Senate Needs to Confirm Ne'eman

In the wake of the long difficult struggle over health care reform, a large number of President Obama's nominees for administration positions remain in limbo because of holds placed on their confirmation by various senators. The rules of procedure in the Senate allow one lone senator to place such a hold on a presidential nominee, anonymously and for any reason or, sometimes, no reason at all. As reported by Reuters, the White House recently stated that President Obama has a total of 217 nominees pending before the Senate, and 34 of them have been pending for more than six months. Expressing his frustration with this situation, the president announced yesterday that he intends to place some of his nominees in their positions by means of recess appointments, which allow him to avoid the confirmation process by appointing nominees on an interim basis while the Senate is not in session.

It is perhaps not surprising that in this contentious political landscape, the appointment of Ari Ne'eman, founder of the Autistic Self Advocacy Network, to the National Council on Disability (NCD) has been delayed by means of an anonymous hold. It is, however, disappointing to many people in the self-advocate community and the broader disability rights community, who appreciate his tireless work for inclusion and equality of all people with disabilities in society. His record of accomplishment includes advocating for community services and supports to keep people with significant support needs in their homes and out of institutions; for federal legislation to protect students from abuse in their schools; for stronger laws against employment discrimination to better protect autistics and other workers who may experience discrimination because of a disability; and many other public policy issues that fall within the mandate of NCD to guarantee equal opportunity for all individuals with disabilities and to promote full integration into society.

Under the circumstances, Ne'eman was not able to be interviewed for an article in yesterday's New York Times about the hold on his appointment. The article begins by stating that many families with autistic members have positive feelings about his nomination as the first autistic person to serve on the council. Lee Grossman, director of the Autism Society of America, suggests in the article that any disagreement over autism advocacy priorities "may simply reflect the unmet needs of a growing population, for both research into potential treatments and for programs to support jobs and independent living." Grossman goes on to say, "We need to reframe the discussion. From our perspective, it’s great to have a person on the spectrum being nominated to this committee."

It is to be hoped that the situation will be resolved without much delay and that Ari Ne'eman will be able to take his position soon.

Campaign for Disability Employment

I'm reposting a message sent out by the Campaign for Disability Employment, an initiative funded by the Office of Disability Employment Policy at the U.S. Department of Labor, which provides resources to assist employers in recruiting, retaining, and advancing qualified employees with disabilities. The site also has information for workers and young people with disabilities, as well as family and educators. It is a collaborative effort among business and disability advocacy organizations.


Work is fundamental to identity; it offers purpose and the opportunity to lead an independent, self-directed life for all people, including people with disabilities. That’s why we’d like to ask for your support of the Campaign for Disability Employment – a new collaborative effort among several leading disability and business organizations to promote positive employment outcomes for people with disabilities.

The Campaign’s messages and products are framed around the theme of “What Can YOU Do?” In that spirit, here are a few things YOU can do to help promote its messages among people with disabilities:

Post a link to the What Can YOU Do? Web site on your organization’s Web site. For instructions on how to do so, click on “Link to Us” at the bottom of the site.

Feature the Campaign in your organization’s member publication. A quick and easy way to do this is to use one of the Campaign’s drop-in articles. Alternatively, or in addition, you could send an e-blast about the Campaign to your members. In this e-blast, encourage them to share their job skills and talents through the What Can YOU Do? Web site’s micro-blog feature.

Spread the word about the Campaign through your organization’s social media activities. The Campaign offers timely and fresh content for updates on Facebook, Twitter, LinkedIn and other social media outlets. As part of this, encourage your members to become a “fan” of the Campaign for Disability Employment on Facebook and join its network on LinkedIn as a way to stay abreast of disability employment issues.

Print and distribute Campaign materials. The What Can YOU Do? Outreach Toolkit features a variety of fact sheets, posters and other downloadable outreach tools.

View and share the Campaign’s “I Can” PSA!

Thanks in advance for supporting the Campaign for Disability Employment. Working together, we can further the important message that at work, it’s what people CAN do that matters!

Thank You, President Obama

When I endorsed Barack Obama's presidential candidacy on this blog in early 2007, it was because I judged him to be an enlightened and progressive thinker who would be capable of seeing the autistic population from a multicultural perspective—not as a plague to be fought and eradicated, but as a minority constituency made up of human beings and worthy of the same respect and representation as any other citizens.

I can't think of a time when I've been happier to learn that my first impression was accurate. President Obama made it clear that he is indeed a good friend of the autistic community when, as announced in this White House press release yesterday, he nominated Ari Ne'eman of the Autistic Self Advocacy Network to serve as a member of the National Council on Disability.

Here's an excerpt from the press release:


President Obama Announces More Key Administration Posts, 12/16/09

WASHINGTON – Today, President Barack Obama announced his intent to nominate the following individuals to key administration posts:

•Marie Collins Johns, Deputy Administrator, Small Business Administration
•Gwendolyn E. Boyd, Member, Board of Trustees of the Barry Goldwater Scholarship and Excellence in Education Foundation
•Jonathan M. Young, Chair, National Council on Disability
•Carol Jean Reynolds, Member, National Council on Disability
•Fernando Torres-Gil, Member, National Council on Disability
•Chester Alonzo Finn, Member, National Council on Disability
•Gary Blumenthal, Member, National Council on Disability
•Sara Gelser, Member, National Council on Disability
•Ari Ne'eman, Member, National Council on Disability
•Dongwoo Joseph "Joe" Pak, Member, National Council on Disability

President Obama said, “I am grateful that these fine individuals have chosen to serve in my administration. They will bring a depth of experience and valued perspective to their roles, and I look forward to working with them in the months and years ahead.”


YEE-HAW!!!

