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Celebrating Women in the Disability Rights Movement

/in /by The Arc

As we celebrate Developmental Disabilities Awareness Month and Women’s History Month in March, we are reminded of the powerful role women have played in the disability rights movement. From visionary founders to modern-day pioneers, the fight for the rights and inclusion of people with intellectual and developmental disabilities (IDD) has been shaped by courageous women leading the charge.

Generations ago, visionary mothers like Ann Greenberg, Elizabeth Boggs, and Eleanor Elkin sparked a grassroots revolution and laid the foundation for The Arc nationwide.

  • Greenberg founded AHRC New York City after placing a classified ad to connect with others raising children with disabilities.
  • Boggs, parent of a son with a disability, helped found The Arc, served as our first national woman president, and counseled President John F. Kennedy on intellectual disabilities.
  • Elkin founded a mothers’ support group in Bucks County, Pennsylvania, that paved the way for The Arc of Bucks County.

These women changed the face of our country by demanding that children with disabilities have equal access to education. Thanks to their advocacy, millions and millions of children with disabilities have received the education necessary to allow them to live the lives of their choosing.

From the start, disabled advocates have led the fight for disability rights, often at great personal cost. The disability rights movement owes an enormous debt to trailblazers like Judy Heumann and Lois Curtis, disabled women whose leadership transformed the world. Heumann was a global disability rights advocate, and Curtis secured the right to community living in her landmark Supreme Court case Olmstead v. L.C. Their legacies, alongside that of Eunice Kennedy Shriver—who founded the Special Olympics—continue to shape the fight for disability rights today.

And day in and day out, the heart of our work lies with direct support professionals—87% of whom are women—who provide life-changing care that empowers people with IDD to thrive in their communities.

Today, women continue driving our mission forward within chapters of The Arc around the country. At The Arc of the United States, we’ve been fortunate to learn from women like Marty Ford, whose four decades on The Arc’s federal policy team and leadership of the Consortium for Citizens with Disabilities have shaped the disability landscape today.

These examples merely hint at the bold women, well-known and unsung alike, whose courage, ingenuity, and grit brought us this far. As we continue building on their legacy, we are humbled to follow in their footsteps.

– Katy Neas, CEO & Laura J. Kennedy, Immediate Past President

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The Arc Mourns Passing of President George H.W. Bush

/in , , /by The Arc

The Arc released the following statement following the death of President George H.W. Bush.

“President Bush and members of his administration were crucial participants in the development and enactment of the Americans with Disabilities Act, one of the greatest legislative victories for people with disabilities in our nation. This landmark law is one of the ways in which our country leads the world in respecting and valuing the lives of people with disabilities. We salute the important impact that President Bush’s commitment to civil rights will continue to make in the lives of people with disabilities for many generations to come,” said Peter V. Berns, CEO of The Arc.

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The Arc Responds to the Violence in Charlottesville

/in , /by The Arc

Washington DC – The Arc released the following statement in response to the violence in Charlottesville, Virginia:

“Our collective hearts break after witnessing the hatred, violence, and innocent death that rocked Charlottesville, Virginia this past weekend. This hatred does not represent our America; it is a shocking betrayal of the values of our nation. We are sickened by the neo-Nazis and white supremacists who brought hate and violence into the streets, and appalled that President Trump chose to place blame not only on them, but on those who were protesting against this resurgence of evil in our society. The counter protesters who stood up for the inclusion that America was founded upon are not responsible for what happened – it was those resorting to violence while spewing racist, anti-Semitic, homophobic, and islamophobic vitriol who were at fault.

“People with intellectual and developmental disabilities have faced decades of abuse, discrimination, and institutionalization. We must not forget that the genocide perpetrated by the Nazis in Germany included among its targets those with disabilities, and that eugenic sterilization was practiced here in the United States. The occurrences of this weekend remind us of dark times in our history, and of the hate and ignorance that fueled these deplorable actions. That hate was alive this weekend.

“Disability does not discriminate and people with intellectual and developmental disabilities are represented in all minority groups: people of color, immigrants, refugees, members of every religious group, and members of the LGBTQ community. We remain on the side of inclusion, on the side of our brothers and sisters in civil rights who were brutally attacked in Charlottesville,” said Peter V. Berns, Chief Executive Officer of The Arc.

