Personal Story

Impact feature issue on Retirement & Aging for People with Intellectual, Developmental, and Other Disabilities

When I’m 64: Still Advocating After All These Years


Tony Phillips is co-vice president of the board of directors for the Self-Advocacy Association of New York State and works for the Office for People With Developmental Disabilities. He lives in New York, New York.

An African American balding man with some facial hair smiles broadly, squinting as he sits in a wheelchair outside while wearing a dark gray hoodie and checked pants.

Longtime self-advocate Tony Phillips enjoys a day outside in New York.

I can’t retire. I have too much to fight for.

During the COVID-19 pandemic, I was put in a nursing home against my wishes and ended up there for more than a year. I was supposed to have neck surgery in early 2020, but my appointments kept being canceled and my family wanted me to be closer to them. I did not like the place, and I often called it the Birmingham Jail or Willowbrook. Now that I’m back living in my own apartment, I realize how important it is for me to live in my own home as I get older. Being around other people is great, but you need to be able to close the door when you want to be alone.

Advocating for myself and for other people with disabilities has always been important to me.

When I was in my late 30s, I met Al Sharpton when I was just getting involved in rallies and justice issues. I’ve stayed in touch with his organization and I know if I ever need anything, he will be there for me.

I’m now 64, and still working and being an advocate. After many years of doing clerical duties, I helped start a program called The Front Door at the New York Office for People With Developmental Disabilities. We connect people with disabilities and their families to services that are available to them.

On the self-advocacy front, there is still so much that needs to be done. Because paid work can interfere with disability benefits, it is very difficult for people with disabilities to be able to save for their retirement or to establish a Social Security work record. And yet, disability benefits are usually so small that you can’t really live on them, so this is a huge problem.

Another problem that needs more attention is the lack of understanding. The Office for People With Developmental Disabilities is located in the same building as the Self-Advocacy Association of New York State, but we don’t talk to each other enough to really get to know one another. How can you help me if you don’t even know me? It reminds me of my family. As my siblings get older, they will see what it’s like to use a walker or be in a wheelchair, doing things I’ve been dealing with my whole life.

Yes, discrimination persists, and at times I feel like nobody is fighting for us.

Earlier this year, I was invited to speak on a panel hosted by the Harvard Law School Project on Disability about my experience in the nursing home. After a short time at a nursing home, it hits home that that is a place to avoid, and maintaining independence is really, really important.

Sometimes, I cry when I see all these other groups making progress towards freedom, while many things for people with disabilities stay the same, despite all our advocacy work.

COVID-19 & Disability: A Holistic Examination of Pandemic Impact

In this video , Tony Phillips tells his COVID-19 story.