Trangendered woman lives with HIV

Deja Kelis Edwards waits to check in for her dermatological procedure at a medical facility in the West Village. (photo by Sarah Tung)

Deja Kelis Edwards waits to check in for her dermatological procedure at a medical facility in the West Village. Photo by Sarah Tung

Deja Kelis Edwards checked in for a dermatological procedure at St. Vincent’s Hospital in New York City, offering only her surname to the receptionist. When finally asked what her first name was, she hesitated before answering, “Clifton.”

The receptionist’s busy hands hovered momentarily over patients’ folders as she looked up at the very feminine Edwards. A surprised expression flashed across her face, but she quickly resumed her search for Edwards’ appointment information.

Edwards, 33, is accustomed to this reaction from people. She is tall and curvy, and pays special attention to her hair and make-up, utilizing her skills as a certified cosmetologist. Her voice, which qualifies as a tenor, has a tinge of Southern attitude. Most people would never guess that she used to be a man, except for the fact that she has not legally changed her name.

Edwards and her transgender friends bond over common issues like this, such as telling potential partners about their “situation,” their sexual orientation and their sexual health status.

Deja Edwards appreciates the right to use the women's restroom in the state of New York, a right that does not extend to all transgender women in Texas, she said.  (Photo by Sarah Tung)

Deja Edwards appreciates the right to use the women's restroom in the state of New York, a right that does not extend to all transgender women in Texas, she said. Photo by Sarah Tung

Deja Edwards, like many transgender women of color in the United States, is HIV-positive.

It is estimated that 56 percent of African-American male-to-females tested positive for HIV, according to a review conducted for the HIV/AIDS Prevention Research Synthesis Team. This percentage is double the estimated rate of HIV infection in the entire MTF transgender community.

Transgender women are especially at risk of contracting HIV because a greater number of individuals in this group participate in risky behaviors, the review said. Additionally, factors relating to mental health, physical abuse, social isolation, economic difficulties and poor transgender health care can increase the risk of HIV.

Edwards recently left her childhood home and moved to New York because of the improved medical care she would receive as a transgender woman living with HIV.

“Houston is supposed to be the medical capital of the United States,” she said. “But far as in the care for women like me … it’s just not really something that people want to focus more on. The care and the attention is just not really there.”

Jae Sevelius, an assistant professor of medicine at the University of California, San Francisco’s Center for AIDS Prevention Studies, and co-principal investigator of the Center of Excellence for Transgender Health, said transgender women are highly vulnerable and marginalized.

“It comes as no surprise then, given the association of negative health outcomes with stigma and discrimination, that transgender women experience severe health disparities across a number of outcomes, including HIV,” Sevelius said.

Within this particular group, the incidence of HIV is especially predominant in minorities.

“Communities of color are disproportionately represented among people living with HIV, as well as new HIV cases, and this holds true among transgender women,” she said.

In Edwards’ circle of friends, for example, four out of the five transgender women who have HIV are black or Hispanic.

High rates of unemployment and poverty occur among transgender women of color, which correlates with a lack of standard health care that routinely screens for STDs and other health problems, such as high blood pressure and heart disease, Sevelius said.

Edwards realizes she is fortunate to have Medicaid, which pays for a number of her medical expenses. Although she contracted HIV in 2003, she only started medication for the disease within the last year.

“At the time … I wasn’t in need of medication,” she said. “Now that I got older and have other illnesses I have to deal with, my (T-cell) count went down.”

These other illnesses include high blood pressure, high cholesterol, chest pain and depression. In addition to the pills she takes to maintain her physical and mental health, Edwards is on a bi-monthly regimen of hormone injections.

Mental health concerns, like depression or suicidal thoughts, according to the HIV/AIDS Prevention Research Synthesis team, have been linked as a factor that increases HIV risk.

“Depression can result from isolation due to rejection of the transgender person by family and friends, as well as violence and harassment they experience in society,” Sevelius said.

With the help of anti-depressant drug, Wellbutrin, Edwards’ mental state is currently on the “up-and-up,” but it wasn’t always this way.

Edwards said she tried to commit suicide twice in her life. She first tried to end her life in 1996 when she realized she was attracted to men and worried she would disappoint her mom.

DEsuicideclip Edwards talks about her attempted suicide.

