Gregg: Hi Anthony, how are you doing?
Anthony: I’m well, thanks! Why don’t you start and tell me a little about your story.
Gregg: Well, I wasn’t always in this chair. I could walk when I was diagnosed, in 1990. Back then, I only had one question: How long did I have to live? The doctor said he could try to give me an estimate, but joked that I could go outside and get hit by a bus—basically, nobody can ever tell you how long you really have to live. Sure enough, 13 years later, I was in a car accident. It was December 2003. To this day, I do not know what happened; they say I blacked out in the car. When I woke up again, it was the second week of January; my left leg had been cut off above the knee. They were trying to save my right leg, both my arms had been crushed, part of the right side of my body had been burnt, and I had a C2 fracture in my neck. They ended up taking my right leg, too, so now I’m a bilateral above-the-knee amputee.
Anthony: Wow. I was diagnosed with AIDS on December 27, 1997. At the same time, I was diagnosed with cryptococcal meningitis. I lapsed into a coma, and I reawakened in April of 1998 to find out that I was legally blind and hard of hearing. I was totally paralyzed from my waist down, though I have since regained my ability to walk. The only time I ever cried about being HIV positive was right after I came out of the coma. I’m 6 foot 4, and when I looked in the mirror, I was frail and only weighed 90 pounds. My mother was in the room with me, and I started to realize that I couldn’t seem to see her very well. I knew she was there, but she was all blurry. I just cried. But then I found out what a parent’s unconditional love for their child is. She told me that God had a plan and a purpose for me.
Gregg: Listening to you, I couldn’t help but start laughing, because that happened to me too. I’ve got the greatest support group in the world. Everybody I know kept telling me that God had a plan for me. At first, I didn’t care—all I wanted to know was why I was still here, why I had to be alive and in such misery. It didn’t make any sense. But now I do believe He does have a plan for me—and it’s not for me to wonder what it is. I just need to keep doing what I do.
Anthony: I was in a nursing home for a while, where I met a young lady named Iris. She also got cryptococcal meningitis, only she’s totally blind; hard of hearing in one ear and deaf in the other; confined to a wheelchair; and she only has dexterity in two fingers on each hand. I used to hear her screaming and yelling to the nurses for some attention, and being that she was totally blind, they would neglect her. I would go in the room and talk to her, and she literally was my inspiration—she would tell me that when she got out of there, she was going to do this and that. I said to myself, if I can do half of what she wants, I’ll be all right! We became good friends, and together we were two of the founding members of Perceptions for People with Disabilities, an organization that provides services and support for positive people who live with a disability.
Gregg: I had all these friends who wanted to take care of me when I first got out of the hospital; but I told them that I needed to learn to do some stuff on my own. I’ve always liked basketball, so I found a wheelchair basketball league. I hung out with these guys for a year, and I learned stuff that no therapist has ever taught me; they showed me how to go up hills without worrying that you’re going to roll backwards, and how to pop off little curbs instead of always looking for cut-ins ... because in most places, like the mall, if there are wheelchair-accessible cut-ins, there’s usually only one or two, and they’re at the far ends of each side of the parking lot. For some reason the engineers think we would never park in the center!
Anthony: Being differently abled and also living with HIV/AIDS ... we’re part of a subpopulation that society seems to overlook, neglect and ignore. We’re almost transparent sometimes. And when you do go out and socialize, and people ask you about what caused your disability, it goes back to the issue of disclosure. It’s difficult sometimes to disclose to someone your whole life story, when sometimes they’re not entitled to that. People don’t know—I have a guide dog, but I have a little bit of vision, and sometimes I catch them outright lying to me, and it’s wrong! If I weren’t such an assertive and vocal person, I think I would be dismissed on a lot of things.
Gregg: I’ve used humor to turn stuff around for me. When I was in the accident, my thing was: Now I’m going to be the poster child for everything. I’m the poster child for HIV; I’m an amputee. You got a disease? Give it to me! That thinking helped me get through it. The funny thing was, people got scared to talk to me. In my hometown, I was always the person that people knew to ask about HIV stuff. Then they stopped. I think they were like, “He lost his legs, he must have lost his brain too.” I didn’t lose anything! I know everything I knew before, and much, much more. Sometimes I just get frustrated. But as soon as that happens, someone does call, needing my help, and changes my whole outlook.
Anthony: It’s easy to get frustrated. My best friend and my fiancée are my strongest supporters, and they help me get through a lot. Having HIV doesn’t bother me—my viral load is undetectable and my T-cells are at 728. But not having my vision does, and I know at every waking moment that I’m visually impaired due to HIV. For me, it’s all about my vision. I try to prove people wrong and lead others by example. If I could inspire somebody, even if it’s one person, to live the quality of life that we each deserve, then it’s worth it.
Gregg: Same here. The reason I try to inspire people like me is because I met a lady in therapy, I call her Ms. Dash, who told me that when you die, on your tombstone, there’s the year you were born, a dash, and then the year you died. All she ever asked me was, “What’re you going to do with your dash?” I believe I’ve got something to do here. I’m not here for nothing.
Ready, Willing and Abled
Managing HIV is tough—imagine doing it blind or from a wheelchair. Two physically challenged positive people, Anthony Richardson and Gregg Fordham, share how they’ve disabled stigma and self-doubt.
Gregg: Hi Anthony, how are you doing?