Tuesday, October 2, 2012

A world more welcoming to people with disabilities: what it's going to take

Last Friday was a major event: the National Forum on Disability Issues, to present the disability positions of the 2012 presidential candidates. While Obama and Romney didn't attend, they sent representatives: Ted Kennedy, Jr. and Rep. Cathy McMorris Rodgers. Max and I had a representative there, too: Mariah Rose Kilbourne, Ms. Wheelchair America 2013. Actually, she was there for all of us and our kids.

Mariah, 24, works at The Seguin Economic Development Corporation in Texas, commuting via paratransit bus service. She's a published writer and advocate who's into photography, public speaking and fundraising. We've connected online in the last few years, and she is truly an amazing person inside and out. Here's what she had to say about the historic day.

As a community of Americans with disabilities, our voices need to be heard when deciding the policies that affect everyone in this nation. We must exercise our full participation. If we don’t step up to that next level of evolution we will always be subject to the ignorance that results in low expectations masked as compassion that robs us of our true viable future as fully participating members in this experience called America. It will be a better America because we are fully participating in it.”—Anil Lewis, Director of Strategic Communications, National Federation of the Blind. 

I am a Summa Cum Laude graduate, an intern in Economic Development, an avid sports enthusiast. I am one of the 57 million Americans living with a disability. It is my membership in this latter group that most powerfully impacts my life and the ways in which I see and experience our world.

In 2012, those in the disability community still struggle for true equality, freedom, and independence. We are still fighting to break down longstanding architectural and attitudinal barriers to pursue the American dream alongside our able-bodied peers. This is an important year. This November, during the Presidential election our voices will be heard.

On September 28, 2012 those disabilities, their family, and friends had the historic opportunity to take part in the National Forum on Disability Issues. This nonpartisan event focused on the disability positions of the 2012 Presidential candidates. Edward M. “Ted” Kennedy, Jr. and Representative Cathy McMorris Rodgers (R-WA) spoke on behalf of their respective parties to present their campaign’s positions on matters relating to Americans with disabilities.

500 participants attended the event, held live in Columbus, Ohio, while thousands more watched a web stream. I was able to attend the event in person. From the moment I rolled in the doors, I felt a sense of empowerment—a sense of unity and community. Several disability leaders, activists, and organizations were present to lend a strong voice. It is vital to educate yourself and others on the issues that are being debated and how they affect you, your family, and your community to be an empowered voice this November.

Micah and Sue Hetrick, event coordinators

Each of the representatives shared their parties view on issues such as insurance, healthcare, education, employment and housing. For several years in the disability civil rights movement, those with disabilities faced extreme exclusion. Until the passage of the Americans with Disabilities Act in 1990, those with disabilities were shunned, hidden and institutionalized away from mainstream society. Those with disabilities faced harsh segregation. For many years, those with disabilities were housed, transported and educated in separate institutions.

While much progress has been made towards equality, respect and dignity for people with disabilities, we still have a long way to go. Many of the stigmas and discriminatory attitudes towards people with disabilities remain. While their proposed policies in the areas of insurance, healthcare, education, employment and housing differ, it was very encouraging to hear that both candidates encourage bi-partisan support to continue the efforts towards building a fully inclusive America. 

For example, 67 percent of working age people with disabilities are unemployed. Moreover, more than one million people with disabilities have lost their jobs in recent years. These statistics, while staggering, were not surprising to me. As a 24 year old with a disability, one of the hardest aspects is finding employers that will see talents, gifts and abilities, rather than physical challenges. It is an ongoing challenge to get employers to see the person first and not the wheelchair. Several of my friends with disabilities have faced similar challenges to find meaningful employment.

Both parties support employment initiatives for persons with disabilities to improve the economic and employment prospects of people in the disability community. They both know that persons with disabilities do not want handouts, we want meaningful employment. People with disabilities want to become productive taxpaying citizens. Both candidates support innovative strategies to increase employment for people with disabilities in federal, corporate and small business realms. Both parties support job training programs for those with disabilities. This is very, very encouraging. Those with disabilities want opportunities to work—we don’t want to sit at home. We want to be productive, active, valued members of our communities.

Edward M. "Ted" Kennedy Jr.