The Language of Disability

As an interdisciplinary field of study, Disability Studies explores concepts of disability from many perspectives, seeking to identify social, cultural, historical, political, and economic factors that influence how disability is conceptualized and how people respond to it. This inquiry also involves examining the words and symbols that are commonly used to describe disability, and rhetorical methods are well suited to such an analysis. For those who may be interested in contributing to the discourse in this way, I'm reposting a call for papers addressing the topic of disability and rhetoric:


Call for Papers for a Special Issue of the Disability Studies Quarterly: Disability and Rhetoric

The profound insight of Disability Studies is its conception of disability as a representational system rather than as a medical problem, a deficit, or a personal tragedy (Thomson, 1997). In this view, disability is regarded not as a settled physical or cognitive fact but rather as a discourse, a collection of figures and narratives, tropes and topoi, speakers and audiences that suggest identities and positions in the world to those participating in the discourse. The analysis of disability, then, necessarily goes beyond medical and psychological perspectives to consider how words and other symbols may be used, recalling Kenneth Burke (1969), by human agents, “to form attitudes or to induce actions in other human agents” (41). Disability, to say it another way, is inherently rhetorical and may best be understood through methods of rhetorical inquiry and analysis.

To that end, a special issue of the Disability Studies Quarterly (DSQ) will address the topic of rhetoric and disability. While Disability Studies has revealed the essentially discursive nature of disability, rhetorical theory and analysis promise to further the discussion by contributing a unique set of methods, terms, and concepts. Rhetorical method is a particularly important concern, and we are especially interested in essays that illustrate diverse methods and modes of rhetorical analysis as these relate to disability. Essays may analyze the workings of rhetoric in printed works about disability but also in other media, including film, music, web-texts, graphic novels, and other forms of sound and image.

We define “disability” broadly to include physical, cognitive, and intellectual difference. The ideal essays will enrich understandings of the relationship of rhetoric and disability, but will also serve as models for future scholarship in studies of symbolic representations of disability. Potential issues or topics may include, but are not limited to, the following:


- Disability as, in, or and rhetoric
- Disability and or as trope
- Disability rhetorics in the media
- Disability rhetorics in the classroom, workplace, or home
- Disability rhetorics and narrative
- Disability and digital rhetorics
- Activism and rhetoric
- Disability and audience
- Disability and rhetorical appeals, the rhetorical canons, and/or the rhetorical triangle
- Disability and legal/governmental rhetorics
- Rhetorics of accessibility
- Rhetorical constructions of disabled identity

Timeline
Queries or abstracts sent by February 1, 2010
Full submissions due July 1, 2010
Final revisions due November 31, 2010
Publication in the Winter 2011 issue of DSQ.

Submission guidelines
Manuscripts must be in the form of a Word document and:

- Have a cover page that includes the author's name, institutional affiliation, and contact information
- Have an abstract of 100-150 words
- Be between 3,000-6,000 words in length (approximately 10-20 double-spaced pages)
- Provide full references for all citations
- Include a brief biography of the author (50-100 words)
- Follow DSQ guidelines: http://www.dsq-sds.org/about/submissions#authorGuidelines


Please send queries and submissions to John Duffy (jduffy@nd.edu) and Melanie Yergeau (yergeau.1@osu.edu).

References
Burke, K. (1969). A rhetoric of motives. Berkeley: University of California Press.

Thomson, R. G. (1997). Disability, identity, and representation: An introduction. In R.G. Thomson, Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature. New York: Columbia University Press, 5-18.

Ending Waitlists

Community services and supports for people with developmental disabilities in the United States often have extremely long waiting lists because the states have not provided sufficient funding for these programs. After a person finally starts to receive services and supports, which can take years, they will be lost again if the person moves to another state. Federal action is needed as part of the health care reform effort to put an end to this inexcusable situation.

One group that has been active in lobbying to keep federal lawmakers' attention focused on the waiting list problem is NOEWAIT, the National Organization to End the Waitlists, which has been circulating a petition to federal lawmakers. I signed it some time ago and meant to blog about it, but got busy with other things and did not write a post about it until now, after Stephanie mentioned it—thanks for the reminder Stephanie!

NOEWAIT is currently looking for people to get involved in their network across the United States. I've reposted an excerpt from a recent message below:


NOEWAIT (National Organization to End the Waitlists) IS SEEKING COORDINATORS TO ASSIST IN EXPANDING NETWORK

We now have NOEWAIT state coordinators and representatives in the following states:

AL, AR, AZ, CO, CT, FL, GA, IL, IN, MA, MD, ME, MO, NC, NE, NJ, PA, TN, TX

But we have no coordinators or representatives from other states.

This volunteer position will assist in circulating information on ending the waitlist for services and gaining portability of services for Individuals with Intellectual and Developmental Disabilities by building the NOEWAIT network and developing relationships with and communicating with families, self advocates, the community, local, state and federal elected and appointed officials.

The requirements are:

Enthusiasm, organizational ability, a mission to end waitlists in your state and across the country and communication skills.

NOEWAIT will provide you with lists of individuals in your state who have indicated an interest in solving the waitlist crisis, and additional resources and ideas.

This volunteer position may, at times, require up to several hours per week, but you can adjust the work flow to meet your needs. You will be a participant in an email listserv with other state coordinators and representatives, sharing ideas and solving challenges.

We need individuals from every state, the District of Columbia and the Territory of Puerto Rico to volunteer to take on this endeavor. If interested in helping to end the waitlist and gain portability of services, please contact:

Denver Fox, Ed.D.
Moderator, National Organization to End the Waitlist
Noewait@Noewait.net

Supporting Allies

This morning, the Autistic Self Advocacy Network released a joint letter from over 60 disability rights organizations calling on sponsors, donors, and supporters of Autism Speaks to end their support for the organization because of Autism Speaks' hateful attitudes and exploitative practices. ASAN also issued a press release and set up a petition site where individuals can endorse the letter.

