Tuesday, May 22, 2012

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

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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

Friday, May 04, 2012

TASH Webinar for Adults with Disabilities


TASH has a training opportunity on positive behavior support in community settings for adults with disabilities. It’s a webinar called Changing Reputations by Building Relationships & Responsibilities, and it focuses on the role of PBS and self-management in creating an environment where people take control of their lives and support services.

They will be offering this webinar May 7-21, and the cost starts at just $35 for more than a full hour of content. During that two week period, you can view this webinar as many times as you like, or ask questions via a forum on our website. The webinar features Toby and Jose, two self-advocates from California who have experienced positive outcomes in their communities, along with Scott Shepard, director of Avenues Supported Living Services.

If you know someone who would benefit from this content, please forward this message to them. You can find a registration form here (click to download) or visit www.tash.org/webinar.