify with a disability.”8 It also indicated that “self-advocacy was a large component of their success, but it did not come easy.”9

But I’m one of the lucky ones, I’m graduating. I’m graduating. But I still feel invisible.

Because it is a double-edged sword. Being told to self advocate and then when you do, being told that you are hostile. I still feel invisible because I am not considered a minority. Disability is not considered a culture, though we got the disability group on campus into the cultural organization coalition. I do not see myself on campus. I see other people being far more successful academically. I see other people and few people disclose any disabilities on my campus.

I do. I do. I disclose at every opportunity. I tell them, “I’m Autistic,” and I gave speeches in my speech class in 2014 on autistic self advocacy, but I don’t think they believed me and my social model of disability. I don’t think they believed that I could have meltdowns and shutdowns and not be able to talk sometimes. I don’t think they believed that the nonspeaking Autistic community could have a quality of life and want their lives because someone else was presenting on autism on the basis of her cousin being “low-functioning,” a term that is degrading and dehumanizing and ignorant of the facts of autism.

Places of higher learning must create social change. A community where people can disclose.

Places of higher learning need to care and devote budgetary concerns to programming and to having more than one staff person in their offices and concern themselves with more than straightforward academic concerns. Disability needs to be included at every turn everywhere that proclaims diversity and forced to be included in anywhere that does not even try to claim diversity.

Because I say to any place that tries to claim me as a diverse statistic: you cannot and may not, unless you are trying to include me and my disabled peers. I will tell the world you are not diverse in this regard.

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1 Government Accountability Office, “Higher Education and Disability,” 2009. http://www.gao.gov/new.items/d1033.pdf

2 ASHE Higher Education Report, “Disability of College Campuses: An Overview,” 2013.

3 National Council on Disability, “People with Disabilities and Postsecondary Education — Position Paper,” Sept. 2003: http://www.ncd.gov/publications/2003/Sept152003

4 National Center for Education Statistics, 2009. http://nces.ed.gov/pubs2011/2011018.pdf pg. 4

5 Government Accountability Office, “Report on Higher Education and Disability,” 2009. http://www.gao.gov/new.items/d1033.pdf

6  Ibid.

7 ASHE Higher Education Report, “Disability on College Campus: An Overview,” 2013.
8 Ibid.


9 Ibid.