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RE: Clemency for Ledell Lee

/in , , , , /by The Arc

Dear Governor Hutchinson:

I write on behalf of The Arc of the United States (The Arc) to urge you to commute the death sentence of Ledell Lee pending a full clinical evaluation to determine whether Mr. Lee has an intellectual disability (ID). The Arc is a national non-profit organization which, for over 65 years, has sought to promote and protect the civil and human rights of individuals with intellectual and developmental disabilities through the work of its national office and over 650 state and local chapters throughout the country. Through its National Center on Criminal Justice and Disability®, The Arc seeks justice for those with ID who find themselves entangled in the criminal justice system, often without necessary accommodations or understanding of their disability.

The Arc has deep sympathy for the family and friends of the victims in this case, and we support appropriate punishment of all responsible parties. However, Mr. Lee’s history is replete with evidence indicating a potential ID diagnosis, which would bring him under the protection of the United States Supreme Court’s decisions in Atkins v. Virginia, 536 U.S. 304 (2002), Hall v. Florida, 134 S. Ct. 1986 (2014), and the more recent decision in Moore v. Texas, No. 15–797, slip op. (U.S. Mar. 28, 2017).

In its 2002 Atkins decision, the U.S. Supreme Court recognized the special risk of wrongful execution faced by persons with ID (formerly termed “mental retardation”) and banned the execution of persons with ID as cruel and unusual punishment under the Eighth Amendment, noting that individuals with ID “do not act with the level of moral culpability that characterizes the most serious adult criminal conduct” and that “[n]o legitimate penological purpose is served by executing a person with intellectual disability…to impose the harshest of punishments on an intellectually disabled person violates his or her inherent dignity as a human being.” In its 2014 Hall decision, the U.S. Supreme Court further clarified its decision that people with ID not be executed in violation of the Constitution, requiring that adaptive behavior evidence, beyond IQ test scores alone, be taken into account when determining whether an individual has ID. The more recent Moore case further confirms adaptive behavior criteria as necessary in determining whether someone meets diagnostic criteria for ID, and that such criteria must comport with modern clinical and scientific understanding of ID.

The evidence presented by the neuropsychological expert in this case, Dr. Dale Watson, supports the conclusion that if Mr. Lee undergoes a full evaluation, he will likely meet the three prongs of an ID diagnosis: (1) significantly impaired intellectual functioning; (2) adaptive behavior deficits in conceptual, social, and practical adaptive skills; and (3) origination of the disability before the age of 18. In order to complete his analysis, Mr. Lee’s adaptive deficits and history during the developmental period (before age 18) need to be fully assessed. Individuals with ID—like everyone else—differ substantially from one another. For each person with ID there will be things he or she cannot do but also many things he or she can do. Because the mixture of skill strengths and skill deficits varies widely among persons with ID, there is no clinically accepted list of common, ordinary strengths or abilities that would preclude a diagnosis of ID. Thus, the focus in assessing an individual’s adaptive behavior must be on deficits. As recently confirmed in Moore, adaptive strengths are irrelevant to this analysis and IQ alone cannot paint a full picture of whether a person has an ID. Thus, we urge that Mr. Lee receive a full evaluation for ID to determine whether he may be eligible for the Atkins constitutional protection from the death penalty.

Given the high likelihood of ID in this case, it is troubling that the lawyers who represented Mr. Lee throughout his trial failed to properly investigate evidence of Mr. Lee’s potential ID. As a result, no evidence of Mr. Lee’s potential disability was presented to the jury during the sentencing phase of his trial. If a full evaluation confirms Mr. Lee’s suspected diagnosis of ID, then Mr. Lee’s death sentence violates current prohibitions against cruel and unusual punishment as set forth in the U.S. Supreme Court decisions in Atkins, Hall, and Moore.

The Arc does not seek to eliminate punishment of Mr. Lee or others with disabilities, but rather, to ensure that justice is served and the rights of all parties are protected. The Arc is committed to seeking lawful outcomes for people with ID and will continue working to ensure that the U.S. Supreme Court rulings on this issue are abided by in jurisdictions across the country. I humbly ask that you consider commutation to address the possibility of an unconstitutional miscarriage of justice in the case of Ledell Lee.