Housing and self-care options were also important topics for me as a young adult with a disability at the Forum. In my experience, I was able to live on my own during college. I stayed in the dorms and experienced a great deal of freedom. Because the dorms were ADA accessible, I was able to live independently and fit in just like all my able-bodied peers. In my transition after college, I found it very difficult to find accessible housing options. Due to lack of options, I had to move back home with my parents. I had to give up a lot of the independence that I worked very hard to gain. This setback, due to lack of resources, was very disappointing. Some of my mid-20s aged friends, have even had to move into nursing homes because that is the only accessible housing option available. This fosters a sense of exclusion and isolation from peers during a time when socialization and independence is crucial.

Frank Sesno, director of the School of Media and Public Affairs at George Washington University, served as forum moderator; at right, Rep. Cathy McMorris Rodgers

I am excited to hear that both candidates are working towards increased accessible housing and self-care options. Both have recognized the financial benefits of affordable, accessible, integrated housing rather than traditional institutionalized care. So far, more than 20,000 people have transitioned from nursing facilities to home-based care. Improved access to housing, community support and independent living arrangements is vital to the obtainment of equality, independence and American dream for all. With continued support of opportunities like the Forum, to become educated and empowered on the issues at hand, I have no doubt that the dream will one day become a reality. 


  1. "While Obama and Romney didn't attend, they sent representatives: Ted Kennedy, Jr. and Rep. Cathy McMorris Rodgers." Not snubbing the representatives, but what a statement it would have been if either candidate had actually appeared. Maybe next election cycle.

  2. Not once did I see a statement or a comment talking about communication barriers. I guess that is not viewed as a part of the disability rights movement. *sigh*

  3. I wonder what Maria, Ellen and your readers feel about the use of the word "retarded" to describe a voiceless disabled man who was allegedly abused in his group home? This is the descriptor used on the front page of The New York Times yesterday (Oct. 1) and in the lead of the story in the print issue on page 18:


    The wording in the online version was changed last night from "is severely retarded" to "has a severe mental disability." I have written the public editor and the reporter and you can see their responses on the BLOOM blog.



    I noticed there was reference in Maria's piece to challenges faced by people with physical disabilities, but no mention of challenges faced by those with mental or intellectual disabilities. What are the candidates' views regarding this population?

  4. Anon, I couldn't agree more, it would have had such an impact if Obama and Romney had attended.

    Thomas, I did not listen in on the entire forum but, agreed, this is a glaring omission.

    Louise, you of course know my stance on the word "retard." Glad you emailed all of the above. This incident makes it so clear that even well-educated people, EVEN journalists, still don't get that the words "retarded" and "mental retardation" are pejorative, antiquated terms. If you quizzed the reporter, Danny Hakim, he would probably have no clue, for instance, that Congress banned the word from being used in federal statutes back in 2010.

    The bottom line is, we have a looooong way to go. But I am glad that all of us are here to speak up for our kids and others with disabilities who deserve respect (aka the other r-word).

  5. Hi Anon, I agree I hope in 2016 the candidates themselves will be in attendance.

    Hi Thomas, I agree, I wish communication barriers and transportation were discussed. I wish the candidates had longer to discuss the many different issues and policies affecting those with (dis)abilities - 20 minutes was a great start, but not long enough.

    Louise, both representatives and the moderator have personal experiences with people in their lives who have intellectual disabilities. They shared those personal connections. Especially, Rep. Cathy McMorris Rodgers, who's son Cole has Down Syndrome and Edward M. “Ted” Kennedy, Jr.'s Aunt who has intellectual disabilities. Kennedy’s aunt, Eunice Kennedy Shriver, founded the Special Olympics in her honor. You could sense that they had a true empathy and understanding for the lived experiences of the people in the audience. There was a genuine desire to make things better for everyone (while their policies/ ways to get there differed). There was nothing disability specific... there was an emphasis on opportunities for everyone in jobs, housing, education, and community support. They wanted the policies and support to provide more opportunities for everyone, whether their disabilities were physical or intellectual (or both). They emphasized that those with disabilities, of any kind, are part of the diversity of America. And when employers, schools, businesses, housing companies embrace diversity that makes us stronger as a nation.

  6. Hi Ellen -- Thanks for your message. I can't imagine doing a whole series of stories on abuse of people with developmental disabilities and not questioning use of the word retarded.