The disability rights advocates who are supporting ASAN and the autistic community in this effort are not receiving any financial benefit whatsoever from doing so. Rather, they are standing in solidarity with our community because it is the right thing to do. In the interest of reciprocating, and to advance the rights of people with disabilities everywhere, I suggest that the members of our community read the list of signatories to the joint letter and provide assistance to their advocacy efforts. In particular, ADAPT has an event planned in Georgia beginning this Sunday. If at all possible, go there and help out! Details below:


COMMUNITY ADVISORY

Community Choice is a Civil Right: Disability Rights Direct Action Arrives in Atlanta

Who: 400 ADAPT activists from Georgia and across the United States
What: ADAPT Fall National Action 2009
When: October 11-14
Where: ATLANTA, GEORGIA!

Links: www.adapt.org and http://www.disabilitylink.org/docs/adapt.html

Direct action is about to strike the hometown of the Reverend Martin Luther King, Jr. As the nation continues to struggle with health care reform, ADAPT grassroots disability rights and senior activists continue to advocate for the end of the institutional bias in Medicaid and a revolution in community choice.

Over 62,000 Georgians with disabilities live in nursing homes and institutions. The 1999 Olmstead Supreme Court case, fought by Georgians, guarantees that no one has to live in a nursing facility or institution against their will---it is a civil rights violation. Now, ten years past Olmstead, Georgia remains out of compliance and thousands of Georgians with disabilities lack adequate access to community supports, like millions across the nation. The percentage of Georgians with disabilities under age 65 who live in nursing homes is on the rise. When the system doesn’t work, it’s time for the people to take action.

Neither of Georgia’s Senators officially support the Community Choice Act or Community First Option. Adequate funding for Georgia disability programs is currently in danger. Federal institutional bias affects every single state. Through Atlanta, we will expose to the nation how nursing homes and institutions steal the lives of people with disabilities and seniors.

We are kicking off on Sunday, October 11, with an afternoon Community Choice March through Atlanta. We will follow up with three days of direct action. Stay up to the minute with Twitter updates and action alerts starting Sunday. Follow Nationaladapt on Twitter or go to www.adapt.org and hit the ADAPT Twitter button to check out our tweets.

ADAPT is a national grass-roots community that organizes disability rights activists to engage in nonviolent direct action, including civil disobedience, to assure the civil and human rights of people with disabilities to live in freedom.

Disabled World editorial blasts Autism Speaks

Thomas C. Weiss, a regular columnist for Disabled World, has weighed in on the controversy surrounding Autism Speaks' video "I Am Autism" with an editorial entitled Autism Speaks: Friend or Foe?

Although Mr. Weiss indicates in the article that he had been a supporter of Autism Speaks in the past, he also makes it very clear that after watching the "I Am Autism" video, he now sees the organization as anti-disability:


"I Am Autism speaks so badly of the current leadership at Autism Speaks that I have to wonder how long the likes of Mark Roithmayr and Elizabeth Emken can remain in their current positions. The organization of Autism Speaks as a whole will most likely experience a reduction in donations from the public at large due to this horrendous production…"


Mr. Weiss further goes on to liken Autism Speaks' hateful message to the Nazis' attitude toward disabilities, bluntly stating that he finds Autism Speaks' international influence to be terrifying in light of its destructive message:


"…the organization Autism Speaks would have people believe that People with Autism are plague-carriers. Autism Speaks likens People with Autism to family-destroying, misery-creating, hope-crushing, woe-enhancing, sleep-depriving, marriage-killing monsters. Autism Speaks presents People with Autism as being an instant ride to bankruptcy.

Not since reading about Nazi Germany have I seen such an outright negative portrayal of People with Disabilities. The fact that Autism Speaks is *supposed* to be supportive of People with Autism makes me absolutely shudder with disgust. I am not alone where this dismay at an organization that declares itself to be promoters of Autism and People with Autism yet presents such a hateful and destructive message is concerned…

…Instead of placing value on people with autism, Autism Speaks has presented them as some kind of horrifying monsters, loose in society and bent on destruction. Autism Speaks wields immense amounts of money and power, with the ability to sway massive numbers of people in societies across the planet in relation to Autism. They are not using these abilities to the benefit of People with Autism."


Many thanks to Mr. Weiss and Disabled World, as well as the many cross-disability organizations and individual activists who have expressed their opposition to Autism Speaks' hate speech, for standing with the Autistic Community in solidarity.

Senator Dick Durbin Urges Employers to Hire Autistic Workers

As reported by the Justice for All disability rights blog, Sen. Dick Durbin, who currently holds the influential position of Senate Majority Whip, recently spoke at Illinois Wesleyan University regarding equal employment opportunity for people with disabilities. He discussed the high unemployment rate in this population and urged employers not to let myths and stereotypes affect their hiring decisions, pointing out that the cost of providing workplace accommodations is very low and that the most common request is for flex time, which costs the employer nothing:


...hiring workers with disabilities is not an act of charity. The companies that learn first how to recruit and retain talented employees with disabilities are going to have an advantage in the marketplace. They are going to have a wider choice of employees to choose from when it comes to filling critical vacancies.


Sen. Durbin went on to speak about autism in particular, mentioning that some characteristics of autism can contribute to professional success. He quoted economist Vernon Smith, who won a Nobel Prize in 2002 and who has attributed his success in part to the autistic capacity for deep concentration and willingness to explore unconventional approaches. While observing that not all autistics can achieve this level of success, Sen. Durbin stated that autistics and others with disabilities can contribute to society in various ways, and he further quoted Smith on neurodiversity:


Vernon Smith... compares the struggle for disability rights to the struggle for civil rights. He says: "We’ve lost a lot of the barriers that have to do with skin color and various other characteristics. But there’s still not sufficient recognition of mental diversities." He adds, "We don’t all have to think alike to be communal and to live in a productive and satisfying world."

