Overcoming the stigma

On Friday afternoon, Alyssa Crawford was doing her hair. She did not have much time to talk on the phone because she had a World AIDS Day kickoff banquet she was going to later that evening to show her support.

Later, Crawford, wearing a string of pearls and a red dress, sat quietly, giggling with a friend while health professionals talked about trends in HIV and AIDS.

But, for Crawford, this is no laughing matter.

She has lived every day of her life with HIV something she has known about since she was 10.

The stigma and discrimination against individuals with AIDS can be crippling, but the junior attendant on the Florida A&M Royal Court has learned to embrace who she is, instead dwelling on helping others and community outreach.

However, life was not always that easy for Crawford.

The struggle is no longer there, Crawford said. Its not the same at least.

When she was born to a drug-addicted mother in 1992, HIV was a relatively new, misunderstood virus that doctors scrambled to curb. Her life expectancy was only five years, but she found solace in the strength of her grandparents, whom she calls Mom and Dad.

Crawford reminisced about her childhood. She was a normal kid with lots of friends and enjoyed the nuances of life that come with being a kid.

Taking medications, being sick, hospital beds that was a way of life to me, Crawford said of her childhood. I didnt really think too much of it because its not like that was my whole life. It didnt captivate my life.

Her father, an immigrant from Barbados, was a subscriber to old ways. He refused to admit sickness and often told her to eat more fruits and vegetables and keep it moving.

She struggled in middle school, wading through the negative words of her classmates about HIV without saying a word about her status. She did tell a friend. Emotions welled up and she felt it was the time to tell someone. That friend told another friend, and Crawford was welcomed with open arms.

The barrier of always knowing that she was HIV-positive weighed on her when she was a teen. She remembers those years with a feeling of dread waking up and having to take thumb-sized pills and nine scoops of powdered medicine daily, forcing herself to eat and not being able to sleep in when she was feeling her worst.

It wasnt a walk in the park, Crawford said.

But, her daily routine of medicine and fatigue was not the worst part. The psychological toll of adolescence and HIV forced her into good days and bad days. For her, the worst days were when as a young woman, the usual thoughts of dating and boys welled up lingering feelings in the back of her head, and she was constantly left with the question of whether she would be accepted.

The one thing that she continued to hinge her feelings on was: You know who I am, but you dont really know fully who I am. And if you found out, what would be the repercussions?

Crawford went through high school without disclosing her status to anyone.

Her defining point came in her sophomore year of college after attending a camp in Texas for children with HIV. She had gone through the same program, Camp Hope, when she was younger. Back then, the chance to get away and attend a gathering of people experiencing the same inner, health and social turmoil without being judged gave her a sense of place.

After giving back, returning and serving as a counselor in 2010, she decided to disclose her status at the same time she was running for junior attendant because she felt she could make a difference and give the HIV community a voice at FAMU.

I accepted myself and decided to go public, Crawford said. I didnt run for a facial image. I ran for a totally different thing. I know Im not the traditional person on the court, and I appreciate my peers for voting me in.

She went public through her poem, My Status, at an event on campus.

Tiara Glover was Crawfords roommate in Truth Hall when they were both freshmen. The junior English education student from Orlando remembers when Crawford revealed her story.

When she came out, she basically just came out, Glover said. There was no prior discussions.

Glover said there were discussions about HIV, and Crawford educated her and several other friends about the subject without them knowing her status.

She didnt really talk about it, Glover said.

Glover added that when she did find out, her friendship with Crawford became much stronger.

Everyone in our circle that she came out to, its brought us all closer, Glover said.

Crawford works as a peer advocate for the Minority Alliance for Advocating Community Awareness and Action (MAACA) at Bond Community Health Clinic and is the president of the Respect Yourself, Check Yourself, Protect Yourself Movement.

Glover and several other friends work with the group, trying to bring awareness to FAMU and the community. One message always in mind is that HIV does not have a face.

You dont know who has it, Crawford said. Get tested. Watch what you say. HIV is something you dont need to waste your fear on. Its something to be understood.

Crawfords boss, Sylvia Hubbard, who serves as the executive director of MAACA, said Crawfords enthusiasm and motivation for the work she does makes her a strong voice in the health community. She said in outreach efforts aimed at HIV awareness, Crawfords public perspective and age helps to convey the message of education to younger people.

She is good at that, Hubbard said.

Hubbard said Crawford is a living testimony to the success of living with HIV.

In Florida in 2010, 97,978 people reported living with HIV, 49 percent of them African-American.

The latest available data for gender demographics is 2006, in which 41 percent of African-Americans with HIV were women. The largest growth in prevalence had been in men who have sex with men. As many as 46 are infected each week.

Education of those who do not know is the biggest challenge.

If everyone was on the same page, this world wouldnt turn out right, Crawford said. Someone has to be ignorant; someone has to be wise; someone has to be alert. Which one are you going to be?

Crawfords goal is to make HIV awareness a year-round event instead of only during the first week in December.

We cant do it alone, she said. Yes, Im positive, but my status is Alyssa, and I so happen to be HIV-positive.

Life for her can be summed up in one word limitless.