Edwards was raised by her mother in Belmont, Texas. For most of her childhood, she would play with dolls and girls instead of playing with Mac trucks and boys, she said. When she hit puberty at the age of 11 and developed a womanly figure, friends and family were confused.

“I could hear people saying, ‘Why is your butt so big? Why do you have breasts like that?’ ” she said.

Edwards and her mother never talked about any of the physical changes, and though there were some discussions about sexuality, Edwards knew her mother wouldn’t approve of her sexual orientation. Edwards was right.

“There’s the freedom of you rather not be here than deal with the issue at hand, which is discovering your sexuality or, you know, being shunned by family members or people who don’t understand you,” Edwards said.

When her mother realized why she had attempted to overdose on drugs, she was devastated. Edwards said her mom would not get out of bed for an entire week because “she took it really hard” — she even urinated on herself.

Edwards’ second suicide attempt was triggered by her mother’s death, the end of a six-year relationship and the diagnosis that she was HIV-positive.

Edwards started dating “Slim” in 1997, when she was attending Dolphin Technical Institute, a cosmetology school in Beaumont, Texas. At the beginning of their relationship, Edwards and Slim both tested negative for HIV. A year before they broke up, the test results were the same. During that time, however, Slim cheated on Edwards and left her for another transgender woman.

In 2003, Edwards fell ill and decided to get tested again for HIV. She said she was bed-ridden for two weeks with flu-like symptoms: night sweats, stomach pains, diarrhea and vomiting. This time, she tested positive for HIV.

Edwards decided it was time for a change. She moved to Houston, where she tried to cope with being single and alone while raising funds for a move to New York.

“(Slim) was the one who always told me that … I could become something,” Edwards said. “I wanted to prove to him, and to myself, that I could succeed.”

Edwards relied on her spirituality, and her pet cat, Papi, to help her get through difficult times. She also settled on a new name, to symbolize a new beginning.

” ‘Deja’ was something that I always fancied when I was coming out,” Edwards said. “ ‘Kelis’ came on later after I broke up with my boyfriend, and it was like the new me.”

The “new” Edwards had two goals: to move to New York and to work toward the final transformation.

After reaching out to Housing Works, a non-profit organization in Brooklyn that helps homeless and low-income individuals living with HIV/AIDS, Edwards bought a one-way ticket to New York, where she hoped to become a consultant for makeup and hair in the entertainment industry. Housing Works was her home when she first moved to the East Coast. It is also the medical facility from which she receives her HIV medicine and treatments.

Edwards spoke highly of the non-profit organization — through Housing Works, she has found friends who are like a second family. Edwards is a member of the Housing Works gospel choir. Singing is therapeutic, she said. She has also met other transgender women living with HIV.

Carol McCall, a case manager for the transgender transitional housing program at Housing Works, worked directly with clients who are HIV-positive and transgender, including Edwards. McCall said that with the exception of one female-to-male transgender and two Caucasian MTF transgenders, all of her clients have been transgender women of color.

Housing Works’ transgender transitional housing program provides housing to transgender individuals for up to two years. When Edwards first moved to New York, she stayed at the Housing Works Brooklyn location and interacted directly with McCall.

“When Deja came here, I was very impressed with (her),” she said. “She always said that she came here with a purpose. … I think Deja is going to be one of our success stories.”

McCall also spoke highly of Edwards’ personality and talent as a make-up artist. While some transgender women resort to drugs or prostitution to make a living, Edwards has chosen to make an honest living.

Edwards’ ultimate goal is to undergo sex reassignment surgery. She aspires to have the procedure done abroad because it is considered a common procedure in Thailand. At a cost of $45,000, which includes plane fare and rehabilitation, it’s the most expensive surgery offered, but it is also the best quality, Edwards said. She has attempted to save money for the procedure, but with the high living costs in New York City, it’s not easy.

In the meantime, Edwards is also taking a course on “peer education” at Housing Works, where she hopes to become a case manager and a role model.

“My field would be working with transgender women with HIV,” she said. “I think me and we, as a group, transgenders as a whole, need more positive role models, need more people to look up to.”


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Liz says:

Awesome job, Sarah. This is so interesting -it gave me a new perspective into the lives of transgendered women – and the story is really well-written!

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Mutual Friend says:

I was on FB this morning and am friends with one of Kelis’ friends. Kelis has passed away. Nobody is discussing details, but I can confirm she passed away yesterday. RIP dear angel.

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