In My Own Words

From the Winter 2004 Update

Published 02/23/04

Lambda Legal client Cecil Little was rejected by six Louisiana nursing homes because he has HIV. The kind of discrimination he faced is becoming more common as many people with HIV live longer and require medical support that’s sometimes unrelated to HIV. His sister, Gloria Rowe, with the support of her husband and daughter in rural Louisiana, has been working with Lambda Legal on Cecil’s behalf for the past several months. Here she shares her powerful story of fighting for her brother to receive the care he needs.

A year ago, my brother Cecil suffered a stroke and two aneurisms. I didn’t know it then, but his medical crisis would turn me into my brother’s biggest defender – and an advocate for people with HIV.

Cecil was in a coma and on life support for a month. Twice, the doctors told us we should pull the plug and let Cecil go with dignity. They said he’d never make it, and even if he did, he’d be an invalid with no quality of life. We didn’t believe them. My family and I drove 80 miles to New Orleans every day to be with him in the hospital. I’d sit for six or eight hours talking to him. The hospital staff said that he couldn’t hear me. I knew he could.

I am the baby of the family, and Cecil and I were the last two kids left at home together. When I was 14, I was learning how to drive with my mom’s new car. One night, Cecil, who already had his license, took the car out on the town. He backed into something and dented the rear of the car. It wasn’t a big dent but Mom noticed, and when she asked Cecil, just like an older brother, he told her I did it. As Cecil began to surface from the coma, I said, “Okay, Cecil, God gave you a second chance. Now’s the time to tell Mom that I didn’t wreck the car.” His face had been expressionless for weeks, but he managed a tiny smile. I knew then that he’d be okay.

Once Cecil was off life support, he was moved to a fantastic rehabilitation facility and he made remarkable progress. By June, he was ready to move into a long-term-care facility. At that time, he could stand up by himself and communicate with hand gestures or a few words on a chalkboard. He was fed through a stomach tube, and he needed help bathing and dressing.

A month before he was scheduled to leave the rehabilitation facility, we began looking for a nursing home close to us. After having Cecil so far away from us, we all counted down the weeks to when he would be closer. That was his motivation to continue to work so hard – we are all he has.

I talked with the nursing home closest to us about the level of care Cecil required, and they assured me they would be happy to care for him and had plenty of room. After the rehabilitation facility sent them Cecil’s forms, as required by state law, the nursing home said he required too much care. I was confused. I found five more facilities, and they all told me they’d take him – but after receiving his forms, they all called back to deny his application.

I wasn’t keeping Cecil’s HIV status a secret from the homes. I didn’t think it mattered; nor did I know that his status was on the forms. I would never have lied about Cecil’s having HIV. That’s part of who he is. When Cecil told me four or five years ago that he had HIV, it was difficult at first. I initially thought he was joking, because he looked so healthy. I’ve known he was gay for a long time, but these are things we don’t talk much about in our family.

Once it all began to make sense and I realized that these nursing homes were rejecting Cecil because he had HIV, I was furious. He fought so hard to live and to recover. Now it was my turn to fight for my brother.

I called Lambda Legal. The attorneys in Lambda Legal’s AIDS Project told me that Cecil is protected by federal law. Nursing homes that accept Medicare or Medicaid funds can’t discriminate against people because of their disabilities, like HIV. Lambda Legal filed a discrimination complaint on our behalf, triggering a federal investigation of the nursing homes.

Since the six homes closest to us had rejected Cecil, he remained 80 miles away for several months. We saw him only once a week. I felt like I’d lied to him when I promised he’d be close to us. At the end of our visits, he would begin to cry and sometimes write “home home home” on his chalkboard.

After the legal filing, I took Cecil a newspaper article about our case. I could see in his eyes that he knew we were working to get him home. After that, Cecil didn’t cry anymore, and for good reason.

Within three months, we reached an agreement with Kentwood Manor, one of the homes that had initially rejected Cecil. A couple of months ago, Cecil moved into his new room, just 20 minutes away. I visit him every day. He’s gaining weight, there’s color in his cheeks and his spirits are soaring. He’s getting better every day.

We dropped our complaint against Kentwood Manor, but we’re pursuing the other five homes so that other people won’t face what we did. We have all we ever wanted for Cecil, which was to get him on the road to recovery and closer to coming home – and now I feel the same responsibility to other people with HIV that I do for my brother.