RE: Clemency for Ledell Lee

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

The Arc’s Letter to Showtime on Offensive Comedy Special

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

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

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.

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

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 your 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.

Why are celebrities still using the r-word?

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.

The Arc on the Front Lines of Defending Social Security

The Arc’s Peter Berns speaks out in Washington to protect Social Security from harmful cuts in budget negotiations. (at left is Senator Sheldon Whitehouse of Rhode Island)

The Arc’s Peter Berns speaks out in Washington to protect Social Security from harmful cuts in budget negotiations. (at left is Senator Sheldon Whitehouse of Rhode Island)

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.

Sen. Bernie Sanders of Vermont, who organized the press conference, issued a strong defense of Social Security.

Sen. Bernie Sanders of Vermont, who organized the press conference, issued a strong defense of Social Security.

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.

Why are We Still Talking About the R-Word?

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!

Disability Advocates Ready to Hear From Candidates at National Forum

2012 National Forum on Disability IssuesThe National Forum on Disability Issues is just a few weeks away, but neither presidential candidate has made an official commitment to attend. The disability community is taking note.  A lot is at stake in the election for this population, which accounts for one in five American citizens.

The National Forum will be an historic event and the only opportunity during the campaign that President Obama and Governor Romney will have to showcase their views on the myriad of issues facing people with disabilities. Scheduled to take place in Columbus, Ohio on September 28, the Forum will be attended by 500 individuals with disabilities, their families and advocates.  The event will be nationally webcast at watch parties all over the nation.

The forum is not a debate, but rather a venue in which the candidates can share their visions for a positive and meaningful future for individuals with disabilities. Ohio Senatorial candidates Sherrod Brown and Josh Mandel have also been invited to attend to express their views.

The Arc has joined more than 50 other national organizations in pledging our support as a co-sponsor of this event.

“People with disabilities are disproportionately impacted by the major campaign issues in this election,” said George Jesien, Executive Director of the Association of University Centers on Disabilities, one of the event’s sponsors. “The fiscal uncertainty of our nation, proposals to reform entitlement programs, the battle over health care reform and perpetually dismal job opportunities for people with disabilities – these are major concerns for our community and we hope to have meaningful participation from both campaigns to address them.”

For the more than 57 million Americans  with disabilities, including people who are acquiring disabilities as they age and the growing number of veterans with disabilities, the Forum is the one place they can hear the candidates’ views on issues such as health care, long-term services and supports, education and employment. A Forum was held during the 2008 presidential elections, and both the Obama and McCain campaigns participated.

The issues facing Americans with disabilities and their families are universal and non-partisan. More than 50 diverse aging and disability organizations have come together to host the Forum, with more sponsors joining every day.

The disability community is counting on the presidential candidates to speak up for disability issues and make their voices heard on the nation’s only platform dedicated to this topic. For more information on the Forum and how to invite the candidates, visit www.nfdi.org or The Arc’s Action Center.

Turbulence for People with Disabilities – What The Arc is Doing to Make Air Travel More Accessible to People with Disabilities

Cameron and Nancy

Cameron is on the autism spectrum and was completely non-verbal until a Wings for Autism event at Logan Airport where he said “airplane” while sitting on the plane. That was the first word that he had ever spoken at 5 years old. His mother Nancy reassured him with “yes Cameron, you are on an airplane.” Nancy says: “It is a moment I will never forget and I will always be grateful to the Wings for Autism program for that.”

Recent headlines about people with disabilities facing difficulties while traveling are troubling – just this week, the Vanderhorst family from Bakersfield, CA was not allowed to board an American Airlines flight home from visiting family on the East Coast, after they claim a pilot discriminated against their son Bede, who has Down syndrome. Stories like this one demonstrate the need for the airline industry to work with families to learn what to expect when people with intellectual and developmental disabilities (I/DD) travel.

One chapter of The Arc, The Charles River Center in Massachusetts, is leading the way in this type of education.  Working with Massachusetts Port Authority, JetBlue, and the Transportation Security Administration (TSA), The Charles River Center has created a new program called Wings for Autism.

Parents of children on the autism spectrum have a lot to take into consideration before making travel arrangements, from how their loved one will respond to the lights at the airport, their comfort level with airport security talking to or touching them, and how the noise on the plane will affect their child.

Wings for Autism sets up simulations of airport travel and security at airports across the country, giving families and airport and airline personnel an opportunity to do a test run for air travel.

At a recent simulation at Logan Airport in Boston, volunteers from JetBlue including flight attendants and pilots, staff from United Airlines, TSA officials, and ticket counter agents practiced the routine of air travel to prepare parents and children for what to expect when traveling.  The simulation required families to clear security, board the plane, fasten their seatbelts, and prepare for take-off.   For children who had issues with the various steps of the simulation, behavioral specialists were on hand to help parents and children work through the exercise.

While the program’s primary goal is to help children and parents, there is also an orientation process for TSA and airline staff.  This is the kind of education that appears to be desperately needed across airlines.  And The Arc is looking to expand this program, so that more families and airline and airport personnel can make flying a little smoother.

The R Word – Take Action to Continue to Fight to End the Word

Spread the Word to End the WordThe Arc is continuing our efforts to end the use of the R-word, and unfortunately our work is not done.  The latest instance of the use of the word was on the website of a Florida radio station.  Not only was the station using this inappropriate language, but they were using a photo of a person with a disability without permission.

The Arc has a zero tolerance policy for using the R word, and as members of our movement, we always encourage you to get involved to put a stop to the use of the word and educate people about why it is hurtful.  The Arc is a part of the “Spread the Word to End the Word” campaign, and we want you to add your voice online via their efforts on Twitter and Facebook.

What You Can Do

And you can go further, by encouraging your friends and neighbors to get involved with The Arc at the local, state, and national level.  The larger our movement, the louder our voice.