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.

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.

An Open Letter to the Dr. Phil Show: People with Disabilities Have a Voice

Dear Dr. Phil,

What the disability community can do:

I am writing on behalf of the millions of people with intellectual and developmental disabilities (I/DD) in our nation and their loved ones that may have seen the April 13, 2012 Dr. Phil episode entitled “Deadly Consequences.” As the nation’s largest organization serving and advocating on behalf of people with I/DD, with a network of over 700 chapters across the country, we’ve received many outraged complaints about the content of this program, and after viewing it, I felt compelled to contact you to voice our concerns.

Frankly, we are appalled by the superficial coverage given to a subject that is, literally, a matter of life or death for Jeffrey, Janet and many other people with severe physical and cognitive disabilities. Your show did a great disservice to people with intellectual and developmental disabilities, as well as others who develop severe disabilities throughout their lifetimes as a consequence of traumatic brain injury, trauma experienced in serving our country, and the natural process of aging. Moreover, asking the audience to serve as Dr. Phil’s death panel and vote on whether Jeffrey’s and Janet’s lives are worth living was simply wrong. It is reassuring that the majority of people taking the online poll on your website reject the audience’s conclusion.

Annette Corriveau is entitled to free speech. But so are her son Jeffrey and daughter Janet. While they cannot physically speak for themselves, your program still could have provided for their voice to be heard. It should not be presumed that people who can’t speak are totally unable to communicate. Perhaps you could have interviewed the caregivers who interact with them on a day to day basis and could speak with authority about how Jeffrey and Janet communicate what they are feeling and about their quality of life. Often it is more a matter of our learning how to listen and to interpret the other cues that individuals with severe disabilities are able to provide. Your show focused only on Annette’s opinion, and while she is their mother, she admitted that she sees them only every other month and institutionalized her children many years ago.

You also could have interviewed other people with severe disabilities who, like Jeffrey and Janet, were written off as having no value and no abilities, yet who have succeeded in living in and in participating in their communities. Too often people with severe disabilities are dismissed, yet when given a chance and provided appropriate supports they can rise above the low expectations that others have for them. You might, for example, have interviewed other parents who fought to get their son or daughter out of an institution and have been amazed at how they have succeeded far beyond what anyone expected.

The show would also have been enriched by interviewing some of the many experts that have a deep understanding of individuals like Jeffrey and Janet and extensive experience in supporting people with severe disabilities to live meaningful lives in the community. There are families all across the nation fighting to get their sons and daughters with severe disabilities out of institutions and get them the home and community based services they need. Their perspective, and that of advocates in the disability rights movement, would have added balance to the show. Your viewers need to understand the history of oppression of people with severe disabilities in the country and how far we’ve come. The viewer has no idea of the dark history of the eugenics movement in the United States and globally because you didn’t show it.

The Arc is the largest national charity federation advocating for and serving people with I/DD, including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 700 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

We can serve as a resource for future shows, providing technical assistance and suggesting guests (experts in the I/DD field, self-advocates, professional support staff, and families) to help explain the complex issues facing people with I/DD for the audience who may have no interaction with people with disabilities in their daily lives. The result of your failure to include this perspective left the impression on your millions of viewers that Jeffrey, Janet, and other citizens with disabilities don’t have a voice and rights. They do.

The Dr. Phil show has a responsibility to get it right for your viewers, including people with I/DD. On behalf of people with I/DD and their families, we ask that you plan another show that would demonstrate this history, illustrating how people with severe disabilities who were previously relegated to institutions have defied all expectations.

The timing is right for you to put these issues in the living rooms of Americans, as fifty years ago, President Kennedy made a call to the nation to help bring people with intellectual and developmental disabilities out of the shadows, to give them opportunities to lead productive, quality lives. We are also approaching the 30th anniversary of the state of New York announcing the closure of the nation’s most notorious institution, Willowbrook, which was an overcrowded, filthy, deplorable warehouse for thousands of children for decades and the site of a highly controversial Hepatitis A study starting in the mid-1950s through the 1970s.

The Arc stands ready and willing to assist you in preparing a program that accurately portrays the lives of people with intellectual and developmental disabilities, shows the rich history of this movement, and makes the public aware of just how similar people with severe disabilities are to you and me.

I hope you take The Arc up on our offer to be a resource for you so that you can live up to your duty as a journalist and so that people with I/DD have a seat at your table in upcoming episodes.

Sincerely,
Peter V. Berns
CEO, The Arc of the United States


What the Disability Community Can Do

If you share the same concern that we do about this episode, send Dr. Phil a message on Twitter and let him know your feelings. Use the hashtag: #VoiceofTheArc

Here’s an example:

@DrPhil Individuals who are non-verbal still have a voice. Give everyone a chance to hear them on a future show. #VoiceofTheArc

The Arc Speaks Out on Potential Closing Mabley and Jacksonville Developmental Centers in Illinois

The Arc of the United States fully supports the closure of the Mabley and Jacksonville Developmental Centers. With 2,027 individuals in institutions, Illinois now institutionalizes more people with intellectual and developmental disabilities (I/DD) than 48 other states.  Closing these facilities will start a new chapter in the state – one in which people with I/DD can move on to a life that is more inclusive and allows for the opportunity to live in the community, rather than in isolation.

Institutions enforce an unnatural, isolated, and regimented lifestyle that is neither appropriate nor necessary. According to The Arc’s Families and Individuals Needs for Supports survey (FINDS), less than 1 percent of families thought institutions were the right place for their son or daughter with I/DD – so more than 99 percent of respondents wanted their loved one to live elsewhere.  We should be allocating resources to create new supports and services in our communities so that individuals have a choice in how and where they live, instead of simply placing them in facilities like the Mabley and Jacksonville Developmental Centers. Shifting the use of funds from institutions to individualized supports, including housing, will help make the transition easier for individuals who reside in these facilities and create a more inclusive society – which is win-win for people with disabilities and people without disabilities.

The Arc Responds to Announcement on CLASS Program

Today, the Department of Health and Human Services announced that it doesn’t see a path forward for Community Living Assistance Services and Supports (CLASS) Program at this time.

The Community Living Assistance Services and Supports (CLASS) Program was created to help working adults prepare for their future in the event they need help maintaining independence in the community. It was also intended to take the pressure off Medicaid, so that Medicaid can better serve the needs of low income communities. If CLASS is not implemented, the Medicaid program will continue to take on the load of long term service needs for many Americans, who will be forced into a lifetime of poverty to qualify for this assistance.

The need for long term care remains a major issue facing millions of American families, and it will take real leadership in Washington to solve this problem so that families face a more certain economic future. Members of The Arc expect the Obama Administration to find a way to keep the promise they made to individuals who need the services CLASS would provide. We stand ready to help the White House and HHS find a solution to make the CLASS program viable.

Autism Bill Now Law – Celebrate, but Back to Work!

Thanks to many of you who reached out to your Members of Congress as the clock ticked down on the Combating Autism Act – President Obama signed a three year extension of the law on Friday. Without approval by the House and Senate, and President Obama’s signature, this important law for children on the autism spectrum could have disappeared.

The Combating Autism Act provides funding to educate professionals about proper screening, diagnosis, and intervention for children with autism spectrum disorder and other developmental disabilities. It also funds autism research and surveillance. The Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program is just one of the things that the law supports.

While this is a moment to celebrate our success, our work is far from over. In 2014, Congress will need to revisit this law, and The Arc is committed to pushing for the next version to include services and research across the lifespan.