Most respectfully,

Peter V. Berns
Chief Executive Officer
The Arc of the United States

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The Arc’s Letter to Showtime on Offensive Comedy Special

/in /by The Arc

May 6, 2016

Mr. David Nevins
President and Chief Executive Officer
Showtime Networks Inc.

Dear Mr. Nevins,

I am writing in regard to Gary Owen’s Showtime Special “I Agree with Myself” and its flagrant mockery of people with intellectual and developmental disabilities (I/DD). As the nation’s largest organization serving and advocating on behalf of people with I/DD, with a network of more than 650 chapters across the country, we’ve received many outraged complaints about the content of this program. Having watched the offensive clip myself, I felt compelled to contact you to voice our concerns.

The segment I am referring to includes Gary Owen using the word “retarded” to describe his cousin with intellectual disabilities. This term is outdated, hurtful, and people with I/DD have soundly rejected it and, for decades, have been advocating for people to respect them as fellow human beings and cease using that term to describe them.

In addition to the use of this slur, the content of his act and tone he took are even more upsetting. His bit is demoralizing and attacks individuals with I/DD on multiple levels, from their speech to their sexuality. He dehumanizes them for laughs, not taking into account the dark history individuals with disabilities have faced in our nation. Individuals with disabilities have suffered through decades of discrimination and humiliation including forced sterilization, abuse, and institutionalization. The use of the r-word has been rejected by the disability community because it is a reminder of the discrimination our community has endured.

It seems that the media is more frequently picking and choosing when to invoke the First Amendment. I hope you can see that this goes beyond an issue of an artist’s freedom of speech – this is hate speech. The fact of the matter is that Owen’s special contains callous verbal violence against a minority group. I can’t help but wonder if Owen targeted a specific race or gender, would swifter action be taken?

I know that earlier this week you spoke with Tim Shriver, Chairman of Special Olympics International, about this matter. The Arc stands with Special Olympics, as well as dozens of other disability organizations, and thousands of other advocates across the country who are united in our outrage that Gary Owen and Showtime have failed to pull this program from On Demand or edit out the offensive segment.

I welcome the opportunity to discuss this matter with you or Mr. Owen. On behalf of millions of people with I/DD and their families, I urge Showtime to take appropriate action.

Sincerely,

Peter V. Berns

CEO, The Arc

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The Arc Wants to Hear About Your Experience Applying for Jobs Online

/in /by The Arc

If you are an individual with intellectual and/or developmental disabilities (I/DD) (or someone who provides assistance to an individual with I/DD), The Arc wants to hear about your experience applying for jobs online!

Over 85% of individuals with I/DD are unemployed and rely solely on family and/or government supports to get by. The lack of employment options for people with I/DD reduces opportunities for them to interact with their peers in an integrated setting and reinforces the harmful stereotype that people with I/DD are not productive members of their communities. The Arc works in a myriad of ways to improve the employment outcomes for individuals with I/DD to ensure they are able to lead independent, meaningful lives in the community in competitively paid jobs.

As businesses increasingly shift to online platforms, a major concern within the disability community over the last decade has been the accessibility of websites for individuals with disabilities. In an age where more than half of new hires are sourced from the web, it is vital to ensure that individuals with I/DD are able to utilize all of the available tools to gain meaningful community-based employment and stay out of poverty. Great strides have been made in recent years towards improving the accessibility of various websites for individuals with visual and hearing disabilities through methods such as closed-captioning and compatibility with screen-reading software. In allowing individuals to fully experience the web, such tools are as fundamental as ramps for wheelchair users.

Unfortunately, very little progress has been made on this front for those with I/DD. The Arc seeks to ensure that individuals with I/DD do not get left behind and become a web underclass. Like everyone else, individuals with I/DD desire to learn, socialize, and shop online as well as access job opportunities in this forum. Towards this goal, The Arc wants to find out about YOUR experience with applying for jobs online to assess how accessible (or inaccessible) these mechanisms are for you. We have developed two surveys – one intended for individuals with I/DD and the other for those who assist individuals with I/DD such as job coaches or family members – to find out more about your experiences applying for jobs online.

