Supporting People as the Age

Tony Phillips with current DSP Samika Frazier

When I was a baby, I couldn’t do nothing. I couldn’t even sit up by myself or really talk at all. But as I kept growing and getting stronger, I was able to move out from my bed. Later I moved to a group home. From there I learned to be independent. And then I moved out into my own apartment. Each step helped me become more independent.

It’s important to me to make my own decisions and do as much as I can by myself. A lot of people with disabilities don’t realize they can make their own choices. Sometimes they let other people decide for them. And when they do make a decision, they worry, “Am I going to get in trouble?” But why should anyone get in trouble for making choices about their own life?

As self-advocates, we need to remind each other that we have the right to make decisions and take risks. I take risks all the time. A lot of people don’t like it when I do, but who else is going to do it? I tell people, “If you don’t want to get in trouble, don’t get out of bed in the morning!” Because once you put your feet on the floor, you might stub your toe, and once that happens, your day might be over. We all have to take some risks to really live.

They pushed me into retirement before I was ready. I was on medical leave for a while, and then I started using a power wheelchair. When I was ready to go back to work, they told me there wasn’t anyone who wanted to supervise me. I wanted to retire, but on my own terms.

One thing I’m really proud of is becoming a deacon in my church and a gospel music promoter. People think it’s easy, but it’s not. Even some gospel singers say, “The Lord is good! the Lord is good!” but when they see me coming in a walker or wheelchair, they look at me like, “Who are you? How are you going to promote us?” But I didn’t let that stop me. When I was younger, people would always ask, “Deacon Tony, when’s your next concert?” That made me proud, because people saw my work, not my disability. That’s a blessing.

Aging

Now, I’ve slowed down because of age and my disability. I used to go everywhere with my walker, but now I use a power wheelchair. It’s not easy, but I still hope to organize one more gospel music program.

I’m also active in the National Action Network, which was started by my good friend Reverend Al Sharpton. At first, he didn’t really understand people with disabilities. I wrote him a letter, and he called back saying, “Whenever you need me, call me.” Now, the National Action Network has a strong disability program because I spoke up.

I’d like to move to Harlem, where my church and the Network are, so I can stay more involved in my community. It’s hard for me to travel there now that I’m getting older. I’ve been trying to move for years, but it hasn’t worked out yet. Still, I keep hoping.

Now, I want to say something real: sometimes working with people with disabilities—people like me—can be a pain in the butt. Some people like to take advantage of their staff, even when they can do things for themselves. To my friends who hire staff, I say this: DSPs aren’t your servants. They’re there to help you when you need it. Some people don’t even say “please” or “thank you.” When you treat people like that, you can see why some don’t want to stay in this field.

DSPs are here to assist us, not to serve us. And they don’t get paid or respected nearly enough for what they do. If I could get up out of my wheelchair again, I’d clean my own apartment and wash my own dishes in a heartbeat.

Retirement

I don’t mind getting in trouble. I’m always getting in trouble. And I stay in trouble. As a matter of fact, I am in trouble with my past employer right now. They pushed me into retirement before I was ready. I was on medical leave for a while, and then I started using a power wheelchair. When I was ready to go back to work, they told me there wasn’t anyone who wanted to supervise me. I wanted to retire, but on my own terms. I just want to make sure someone else can take my place and not have to go through what I did. Hopefully, we can work something out.

A few months after I retired, I was at home when I got a knock on the door with an eviction notice for unpaid bills. I called my service coordinator, and she reminded me that I needed to make sure my bills were being paid. When I spoke with my bank, I learned that my staff had been using my ATM card to withdraw money. We tried to recover the funds, but the police said they couldn’t take action because the staff person had been given permission to use my card. The agency later let this staff person go for issues with their timecard. They often weren’t reliable, and sometimes I’d end up spending a whole day in bed when they didn’t show up. It was a really difficult time in my life.

I’m getting older, but I still believe in living life, taking chances, and standing up for what’s right. That’s what keeps me moving forward. And because I’m getting older, it’s even more important that DSPs really listen to me. I feel they don’t listen to me as much because I’m not walking anymore. I use a wheelchair, and they just want to take care of me. They don’t always follow the rules I set, and I have to remind them that I’m still the one in charge.

It’s hard to find and keep good staff, but I’m grateful for the ones who are there for me and help me keep living my life. I still have a lot left to do.

Subscribe to Frontline Initiative