Pushing the Glass Ceiling: Life, Liberty and Justice for HIV+ Women

April 18, 2012

Pushing the Glass Ceiling: Life, Liberty and Justice for HIV+ Women

"Like slavery and apartheid, poverty is not natural. It is man-made and it can be overcome and eradicated by the actions of human beings."
-- Nelson Mandela, speaking at the launch of Britain's Make Poverty History campaign

Seven years ago,  I sat in an academic advisor's office so excited and a little nervous. We mapped out the courses I should take. He helped me apply for the Engineering Program at Wayne State University.  He handed me an application for the Society of Women and Engineering, an opportunity for a full scholarship. I was on the Dean's list. He gave me a letter that read you are invited to join Phi Theta Kappa, a national honor society for students attending two year colleges. I couldn't believe it. After all these years, I was on the verge of being successful. I was so close I could almost taste it.  I had it all figured out.  I felt so proud of myself, determined to beat the odds. I finally had hope in the future. I was going to be an Engineer.

One week later I sat in a very different office, this time sweating, anxious and fearful. Her eyes were empathetic as she read the lab report, you have tested positive for HIV. I gasped for breath. The room started spinning. I could see my life, my dreams, and my destiny slipping away from me once again. Then she asked me "Nicole, do you have a will?  Advanced Directive? Do you have custody of your children? Its best that you make arrangements for them." She handed me a magazine and a huge manila envelope filled with condoms. She gave me an orange piece of paper with the name of a doctor. I felt like I was just handed a death sentence. It's over. Later that week my uncle passed away. As I stared at his coffin I didn't see him at all. I saw myself. I sat in the back of the room, watching people grieve.  This was my future, this was my destiny, a coffin. I was going to die.

They say HIV is not a death sentence anymore.  What they don't tell you is that HIV is a death sentence for prosperity especially for HIV-positive women. HIV is often a lifelong sentence of poverty for women. Research found that 50% of people who worked before being diagnosed with HIV had stopped working within two years, and 100% had stopped working within 10 years after onset of the first symptoms (American Journal of Public Health 81, no. 1 ). However, the employment research that has explored the effects and implications of HIV/AIDS infection has focused almost exclusively on white, middle-class, gay men -- a population likely to have greater levels of work experience and education than poor women of color living with HIV. 64% of women living with HIV receiving regular medical care had annual incomes under $10,000 compared to 41% of men (HIV Cost and Services Utilization Study).

HIV-positive women carry the heaviest economic burden. We are often responsible for our children, partners, parents and even grandparents and grandchildren. 76% of women living with HIV had a child under the age of 18 living in their home (HCSUS). Women living with HIV often put themselves last, resulting in poorer health.

It took seven years for me to recover from my diagnosis. I found myself without secure housing, limited support, alone and living with HIV. I never finished college. The starting salary is $60,000 for an engineer right out of college. However, I would be responsible for my own healthcare. I would not be eligible for government assistance, and may have difficulty getting on an employer's plan. The estimated lifetime cost for a person living with HIV is $620,000 dollars. What would be the point of working so hard to accomplish my goal? HIV-positive women have to keep their incomes low to access medication, health care, housing and other services in order to stay alive.

Franklin D. Roosevelt once asserted "The test of our progress is not whether we add more to the abundance of those who have much; it is whether we provide enough for those who have little."  We do not have to accept this inequality.  Injustice is not our legacy.

Economic justice equals economic equality.  Equal rights and opportunities for all.  Health is by nature one of the most basic human rights.  I have a right to equal access to quality health care and social support services.  I have the right to stable, clean, and safe housing.

I refuse to give in to social inequality.  I am not a product of my past or my environment.   I am always moving forward.  Always changing into something greater than I was before.  I deserve the opportunity to evolve. I deserve to be treated with respect and I demand to be handled with dignity.  I have the right to define myself and my life. I have the right to hope and a prosperous future. I have the right to love and to bear children.  I have value and worth.  I am worth saving.  

I'm not asking for a handout. I am asking for life, liberty and JUSTICE! I refuse to give up my hope that one day we will all be treated with respect. We will join forces and amass a movement of many voices and many fists. We will fight and we will be victorious. We are women living with HIV, listen closely ... can you hear us?

Nicole Seguin writes from Detroit, Mich.

This article was provided by Positive Women's Network of the United States of America. Visit PWN-USA's website to find out more about their activities and publications.


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