In conversation: Karen Nakamura on 25 years of the Americans with Disabilities Act

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The Americans with Disabilities Act (ADA), the most comprehensive federal civil-rights statute protecting the rights of people with disabilities, celebrates its 25th anniversary this year.

The ADA addresses the rights of people with disabilities in the areas of employment; state and local government facilities and services; public accommodations; telecommunications; and transportation. The ADA strives to protect people with disabilities from discrimination, and also to enable them to fully participate in their communities and the workforce.

Karen Nakamura, associate professor of anthropology and East Asian studies and chair of Lesbian, Gay, Bisexual, and Transgender Studies, is the author of “A Disability of the Soul: An Ethnography of Schizophrenia and Mental Illness in Contemporary Japan” and “Deaf in Japan: Signing and the Politics of Identity, and the director of two films. She recently spoke to YaleNews about the accomplishments of the ADA over the past 25 years, what can be improved, and why the disability rights movement is so strong in Japan.

An edited version of the conversation follows.

How did you become involved in researching disability rights?

When I came to Yale to pursue my Ph.D. I planned on focusing on lesbian and gay issues in Japan. I switched topics to look at deaf politics because the issues facing deaf people were very similar to those faced by gay and lesbians. Many deaf people do not have parents who are deaf themselves just as those of us who are gay or lesbian do not necessarily have parents who are gay or lesbian. So whatever sense of identity that you get from being deaf, or from being gay or lesbian, has to come from someone other than your parents. I looked at the changes in identity in the deaf community over a 100-year span in Japan and how the attitudes toward language and the institutional structure for deaf people shifted, as well as how that led to different political mobilizations and social structures. That was the project that took me through graduate school and was the focus of my first book, “Deaf in Japan.”

Karen Nakamura
Karen Nakamura

What major achievements in disability rights have taken place since the inception of the ADA 25 years ago?

There are many reasons to celebrate the 25th year of the ADA. It was the result of a long civil rights struggle for people with disabilities and for the past 25 years the ADA has been very effective for physical access to infrastructure. When it first came out in 1990, it was one of the most progressive laws anywhere in the world.

How can the ADA be improved?

There are many areas of the ADA that need to be improved. The ADA is very weak in terms of psychiatric and developmental disabilities. In addition, the ADA is particularly weak in protecting disabled people from employment discrimination. Part of the difficulty is that the ADA defined disability as something that affects a major life activity, but for a long time the courts interpreted “major life activity” as “being able to work,” so it was an oxymoron if you were disabled and wanted to work. This made it very hard for disabled people to find and keep jobs. Many disabled people only get health care if they don’t work, which means that the system prevents them from getting jobs. There is a huge correlation between disability, poverty, and race that needs to be addressed in the USA.

I am always disappointed at how few people with disabilities manage to make it through graduate school and become professors. And this holds true for people with disabilities of all kinds. Not counting people who are disabled because of old age, I know of only one physically disabled faculty member at Yale — and I think that I am the only person who openly identifies as having a psychiatric disability. So that would be two out of 700 or so faculty. Of course, there may be many more folks in the closet, but that is part of what saddens me about the situation for persons with disabilities. It’s ironic that I’m currently chair of LGBT Studies – as 30 years ago, it was same situation with gay and lesbians in that a very small handful faculty were out of the closet as gay at Yale at the time.

What projects are you currently working on?

One of my projects is thinking about the broad category of “disability” and what it means. Who falls inside and outside of that category? I became interested in a community in Japan that was very actively trying to incorporate people with psychiatric disabilities back into their community. This became the topic for my second book and it came out a lot of conversations with Yale students in a course I teach called “Disability and Culture.” The class explores disability from a cross-cultural perspective, using examples from around the world. Because it is one of the few disability classes taught here at Yale, many students who have disabilities take the class and a lot of the students had invisible disabilities — such as psychiatric disabilities. As I mentioned before, this is a category of people for which the ADA has not been able to help. While we go to great lengths to make buildings accessible to people in wheelchairs, or to provide a note taker or interpreter if someone is blind or deaf, there is limited support for people with psychiatric disabilities.  I’m very glad that the students at Yale have recently taken this up as an issue and have worked with the administration to make changes that allow them to continue to stay productive students at Yale.

My newest project is looking at transsexuality in Japan from the disability angle. What is unique about Japan is that transsexual people classify themselves as people with disabilities and not as part of the lesbian and gay movement. This has really shifted the movement into a very different type of politics. This originated in part from a Japanese translation of the category of gender identity disorder as gender identity disability. The transsexual movement structures itself around the disability movement. This has been particularly useful for transsexuals who are in the process of switching genders. A transsexual person is able to request an accommodation based on the fact that switching genders from male to female or vice versa is a disability. This resonated much more strongly in Japan than saying that switching genders needs to be recognized as a form of sexual expression, gender expression, or gender identity.

Is there an equivalent to the ADA in Japan?

It’s called the Disability Basic Law. The big difference between the USA is that in Japan a disability is a legally recognized category. Persons with disabilities in Japan are issued a disability identification card for the three types of disabilities: intellectual, physical, and psychiatric. Once you get certified, you carry the ID card with you and it opens a number of avenues for resources and access because Japan is a social welfare state. Disability rights are much stronger in Japan than they are in the United States. That is perhaps why the trans movement identifies with it, because it is so powerful.

What can the United States learn from Japan about disability rights?

The United States was an early leader in disability rights but we can still learn a lot from other cultures. A lot of people who do not have disabilities think that there is a stigma attached to having a disability ID card, but from the perspective of people with disabilities that card opens doors. The United States does not have a unified system for identifying people with disabilities, so the disabled have to frequently recertify to gain access to services.

Japan also has universal health care, a fully developed welfare system, and proactive support for promoting the employment of disabled people, so it is much easier for people with disabilities to live and work. The unemployment rate for people with disabilities in the USA is 83% — that’s not a misprint, six out of seven people with disabilities are unemployed. While I don’t think it’s reasonable to think that the United States will ever be as progressive about Japan regarding disabilities, I do think there’s still much we can learn from other countries. That’s the point of anthropology.

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Bess Connolly: elizabeth.connolly@yale.edu, 203-432-1324