This month, we asked Anita Cameron, the resident blogger of ADAPT, a vital organization to the disability community that relies upon direct action and civil disobedience to create a tense context by which others are forced to confront issues that threaten our literal lives, to share her thoughts on ADAPT's 25th anniversary.

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25 Years of Direct Action! Celebrate with Us!

  By Anita Cameron       

ADAPT is having its 25^th birthday! This April will mark the 25^th anniversary of the first national ADAPT action. This year also marks the 20^th anniversary of my first national ADAPT action. I’d been hanging around ADAPT since 1986, always on the fringes -- a shy, quiet young thing, totally unremarkable, except that I was Dennis Schreiber’s attendant and interpreter. Almost anybody around back then remembers Dennis, but probably doesn’t remember the mousy little Black girl with unruly hair who was his attendant. That was me.

What is ADAPT, you ask? Well, ADAPT is a national, grassroots disability rights organization that began in Denver, Colorado. It was started by 19 people with disabilities who wanted access to public transportation and public places in their community. Many of them had been incarcerated in a nursing home for most of their lives, and had only been out a relatively short time. One of their first big battles was with the Regional Transportation District (RTD), Denver’s transportation authority. After countless meetings and negotiations that went nowhere, the group had had enough, and staged a two-day protest where they blocked the intersection of Colfax and Broadway, the busiest streets downtown, blocking buses, and getting out of their wheelchairs and lying in the street. That was the “shot heard ‘round the world”, if you will, and people with disabilities in other cities wanted to learn how to do direct action to bring about change.

You can’t even begin to talk about ADAPT without talking about Wade Blank. Wade was once an activities director in a nursing home called Heritage House This was the place where the original group that started ADAPT was incarcerated. Wade’s history of working for social justice and social change began long before then, but while at Heritage House, he listened to the dreams of the young folks trapped there, and ultimately helped them to free themselves, and move into the community. They founded Atlantis Community, the second oldest independent living center in the nation.

Once the Gang of 19 was out in the community, they realized that there were many barriers—inaccessible public transportation, restaurants, stores, and other places. Wade imparted his knowledge of community organizing and activism to the budding activists, and they began the daunting task of fighting for the right to go where everyone else could go.

Today, ADAPT has grown from the “Gang of 19” to a grassroots network of thousands of people with disabilities and our allies, with at least 500 people from over 30 states, and sometimes other countries, continually showing up at each action. We are a diverse group...by disability, by politics, by gender and orientation, by race, by ethnicity, by age (literally cradle to grave, and even having had people die at actions), by geography, by ability to communicate and/or use assistive communication, by income (though most of us are at or below poverty level), by marital status or arrangement, by work experience or former occupation, or inability to work, by institutional history, and so much more! We are a real community, even family, that celebrates births, and the lives of those who have passed on, and celebrates the achievements of each of us, be it personal or systemic. Though we have no bylaws, elected officials, or directors, we have managed to realize many significant achievements.

We have gone from being considered rag-tag “militants”, “radicals”, and “hippies” to being a powerful force to be reckoned with. We represent the cutting edge of disability rights and activism, and have gained the respect of many elected officials and other powerful people. Some may not like ADAPT, but they do respect us, and it is much easier to get to the table to help shape policy.

I, too, have grown. I started out as a shy, mousy 21-year-old, who rarely spoke, and when I did, it was barely above a whisper. I desperately wanted to work for social justice and social change. Having been born only three years before the death of Dr. Martin Luther King, Jr., I felt guilty for not being able to fight for the civil rights of African Americans. I had been involved in several peace and justice movements, but I never felt at home, and never felt as if I were a real part of things. Also, I often was the only African American taking part in the activities.

I joined ADAPT near the end of 1986. At the time, I was living in , , my home town. A friend of my godmother, a Sister in the order of the School Sisters of Notre Dame (SSND), called her to see if there was anyone that she knew who would be interested in working as an attendant for a man who had a disability. The man belonged to a disability rights organization and traveled, and needed someone as a back-up staff. My godmother immediately thought of me, and suggested that I apply for the job. I did, and the rest is history. For the first year, I just hung out, quietly participating in local actions. I was so amazed at the work that ADAPT was doing locally with transportation issues. I also felt at home because here were people who either looked like me, or had similar experiences. Then, in March of 1988, I was finally able to go on my first national action—DC Siege/DOT! I was forever hooked, and from then on, I went with Dennis on ALL of the actions.

Shortly after I joined ADAPT, I met Wade Blank, and we hit it off immediately. In December, 1988, I moved to , to work with Atlantis/ADAPT. They had recently opened a new office in Colorado Springs. We often went to to participate in actions or meetings, so I saw a lot of Wade, and was able to learn more about organizing and activism. In 1991, I moved to to work in the main office as a community organizer, working directly with Wade, who became my mentor. Though Wade passed away only two years later, I felt enriched and blessed by being able to work with him. The pearls of wisdom that he sent my way were countless!

Over time, I grew from the aforementioned mousy chick, to a fiery activist. I have become a ham, of sorts, in ADAPT, singing, chanting, and helping to keep up our troops’ spirits. I have also become a leader, sometimes helping with negotiations, and stuff, but mostly helping to keep people informed, safe, and pumped up during the actions. I now live in , and usually help to plan our local actions.

ADAPT has changed my life. I learned how to be an activist, and catalyst for change. I have learned (and am still learning) the political process, and policymaking. Through ADAPT, I have done some really cool and amazing things like help to plan a successful two-week vigil in to protest budget cuts that could have sent hundreds of people with disabilities back into institutions. I participated in the Free Our People March, where 210 people wheeled and walked from Philadelphia, PA, to Washington, DC, to bring awareness of, and to call for the passage of MiCASSA (Medicaid Community-based Attendant Services and Supports Act), now the Community Choice Act (CCA). I was one of 50 ADAPT members who met with President Bill Clinton in the East Room of the White House. I wouldn’t have been able to do these things had I not been with ADAPT.

That is why I am so excited about ADAPT’s 25 anniversary! We will be in from April 26-May 2, 2008. There will be some amazing stuff happening for this celebration:

April 27
National Fun*Run
ADAPT will hold its 2nd Fun Run/Roll, with the incomparable Marca Bristo as the Honorary National Runner/Roller.

 
April 30 
When You Remember Me 
Showing of the movie, “When You Remember Me”, a made-for-TV film starring Jeff Savage, Kevin Spacey, and Ellen Burstyn that chronicles Wade Blank's work freeing youth from a nursing home...work that morphed into the creation of both Atlantis, and ADAPT, will be shown in the evening. For a synopsis of the movie

StoryCorps— if you listen to NPR, then, you are familiar with StoryCorps, where people record their stories for the Library of Congress, and some of these are aired on NPR. StoryCorps will be at our hotel recording stories from ADAPT folks. I am so excited!

ADAPT Museum--There will be two huge rooms of multimedia ADAPT historical displays, including blow-ups of 50 of Tom Olin's incredible photos, every T-shirt from every ADAPT action over the past 25 years, artifacts, memorabilia, first person accounts of every action, videos, slides, music. The folks from are bringing most of the items, news clippings, etc.

