Updating the National HIV/AIDS Strategy: Vote for the Recommendations Most Vital to Women with HIV!

Can you believe it’s been almost FIVE YEARS since the first National HIV/AIDS Strategy (NHAS) was released in July 2010?

The NHAS is a plan created under President Obama to comprehensively address the domestic HIV epidemic. The first NHAS included four main goals: 1) reducing the number of new HIV infections 2) increasing access to care for people living with HIV 3) addressing population-level disparities in prevention, care and treatment and 4) improving coordination of HIV programs and funding across federal agencies.

The first NHAS addressed some issues which are really important to women with HIV, including repealing HIV criminalization laws and expanding employment opportunities for people with HIV. But it missed the boat on others – failing to mention sexual and reproductive healthcare for people with HIV, failing to talk about the high rates of trauma and violence that impact women with HIV, and not meaningfully addressing the specific needs of transgender women.

Now, the White House Office of National AIDS Policy (ONAP) is soliciting input for the next National HIV/AIDS Strategy, which will be released this summer. This new Strategy (NHAS 2.0) will help to guide priorities for the domestic epidemic, likely for the next five years – which means it will go into the next Administration. It’s critically important that the voices of women with HIV and those who care about us are heard in this process.

The deadline to provide input ends this Friday, May 22nd. Here’s how to provide input:
1. Go to: https://nhas.uservoice.com
You can enter your email address to create a profile.
2. You will see that the opportunity to provide input is grouped into “feedback forums” according to the four goals of the National HIV/AIDS Strategy. You can click on any of the feedback forums to see which ideas have already been proposed.
3. Once you have access to a profile, you have two options:
a. Vote for a recommendation that has already been proposed
b. Propose a new recommendation
You can do both of these.
Note that you get 25 votes per feedback forum. You can vote for multiple recommendations, and you can also cast more than one vote per recommendation.

There are a lot of good recommendations already proposed in the forum. Also, a few weeks ago, PWN-USA released our own top five recommendations for the next National HIV/AIDS Strategy. In line with PWN-USA’s policy agenda and NHAS recommendations, here are just a few of the recommendations which have been proposed on ONAP’s forum that we think are really important. Click the links below to read more about each one. Starred (***) items are drawn from PWN-USA’s five top recommendations!

1. Reducing new HIV infections
a. Lift the ban on federal funding for syringe exchange
2. Increasing access to care & improving health outcomes for people living with HIV (PLHIV)
a***. Develop a minimum standard of care for PLHIV which includes sexual and reproductive healthcare, trauma-informed care, supportive services, and more.
b. Ensure gender-responsive, trauma-informed, coordinated and comprehensive care (this is very similar to the one above).

c***. Announce a national initiative focused on addressing inequity in access to care and poor health outcomes among Black women living with HIV

d***. Launch a national initiative to enhance culturally relevant prevention and care for transgender women
e. Ensure that PLHIV have access to healthy food: “Food as Medicine”
f. Increase and prioritize funding for services that link PLHIV into care
g. Preserve and support women-focused community-based HIV organizations
h. Integrate the work of the Federal Interagency Working Group on HIV and Violence against Women into the NHAS by instituting metrics on addressing trauma and violence

3. Addressing disparities and health inequities
a***. Fund research and development of women-controlled HIV prevention tools
b. Mandate comprehensive sex education in schools, and eliminate support for abstinence-only education
c. Eliminate state-level HIV criminalization laws

Are you excited yet? Ready, set, go vote before this Friday, May 22! (https://nhas.uservoice.com)

I’m Feelin’ Like a Criminal: Why the Law Won’t Stop the Spread of HIV

By Loren Jones, PWN-USA Board Member

loren_jones (1)
Loren Jones.

Some of us, due to our chance assignment from birth to certain races, genders, and classes, have pretty much been outlaws all our lives. And now, here we go; another notch on the cowgirl list of broken laws (in more than 30 states): “HIV positive and living as assumed normal.”

HIV criminalization laws are driven by irrational knee-jerk fear. The kind of fears and ignorance that led us to the path of becoming “positive” to begin with. Fear of living life alone. Fear of being one more variety of strange, nasty, weird, and untouchable is even stronger than the fear of death for some of us. People face the same types of stigma and violence from these laws that they face on the streets.

Shame never helps you learn. It only makes people hide deeper and farther from sight.

When I received my diagnosis in about 1985, while single, homeless, and hanging with a group of similarly marginalized outlaws living by our own code of right, wrong, and loyal, I immediately made the decision not to tell. Mostly for the same reasons that a lot of people don’t tell others they’re living with HIV: I could not afford to lose what little I had, in terms of companions and lovers, such as they were. Besides, I was healthy, and really did not trust a society or medical profession that didn’t really like people like us anyway.

