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Emmy-Winning Reality Show Features Self-Determination for People with Disabilities in Healthcare Choices

Watch #BornThisWay on A&E, Tuesday at 10/9c.

Join RespectAbility for a live Twitter chat during the east coast broadcast using #BornThisWay and #BTWchat.

Rockville, Maryland, May 22 – Fully one-in-five Americans has a disability, and in many cases, their rights and lives are needlessly put at risk. While some healthcare choices are easy to understand, others are highly complex. For the first time on reality television, the issue of how adults with intellectual, mental health or other disabilities make competent decisions that can literally be life changing, or life enabling, is being addressed.

Born This Way, which recently won an Emmy for being the best reality show on TV today, is not an ordinary reality show. It stars seven diverse young adults with Down syndrome as they deal with issues around employment, independent living, education and romance.

This Tuesday night, A&E’s Born This Way will cover the potentially life-saving issue of supported decision-making for medical care. Supported decision-making is an emerging strategy to enable individuals with developmental and other disabilities to make their own choices. This is especially helpful in the health care setting where every person utilizes the expertise of his or her provider and other resources to make difficult health related decisions.

“RespectAbility applauds Born This Way for its informed and sensitive coverage of how adults with disabilities can safely and successfully interact with the healthcare system,” said Jennifer Laszlo Mizrahi, president of RespectAbility, a nonprofit organization that fights stigmas and advances opportunities for people with disabilities. “It’s not every day that reality shows can save lives – but this episode absolutely can do that. It also demonstrates that every human being has the right to be treated with dignity.”

Text: How to Make a Supported Decision-Making Agreement: A Guide for People with Disabilities and Their Families

How to Make a Supported Decision-Making Agreement document by the ACLU

The issue is highlighted in the show (spoiler alert!) when Sean McElwee goes into the hospital for surgery.

“One of my most important jobs as being Sean’s mom is to help him weigh the choices that he has in gaining healthcare,” said Sandra McElwee, Sean’s mother and author of three books on inclusion.

When asked to comment, Sean said, “I had a good experience.” In addition to being a cast member on Born This Way, Sean started a new business selling t-shirts, mugs, hats and bags with his comedic comments on them. Less than five years ago, Sean was unintelligible, and today he celebrates his speech by immortalizing it on swag.

“Frequently our current healthcare system provides inadequate consideration for the needs of adults with developmental disabilities,” Mizrahi added. “But Born This Way models how every adult with a developmental disability can have access to appropriate healthcare options.”

How to Make a Supported Decision-Making Agreement

To learn more about supported decision-making, check out this wonderful kit on Supportive Decision Making, which covers healthcare issues and a whole lot more, from the ACLU: How to Make a Supported Decision-Making Agreement.

Also, view this 10-minute video from the Special Hope Foundation to learn more about Supported Decision-Making: Supported Decision-Making: Gabby’s Story.

Meet the Author

Lauren Appelbaum

Lauren Appelbaum is the VP, Communications and Entertainment & News Media, of RespectAbility, a nonprofit organization fighting stigmas and advancing opportunities so all people with disabilities can fully participate in every aspect of community. As an individual with an acquired nonvisible disability – Reflex Sympathetic Dystrophy – she works at the intersection of disability, employment, Hollywood and politics. She regularly conducts trainings on the why and how to be more inclusive and accessible for entertainment executives throughout the industry. Appelbaum partners with studios, production companies and writers’ rooms to create equitable and accessible opportunities to increase the number of people with lived disability experience throughout the overall story-telling process. These initiatives increase diverse and authentic representation of disabled people on screen, leading to systemic change in how society views and values people with disabilities. She has consulted on more than 100 TV episodes and films with A&E, Bunim-Murray Productions, NBCUniversal, Netflix, ViacomCBS, and The Walt Disney Company, among others. She represents RespectAbility on the CAA Full Story Initiative Advisory Council, Disney+ Content Advisory Council, MTV Entertainment Group Culture Code and Sundance Institute’s Allied Organization Initiative. She is the author of The Hollywood Disability Inclusion Toolkit and the creator of an innovative Lab Program for entertainment professionals with disabilities working in development, production and post-production. She is a recipient of the 2020 Roddenberry Foundation Impact Award for this Lab. To reach her, email [email protected]

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