Dowries, Trust Funds, and Independence

I read an article by Kristina Chew yesterday discussing new legislation in West Virginia that will give tax credits to parents who contribute to trust funds for their autistic children's support as adults. Autism professional Barbara Becker-Cottrill gave an interview discussing parents' worries about what will happen to their children as adults, stating that trust funds can provide families with a sense of security.

In seeking to help families who worry about their children's future, this legislation addresses what has become a widespread concern. Because today's society is so poorly adapted to the needs of its autistic citizens, a trust fund often can be a reasonable option. I once wrote a post on this blog suggesting that parents who were spending large amounts of money in pursuit of miracle cures would be much better advised to put that money into trust funds instead.

From a broader cultural perspective, however, the idea that it could become routine to create a trust fund for the lifelong care of every autistic child leaves me feeling very uneasy. Such a system would be based on the assumption that children labeled autistic could not become self-supporting. By characterizing autism itself as the sole source of the problems encountered by autistic people in our culture, this would divert society's attention away from the many areas where it ought to be focused—miseducation, discrimination, ignorance, and lack of suitable accommodations. These are not the result of autism, but of socially constructed prejudice.

The practical effect of such a system would resemble the old custom of providing a dowry for a daughter so that she would not be left destitute if her husband died. In those days, it was taken for granted that a woman was not capable of supporting herself. Being an independent woman, to the extent that it was possible to be one, meant having inherited money from a husband or other male relative.

For many of us in the modern world, it's hard to imagine that there was once a time when a young girl, simply because of her gender, was thought to be inevitably destined to a lifetime of never being able to provide for herself. That idea seems absurdly primitive now. And yet, there are many people today who see nothing wrong with making the same assumption about a young autistic child. As we celebrate Independence Day here in the United States, I'd say that it is time to give that assumption a lot more critical scrutiny.

Cassandra's Impact on Autistic Victims of Domestic Violence

Much of the criticism surrounding the faux Cassandra disorder invented by Maxine Aston, wherein she claims that being in a romantic relationship with an autistic person causes psychological harm to a non-autistic partner, has focused on the efforts of associated hate groups such as FAAAS to stereotype autistics as violent and unfit for family life. This false portrayal reflects a longstanding prejudice, recently addressed by ASAN President Ari Ne'eman, that people with disabilities are "inherently unfit as spouses or parents." To the extent this baseless prejudice is given credence by family law judges and social workers, it endangers the basic human right to marry and raise children. I received an e-mail just this morning, discussing the Cassandra scam and the harm caused by disability stereotypes, from a woman who wrote that "until I was 24 I wouldn't have been allowed to get married in many states in the USA. Why? Because I am epileptic."

Such stereotypes can be especially dangerous to autistic victims of domestic violence. Like other people with disabilities, many autistic people who are victims of abusive relationships are particularly vulnerable and may have great difficulty escaping from a life-threatening situation. If, because of the bigoted stereotype that the autistic partner is always to blame for family problems, an abused autistic's cries for help go unanswered, this could result in her death at the hands of her abuser. The feminist disability rights group F.R.I.D.A. points out that domestic violence against women with disabilities is widespread and that much more action needs to be taken to stop it. (For those of my readers who are in Illinois, there will be a F.R.I.D.A. rally at the State Capitol in Springfield on May 22, 2009, from 1:00 to 5:00 PM, addressing the issue of domestic violence against women with disabilities; please consider attending the rally to show your support if you can do so.)

I have reprinted below, with permission, a statement from an autistic woman who wrote of her struggle to escape a violent marriage and how difficult it was for her to explain the abuse to others. Fortunately, she was able to escape safely and to find people to help her. Others in her situation have not been so lucky.


I am having a very hard time explaining why I stayed so long, etc., because NTs do not seem to understand why a person with my apparent intelligence believed so many lies. I know this is a common thing among battered women, but trying to explain how an abuser would manipulate an intelligent woman's gullibility and social anxiety so well is very hard any time I have to deal with anyone who is not experienced with autistics or battered women in general. He is already using my inability to process information quickly to manipulate the court process by changing potential settlements at the last minute, while we are in court, so that I can't comprehend them in a meaningful way while I am on a time limit to sign. I have a very good attorney (legal aid turned us down so I had to pay for my own which is going to be very problematic financially since having a very good one is crucial and not cheap). We are very lucky to have one CPS finding against him and irrefutable evidence of infidelity (which is more useful than undocumented testimony about physical abuse, since he is of course lying about the extent of the abuse and trying to take advantage of the fact that the children are too young to go to court).

I am astounded by the lack of information on abuse against autistic partners right now and so saddened by the whole "cassandra" myth. My husband used my quirks as excuses for beating and cheating on me although from his perspective, having a wife who was afraid of conflict, absolutely faithful, very easy to lie to, easy to isolate so that no one else would know about the abuse and report it, and unable to conceal anything (including hidden bank accounts that I tried unsuccessfully to use to get out), was a huge plus. I have a friend who is a former attorney and battered women's advocate and is trying to help me communicate with my lawyer right now, which has been very difficult so far, but I am still very scared. Thankfully we have already gotten an agreement for no unsupervised visitation but it will still be very hard to endure the rest of the proceedings which may last a year or more.

The thing that gets me is that I know that as typical as I am of women on the spectrum in so many ways, I am sure there are a lot of people in my position who are suffering in silence. I was lucky that there are two staff members at the shelter with autistic family members who have helped advocate for me when the group living situation has become unbearable, but I don't know how it is in other shelters and suspect many other autistics in similar situations may not be so lucky.

I will have to look for that book next time I am at the library. It was a Gavin De Becker book that finally helped me read the nonverbal signs well enough to recognize the risk and get out quickly the day that I am sure I would have ended up dead or too injured to get the kids out in time. I continue to think the fact that I managed to find homes for the pets, get access to the car (I have never been allowed to have my own), and get the kids out of the house in less than two hours that day was a miracle.