ADAPT Jeopardy—this is Jeopardy! ADAPT style!

Tales Around The Campfire—with Mark Johnson

The Show

The Barbeque
Several dignitaries have been invited. Representative Pat Shroeder, who came to the first action back in 1975 will be there!

This is only a partial list of what is happening, so come join us for this magnificent celebration of 25 years of activism. I’ll see you there!

This month, we asked Rahnee Patrick, a disability rights movement organizer from Chicago and one of AAPD's 2008 Paul G. Hearne / AAPD Leadership Award recipients, to share some of her thoughts. Rahnee's column follows.

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Neither Political Party Represents Us
By Rahnee Patrick

Somewhere on the Internet (I ♥ Google) is a picture of my face hanging over a large piece of red poster board, hand painted, with the word LIFE. The photo is for sale, right now. I imagine how the picture will be used: my round face protesting legal abortion. I envision the photo placed on websites and other propaganda that strives to criminalize abortion and other reproductive health even further. I do not want to limit access to reproductive health for women in the United States and around the world although the photo floating around the Internet could tell a different story.

Actually, I made the sign I held but the words I painted read: LIFE + DISABILITY = LIFE WORTH FEEDING. If you’ve ever made a sign to hold at a protest, you know you only have so many square inches to send a message. I was referring to Terri Schiavo, whose stomach tube that delivered nutrients to her disabled body was being removed. I do not agree that her feeding tube should have been removed so I joined other disability rights activists to protest and celebrate all the tubes that the disability community uses to live our lives – tubes for breathing, for hearing, for feeding, for peeing. However, there I stood, next to a man holding a sign with a photo of the fetus – a pro-life protester. I quickly moved away from him but the collective effect was present for the media and passers-by: we wanted to not only keep Terri fed but that we also supported making abortion illegal in this country. The overall effect made my stomach turn. 

I support women to be able to feely make choices about our own bodies, especially when it comes to our reproduction. Women with disabilities cannot afford to ally ourselves with criminalizing abortion in our country and in our world. Our country’s limited access to abortions and general reproductive health services has endangered so many women’s lives. Three years after Roe V. Wade, Congress decided Medicaid dollars cannot be spent to cover the cost of an abortion. The decision leaves those of us in poverty and on Medicaid to often forego abortion services, when we need them. Mississippi has only one clinic in its entire 898 square miles to provide abortions and is not the only state to limit its women’s rights to reproductive health services. We are grinding back to a time when women had to depend on a loose, underground network of people to access abortions, at the risk of the woman’s life and dignity. Other countries in the world, such as Romania, where abortion is illegal, leave women powerless, without any control or self-determination in their own lives. 

Meedia coverage of Senate Bill 609, the Prenatally Diagnosed Condition Awareness Act, co-sposored by Senators Brownback – R (KS) and Kennedy – D (MA) strikes a chord. The bill aims to amend the Public Health Service Act to increase the provision of scientifically sound information and support services to patients receiving a positive test diagnosis for Down syndrome or other prenatally diagnosed conditions. Too many times, disability or even its possibility, in a fetus has been cause for support of legal abortion. Disability is a part of the natural diversity of our human and animal lives. Its eradication diminishes the genetic diversity of our world and devalues the disability experience. People’s worth cannot be measured by whether s/he has a disability, whether we can work, do step aerobics or appreciate a Woody Allen movie.

Please note the phrase, “support services.” We disabled folks use a lot of support services, to feed, bathe, dress ourselves, to provide respite to our caregivers and families and to pay our bills. Support services means having government-funded help to improve the quality of our lives with our disabilities. Past and looming cuts to S-CHIP, educational acts, Medicare, Medicaid and Social Security threatens our lives as much as a mother and father who fear disability in their child’s life.

The disability community’s issues must bring the two political parties together, as Senators Brownback and Kennedy have done. But neither camp solely represents us. It’s important that we, women with disabilities, do not ally ourselves with either political party on the issue of reproductive health. They don’t quite understand our position. Yet.

In Fall 2004, I alerted AAPD's membership of data that had recently been released by the U.S. Equal Employment Opportunity Commission (EEOC) documenting an alarming decline in employment of people with significant disabilities in the federal government between fiscal years 1994 and 2003.

In January of this year, the EEOC released a new report noting that the problem has only gotten worse since 2003 and seeking to prod the Federal government to take affirmative steps to address this problem and increase the representation of people with significant disabilities in the federal workforce. The new report, entitled Improving the Participation Rate of People with Targeted Disabilities in the Federal Work Force, is on the EEOC website.

In the new report EEOC notes that the percentage of federal employees with “targeted” disabilities (a cross-disability group that includes workers with the most significant disabilities) has declined each year since reaching a peak of 1.24 percent in fiscal years 1993 and 1994. The report notes that while the federal government grew by over 135,000 workers between fiscal years 1997 and 2006, the number of federal employees with targeted disabilities decreased during that period from 28,671 to 24,442, leaving them at 0.94 percent of the overall federal workforce.

Alarmed by this trend, EEOC’s office of federal operations undertook to identify barriers and make recommendations for how federal agencies can improve their outcomes in attracting and retaining qualified workers with significant disabilities. Among the EEOC’s findings were:

• Inadequate coordination between federal agencies and job placement programs that serve people with disabilities;
• O ngoing existence of fears, myths and stereotypes within the federal government regarding the employment of people with disabilities;
• Lack of strategic planning at the agency level to improve hiring and retention of people with disabilities;
• A daunting federal application process, and a lack of knowledge on the part of federal hiring officials in how to use the special “Schedule A” appointing authority that enables federal agencies to expedite onboarding of workers with disabilities;
• Lack of knowledge regarding accommodations among agency officials; and
• Perhaps most importantly, a lack of accountability among all levels of the federal government in setting and attaining goals to hire people with disabilities.

The report also includes a number of recommendations, including:

• The establishment of numerical hiring goals for people with targeted disabilities on an annual basis, something that is required by EEOC Management Directive 715 but rarely happens;
• Providing mandatory training on disability for all management officials;
• Developing procedures for ensuring management accountability, as well as verification that goals are obtained;
• Ensuring that diversity considerations are included in senior leaders’ performance appraisals; and
• Issuing a policy statement from the agency head, emphasizing the agency’s commitment to equal employment opportunity and encouraging managers to use special hiring authorities to fill vacancies.

Within cabinet level agencies, the percentage of workers with targeted disabilities ranges from a high of 1.73 percent at the U.S. Department of Treasury to a low of 0.36 percent at the U.S. Department of State. 

In this election year, AAPD has questioned all of the presidential candidates regarding their plans for making the federal government more reflective of the U.S. population, where people with significant disabilities make up approximately 10 percent of the population. To see how candidates responded to that and other questions, visit AAPD Presidential Election Action Center on our website .

