Teaching about HIV/AIDS, disability in American culture

A feature from The Daily Orange at Syracuse University. Chris Bell is a top disability studies scholar in the area of HIV/AIDS. Chris used to be on the faculty at Towson University, where I work. We miss you, Chris!

When Chris Bell (pictured) found out he was HIV-positive, he went home, sat down and watched "Law and Order."

He didn't cry or lash out at his partner who infected him, he said. He watched television and started his homework.

"I had papers to grade," said Bell, a post-doctorate research fellow and soon-to-be professor at Syracuse University. Eleven years after his diagnosis, at 6-foot-2 and 135 pounds, Bell's emaciated figure proves how the infection plagues his body. His medicine makes him tired and sick, and he keeps losing weight.

Bell isn't doing well health wise, but he's pushing forward. He's learned too much in his 34 years of living to just quit - giving up isn't in him, he said.

"This is not a death sentence; we're all dying," Bell said. "Nothing has changed but my level of awareness."

While the virus overwhelms his body, Bell continues to focus on what's important to him: being an activist and an educator. Bell's first class as a professor at SU, CFE 600 (Disability, AIDS & U.S. Culture) starting Spring 2009, will be the only class at SU focused specifically on HIV and disability studies in American culture. His class will examine, critique and aim to redefine the way people think about disabled persons and HIV/AIDS patients.

"(His students) can expect a class unlike any other," said Lauren Kaplowitz, one of Bell's former students at Towson University, where Bell taught in 2006. "(A class) full of discussion, some of the most interesting reading and a professional who wants nothing more than to teach his students everything he knows."

As a black, non-religious gay man with AIDS, Bell says people have plenty of reasons to hate him.

"There are people out there who'd rather see me dead," Bell said. "They say, 'he deserves what he got, if you know what I mean.'"

Bell said dealing with hate is part of life, and he welcomes opinions of all kinds - even the ones that condemn his lifestyle. But he doesn't let it discourage him, Kaplowitz said - it feeds his passion even more, she said.

"Ignorance of any kind frustrates Chris, but those feelings are what fuel his passion in life," she said. "He is constantly wanting to learn more and grow as a person, and other people's ignorance ignites this desire."

Bell's mother, Patricia, said he has always been a fighter. Bell has dealt with racist and homophobic slights throughout his lifetime, but encourages people to "show me who they really are," he said.

After being diagnosed with HIV while teaching at the University of Missouri, Bell was "relieved of his duties," he said. The decision was sketchy, Bell said.

Bell became more of an activist for HIV/AIDS the day after he found out he was positive, speaking at lectures and publishing articles about his illness immediately after his diagnosis.

Beth Ferri, an associate professor at SU and Bell's co-worker, said Bell is "fearless in terms of telling you what he thinks."

Ferri said Bell brought his energy and passion into the field of HIV/AIDS and disability studies, changing it for the better.

Fewer than two weeks ago, Bell learned that his T-Cell count is 114. Bell said his doctors warn him that a T-cell count below 200 is dangerous to the immune system. He's on new medicines that make him nauseous and sick. The medication is "terrible," he said, but he's hoping it'll be worth it.

As Bell's health continues to decline, his family becomes more anxious about the virus. The medicines cause harsh side effects, and the only thing his mother is left to do is hope they work.

"I'm not a doctor, I'm not God, so I don't know what's going to happen," Patricia Bell said. Bell might be suffering from what his doctors call AIDS wasting - when AIDS patients rapidly lose about 10 percent of their body mass. AIDS wasting is a sign that the disease is progressing into the stages that can cause immune system failure.

Bell woke up one morning in January 2002 the same way he had every other day since his diagnosis in 1997 - HIV positive and unashamed of it. But on that day, Bell discovered HIV/AIDS was defined as a legal disability, and Bell became a legally disabled person.

Bell received a flyer for a queer disability conference in San Francisco discussing the role of HIV/AIDS in the realm of legal disability, which sparked his interest in the cause. Since then, Bell has dedicated his life to studying HIV/AIDS for disabled persons in legal situations.

"That was my entrance to work on disability as an identity, to disability studies and to disability activism," Bell said. "It was a life-changing experience and one of the best decisions I ever made."

Steven Taylor, centennial professor of disability studies at SU and Bell's boss, recruited Bell after working with him on Board of the Society of Disability Studies in 2006 at Towson University.

"When I first met him, he impressed me as an up-and-coming scholar in disability studies," Taylor said. "When new postdoctoral fellowships became available at the Center on Human Policy, Law and Disability Studies, I contacted Chris and strongly encouraged him to apply."

Taylor described Bell as a "very engaging person," noting that he has yet to have a conversation with Bell that wasn't "an interesting and enjoyable discussion."

Taylor believes Bell is beyond being hurt by the ignorance and prejudices surround HIV/AIDS, and that Bell's knowledge and dedication is an example of the kind of professors SU should recruit.

"Chris is committed to social justice," Taylor said. "He recognizes the parallels between what people with disabilities have faced in society and the discrimination and marginalization members of other groups have experienced based on race, ethnicity, gender, and sexuality."

As political as Bell can get, he doesn't talk politics often with his mother, she said. Bell often struggles with the legal grounds of disability and the culture following the stigma.

"There isn't anything wrong with being disabled," he said. "It's wrong when you're in a culture that tells you that there's something wrong with you, when people believe that they can see identity."

For Bell, being a black man is different than being a disabled man. Disability can happen instantly, he said, that's part of the reason disability studies is his life's passion.

"I'm not going to wake up tomorrow and be Asian, or wake up and be a woman, but anyone could wake up tomorrow and be disabled," he said.

Bell doesn't advocate only the rights of HIV/AIDS infected persons, but also for all those who are disabled. His personal experiences, however, led him to fight for people who contract sexually transmitted infections, because they are often subject to what Bell says is cruel prejudice.

"With AIDS, you're a nasty, filthy, disgusting person who deserves to die," he said. "We stigmatize a disease - how stupid is that?"