Our community’s ability to access these applications is vital to The Arc’s continued efforts to expand integrated, competitive, and community-based employment opportunities for individuals with I/DD and ensure that the integration mandates of state and federal disability rights laws are meaningfully fulfilled.

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An Open Letter to Suzanne Wright, Co-Founder of Autism Speaks

/in /by Peter Berns

Yesterday I had the privilege of attending an event at the White House celebrating the 50th anniversary of President John F. Kennedy signing into law what later led to the Developmental Disability Assistance and Bill of Rights Act. In light of this historic anniversary, I feel compelled to comment on a recent blog post leading up to Autism Speaks’ first National Policy and Action Summit earlier this week.

Back in 1962, President Kennedy’s Panel on Mental Retardation* called for our country to “combat” mental retardation, “[exploring] the possibilities and pathways to prevent and cure mental retardation.” Here we are, 50 years of progress later, and your words connote the same sense that we are at war, suggesting that given the prevalence of autism we should call out the “Army, Navy, Air Force and Marines.”

Over the years, though, we have learned that war is no longer a useful metaphor to invoke and apply in the disability community. People with autism, or for that matter other developmental disabilities, are not victims of the predations of some evil actor, nor are their mothers, fathers, sisters and brothers. Instead, we appreciate, as stated in the Developmental Disabilities Act, that “disability is a natural part of the human experience.”

Unfortunately, your description of children with autism and their families is polarizing and divisive, creating rifts within a community that can ill afford it in these perilous times. Characterizing people with autism and their families as victims suffering from a dreaded affliction ignores the diversity of the community of people with autism, as well as their creativity, perseverance, adaptability, resilience, and overall beauty of their human spirit. It belittles the many who, rather than seeking to be cured, are striving for their human rights to be accepted and respected. It is far from reality for many people with autism whom I know and who are involved in our work. All are deserving of dignity and respect.

Certainly, it is true that many individuals on the spectrum, and their families, face serious challenges on a daily basis. The current system of social insurance and social services and supports fall well short of meeting the needs of too many who are in need of assistance. To confront this reality and achieve progress on behalf of and with people with intellectual and developmental disabilities, including autism, the only successful path forward is one which unites, rather than divides. We all must work together.

As you may be aware, The Arc is the nation’s oldest and largest nonprofit organization advocating on behalf of and serving people with all different types of intellectual and developmental disabilities. Throughout our network of nearly 700 chapters in 49 states, The Arc serves and advocates on behalf of and with many individuals with autism – and we know that more can and should be done to ensure that people with autism are included in the community and have access to the services and supports to achieve their goals in life. Solutions to the challenges people with autism and their families face are possible.

The Arc’s experience, over more than 60 years, makes clear that our power to achieve change is greatest when people with intellectual and developmental disabilities, their parents, brothers, sisters, professionals, colleagues and friends are all at the table. Our voice is even stronger when we make it a priority to listen to what people with developmental disabilities have to say for themselves about their own lives.

Now is the time to come together – people with and without disabilities, including autism – to determine where we want to be tomorrow, next year and 50 years from now. The rhetoric of 50 years ago has no place in today’s discourse.

Sincerely,

Peter V. Berns
Chief Executive Officer
The Arc

*The outdated term mental retardation is used in this context because it is the formal name of a panel in existence 50 years ago. Today, the accepted terminology is intellectual and/or developmental disability.

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Why Are Celebrities Still Using the R-Word?

/in /by Peter Berns

In a newly released song, Jodeci Freestyle, artists Drake and J.Cole use the “R-word” and the term “autistic” as insults. I find it hard to believe that there is nothing else that will rhyme with “started”, aside from retarded. And using autistic in this manner is an insult to thousands of individuals on the autism spectrum who deserve respect. The context doesn’t matter, the use of both words is a slur that demeans individuals with disabilities – and that is unacceptable.

Words are a powerful thing, and sadly many influential people, like Drake and J.Cole, still fail to see the impact of their words. Rappers, actors, and any public figures have a responsibility to the people who admire them to choose their words wisely. There is no denying that both Drake and J.Cole are talented musicians, admired worldwide, which makes it even more important that they put thought into every word they use. Your choice in words is a reflection on you and your beliefs. Public figures or artists should not want to be connected to the ignorance and malice associated with the words that Drake and J.Cole chose to use.