None of us were perfect then. And we are not now. But we didn’t, and still don’t, blame each other for much. After all, I was there, you were there, and we were all there in the moment. Yeah, we should have known better. There were always STIs. But life is a crap shoot anyway. And if the violence don’t get you, something else will. I have and still do risk a lot for what I call my friends. And that has included my body.

We are not evil, horrible people. Nor were we or are we insatiable, uncaring whores and killers. We don’t deserve to go to jail for living with HIV. We go to jail too much as it is.

I have grown with the science. Truly, as I knew better, I did better. Education, and making every human being feel valued and well-loved as who they are, is still the answer to stopping the spread of HIV. The law will never be.

Loren Jones is a resident of Berkeley, California, a co-founder and Board Member of PWN-USA, and a Senior Member of PWN-USA’s Bay Area Chapter.

More Articles by Loren Jones

Women, Violence and HIV

Involving local, state, and global commissions in Violence Against Women

 

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PWN-USA Stands with Ferguson and Demands Justice for Michael Brown

Dear community,

On Monday, a St. Louis grand jury failed to bring charges against Ferguson County Police Officer Darren Wilson, who shot and killed 18-year old Michael Brown.

This verdict is horrifying and devastating for Michael’s family, and for folks in Ferguson who have been organizing for justice and healing, and our hearts are with them. Also devastating is the fact that the verdict was unsurprising to communities where police and other state agents have shown systematic devaluing of Black people’s lives for generations. From police departments to courts and healthcare systems, institutionalized racism results in violence and death for our communities.

The uprising we are witnessing in Ferguson, St. Louis, Oakland, Los Angeles, Chicago, New York, and throughout the nation is also no surprise.  Resistance is a form of healing, and organized resistance can transform oppressive systems and structures.

As grandmothers, mothers, sisters, and daughters, we understand the fear, horror, and outrage at the grand jury’s failure to indict Darren Wilson, and at this stark evidence of persistent racial bias that regularly turns deadly in encounters between police and Black bodies. We stand in solidarity with Ferguson and will see you in the streets. #BlackLivesMatter.

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Ending the Spectrum: A Timeline of Women’s Struggles Through a Gender and Human-Rights Lens

By Teresa Sullivan, PWN-USA Board of Directors

teresa sullivan
Teresa Sullivan.

“We, as women living with HIV, envision a life free from violence, coercion, and discrimination for all people. We, as women living with HIV, demand an end to the many different forms of violence faced by all women, including physical, emotional, psychological, religious, sexual, institutional, and economic violence, and the trauma that violence leaves in its wake.” — From Positive Women’s Network – USA’s Factsheet on Violence Against Women

When we hear the word “violence,” the first thing we visualize is the physical abuse of someone. And women living with HIV are indeed vulnerable to physical violence because of stigma and ignorance — a reality made brutally clear yet again a few weeks ago with the “sickening, devastating and heartbreaking” murder of Elisha Henson in Texas because of her HIV status. However, Positive Women’s Network – USA (PWN-USA) views violence through a gender and human-rights lens. For us at PWN-USA, ending violence against women includes ending a spectrum of human rights violations, including but not limited to physical violence, that women have faced for many generations throughout history.

For example, let’s journey for a moment through the 1940s and 1950s in the United States. Many women of this time faced the economic injustice of working for lower wages on factory production lines than the men they replaced who’d gone off to World War II. In doing this work, these women challenged the traditional ideals that a woman’s place was in the home attending to the needs of her husband. But this historic challenge didn’t translate to respect, equality — or physical safety. Within the home, many women not only experienced physical abuse by their husbands — “the physical beat down” — but had to make unhealthy choices to stay in relationships that were abusive, emotionally and otherwise, to keep social status, economic stability or shelter to raise their children. Women often had to depend on their husband’s income for their basic needs, such as food and clothing.

Many women also had no control over when to have sex with their husbands. Women’s reproductive rights — the right to have children, the right not to have children, access to safe abortions — were unheard of in this era. Women’s reproductive rights are human rights; viewed through a gender and human-rights lens, we can see that violation of these rights is a form of violence against women.

The psychological abuse that women faced in the era I described often caused them emotional and psychological trauma. As a woman who grew up in the 1960s, I personally experienced the trauma that was transferred from the women of the 1940s and 1950s to my generation of women of the 1960s and 1970s. Learning and working from that trauma sparked a second wave of the feminist movement. Feminist and other movements continue to be connected to the social justice movement I am part of to this day: the movement to end violence against all women.

In the feminist movement of the 1960s and 1970s, many women transformed from being passive to aggressively fighting for their human rights. The movement originally focused on dismantling workplace inequality, such as denial of access to better jobs, salary inequity, or freedom from sexual harassment. For some, it was just the right to have control over their own bodies. Most of these issues continue to be central to women’s justice movements today.