Edit, June 27: Here is a link to a post by chaoticidealism on this topic, Cassandra's Opposite.

Community Choice Act Needs High Priority

During his campaign last year, President Obama promised the disability community that if elected, he would work for prompt passage of the Community Choice Act. This legislation would reform Medicaid to end the current institutional bias and increase access to community-based services and supports. It would provide those in institutions and nursing homes the option to receive community-based services, allowing them to leave the institutions and to live empowered lives within the community, and would address the problem of extremely long waiting lists by providing guaranteed access to a community-based benefit within the Medicaid system.

Instead of working to accomplish prompt passage of the Community Choice Act, however, the Obama administration has indicated that it wants to address health care reform first. This is unacceptable to disability rights advocacy groups such as ADAPT, which protested in Washington on Monday regarding President Obama's failure to keep his campaign promise to take action quickly on this important issue.

There are many people with disabilities who have been on waiting lists for community-based services for years, and in some cases decades. Some people ended up waiting so long that they died in institutions. This is not just another political issue that can be pushed aside, depending on how the winds blow. It is a matter of basic human rights and needs to be treated as such. Write to the President and your members of Congress to make it clear where you stand. For Change.org members, you can send e-mails quickly and easily by going to this action alert.

Affirmation and Impairment

Dora Raymaker recently wrote a thoughtful post on the Change.org autism blog contrasting the social model of disability with the medical model and discussing a proposed new model of disability, which is called the affirmation model. She explains that although the social model views disability as arising from barriers in society rather than from medical conditions, it may not go far enough toward affirming that disability need not be a tragedy or a misfortune.

The affirmation model speaks of people with impairments, rather than people with disabilities, and seeks to promote personal acceptance of impairment. Under the affirmation model, Dora writes, "we are fine with who we are as we are: our impairments are an important part of ourselves and our lives."

I certainly agree that all people should feel empowered to accept themselves as they are; however, it seems to me that the word "impairment" is not useful for advancing this goal because of its inherently negative connotations. The dictionary on my bookshelf lacks a separate listing for impairment, but it defines "impaired" as follows:


adj: being in a less than perfect or whole condition: as a: handicapped or functionally defective…


Granted, my dictionary is a few years out of date; it's a 2001 Webster's Collegiate that I haven't gotten around to replacing. However, I expect that this definition, or something quite similar, is still the first thought that comes into most people's minds when someone mentions impairment.

Under the commonly referenced definition put forth by the World Health Organization, impairment is a "loss or abnormality of psychological, physiological, or anatomical structure or function." While this language isn't as bad as Webster's, it still frames the concept in negative terms.

It should also be noted that neither of these definitions—nor any other definition of which I am aware—provides an objective way to determine whether or not particular characteristics are impairments. Instead, that determination is made by reference to whether a characteristic is seen as normal or abnormal, which is always a subjective concept and often changes as society's values shift.

Thus, using the word "impairment" to describe a personal trait implicitly acknowledges as legitimate—and further perpetuates—the practice of classifying certain kinds of human characteristics as abnormal on the basis of society's prevailing prejudices. It is not conducive to critical discussion of whether such a distinction should exist in the first place.

We are never going to reach the point where disability is seen as a normal part of life if we continue to define the underlying personal characteristics as the opposite of normal.

Action Items for New Jersey Residents

The New Jersey Adults with Autism Task Force is currently conducting an informational survey to determine how the state can better provide services. The survey includes responses from autistics, parents, and others. Most of the responses received to date have been from parents. Although parent responses can be helpful, it is also important for self-advocates in New Jersey to respond to the survey to ensure that the concerns of autistics are represented sufficiently. Here is the link:


http://www.surveymonkey.com/s.aspx?sm=x33lcx4bxbMZ6Bwm55ApOQ_3d_3d


In addition, New Jersey is considering legislation that would close most of its institutions and provide funding for people with developmental disabilities to live in their communities. The Autistic Self Advocacy Network has issued a statement, reposted below, asking New Jersey residents to write to their state legislators in support of the bill.


Hello,

As many of you recall, earlier this month we worked with NJ Assemblyman Louis Greenwald and NJACP to introduce legislation which, if passed, will close five of New Jersey's seven institutions and shift the funds into community services. This effort has the potential to empower thousands of individuals with developmental disabilities, including many autistic adults, to live in the community. You can see a press conference announcing the legislation here, the bill text here and an endorsement from the New Jersey Star Ledger and the Philadelphia Inquirer here and here. This bill is an extremely important step towards ensuring a future with quality of life for thousands of adults with developmental disabilities living in New Jersey. Currently, the state ranks near to last in the country in regards to community services for adults with disabilities and uses institutions at one of the highest rates of any state. New Jersey ranks 49th out of 50 in terms of the average number of individuals segregated into institutions yet also ranks 40th out of 50 in terms of the amount of money allocated to community services funding. Click here for a comprehensive briefing paper on why A3625 is so important, providing supporting data, facts and analysis explaining why A3625 will lead to a better life for adults with developmental disabilities in New Jersey.

Ten years after the Olmstead v. L.C. decision ruling that people with disabilities have a right to receive services in the community rather than in segregated institutions, we still have a long way to go. No one should have to live in an institution. Today, we as a society possess the ability, the expertise and the sense of justice to end this system of segregation. In order to do that, we need your help. This action alert will use your zip code to send your letter supporting A3625 directly to your state legislators. Unfortunately, only New Jersey zip codes apply. If you live in New Jersey and are unsure as to your zip code, feel free to look it up by going to this link.

Please help support this effort by posting this message to your mailing lists, blogs, websites and other distribution mechanisms. Together we can empower people with disabilities everywhere.

Nothing About Us, Without Us!

Ari Ne'eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autisticadvocacy.org
732.763.5530


Although much more can—and should—be done to protect the civil rights of people with developmental disabilities and to enable the most disadvantaged to speak on their own behalf, this legislation is a significant step toward community inclusion. I urge New Jersey residents to take the time to respond to this action alert and, in the future, to keep a watchful eye on state legislators to ensure that more progress will be made.