Sadly, I am not shocked to hear that the r-word is being used in a rap song, but it doesn’t mean that I am not disappointed. The fact of the matter is that using language that was rejected by the people it was used to describe is a slur against them and shows blatant disrespect. We as a society should not allow language that diminishes another person’s value or insults them to be socially acceptable. I see this as an opportunity to educate more individuals, and hopefully educate Drake and J.Cole. Their fans are among the many who have already signed a petition condemning their language in this song. Hopefully, this petition will send a message to them that their choice in words is absolutely wrong, and their fans are paying attention.

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The Arc on the Front Lines of Defending Social Security

/in /by The Arc

Many programs vital to people with intellectual and developmental disabilities (I/DD) have been at risk over the last few rounds of budget negotiations. Right now, Social Security is in danger of cuts because of talk to change the benefit calculation. This shift to what is called the “chained CPI” would have horrible consequences for people with I/DD, forcing them to make life and death choices. The Arc’s CEO Peter Berns was invited to speak at a press conference in the U.S. Capitol today, organized by Senator Bernie Sanders of Vermont. Berns was joined by representatives from other organizations whose constituencies would be impacted by this benefit cut, including AARP, NOW, the AFL-CIO, and Iraq and Afghanistan Veterans of America.

Good morning. I’m Peter Berns, the Chief Executive Officer for The Arc. We are the largest national community-based organization advocating for and serving people with intellectual and developmental disabilities and their families. We have over 175,000 members, and we serve more than 1 million people through our 700 state and local chapters nationwide.

Our nation’s Social Security system is a lifeline for over 56 million Americans including more than 10 million people who qualify because of a disability.

It’s a system that was built up over decades based on our shared commitment to each other. Changing the benefit calculation through the chained CPI isn’t just shaving a few dollars off here and there. We have a moral obligation to make sure that Social Security is there for all Americans in their time of need.

For people with disabilities, the monthly Social Security check can mean the difference between a home in the community, or life on the streets or in an institution.

It can mean the difference between food on the table, or hunger.

It can mean the difference between access to essential medicines and health care, or tempting illness or death.

Many beneficiaries with disabilities rely on Social Security for most or all of their income. With benefits only about $1,100 a month, every cent counts, and over the years the impact of the chained CPI would be real and painful.

Cuts from the chained CPI could also lead to terrible life and death choices for over 8 million very-low income seniors and people with disabilities who rely on Supplemental Security Income. SSI benefits are just over $500 a month.

Think about that – $500 a month is just pocket change for many affluent Americans.

It’s a monthly payment for a high-end car, or a plane ticket for a vacation.

But it’s all that many SSI beneficiaries have to exist on, month after month. The chained CPI would cut SSI benefits not once, but twice: first, before the person ever applies for benefits, by lowering the initial payment level, and second, through lower annual cost-of-living adjustments.

With SSI benefits already extremely low, it’s hard to imagine how beneficiaries would get by after cuts from the chained CPI.

In closing, thank you to Senator Sanders, Senator Whitehouse, and Senator Merkley and to our colleagues for bringing us together today to highlight how the chained CPI would hurt working Americans, seniors, veterans, women, and people with disabilities. We stand united against this harmful benefit cut.

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Why Are We Still Talking About the “R-Word”?

/in /by Peter Berns

Sadly, people of all walks of life are still using it. The most recent heinous example came from conservative commentator Ann Coulter last night, when she not only used it in a tweet, she referred to the President of the United States with the word. That’s wrong on two levels – one – the r-word has no place in our society, and two – the office of the President deserves more respect no matter who occupies it.

Words are powerful. While the r-word may not have the same emotion and meaning behind it to everyone, it’s a hurtful, disrespectful, and unacceptable word to people with intellectual and developmental disabilities. And that’s enough to remove it from the national dialogue.

The Arc is part of a large, national effort to “end the word” and we encourage you to talk to your friends, neighbors, coworkers, family – really, anyone you cross paths with – and educate them about why this word is so wrong. The r-word has no place in politics or any other social or professional setting. We need you to spread the word to end the word!

Join us in this fight – because with your help, we CAN end it!