EEOC is to be commended for continuing to highlight this ongoing problem that is not getting enough attention from agency heads, the White House, Congress, or the media. Commissioner Christine Griffin is spearheading a federal effort to increase employment outcomes for people with disabilities in the federal government, and we need to add our voices to this important effort. I encourage those concerned to continue to raise this issue with the Bush Administration, with candidates for President, and with your members of Congress. We need agency heads to set goals and to be held accountable for achieving those goals, and we need to secure commitments during this election season so that this problem doesn’t continue to get worse. 

 

This month, we asked Ari Ne'eman, President of The Autistic Self Advocacy Network, to write about the recent New York University Child Study Center ad campaign around childhood disabilities and the disability community's response, led by Ari and his organization. (Read more about the NYU ad campaign).

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Phony Ransom Notes Can Have Real Consequences

By Ari Ne’eman, President, The Autistic Self Advocacy Network

 

 

“We are in possession of your son…We have your daughter…We have taken your son… We are making him squirm and fidget until he is a detriment to himself and those around him… We are destroying his ability for social interaction and driving him into a life of complete isolation... It’s only going to get worse…This is only the beginning…Autism…ADHD…Asperger’s Syndrome…OCD…Bulimia…Depression” –Excerpts from the NYUChildStudyCenter’s “Ransom Notes” Ad Campaign

 

“Individuals with disabilities are not replacements for normal children that are stolen away by the disability in question. They are whole people, deserving of the same rights, respect, and dignity afforded their peers.” –An Open Letter to the NYUChildStudyCenter, December 11^th, 2007

 

The second set of words above comes from a joint statement from twenty-two disability rights organizations, in response to a new advertising campaign by the NYU Child Study Center and produced by one of the nation’s largest advertising and public relations firms, BBDO. The ad campaign, entitled “Ransom Notes,” depicts phony ransom letters signed by six different disabilities. Each disability is purported to have ”kidnapped” a previously normal child from his or her parents, threatening to turn the child into a terrible burden unless parents seek the help of the NYU Child Study Center and similar medical institutions is sought. The ads launched last month, but were quickly withdrawn after immense outrage from people with disabilities, family members, professionals and others.

 

For those of you familiar with the disability community, it is probably not hard to understand why these ads were viewed as horrendously offensive. The notes resurrect old and dangerous stereotypes about people with disabilities; the idea of the child or person with a disability as a changeling, or a stand-in for a supposedly more “real” or “whole” human being stands out as a common theme in countless instances of violence and discrimination. Furthermore, the ads included information that was just plain inaccurate. Claims that an individual with a disability such as ADHD, autism, Asperger’s Syndrome or others will be a “detriment to himself and everyone around him'” or live “a life of complete isolation” do not reflect the reality of people with these disabilities. This type of fear-mongering sends a dangerous message, increasing stigma and diminishing respect for the lives of America’s millions of citizens with disabilities.

 

The ads were expected to garner over 700 million impressions over the four months they were to be up in New York City on kiosks, billboards, magazines and other locations, before expanding into five major markets across the United States. Instead, they were withdrawn in their entirety, a mere sixteen days after the start of the campaign. What caused the change?

 

The answer begins and ends with the disability community, which showed remarkable unity in responding to these offensive ads. Twenty-two disability rights organizations, including AAPD, ADAPT, Not Dead Yet, TASH and my own organization, the Autistic Self Advocacy Network, came together to call for the ads’ withdrawal in an unequivocal joint statement. We didn’t stop there, however. By organizing people with disabilities, family members, professionals, educators and countless other supporters, we arranged for thousands of calls, e-mails and letters to be sent to the NYUChildStudyCenter and the other supporters of the Ransom Notes ad campaign, calling for the immediate removal of the ads and an apology to the disability community. By the time our campaign had concluded, the New York Times, the Washington Post, the Wall Street Journal Online, the New York Daily News, United Press International, PR Weekly, Mental Health Weekly, Inclusion Daily News and many other venues had covered our response. Television and radio stations in the New York City area, as well as dozens of bloggers, addressed the controversy, raising greater awareness of the need for respect in advertising and public discourse about people with disabilities.

 

Responses like these are important, and not just because they provide an unrivaled opportunity to showcase the power the disability community can have when we act in unison. The depiction of people with disabilities as broken or kidnapped has practical consequences that are terrifyingly real. 

 

 “Maybe I could fix her this way, and in heaven she would be complete,'' said Dr. Karen McCarron in a videotape played at the murder trial of her three-year old autistic daughter, Katie McCarron, this past Thursday. Dr. McCarron believed that her daughter was broken. To “fix” her, she asphyxiated Katie with a plastic garbage bag as she struggled to get free. Karen McCarron saw children with disabilities as less than whole people, and the atrocity that ensued was the result of that terrifying misconception. The “Ransom Notes” ads spread similar mischaracterizations of disability.

 

It is instructive to note that a mere four days before Katie McCarron’s murder, a fundraising video for a group called Autism Speaks premiered. In the video, entitled Autism Every Day, another mother of a child on the autism spectrum announced how she had “actually contemplated putting Jody [her autistic daughter] in the car and driving off the GeorgeWashingtonBridge.” With Jody in the background of the camera shot, the woman, an executive Vice President at Autism Speaks, went on to say that “it’s only because of Lauren, the fact that I have another child, that I probably didn’t do it.” It is very clear the low value groups like Autism Speaks place on the lives of children and people with disabilities. Fortunately, the efforts of disability rights advocates stopped the NYUChildStudyCenter from continuing on the same ill-conceived path. As the trial of Dr. Karen McCarron continues, it behooves us to remember both that stigmatizing advertising has consequences and that we can and must do something about it.

 

Ari Ne'eman is the Founding President of the Autistic Self Advocacy Network, a non-profit organization of adults and youth on the autism spectrum that was the primary coordinator of the disability community’s response to the “Ransom Notes” ad campaign. Ari is an Asperger's autistic and a frequent speaker on autism spectrum and disability politics, special education, transition, service delivery and other topics relating to the disability community. He serves on the board of several disability rights groups and is currently studying Political Science and Economics at the University of Maryland-Baltimore County as a Sondheim Scholar of Public Affairs. To find out more about the Autistic Self Advocacy Network or to find useful information for self-advocates of all kinds, please visit our website at http://www.autisticadvocacy.org.

A word of introduction:

This month, we're giving the stage to RatifyNow, a new grassroots advocacy organization working to maximize the number of nations that ratify the United Nation's new disability rights treaty. The following was written by Michele Magar with Jeff Rosen. Magar and Rosen are disability rights lawyers and members of RatifyNow (as is AAPD). They participated in the treaty negotiations at the U.N. that produced the Convention on the Rights of Persons with Disabilities.

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RatifyNow, Not Later
By Michele Magar & Jeff Rosen


When people ask me why the new disability rights treaty matters, I cite statistics. I talk about the fact that 90 percent of kids with disabilities in developing nations don’t receive an education. And that in far too many nations, people with disabilities don’t have even fundamental rights, like the rights to marry, own property, sign contracts, vote, work, and retain custody of their children.

