I ran into an NYU professor who teaches about disability services and she was complaining about how her students see institutionalization as a problem of the far past, and I was like “Give them extra credit to come visit an institution with me this Thursday!”. I think she’s going to make it happen.
Anonymous asked: "She is a Governor-appointed member of a committee that distributes millions of dollars in funding to agencies like the one who tried to force her into a group home", that doesn't sound like a positive outcome.
Why isn’t a woman with developmental disabilities being in a position of power positive? Billions of dollars are distributed in New York State to agencies that run group homes; it’s horrible, but I’d rather have people receiving services in charge of at least a small part of that funding than for them to demur out of some sense of purity. There are no elected officials who have intellectual and cognitive disabilities, no agency heads, no state-agency decision makers. The problems we see today aren’t because the wrong agencies are getting the money, it’s because people with disabilities don’t have power, the only way to fix that is to put people in power. So often people with developmental disabilities have power taken away from them with the excuse that they won’t make the “right” decision, that they are not smart enough, that they don’t understand the big picture. Even if this woman supported policy goals that I didn’t believe in (and honestly, on this committee she uses her voice as much as possible to support alternatives to group homes, self-determination, self-direction, person-centered planning, sexuality and relationship based services, ect.) my job is to help her get and maintain power, not question what she does with it.
The gentleman on the left is a current board member of Self-Advocacy, and loving boyfriend to another self-advocate who alongside of he shares stories about their sex-life and the importance of relationships for people with developmental disabilities.
The woman in the center was almost sent to Willowbrook as a child, where she would have grown up in warehouses for 8000 people with developmental disabilities who were tortured, abused, experimented on, and murdered. Instead, she grew up with her family. She tried to go to college at Queensborough Community College, and they refused her because of her disability; she now teaches at that school. Agencies tried to force her into a group home, but they didn’t succeed. She now lives in her own place in Queens and is Governor-appointed member of a committee that distributes millions of dollars in funding to agencies like the one who tried to force her into a group home.
The woman on the right grew up with a Columbian mother in Jackson Heights who would go as far as helping her brush her teeth even into her 30s. When her mother died, her family in Columbia tried to take her to live with them, but she refused. She spent years in a group home, fighting to get out, and today she lives in her own place, has had a paying job for 8 years, teaches classes at three different colleges, and sits on innumerable work-groups and policy-making committees for the state.
The gentleman on the left was one of the first people with developmental disabilities to be able to adopt a child. He and his wife adopted a girl with Down Syndrome and raised her, at a time when the whole world was intent on stopping them. You have no idea the amount of hate and prejudice they faced. Their daughter is now grown up and living in the Bronx.
This couple attends the oldest self-advocacy group in the country, and they have been speaking up for people with disabilities for literally decades. They are also married, even though Social Security penalizes people with disabilities for doing so. They organize meetings surrounding marriage and disabilities, and are building a movement to end the Marriage Penalty.
The woman on the right was the MC of our conference, and kept everyone rapt with attention throughout the day even though the microphone was locked in a closet. I met her a year and half ago, bored on Staten Island, wanting to teach but with no one helping her get those types of jobs. Since then, she has taught three college courses with us, she’s an advisor to two self-advocacy groups in the city, she’s spoken with legislators and writes regularly for the Staten Island Advance, and she just got hired by a service provider in the city. Her voice was nearly gone by the end of the day, but she still had things to say. I trust her with anything.
This man won’t shut up. I’ve seen him at his program and everyone is tired of how much he talks. He advocated for their workshop to remain open so he could feel productive and earn money. He advocated for their cafeteria to not be closed. He advocates for fellow people at the program who are teased and bullied. And he will tell anyone who asks that if you want to help him look for a job, you better help him look for a job as a rapper, because that’s what he wants to be.
The gentleman on the left grew up in Coler Hospital, a horrifying institution for people with developmental disabilities that still exists on Roosevelt Island. He went on to become the president of the board of the Self-Advocacy Association, has spoken with governors and legislators, traveled the state advocating on behalf of people with mobility issues and Spanish-speakers with disabilities.
The woman on the right is the current president of the board, organized her group home and the her entire agency out on Long Island into an incredible force for change. I’ve seen her holding a megaphone screaming in agency head’s faces. I’ve seen her call legislators in a fury at injustice. She is loud, unstoppable, and is never going to let anyone tell her that she’s wrong.