Friday, August 29, 2014

Problematizing the Down syndrome & selective abortion debate

Richard Dawkins caused controversy last week for an offensive tweet about Down syndrome, prenatal screening and selective abortion. In what is becoming somewhat of a predictable pattern, Dawkins said something offensive, tried to argue his opinion was based on logic, then after facing significant backlash offered a sort of sorry-not-sorry ‘apology.’

In this ‘apology’ he framed his position as one of science and ‘ours’ as one of ‘emotion.’ While he suggested his position defended women’s rights, subtle reminders throughout his ‘apology’ that linked disability, a mother’s choices and actions, and notions of morality contradicted this. His ‘apology’ was problematic in too many ways to count.

In this ‘apology’ he argued his position on selective abortion follows the logic of being pro-choice, as if the rights of women and persons with disabilities are necessarily separate. To follow this logic being a feminist, having a disability, and being a mother are all separate and distinct identities. This is of course not true.

He also argued he likely holds the moral high ground, as his position would reduce the suffering of others. At the same time he suggested knowingly bringing a child with Down syndrome into this world naturally perpetuates ‘suffering.’ This is also untrue and upholds ableist notions that link disability and suffering.

Furthermore, ‘proof’ of his logic rested on stereotypes of adults with Down syndrome as perpetual children, and the false assumption that having a child with Down syndrome means a lifetime of care for parents. This ignores a growing body of research that that rejects notions of care based on the separation of independent and dependent bodies. This also ignores the reality that persons with Down syndrome are contributing in real and meaningful ways that don’t fit this limited understanding.

Finally, he suggested that while he is sympathetic those of us that oppose his position, our arguments are based on ‘emotions’, and his are based on logic. In stating this he makes the assumption that what he knows of Down syndrome is based on ‘logical’ unbiased scientific evidence. Yet John Langdon Down, often uncritically referred to as the ‘father’ of Down syndrome, grounded his understanding of Down syndrome on racist ideas that argued Down syndrome was a genetic throwback to less evolved races. It’s a conveniently ignored fact that the ‘father’ of Down syndrome based his opinion of Down syndrome on notions of white supremacy.

The reality is that the ‘logic’ of science Dawkins is so keen to draw from has consistently been wrong where Down syndrome is concerned. It was wrong when people with Down syndrome were euthanized, it was wrong when it called for and achieved their mass incarceration, and it was wrong when it forcibly sterilized young adults. While a discussion about the ethics of prenatal screening and selective abortion needs to take place, to assume this discussion can take place without serious and critical reflection around the ‘logic’ shaping these discourses is illogical.

Thursday, July 17, 2014

Disability Visibility Project: Sharing Individual Stories to Preserve Disability History

Thanks to social media, I recently learned about an important grassroots initiative in the US to gather stories from persons with disabilities about their experiences. To celebrate the upcoming 25th anniversary of the American with Disabilities Act (ADA) in 2015, the Disability Visibility Project is encouraging persons with disabilities to have their stories recorded and available to the public in an effort to preserve and make these histories accessible.

Founded by Alice Wong in 2014, stories from Americans with disabilities will be collected and archived at the American Folklife Center at the Library of Congress. Persons with disabilities who want to participate can make a reservation with StoryCorps San Francisco and record their story. By tagging their interview as part of the Disability Visibility Project, individual stories will become part of a larger grassroots tapestry that will highlight the lived experience of disability.

As a researcher, the appeal of initiatives like this are in their power to position persons with disabilities as the experts in their own experiences and needs. Additionally, individual stories are important as they help counter the existing history of disability – which is largely dominated by a medical model that erroneously frames disability as an individual tragedy and/or uniform experience. Documenting and sharing individual stories counters this problematic history through the preservation of narratives that celebrate the knowledge, skills, and individual and collective power within this diverse community.

I had the opportunity to briefly speak with Alice Wong about this important project, below are some of her answers.

Q: How did this project start?

A: I went to a StoryCorps event in San Francisco and they talked about the various community partnerships they had with different groups. I went up to them and asked if they’ve had any partnerships with any disability organizations and they said not yet. It sparked an idea that I could do something with StoryCorps about disability history with the upcoming anniversary of the ADA in 2015.

Q: Can you speak to what you believe to be the power behind sharing personal stories?

A: Talking and sharing about your life with someone is a powerful act. It’s an act of bravery to reveal your thoughts and emotions with someone. When you’re vulnerable and open yourself to an intimate and honest conversation, these interactions can change lives and this can have a ripple effect among the people around us. 

Q: The project celebrates the upcoming anniversary of the ADA, what do you think are some of the most significant accomplishments of this legislation?

A: The ADA prohibits discrimination of people with disabilities and mandates equal opportunity and access in some of basic life activities (e.g. employment, transportation, public facilities and government services). While there have been many important pieces of legislation impacting people with disabilities such as the Rehabilitation Act of 1973 and the Individuals with Disabilities Education Act, I think the ADA is ‘our’ civil rights law that identifies us as a protected class, this means that we have some basic rights and that there are legal means to ensure those rights when they are violated. It’s not a perfect law (no law is), but it provides a tool to advocate for full participation in society.

Q: Lastly, while the collective benefits of the Disability Visibility Project are clear, what are some of the individual benefits for participants?

A:  I hope people have fun with this experience—there are no rules on what a person should talk about. Ideally, two individuals who know each other well will take some time to have a conversation about things that are important to them such as their connection to each other or their passions in life. Overall, I’d like people with disabilities to celebrate and discuss their lived experiences because every story matters.

To learn more about how to participate in this project visit the project website or Facebook page.

Friday, June 6, 2014

Disability Incarcerated is Out!

Disability Incarcerated has finally been released and includes a forward by Anglea Y. Davis. 

Available in hardcover and paperback. 

Check out this link to the promotional flyer to get 20% off! 

Wednesday, March 19, 2014

Disability Incarcerated: Imprisonment and Disability in the United States and Canada

Set to be released May 14, 2014 "Disability Incarcerated" has a great collection of interdisciplinary scholarship examining the incarceration and segregation of people with disabilities the United States and Canada. 

Some wonderful pieces in this collection, including (shameless self-promotion) a chapter I was fortunate enough to co-author with Jijian Voronka titled "Remembering Institutional Erasures: The Meaning of Histories of Disability Incarceration in Ontario."