But what matters most about the treaty is its potential to spark grassroots disability rights movements throughout the world. Like any civil or human rights law, a human rights treaty is only a set of words on paper. But those words contain seeds that, when nurtured, birth passionate movements for equality. 

America ’s disability rights movement illustrates my point. When Congress enacted the Rehabilitation Act of 1973--which barred recipients of federal funds from discriminating on the basis of disability--it never imagined that people with disabilities were so eager for their rights, that they would occupy the federal building in San Francisco for 26 days to force the government to finally issue implementing regulations in 1977.

The movement picked up steam after Congress guaranteed children with disabilities the right to attend public school and receive the accommodations they needed to benefit from their education. Armed with an education and new advocacy skills, people with disabilities firmly gathered the reins of their movement, and “Nothing about us without us!” became their rallying cry.

Nearly thirty years after people with disabilities in the U.S. had successfully extracted Section 504 regulations from a reluctant government, their counterparts in other nations flew to New York to guide the text of the Convention on the Rights of Persons with Disabilities (CRPD), which was adopted by the United Nations a year ago and opened for ratification on March 30, 2007. The CRPD is largely the work of a remarkable coalition of more than 70 disability rights organizations, which unified into the International Disability Caucus during the four-year treaty negotiations that resulted in the treaty. 

Bridging differences across disability, geography, language, culture, and religion, the International Disability Caucus maintained solidarity and spoke with one voice – a strategy that served to set it apart from other lobbyists.

In fact, the IDC went farther than any other non-governmental organization ever had at the United Nations, achieving near-delegate status and unprecedented influence during the official proceedings. The IDC was allowed to testify from the floor, at times daily, to provide guidance on what it wanted in the treaty. New Zealand Ambassador Don McKay, who led the treaty negotiations, urged delegates to adopt the IDC text repeatedly throughout the proceedings.

The result is a treaty that bans disability discrimination in every sphere of life. It ensures that people with disabilities will enjoy the same rights as their countrymen and countrywomen without disabilities. And it transforms the frame of reference that defines how most of the world thinks about disability by affording people with disabilities rights instead of charity. It enshrines the rights to self-determination and equality.

If broadly implemented, the Convention on the Rights of Persons with Disabilities will improve the lives of a quarter of the world – the population comprised of people with disabilities and their families. It will empower the poorest of the poor, where disability is over-represented in every nation. Civil rights lays the infrastructure for economic development, so the treaty will also speed economic progress in nations that ratify it. If broadly implemented, the treaty’s guarantees will act as a global anti-poverty campaign.

But unless we act, Americans won’t benefit from the treaty, because President Bush has refused to sign it. We need to persuade the next president to sign the treaty in 2009, and the Senate to ratify it promptly afterwards. 

Why should Americans care about the treaty? There are many reasons. First, the Supreme Court has been steadily weakening the Americans with Disabilities Act. The treaty would strengthen anti-disability discrimination protection in the U.S.

Second, we have much to learn from other nations. The treaty creates a way for ratifying nations to share cutting edge policies and adapt best practices for local use. 

Third, our movement will grow stronger if we organize a U.S. ratification campaign. Done right, treaty advocacy provides the perfect organizing vehicle. Its appeal is universal and cuts across disability, population, geography, and other factors because its benefits cover every aspect of life. 

By pushing for the treaty, we will learn to work together and experience how pooling our strengths speeds and magnifies our success. Once the treaty is ratified, we can use our newfound solidarity to achieve other common goals as we continue to work together to advance the rights of people with disabilities.

So what can you do to support the treaty? First, educate yourself – there’s a wealth of information available at the United Nation’s website: www.un.org/disability. Second, spread the word: the Convention on the Rights of Persons with Disabilities remains virtually uncovered by the press.

In fact, the list of things you can do to support the treaty is far too long to include here, but you can find a range of tasks to accommodate however much time you can spare at www.RatifyNow.org. Click on “get involved” and you’ll see them grouped by genre. 

To stay up to date on treaty ratification campaigns in the U.S. and across the world, consider a free membership in RatifyNow, a unique blend of grassroots advocates and disability rights organizations dedicated to maximizing the number of nations that ratify the treaty. Based in the United States, RatifyNow uses its website to provide a clearinghouse of information to support the efforts of grassroots advocates to persuade their governments to ratify the treaty. 

The Convention on the Rights of Persons with Disabilities will dramatically improve the lives of people with disabilities and their families worldwide – but only if its protections are broadly implemented. A concerted effort to maximize treaty ratification in the next few months will reap benefits for people with disabilities for decades to come. 

If you’re looking for a cause that has the potential to improve the lives of a quarter of the world’s population, and spur economic development among the world’s poorest people, visit RatifyNow.org and get involved. Together, we can nurture the seeds contained in the treaty’s text and achieve a world where people with disabilities control their lives and experience equality. 

 

 

Since 2003, I have been serving as a Senate appointee (appointed by Senator Daschle) on a bipartisan federal advisory committee called the Ticket to Work and Work Incentives Advisory Panel.  The Panel, created in the 1999 Ticket to Work and Work Incentives Improvement Act, is charged with providing advice to the President, the Commissioner of Social Security, and the Congress, regarding the implementation of that legislation and the functioning of the work incentives that predated the legislation in the Social Security, Medicaid and Medicare programs.
 
The panel sunsets at the end of this year and we are in the process of finalizing the recommendations in our final report. In October, the panel circulated a draft final report that included a number of far-reaching recommendations designed to transform our four largest federal programs (Social Security Disability Insurance, Supplemental Security Income, Medicare and Medicaid) serving people with disabilities so that they more consistently encourage adults with disabilities to work to their full potential, save money, and become as economically self-sufficient as possible.

Some of the key recommendations in that October draft included:

* Allowing people with significant disabilities to keep their coverage for health care and long-term services and supports as their income goes up or they move from state to state, with workers buying into this coverage at a rate that is proportional to their income;

* Changing the statutory definition of disability for SSDI and SSI so that people do not have to swear that they are unable to work in order to qualify for income supports and health care;

* Creating a new “Transition to Economic Self-Sufficiency” (TESS) Program for youth and young adults between ages 14 and 30 with expanded supports and services designed to help  young people get on a path that will lead to the greatest economic self-sufficiency for them over the course of their adult lives;

* To help with TESS program implementation, doubling the budget for Vocational Rehabilitation and Independent Living with the new funds being targeted to serve TESS program participants;

* Launching a social marketing campaign to raise societal expectations regarding the capacity of people with disabilities to work and participate fully in community life;

* Implementing a job creation strategy that leverages the power of the federal government as an employer and a contractor to create more jobs that pay a living wage for people with significant disabilities; and

* Promoting strategies for reaching workers with adult-onset disabilities with flexible supports while they are still connected to the workforce that will enable them to return to work without having to apply for long-term federal disability benefits.

Having chaired the subcommittee of the Panel that developed these recommendations, I was excited that we were able to get some of these ideas out there in a draft form.  When our full Panel met at the end of October, many of these ideas received support from a majority of the panel members, although the wording of the Panel's final recommendations will have more of an emphasis on the need to test some of the most controversial ideas before they are implemented on a large scale.

