Intergenerational panel of advocates urges people with disabilities to stand up and speak out.
People with disabilities have an enormous amount at stake in federal, state and local politics and policymaking – everything from threats to home care, health care, and the ADA itself – not to mention access to civil rights protections, education and employment. On Sunday, March 5, ICS and the ReelAbilities Film Festival brought together four generations of disability rights advocates to talk about their experiences and the future of the Disability Rights Movement. The overarching message? It’s up to people with disabilities to make themselves seen and heard.
Victor Calise, Commissioner of the NYC Mayor’s Office for People with Disabilities, set the stage, saying, “When I think about advocacy it worries me. We don’t have enough young people rising up. Without your voice, I can’t get anything done. And without your voice, I don’t know the problems that exist in our community. Without advocacy, we don’t exist.”
Lawrence Carter-Long, Public Affairs Specialist at the National Council on Disability, monitors congressional activity on issues that are critical to the disability community. “Advocacy is more important than ever today,” he said. “I’ve had cerebral palsy since I was born, but I didn’t get involved in advocacy until I was 35. Other people should not have to wait that long.”
Lawrence then asked each panelist to describe what moved them to become an advocate.
For ICS staffer Christy Cruz, the answer was easy. She became an advocate when she was denied access to a high school diploma because of her disability. She spent five years battling the New York City Department of Education, successfully forcing them to follow longstanding laws on accessibility so that she could graduate high school and move on to college. Christy, who founded the ICS Women’s Empowerment Initiative, said, “This generation is not doing enough. Let’s make our voices heard because nothing is going to be done if we don’t speak up for ourselves.”
Panelist Alex Elegudin, who sustained a spinal cord injury in 2003, is co-founder and president of Wheeling Forward and recently became the accessibility manager at the NYC Taxi and Limousine Commission. “I certainly wasn’t born an advocate,” Alex said. “Sometimes it can be overwhelming when you are facing a big institution or especially when you are facing the government, but it’s pretty shocking how much you really can do. Just being present inside an institution as a person with a disability changes the culture. For myself, I see that having someone in a wheelchair at meetings and hearings, in and of itself, changes things. Just your presence, combined with your passion, can really drive change.”
Danny Woodburn is an actor, comedian, and activist with dwarfism who has more than 150 television and film credits. He is perhaps best known for his work on Seinfeld. “Getting into show business, I saw that a lot of roles coming my way were very stereotypical, derogatory” he said. “I’ve actually had to put in my contract, numerous times, that I would not bite another character in the butt. It’s disturbing. And I saw things like auditions being held for people to play a character in a wheelchair. Now, you know that when the audition is held on the second floor of a walk up, no actors who use wheelchairs are going to be able to audition. Things like that led me to see that the discrimination I was experiencing wasn’t just about me; it was about people with disabilities not getting opportunities. And this year a lot of the activism in Hollywood, things like the Oscars so White Campaign, sparked me to redouble my efforts to make disability part of the larger diversity discussion.
“A turning point this year,” Danny added, “was to be publicly mocked by a presidential candidate. To have the public outcry about it go on and linger and last, and to have other people, including the ‘highly over-rated’ Meryl Streep, speak up about it, is a turning point. We all know what the bully looks like. We all know what the mockery looks like. There’s no back-peddling on that. And our vigilance is so important to not accept the explanation, but to only accept – maybe – the apology.”
Anna Fay, ICS Senior VP for Independent Living, picked up the theme. “What that incident made me feel was, that’s just not enough. From where I sit, people with disabilities were the only people who were not offended enough by any of Trump’s comments – none of us were out there, on our own, saying, ‘How dare you!’ There was no anger and that really bothers me. So when Meryl Streep got up there and did her shtick, which she did very well, my response was, ‘I don’t want anyone doing this for me.’
Anna added, “It is a journey to be out there visible to the world and to say, ‘This is my fight! What you are doing is wrong. What you are saying is wrong. You are ignoring me.’ To do this is very contrary to the stereotype people have of us as passive recipients of charity.”
Xian Horn, the youngest member of the panel, said, “Sometimes it’s really easy to get stuck in what’s not happening, so we don’t make things happen, but the onus is really on us.”
“It comes down to the power of community,” Lawrence said. “A lot of us growing up were kind of shoehorned into the idea of trying to be a “normal person” whatever the heck that is. It had the effect of keeping us from connecting with other people with disabilities, keeping us from getting ticked off, keeping us from organizing and keeping us from making change. But disability used to be a diagnosis. Now it’s an identity, it’s a community, it’s a history – and we are a constituency.”
You can watch or listen to the entire conversation here.
One final note. As an audience member I was struck by the fact that not one, not two, but three of the six disability rights activists on this panel credited their mothers with starting them on the path to advocacy. So, a big hurray for advocate moms everywhere!