Advocacy: the Good, the Bad, and the Ugly

Here's a brief roundup of a few items I've noticed recently in the news, related to autism and disability advocacy.

The Good: Disability rights organizations are continuing to make themselves heard, through well-orchestrated presentations to Congress and the Obama administration, regarding policy decisions. The National Disability Rights Network presented Congress with a report documenting the abuse of children in the schools by means of restraint and seclusion, and advocating specific policy changes to protect children with disabilities. Also, a coalition of disability rights organizations sent an expansive list of policy recommendations to President-elect Obama. Both of these initiatives were supported by the Autistic Self Advocacy Network.

The Bad: As blogged by Bev on Asperger Square 8, a British newspaper, the Daily Mail, has printed an article advocating eugenic abortion of autistic children because they supposedly wreck their parents' lives. The Mail is an infamous bigoted rag and not to be taken seriously; however, the article got a large number of disgusting comments from people who agreed with it.

The Ugly: The Academy of Motion Picture Arts and Sciences has decided to give its Jean Hersholt Humanitarian Award at the Oscar Awards ceremony in February to — Jerry Lewis. Yes, that Jerry Lewis, the misogynistic, gay-hating, narcissistic slimeball who has been pissing off disability rights activists for the past four decades with his annual Muscular Dystrophy Pityfest. About two thousand people already have signed an online petition protesting that abominable choice.

Making Policy the Right Way

Although President-elect Barack Obama has not yet taken office, he already has begun to make good on his campaign promises to consider a wide variety of viewpoints and to empower people with disabilities. The Obama transition team's disability coordinator, Kareem Dale, met last Friday with six advocacy organizations, including the Autistic Self Advocacy Network, to discuss autism policy issues. The new administration is seeking to identify high-priority issues within the autism community.

As our new president prepares to take office in these difficult times, with so many urgent matters that require his attention, it is heartening to see that he recognizes the importance of consulting with autistic self-advocates as essential stakeholders in the development of policy on autism-related issues.

Rejecting Eugenics

After prenatal screening for Down's syndrome and other genetic conditions became a routine practice, abortion statistics in some countries showed termination rates as high as 90% or more after a positive test result. Many people assumed that such children would be doomed to endure a life of tragic suffering and that abortion was therefore a compassionate choice.

Advocates sought to change this perception by showing the positive aspects of their families' lives and working for full social and educational inclusion. They believed that, as with other minority groups, integration would lead to greater understanding and acceptance.

A recent study in the UK, conducted by the Down's Syndrome Association, indicates that this approach has been effective in changing public views:


The number of babies in England and Wales being born with Down's syndrome has risen to a higher level than in 1989 when serum pre-natal screening was widely introduced - with two births a day according to the latest figures.

And in an attempt to understand why more women are opting to go ahead with their pregnancies the Down's Syndrome Association has consulted parent members. The results, released in a Radio 4 documentary, "Born with Down's Syndrome," show that many believe the quality of life for people with Down's syndrome will be better than in the past and that those with Down's syndrome are more accepted in society.

Following the introduction of screening for Down's syndrome in 1989, the number of babies born with the condition steadily fell from 717 to just 594 at the start of this decade.

Since 2000 the birth rate has increased, reaching 749 births of children with Down's syndrome by 2006, the latest year for which figures are available.


The study suggests that when differences and disabilities are simply seen as part of everyday life, people are less likely to have negative expectations or to make decisions based on fear. Some of the parents mentioned that they knew a person with Down's syndrome or another disability and that this had influenced their views.

I expect a similar improvement in public attitudes toward autism as we achieve greater integration in schools and workplaces. There's more discussion of this study at the Left Brain/Right Brain blog.

Promises and Public Discussion

In accordance with his campaign promise to address autism issues, President-elect Obama has introduced a Senate bill to mandate insurance coverage for autism-related services. Now it's time for us to tell the Obama administration and our Senators what we think about it, and more generally, what we want the federal government to do. Do you think it's a great idea to require coverage for occupational therapy, physical therapy, and speech therapy? Send a letter saying so! Do you have reservations about the bill's inclusion of ABA among the covered therapies? Let the government know your views! Do you have other concerns that are not being addressed? Make some noise!

In addition to the change.gov website for making suggestions to the incoming administration, we can also send e-mails to Obama disability issues staffers. Andrea Shettle has written a Call to Action for disability activists, reprinted below:


Change for People with Disabilities: Time to Email Obama!

On November 4, 2008, millions of people with disabilities across the United States and around the world joined our non-disabled peers in watching the United States election results. Obama supporters cheered or wept to learn that the next US president would be Obama. Then we cheered or wept again when Obama mentioned people with disabilities in his acceptance speech. History was made–not only for America, not only for Black people, not only for Kenya and all of Africa, not only for Indigenous peoples, but also for people with disabilities.

But we cannot afford to allow the moment to end here. Whether we supported Obama, McCain, or another candidate, we all know there is far too much work ahead before we can say, “Yes, we have made real change for people with disabilities.”

It is time for people with disabilities, our loved ones, our neighbors, and colleagues to join together, across ideological divides, to reach out to Obama. We should all send an email to Kareem Dale, Obama’s National Disability Vote Director (at kdale@barackobama.com), WITH COPIES TO Anne Hayes, a volunteer on the Obama Disability Policy Committee (at ahayesku@hotmail.com).

First, we should thank Obama — and also Kareem Dale — for mentioning people with disabilities in Obama’s acceptance speech on November 4. Ensure that they understand how much it matters simply for us to be included. How did you feel when Obama mentioned us? Share your story.