Unfortunately, in the weeks leading up to the Panel meeting, some key members of Congress sent letters to the panel that called into question the need for “transformation” of the Social Security programs.  The Democratic Chairs of the House Ways and Means full committee and subcommittees on Income Security and Family Support and Social Security (Charles Rangel, Jim McDermott and Michael McNulty) sent a letter to the Panel on October 23 arguing that the “fundamentals” of the Social

Security programs were sound “and do not require transformation.”  They continued, “[t]he Social Security and SSI disability programs have been a great success at achieving the goals for which Congress created them: allowing individuals who have no or limited work capacity due to disabling impairments to live with some measure of financial security, dignity and independence.”  The Democratic Chair of the Senate Finance Committee, Max Baucus, sent a similar letter to the panel on October 29 stating that the Finance Committee (which has jurisdiction over SSDI, SSI, Medicaid and Medicare) “does not support transformative change of the Social Security disability programs,” including the specifics outlined in our draft report.

In the course of our work on the Ticket Panel, we made a strong effort to hear directly from people receiving SSDI and SSI to get their ideas for how the programs and their corollary health programs could be improved.  Last February, we hosted a summit meeting where we heard from beneficiaries from every state.  A copy of the report that captured the recommendations from that summit is on the Ticket Panel website at http://www.ssa.gov/work/panel. Having heard from numerous beneficiaries at the summit and at the quarterly panel meetings over the last four years, I am convinced that beneficiaries are not satisfied with the federal disability programs in their current form and feel constrained in achieving financial security, dignity and independence by programs that continue to punish them for trying to lift themselves out of poverty.  The Panel’s final report includes a recommendation that Social Security establish a permanent National Disability Beneficiary Work Council and National Disability Beneficiary Work Advocate within Social Security so that beneficiaries can have a stronger role in setting the course for the future of policy development regarding the Social Security disability programs.

Although I am disappointed in the Congressional letters reacting to our draft report, I am grateful for the leadership of the Ticket Panel’s chairperson Berthy de la Rosa Aponte and the majority of the Panel members who understand the need for transformational change in our largest federal programs.   I encourage readers to visit the panel website at the url above after the December 3 release of our final report and send me your reactions.  This kind of fundamental change is never easy, but I remain convinced that modernizing our largest disability programs is essential if we truly want to realize the goals of the Americans with Disabilities Act and build a disability middle class.

On Thursday, October 4, the House Judiciary Committee Subcommittee on the Constitution, Civil Rights, and Civil Liberties held a hearing on the ADA Restoration Act of 2007(H.R. 3195), legislation that would restore the original intent of Congress in providing broad civil rights protections to people with disabilities following dramatic changes to the meaning of "disability" under the Americans with Disabilities Act that have been made by the Supreme Court and lower courts in the last eight years.

AAPD's Board Chair, Cheryl Sensenbrenner, wife of Congressman Jim Sensenbrenner (WI-5), provided testimony regarding the need for and importance of ADA Restoration with the perspective of a disabled woman and family member of people with various disabilities.

An archived webcast (uncaptioned) of the hearing is available at the House Judiciary Committee's website.

Ms. Sensenbrenner's written testimony, submitted to the Congressional record, is available on AAPD's website.

Cheryl's powerful oral testimony follows:

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

U.S. House of Representatives Committee on the Judiciary

Subcommittee on the Constitution, Civil Rights, and Civil Liberties

 

Hearing on H.R. 3195

“ADA Restoration Act of 2007”

 

October 4, 2007

 

 Oral Testimony of Cheryl Sensenbrenner

Chairperson, Board of Directors

American Association of People with Disabilities (AAPD)

 

 

Chairman Nadler, Ranking Member Franks, and Members of the House Judiciary Subcommittee:

Thank you for the invitation to discuss the topic of ADA Restoration – an issue that affects the ability of literally millions of people with disabilities to enter and maintain our participation in the American workforce.

My name is Cheryl Sensenbrenner, and I am pleased to offer my testimony today as the Board Chair of the American Association of People with Disabilities. AAPD is the largest national cross-disability membership organization in the country.  

I must start my testimony by saying I am so proud of my husband, Congressman Jim Sensenbrenner, as well as Majority Leader Hoyer, for their hard work and leadership in introducing this legislation. I, like them, will continue to work relentlessly on this bill until it’s passed.

In addition to my affiliation with AAPD, I offer my testimony today based on my own experiences as a disabled woman and as a family member of people with disabilities.

I acquired my disability at age 22 when I was in a car accident. I remember the doctors telling me that because my back was crushed and in pieces, I’d spend my life in a bed from then on.

I knew I was hurt but I wanted to be a full member of society, so I always tried hard and did the best I could.

I have lived my life since that time using either a wheelchair, Canadian crutches, or walking with a cane and leg brace.

And I am proud of my full life as a disabled woman – as a wife, as a mom, and as a citizen.

I acquired my spinal cord injury about the same time my sister, Tara, was born with Down’s syndrome. Through her hard work and the support of our family, Tara graduated from high school, took college courses, has supported herself through various jobs, and bought and insured her own car.

I am here today to tell you that if and when Tara or I experience employment discrimination based on our disabilities, we will not be protected by the ADA.

As Majority Leader Hoyer said better than I could, the Supreme Court has substituted its own judgment for the judgment of Congress, and that is what has created the need for the restoration of the ADA we’re discussing today.

As a consequence of court-made law, we have an absurd Catch-22 – If you manage your disability well, if you do your best in spite of your disability, the Courts take away your civil rights protections.

If you don’t manage your disability well, you have civil rights protections, but you probably won’t be able to hold down a job! It’s absurd!

That means that because I worked hard in physical therapy, because I wear a leg brace and walk with a cane, the Courts would find me “not disabled enough” to have civil rights.

But if I had given up after my spinal cord injury – or if Tara had bought into the low expectations society often had for her – if neither of us tried to live to our fullest potential, we would have been protected under the ADA!

The lawyers and policy experts will explain all of this in greater depth.

But it just seems to me that the last message we would want to send to Americans with disabilities – particularly youth with disabilities and returning soldiers – is the less you do to manage your disability, the less you try, the more likely you are to be protected under civil rights laws.

It’s just horrible policy, and it really makes no sense. We shouldn’t be punishing people for successfully managing their disabilities and trying to work and pay taxes!

ADA Restoration is really all about fairness. As a country, we should be focusing on disabled peoples’ abilities and encouraging people to achieve to their full potential.  

But instead, the courts have been punishing people for trying too hard, for being too productive, for wanting to pay taxes.

This makes no sense.

Please help us clear up the mess the Courts have made. Help us restore Congressional intent. Please support and help us pass the ADA Restoration Act so that the ADA can open wide the doors of opportunity to all Americans.

Thank you.