    If Congress banned use of the word in federal statutes, how come it continues to be printed in the DSM -- and, I believe, the World Health Organization also uses the term?

    Who is taking the American Psychiatric Association to task?

  7. Dear Mariah -- Thank you very much for responding to my question! It's great to hear more about the specific personal connections of the representatives and the moderator. When I think about it, I think it's great that the topics were discussed in a unified way for people with all types of disabilities. Thanks for the further details.

    I was very interested to read about your experiences with lack of accessible housing and in particular to hear about peers of yours who live in nursing homes because of a lack of options. Perhaps this is a topic you could help us pursue further on BLOOM. I am going to click on your link.

    Thank you for giving a a great overview of the forum and also interjecting your own personal experiences. Louise

  8. Louise,

    In response to your question concerning the Diagnostic and Statistical Manual of Mental Disorders (DSM)and International Classification of Diseases (ICD; the WHO's manual), the simple answer is that neither are federal/governmental agencies. The American Psychiatric Association (APA) is an independent, not-for-profit professional association. The World Health Organization is a subset of the United Nations, which is an entity that is not operated by any one particular government. What they publish would not be covered by such a congressional declaration and, as such, they have the same ability to publish it as the New York times.

    Moving beyond the simplistic and obvious, it is worth noting that the DSM is only revised occasionally and the process for doing so is far, far more involved than amending a New York Times article. The last time the DSM was revised was in 2000, with the publication of the DSM-IV-TR (TR=Text Revision, the original IV version was published in 1994). The ICD is revised much more frequently, with updated versions being published annually.

    All of that being said, lobbying the APA is not necessary. They are currently in the process of developing the next version of the DSM, the DSM-5, and, though nothing is set in stone yet, the proposed revisions include replacing the term Mental Retardation with Intellectual Developmental Disorder. You can view these proposed revisions here: http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=384#. The new edition is expected to be published in May 2013; unfortunately, until then, the clinical term for intellectual disabilities will remain retarded.

    As I know less about the ICD, I cannot comment on it. I will say that, as it is published for an international audience for use in a variety of contexts, that the issue is more complicated. For example, the word retarded may not hold the same stigma and status of misuse that it does here, though the disorder itself may hold greater stigma, ie the word retarded is not being used as common, provocative slang; but those with developmental disabilities may be excessively institutionalized. Alternately, as the ICD is used in regions where communication between multiple medical professionals is difficult, it may not be practical to try to change terminology. Once again, though, I cannot say for sure.


  9. Wow, what an awesome thread!
    Best thing I've read all morning.
    (and very informative re: DSM - I was wondering about that - thanks, Eri).

    I heard a lot of talk on facebook from my friends in the disability community about Obama's forum/disability - and insisting a National Commission for Disability be created, alongside what is held in this video: http://www.youtube.com/watch?v=DG3RPdkjnFE

  10. Hi Eri -- Thanks so much for all of this information!

    I am disappointed to say that it appears that using the words "is retarded" is common practice at the New York Times (here's another recent example: http://www.nytimes.com/2012/09/30/us/ending-segregation-of-the-mentally-disabled.html?_r=1&ref=policy

    ) and I have asked the public editor what their style guide says regarding use of the word.

    They have lots of rules about language related to gays and minorities, but I'm being told that since the word mental retardation is used by medical professionals, they will continue to do so (it's not here in Canada).

    Thank you for passing me the link re the modifications to the DSM -- I will forward these. Thanks again!

  11. Hi there -- I forwarded the proposed revisions to the DSM and was told that they would wait until the changes were actually made next year. Here is my response:

    Dear Joseph and Danny: While the public editor doesn’t have authority to change the style guide, you have influence.

    To say you will wait a year to change common use of words that are offensive to people with intellectual disabilities when the American Psychiatric Association has stated clearly that “Mental retardation is no longer used internationally or in U.S. federal legislation” is nonsensical.

    Please let me know the contact information for the standards editor so I can make a direct request.

    Your style guide clearly recommends use of neutral language and respecting the wishes of women, minorites and “people with disabilities” – not “the retarded” – in word usage. What is the point of having a style guide if no one follows it?

    I have a child with intellectual disability, am a loyal reader and in fact my work has been published in your Motherlode parenting column. I’m incredibly disappointed in your response.



Thanks for sharing!

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