Second, we should tell Obama and Kareem Dale that we are aware of Obama’s disability platform. He promised to increase educational opportunities; end discrimination; increase employment opportunities; and support independent, community-based living for Americans with disabilities. And he promised to sign the Convention on the Rights of Persons with Disabilities (CRPD), the first international, legally-binding human rights treaty for people with disabilities. Tell Obama and Kareem Dale that we are ready to call Obama to account if he fails us. But more importantly, we are ready to work with him for change for people with disabilities.

It is important to send your disability-related emails to BOTH Kareem Dale AND Anne Hayes (kdale@barackobama.com AND ahayesku@hotmail.com) between now and inauguration day. Kareem Dale’s email address may change between now and January 20, 2009. Anne Hayes can help ensure that emails sent to Kareem Dale are not lost during this time of transition.

Both Kareem Dale and others who have worked on disability issues within the Obama campaign are ready to receive YOUR emails on disability-related issues for US President-elect Obama. Emails are welcome from across the United States and around the world. If you are a US citizen, then please say so in your email.

Learn more about Obama’s plan for people with disabilities at: http://origin.barackobama.com/issues/disabilities/

Yes, the video is captioned. And if you scroll down to the bottom of the page, you can download Obama’s Full Plan for people with disabilities in PDF format (62 Kb).

Read Obama’s acceptance speech at: http://www.barackobama.com/2008/11/04/remarks_of_presidentelect_bara.php

Want to read someone else’s letter to Obama before you write your own? Come to: http://reunifygally.wordpress.com/2008/11/05/thank_you_obama_disabilities/. Another letter is posted at http://wecando.wordpress.com/2008/11/10/bpks-congratulates-obama/.

Learn more about the CRPD at http://ratifynow.org/ratifynow-faq/

If you wish to contact Obama’s staff on some topic other than disability, then you can send an email via his web page at http://www.change.gov/page/s/ofthepeople

Please circulate this email freely, or post this at your own blog, web site, or Facebook page.

This text was first posted at http://wecando.wordpress.com/2008/11/07/disabilities-email-obama/ The most updated version will be here, so please consult before cross-posting.

“It is the answer spoken by young and old, rich and poor, Democrat and Republican, black, white, Latino, Asian, Native American, gay, straight, DISABLED and not disabled — Americans who sent a message to the world that we have never been a collection of Red States and Blue States: we are, and always will be, the United States of America.”
–President-Elect Barack Obama
Acceptance speech, November 4, 2008; emphasis added

Obama on Disability Employment Awareness

In recognition of National Disability Employment Awareness Month, Barack Obama recently wrote a statement addressed to Americans with disabilities, which summarizes his intended plans and policies related to increasing the employment rate among those with disabilities:



It's a pleasure for me to join you in celebrating National Disability Employment Awareness Month. Americans with disabilities are an essential and underutilized part of our workforce. As President, I will work hard to help you achieve full equality—in the workplace, in education, and in all aspects of life.

I don't have to tell you the dismal statistics—an employment rate 40 points below that of working-age individuals without disabilities and a federal failure to meet the disability employment targets of Executive Order 13173.

This must change—and I know that it can. Because I know that we can change it. One of the most important measures of any society is how well it enables each person to live up to his or her potential. Fairness is important, but providing you with the supports and services so you can succeed goes beyond that—it goes to the heart of our nation's future. Because in an era of intense global competition, we can't afford not to put everyone to work. You shouldn't be locked out of the workplace. Children with disabilities shouldn't be languishing in failing schools that doom them to a life of second class citizenship. Your talents and energies must not go to waste.

America faces great challenges right now and we won't meet them without the help of everyone who can work. It's that simple. That's why it is long past time for us to break down the barriers that still exclude people with disabilities in this country and deprive you of true equality of opportunity and independence.

One of the first places we need change is in the workplace, and the federal government should take the lead. That's why my administration will be a model for other employers in hiring and accommodating employees with disabilities. Before leaving office, President Clinton issued Executive Order No. 13173, which mandated hiring an additional 100,000 federal employees with disabilities within five years. Eight years later, this goal still hasn't been reached. I will reinstate this executive order early in my term as President and designate a senior White House official to assure that all federal departments and agencies do their part to help meet this goal. I will also vigorously enforce the Rehabilitation Act, including Section 503 requiring the federal government and employers who are federal contractors to "take affirmative action to employ and advance in employment qualified individuals with disabilities."

In addition, I will launch an aggressive effort to educate employers about tax benefits designed to encourage them to hire employees with disabilities, such as the Disabled Access Tax Credit, the Tax Deduction for Architectural and Transportation Barrier Removal, and the Work Opportunity Tax Credit. They are underused and our employers can't afford to miss out on these benefits any longer.

These actions will help many adults with disabilities increase their contributions to our society, and I believe we must do even more for the next generation. That's why I will fully fund the Individuals with Disabilities Education Act and ensure that it is effectively implemented and enforced.

This is a pivotal election, and it's our time for change. I hope you'll get involved, because I can't do this alone. I need everyone to contact their friends and family to make sure they know about the issues and where the candidates stand. I need everyone who can to make phone calls and knock on doors to get the word out. Together, we can win this election. Together, we can achieve full equality for Americans with disabilities. Together, we can create the changes we seek.

Sincerely,

Barack Obama

John McCain Has Disability Activists Arrested

On Monday afternoon, September 15th, police arrested several people from the disability advocacy organization ADAPT at the Arlington campaign office of Republican presidential candidate John McCain when they protested the campaign's refusal to look at the ADAPT platform for affordable, accessible housing. The day's events are described on the ADAPT website:


After setting up a tent city at HUD headquarters just after 4 a.m., ADAPT sent 100 activists to the Democratic National Committee (DNC) offices in Washington, D.C., and another hundred to a Sen. John McCain campaign office in Arlington, VA. All three entities were presented with the ADAPT platform for affordable, accessible housing.