The following op-ed, which appeared in the Washington Post on Labor Day and addresses the damage done by the annual Muscular Dystrophy Association's telethon, was written by one of the 1970s poster children of the MDA's annual telethon, hosted by Jerry Lewis.

~~~~~~~~~~

No Longer One of 'Jerry's Kids'
Jerry Lewis' annual MDA Labor Day Telethon means well, but misses the point.

By Ben Mattlin
Monday, September 3, 2007

When I was six years old, I appeared on the Jerry Lewis Labor Day Telethon for the Muscular Dystrophy Association. I don't have muscular dystrophy, but I was born with spinal muscular atrophy, a similar progressive neuromuscular weakness. I have never walked or stood.

On the broadcast, I was asked for my name and age. That's about all. Then I was dismissed.

I never met Jerry Lewis. I never became famous, as I'd dreamed. I was cute, though, with big blue eyes and unruly blond curls, and I was in several magazine and newspaper ads for MDA. For one of them, I was positioned standing in leg braces -- which I'd used years earlier for physical therapy, before discovering the torture didn't actually do me any good -- and I was told the caption over my head would be, "If I grow up, I want to be a fireman."

I didn't like this. If? My prognosis was a normal life expectancy. Besides, I didn't want to be a fireman! I wanted to be a scientist or a detective. So, in the photo, I'm crossing my fingers, where no one can see. I never did another ad.

Many years later, when I was an adult, I used this image to protest the telethon's simplistic treatment of "Jerry's Kids." I found that many others were mounting similar demonstrations. Now I find myself asking whether our message was heard. The TV hosts still ask us to "help Jerry's kids." But does the public understand that, even more than help, those of us with disabilities want respect?

Perhaps. MDA now pays lip service at least to the idea of disability rights. The telethon now shows some kids with disabilities doing active things. Yet fundamental problems remain.

Today's telethon, for example, will feature nondisabled celebrities onstage raising money for disabled kids, who are mostly offstage. I know the purpose of the telethon is to raise money, and that people won't tune in unless there are performers they want to see. Nevertheless, can you imagine an NAACP fundraiser hosted exclusively by white people?

If you are not disabled, you may think this is a relatively minor issue. But it matters. The other day my wife and I were at the theater with our two young children. During the intermission, an usher dutifully came over and asked my wife if I needed to use the restroom.

"How should I know?" she answered. "If you have a question for my husband, why don't you ask him yourself?"

The usher did not make that mistake again.

The larger issue is one of respect. And while I understand the sympathetic impulse (and marketing power) of a slogan like "Help Jerry's Kids," I don't think it helps us gain respect.

Of course, MDA may respect the disabled more than its fund-raising tactics imply. If it wants to stand out as an advocate for disability rights, however, it should set a better example -- and demand that its corporate contributors do as well.

When most people see those of us with severe, progressive neurological conditions, they want to help, and I am not ungrateful. The desire to cure is probably human nature. And MDA's main mission is to be a medical charity; it claims to spend 77 cents of every dollar it raises on services, an admirable percentage, and finances hundreds of clinics and medical researchers.

Still, for the past 30 years, the message of the disability-rights movement has been as consistent as it is simple: We're fine as we are. We don't need fixing. We need access. We need respect. We need work. In other words, we need the same things everybody else does.

So today, I won't be watching the telethon. My wife and I and our two kids have better things to do.

Ben Mattlin is a writer and editor who lives in Los Angeles.

The following is an excerpt from the written testimony I provided on behalf of not only AAPD but also three other national, cross-disability, non-partisan membership organizations - ADAPT, the National Council on Independent Living (NCIL), and Self Advocates Becoming Empowered (SABE) to the Senate Health, Education, Labor, and Pensions (HELP) Committee last month for the "Community Services and Supports: Planning Across the Generations" hearing on long-term care.

To read my entire written testimony, please visit our website  here . 

"...Perhaps the most important point I could make this morning is that every American is a stakeholder in today’s topic. There are currently 10 million Americans in need of long term services and supports, and that number is expected to rise to nearly 15 million by 2020.[1] These individuals are male and female, adults and children, with a broad range of disabilities represented. This is in no way a static population.

Disability civil rights laws start with the recognition that disability is a natural part of the human experience that in no way should limit a person’s right to make choices and participate fully in all aspects of society. Any person at any time can acquire a disability. Some people acquire disability as they age. By 2030, when the youngest baby boomers reach retirement, the population of those age 65 and older will nearly double to 71 million, comprising 20 percent of the American population.[2] Some people acquire their disabilities through birth; some through accident or injury; some through illness. Still others acquire disability while putting their lives on the line for our country. Traumatic brain injury has become the signature wound of the Iraq-Afghanistan wars, with estimates as high as 60-70% of all wounded returning vets having TBI.[3] This unprecedented population of disabled soldiers and veterans is expected to have ongoing needs for long term services and supports over the course of their lifetimes, with some recent reports suggesting the cost of care could be as much as $14 billion over the next 20 years.[4]

Given the diversity of the disability population across the age spectrum, our country requires a long-term care system that affords people real choice in how and in what environment they will receive the supports they need to live. This means a system built to work for all people without regard to age or disability. One that begins with the assumption that adults with disabilities want to work, children with disabilities want to learn and play with their neighborhood friends, and the vast majority of individuals in need of long-term services and supports would rather receive those supports at home with family and friends. One that looks holistically at people with disabilities and understands that long term care should be integrated with acute care services; that personal care attendants are a reasonable workplace accommodation; and that people should have freedom in choosing where to live and not be forced into certain types of housing in order to qualify for the supports they need to survive. Only a long term care system that is comprehensive in scope could satisfy the existing as well as impending demand for long term care that moves us away from our long legacy of warehousing people with disabilities – simply maintaining them so they can survive another day – and toward investing in them, with an expectation of return. Choice and control should be at the foundation of any comprehensive reform. Sadly, this vision of comprehensive reform is the complete opposite of what we have in place today.

Our current system of long-term care dates back to 1965, when the Medicaid and Medicare programs were first created.[5] Not surprisingly, given the origins of these programs, the system continues to exemplify the historically low expectations society has had for people with disabilities for decades. With the expectations for us so low, the mission of the old system was and remains to this day focused on simply maintaining people with disabilities in nursing homes, other institutions, and back rooms, outside of view and away from the mainstream. In 1965, people with disabilities were largely out of sight, because society was inaccessible, both literally and attitudinally. In 1965, states still had involuntary sterilization laws for people with disabilities. Curb cuts were few and far between. There was no Americans with Disabilities Act (ADA). It is 42 years later, and it is an abomination that hundreds of thousands of people with disabilities remain trapped in a broken system that steals lives, saps peoples’ spirit, and enriches service providers at the expense of disabled people and their families.

The existing long term care system in this country is shouldered almost entirely by family caregivers and public programs provided in institutional settings, in overly medical ways that are often unnecessary and needlessly expensive. Private insurance for long term care comprises only 3% of long term care spending, and a recent study showed that as few as 10% of Americans can even afford a quality, private long term care policy.[6] The rest of the population gains access to the existing public system by “spending down” to a poverty level which triggers their eligibility for Medicaid and in turn, the supports they need.