"The DNC was cordial, and they accepted our housing platform, as well as our invitation to visit 'DUH City,' which is HUD spelled backwards," said octogenarian Barb Toomer, ADAPT organizer from Utah. "The career HUD staff that met with ADAPT told our people they had no authority to make decisions and had to wait for the administration or administrative appointees to make any decisions, so the meeting felt like a waste of time. Sen. John McCain's campaign staff not only refused to even look at our housing platform, they had eleven of us arrested by police who caused injuries to at least one arrestee."

ADAPT's housing platform points to America's longstanding and still growing crisis in the availability of affordable, accessible integrated housing. Many people with disabilities live on benefits that are only 18% of the median income, a full 25% below the poverty level, and an amount that is less than the national average rent for a studio/efficiency apartment.


Local Arlington reporter Bruce Leshan of WUSA Channel 9 reported on the arrests in a story entitled Disabled Activists Arrested At Arlington McCain HQ. He wrote:


Sen. McCain opposes a Senate bill designed to change a system that disabled advocates say pushes them to spend the rest of their lives in an institution...

"We don't want no houses like he has. Seven houses. We don't need anything fancy. We're asking for an apartment," said protestor Cassie James.

The activists say Medicaid WILL pay for their care in a nursing home. But WON'T pay for them to have a health aide at home. "All we want to do is level the playing field so people will have a choice," said activist Rick Knight.

Sen. McCain says government living assistance for the disabled should NOT mean "perpetual confinement to an institution." But he also says the bill supported by the activists is too expensive. "The Community Choice Act is not a piece of legislation that I support," Sen. McCain told a Denver forum.

Bobby Coward says that's not good enough. He's a Persian Gulf war vet left a quadriplegic by a car accident. "If I don't get an attendant, I can't get out of the house, so I'm laying in bed."


Shame on you, John McCain, for playing up your claim to fame as a wounded war hero, while not even bothering to look at the needs of injured veterans and others with disabilities for housing assistance and services!


Update, Sept. 20: Here's a powerful new video that illustrates the McCain/Palin ticket's attitudes toward people with disabilities.

Abortion, Disability Rights, John McCain, and the Supreme Court

Since John McCain's recent pick of a running mate, Sarah Palin, who holds very strong pro-life views and has an infant son with Down Syndrome, I've seen a few people in the autistic community arguing that the Republican ticket would be the best choice for us. A prenatal test for autism could be only a few years away, this argument goes, and the only way to save our people from eugenic extermination is to vote Republican so that McCain can appoint more conservatives to the Supreme Court and put the abortionists out of business before they start killing off autistic babies.

Although this argument packs a strong emotional punch, it doesn't reflect what would actually happen under a Republican administration with a conservative Supreme Court. First of all, even if the court were to decide that there was no constitutional right to abortion, that in itself would not outlaw abortion. It would simply allow the states to legislate on abortion as they saw fit. In liberal states such as California and New York, abortion would remain legal. In the most conservative states, abortion would be promptly banned; but these states have very few abortion clinics anyway, so the only difference would be that their residents, most of whom already have to go out of town to get an abortion, would have to drive a few more hours to get to a clinic in another state or in Canada. The overall number of abortions in the United States would not be significantly reduced.

What's more, even the strictest anti-abortion laws would not ban prenatal tests, most of which have legitimate medical purposes. A prenatal diagnosis of Down Syndrome, for instance, can result in better medical care for the fetus because the doctor can consult with specialists during the pregnancy. If a specialist determines that the baby will need heart surgery immediately after birth, which sometimes happens, there will be a surgical team standing by. Although autistic infants do not have similar medical issues, parent groups reasonably could argue that a prenatal autism diagnosis would help families to get on waiting lists for early childhood enrichment and therapy programs. I think it's highly unlikely that any state legislators would risk their wrath by proposing to outlaw prenatal testing for autism.

That leaves us with the question: If we can't put a stop to selective abortion by legislating it out of existence, how can we protect the next generation of autistic children from being routinely aborted? To find the answer, I believe we need to look at parents' reasons for choosing abortion when they are told their child will have a disability. Most parents who opt to abort are not selfish monsters who just don't want to be bothered with the child; rather, they agonize over the decision and then conclude that abortion is for the best because the child likely would never have an independent and fulfilling life.

And they're not just relying on outdated prejudices and stereotypes in thinking so. It is a fact that people with disabilities face many barriers to independent living in today's society—lack of community services and housing options, in particular, and widespread employment discrimination. These are issues that can be addressed effectively through the political process. When we remove the barriers and build a society in which all people are empowered to live as equal participants in the community, regardless of disability, the rationale for selective abortion disappears.

Therefore, when choosing the presidential candidate whose policies are most likely to bring about an America in which autistic children and others with disabilities are not routinely aborted, we need to consider the candidates' views on disability rights issues and vote for the one who will act to remove barriers to independent living.

That candidate definitely is not John McCain. As I mentioned in a recent post, McCain opposes the Community Choice Act, which would provide funding for community services and housing for Medicaid recipients who would otherwise be forced to live in nursing homes or other institutional facilities. On the employment discrimination issue, let's talk about the Supreme Court again for a moment. The House of Representatives recently passed, and the Senate is now considering, amendments to the Americans with Disabilities Act. These amendments became necessary to restore the act's original protections after they were significantly eroded by a series of Supreme Court decisions—authored by those conservative justices Senator McCain so often praises.

When Senator Tom Harkin, a longtime supporter of disability rights, challenged McCain on this point at a community forum in July, McCain asserted that the decisions had nothing to do with the conservatism of their authors, but that Congress was to blame for not being specific enough in drafting the ADA. Uh-huh. Apparently, McCain would have us believe that his pals on the Supreme Court just didn't notice that the ADA was supposed to be an anti-discrimination law. Well, I'm not buying it—and I'm not voting to give McCain a chance to appoint even more conservatives to the Supreme Court so that they can take another whack at our disability rights laws, either.