The government as well as the private sector has failed Americans in planning for the onset of disability. Everyone is paying for the inadequate, problematic system, and we are paying big ..."

In June, I had the opportunity to participate in a rally for Independent Living near 10 Downing Street in London that was organized by the U.K. disability community, with strong leadership coming from a service provider called “Scope.” Scope has been spearheading a campaign in the U.K. called “Time to Get Equal.” The symbol for the campaign is a bright yellow circle with a bright blue equal sign, and there were a number of people at the rally in wheelchairs who had that symbol covering the wheels of their chairs. The image was very powerful.

After the rally, two AAPD staff members and I had a chance to visit the Scope offices and meet with their senior staff. Scope has historically been a large service provider not unlike UCP in the United States. From what I saw and heard, I believe Scope could be a real model for what a modern disability service provider organization should be. A majority of Scope’s board of directors are people with disabilities, and they have disabled people in significant numbers at all levels on their staff. Their organization had the look and feel of a large disability-controlled organization like Independence First in Milwaukee or Granite State Independent Living in New Hampshire. They have been working with renowned disability activist Rachel Hurst to transform their organization, and they are well on their way.  They spend close to $10 million annually on what they call “campaigning” and what we would call “advocacy” and “lobbying.”

Scope’s Time to Get Equal campaign is about ending discrimination against people with disabilities in the U.K. It covers a broad range of areas including but not limited to abuse, access, attitudes, education, employment, the internet, and transportation. The messaging is edgy, field-tested, and appealing to young people and seniors. In short, the campaign is effective and is having an impact on the way people with disabilities are perceived in English society. The rally attended was part of a “Time to Get Equal Week” of activities throughout the U.K. to raise awareness of the campaign and sign up individuals who want to get involved. To learn more about Scope and the campaign, go to www.scope.org.uk.

As you might imagine, I was inspired by what I saw in the U.K. and I will be working with the AAPD Board, staff, members, and coalition partners to develop something equally effective for the U.S. disability movement. I encourage AAPD members to send me your ideas at ImparatoA@aol.com.

The week before I went to London, I had the opportunity to attend a televised awards ceremony in Dublin for organizations that were recognized for being the best in seven categories related to customers, employees, and constituents with disabilities.   The ceremony marked the end of a nine months assessment process which examines excellence in business practices related to disability (www.theabilityawards.com), and is the brainchild of a dynamic blind Irish woman named Caroline Casey. Casey founded and runs the Aisling Foundation, which developed the concept, pulled together the right partners, and is involved in evaluating and selecting the awardees with the help of a blue ribbon panel of judges. 

What was most impressive to me about the Ability Awards was not the posh ceremony at DublinCastle, although that was very impressive. The thing that really excited me was the level of media attention that this awards program receives in Ireland. This happened in part because the ceremony included a strong showing from disability, business and government leaders, including the President of Ireland. The ceremony was televised on one of the top Irish television networks on Thursday night between 10:45 and 11:45 p.m. Two days after the ceremony, Ireland’s leading newspaper, the Irish Times, had a special section of their newspaper devoted to profiling the honorees and related sidebars that explored a variety of topics related to the business case for disability best practices. I was able to do a radio interview on one of the top national radio shows in Ireland the afternoon before the awards ceremony. I also had the opportunity to have lunch with Gar Holihan, the CEO of the AuraCobhLeisureCenter, the company that received the top honor. Holihan’s company is a medium-sized leisure/fitness company in Ireland that completely gets the business value of welcoming customers with disabilities and their families at their facilities and events.

Having had the opportunity to meet many disability and business leaders in Ireland and the U.K., I came back to the States convinced that AAPD and our partners can do a better job making the business case for doing the right thing by our community, engaging CEOs and other top managers in our work, getting attention to our issues in the mainstream media, and taking creative and innovative approaches to getting our message out. To be sure, our friends in Ireland and the U.K. disability communities feel they have a lot to learn from AAPD and other disability organizations in the U.S. as well. With the goal of sharing ideas and best practices and building a stronger global disability movement, I am committed to engaging in more cross-Atlantic dialogues and sharing in the months and years to come. Working together rather than in isolation, we will get to equal faster.

(published in the Washington Post , Sunday, May 20, 2007)

by Andrew J. Imparato and Anne C. Sommers

In its preamble, the recently unveiled U.N. Convention on the Rights of Persons With Disabilities recognizes"the inherent dignity and worth and equal and inalienable rights of all members of the human family as the foundation of freedom, justice and peace in the world."

We wonder what Oliver Wendell Holmes would have said about that.

This month marked the 80th anniversary of the disgraceful Supreme Court decision in Buck v. Bell, which upheld Virginia's involuntary sterilization laws. In his majority opinion, Holmes declared: "It is better for all the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind . . . Three generations of imbeciles is enough."

Although eugenics was eventually dismissed as "junk science," it didn't happen before states authorized more than 60,000 forcible sterilizations and segregated, institutionalized, and denied marriage and parental rights to those deemed "genetically unfit."

Though society may be inclined to regard Holmes's detestable opinion in Buck v. Bell as a relic of a time past, eerie similarities exist in contemporary remarks of the well-respected.

Justifying the sterilization of "genetically unfit" individuals, Holmes wrote that Carrie Buck was "the probable potential parent of socially inadequate offspring."

Some 72 years later, renowned embryologist Bob Edwards said, "Soon it will be a sin for parents to have a child that carries the heavy burden of genetic disease. We are entering a world where we have to consider the quality of our children."

Not long ago, an embryo entrepreneur boasted on her business's Web site, "In the process of screening donors, we select only those that have clean medical backgrounds. . . . The embryos that are available have all been medically 'graded,' so that the recipient family knows the quality of the embryos that they will be implanting."

In the past, eugenicists emphasized the "burden" of disability. Holmes wrote that individuals with disabilities "sap the strength of the State."

In recent years, Peter Singer, a professor of bioethics at Princeton University, has said, "It does not seem quite wise to increase any further draining of limited resources by increasing the number of children with impairments."

In January, the American College of Obstetricians and Gynecologists urged all women regardless of age to undergo prenatal screening for Down syndrome, aware of statistics that greater than 85 percent of pregnancies diagnosed with Down syndrome end in abortion.

Several states recognize life with a disability as an injury in "wrongful life" lawsuits, and certain judges who hear these cases agree that in some instances, selective abortions help answer a greater policy concern in curbing health-care expenditures.

Last fall, Britain's Royal College of Obstetricians and Gynecologists argued for "active euthanasia" of significantly disabled newborns to spare parents emotional and financial burden.

Two years earlier, the Groningen Protocol emerged in the Netherlands; it proposed selection criteria for euthanizing babies and children with disabilities.

And across the United States, "futile care" policies have required that the most vulnerable give up their hospital beds -- and lives -- for those with more "potential."

In stark contrast to words such as "defective," "burdensome" and "futile" are the words of civil rights laws that liberate and defend.

The Americans With Disabilities Act recognizes disability as a natural part of the human experience that in no way should limit an individual's ability to participate fully in all aspects of society. The U.N. convention reaffirms that people with disabilities have both a right to life and a right to the effective enjoyment of that life on an equal basis with others.

On this 80th anniversary of Buck, let's not foolishly believe that victims of eugenics are an artifact of history. So long as we speak in terms of good genes and bad genes, recognize a life with a disability as an injury, and allow health policies to value some lives over others, we continue to create human rights violations every day.

Andrew J. Imparato is president and chief executive and Anne C. Sommers is the policy counsel of the American Association of People With Disabilities, based in Washington.
 

 

 

 

By Lauren Spiro, Director of Public Policy, National Coalition of Mental Health Consumer/Survivor Organizations

& Judi Chamberlin , Director of Education and Training, National Empowerment Center 

H.L. Mencken said, “For every complex problem there is a solution that is simple, neat, and wrong.” The Virginia Tech tragedy – in which a student was responsible for the shooting deaths of 33 people, including himself – has been generating this kind of solution.  

Governor Tim Kaine of Virginia recently suggested one such misbegotten plan: the creation of a list of individuals ordered into involuntary mental health treatment, to be reported on a state’s Central Criminal Records Exchange. On the Hill, there is a proposal to develop a national list of everyone who has ever been involuntarily committed to a mental hospital, which would be shared with law enforcement personnel. 

These are examples of knee-jerk, ill-informed, short-sighted “solutions.” Eroding civil liberties will not make our community safer. Instead, it will waste precious resources that could be better spent on solving the problem. Lists such as the one the governor has ordered and the one proposed on the Hill would have the following unintended negative consequences:  

• Such a national list would include the names of millions of people whose mental health history does not involve violence.
• The possibility of ending up on the list would drive people away from mental health services.
• There is a great likelihood that the list would become public and expose private health care information.
• The list would inevitably lead to further stigma and discrimination (for example, in renting an apartment or applying for a job). 

Instead, a thoughtful approach to the real problems exposed by the tragedy can lead us toward a future in which complex problems have complex but workable solutions. Some facts: 

• Research shows that people diagnosed with mental illnesses are no more violent than other citizens, and, in fact, are more likely to be victims of violence than perpetrators. (Steadman, H. et al., Arch. of General Psych., 55:393-401, 1998; Teplin, L. et al., Archives of General Psych. 62:911-921, 2005.)
• Stigma and discrimination are major obstacles for people diagnosed with mental illnesses.
• Treatment approaches that are voluntary and non-coercive are most likely to engage people, while force and coercion drives them away from treatment.

Countless individuals have recovered from mental illness and become productive citizens, aided by the right mix of services and supports, including peer-run self-help programs. Those of us who have recovered have much to share about our experiences and our knowledge about what is helpful and what is not. In the aftermath of this tragedy, we have an opportunity to work together to insure that people get effective mental health care that responds to their individual needs. 

The President’s New Freedom Commission on Mental Health (2003) called for major changes in our nation’s mental health system so that it could better meet the needs of individuals and communities. The Commission recommended that the mental health system be consumer- and family-driven and ensure that everyone diagnosed with a mental illness has a chance to recover and become a full participant in society. It is a disgrace that the recommendations in the Commission’s Report, which are supported by many national mental health organizations, have not been implemented. There continues to be a lack of voluntary, accessible, affordable, culturally appropriate mental health services and supports across the United States. We need to invest in such programs and services, which have a proven track record in helping people recover.  

A transformed mental health system would not let people fall through the cracks. It would focus on programs that promote wellness, recovery and resiliency. People who have psychiatric histories would be included in discussions concerning them just as other groups are included when decisions are made about them. Trauma – such as bullying, physical and sexual abuse, exposure to violence or natural disaster, physical and emotional neglect, and general disrespect of people who appear different or odd – would be recognized as playing a major role in the development of emotional distress and the diagnosis of mental illness. Peer support and open dialogues with diverse stakeholders – two of the most promising methods of engagement for people with histories of trauma, emotional distress, or mental illness – would be widely practiced.  

Lastly, there would be “nothing about us without us”: We who have recovered from mental illness would be consulted by the media and others when mental health topics are in the public policy arena. We can provide a broader understanding of the issues involved and offer positive solutions. We also can offer information about self-help/advocacy organizations we have developed around the country and about the active role we are playing in transforming the mental health system. Allowing others to speak “for” us perpetuates the myth that we are unable to represent our own interests.  

For more information about the National Coalition of Mental Health Consumer/Survivor Organizations or for recommendations addressed to young adults, the media and the academic community following the Virginia Tech tragedy, go to www.ncmhcso.org . 

Disability history was made on March 30, 2007 at the United Nations signing ceremony for the UN Convention on the Rights of Persons with Disabilities which garnered unprecedented support and record-setting numbers of signatures. The Convention has enjoyed bragging rights since its inception. First proposed by Mexican President Vicente Fox, in just a few years, the Convention moved from an idea to the first human rights treaty of the 21^st century, making it the fastest negotiated international human rights treaty ever.

Mexico signed. Canada signed. The European Community signed. 80 of 192 nation-members signed, and yet, the U.S. was not among them. The U.S. did not even send a representative to the ceremony, a simple act which a number of non-signing countries recognized the importance of doing. John Lancaster, Executive Director of the National Council on Independent Living (NCIL) and the President of the United States International Council on Disability (USCID), was present at the signing ceremony and recently shared his first-hand experience in a letter to NCIL members:

“As I sat in the observers' area on the floor of the UN's General Assembly Hall, delegates from 80 nations and the European Community took their turn at the official signing table to commit their country to the human and civil rights of people with disabilities. At several points, my eyes welled with tears. They should have been tears of joy and pride as an American, as a citizen in the country that had created this world-wide movement for the rights and empowerment of people with disabilities. Instead, they were tears of shame and embarrassment...”

The Convention advances eight main principles – respect for inherent dignity, autonomy, and independence of persons; nondiscrimination; full and effective participation and inclusion in society; respect for difference and acceptance of people with disabilities as part of human diversity and humanity; equality of opportunity; accessibility; equality between men and women; respect for evolving capacities of children with disabilities and respect for the rights of children with disabilities to preserve their identities. The Convention on the Rights of Persons with Disabilities goes beyond simply declaring basic rights and focuses instead on inclusion and participation – that is, the actions necessary to ensure that these basic rights are more than empty promises.

Although the U.S. has not been in a rush to issue a statement of explanation as to why it did not sign, the U.S. was certainly not shy in issuing strong language early in the process – indeed, before there was even draft language – of its intent not to sign, citing domestic rather than international focus as most appropriate for change and improvement.

Whatever official or unofficial explanation or theory advanced, there is too much at stake for the U.S., after years of gradually increasing involvement in the Convention process, to turn its back on this historic treaty at a most crucial moment.

ADAPT, American Association of People with Disabilities (AAPD), National Council on Independent Living (NCIL), and Self