While the economic structure in the United States blocks opportunities for many people, women still face higher hurdles to jump over to make it in today’s world. When it comes to healthcare for women that are working or seeking to gain employment with quality healthcare, useful and widely available options are still rare. Women are likely to be the caregivers of families; their healthcare needs are costly and invisible. Even with the Affordable Care Act, I still see our nation falling short when it comes to upholding the right to quality, affordable, and holistic healthcare for all women. This is a deterrent from entering the workforce, especially when a woman and her family are dealing with health concerns. Women of today’s generation are often incentivized to stay in poverty and stay sick in order to access public health benefits, since the prospect of accessing healthcare and making a livable wage can be bleak.

Experiences across the spectrum of violence against women — from economic to physical and sexual violence and beyond — continue to increase a woman’s susceptibility to becoming HIV positive. In circumstances where women are not able to receive the necessary means to survive and take care of themselves and their families, preventing HIV becomes a matter for an ideal world.

If our society truly wants to end violence against all women, we must discontinue putting a Band-Aid on the issues that women face — and do some sincere surgery on our culture.

Some of PWN-USA’s solutions and recommendations for ending violence against all women:

  1. Repeal all laws that criminalize HIV and provide sensitivity trainings to law enforcement officials, providers, health care workers, violence specialists, and child protection services.
  2. Institute comprehensive trauma-informed primary care programs in sites serving women and HIV-positive women.
  1. Build care providers’ skills to assess and address signs of violence and trauma.

Read more of PWN-USA’s solutions and recommendations for ending violence against all women

 

Teresa Sullivan is a member of PWN-USA-Philadelphia and a member of PWN-USA’s Board of Directors.

 

 

AIDSWatch 2014: A Life-Altering Experience

By Nancy Asha Molock, Regional Co-Chair, PWN-USA-Philadelphia

Nancy Asha Molock head shot
Nancy Asha Molock.

I attended AIDSWatch 2014 for the first time April 27-29. I had heard so much about it from other PWN-USA members, so I was elated to be awarded a scholarship for my hotel accommodations. I wanted to lobby on Capitol Hill and make it personal by putting a face to HIV/AIDS, so when the legislators are making decisions about HIV/AIDS funding they won’t just see black numbers on white paper. They will also see my face and the faces of many others who live with HIV/AIDS, and hopefully they will see how programs like the Ryan White HIV/AIDS Program and HOPWA (Housing Opportunities for Persons With AIDS) are important in improving the quality of lives of those living with or affected by HIV/AIDS.

The AIDSWatch training session was thorough and gave us the skills and confidence needed to lobby on Capitol Hill. I had never been in a room with so many other HIV-positive people at one time. Something shifted inside of me when I turned around and saw a sea of people, most of whom were HIV positive. Watching activists proudly stand and represent their states during roll call was awesome. I thought: no shame, no guilt = power. My eyes watered as I told someone that I always felt alone living with HIV until being at AIDSWatch. A man sitting nearby overheard me; he stood up, hugged me, kissed me on the cheek and said: “No dear, you are not alone.” I will always hold that memory close to my heart.

The visits on Capitol Hill to speak with our Senators and Congressmen and -women were a little unnerving at first, but by the second visit it became a little more comfortable. Our team was very professional; we told our personal stories and articulated HIV policy and the support we needed from them. It’s important for the legislators to see that people living with HIV can be proactive in their health care, and that we are more than just stereotypes of chanting protesters or people sitting on their bottoms collecting benefits.

AIDSWatch logoThe legislators also need to understand that people living with HIV do have the power of the vote, and we want to have people in office who are sensitive to our needs and who will pass laws and provide funding that will benefit us. I wanted to get that message across while in Rep. Chaka Fattah’s office. I mentioned to his Congressional aide that I live in Fattah’s district and have voted for him in the past and would like to continue voting for him. I feel that we were heard and hopefully our voices made a difference.

My total experience at AIDSWatch was life altering. I arrived in D.C. a little unsure of myself and not knowing what to expect; I returned home a more empowered and confident person. The trainings were enlightening and the Capitol Hill visits help to sharpen my advocacy skills. Meeting and bonding with other HIV-positive people was also very special for me.

Being at AIDSWatch has confirmed for me that I must continue in the struggle even if I get a little weary and want to quit, I shouldn’t. There are some people who can’t advocate for themselves, but their voices still need to be heard. It’s important for people living with HIV to have a collective voice to build collective power to ensure that our needs are being met, so that we all can live the best life that we deserve. I’m so looking forward to AIDSWatch 2015!

Nancy Asha Molock serves as Regional Co-Chair of PWN-USA-Philadelphia.

PWN-USA’s 2014 – 2016 Strategic Plan

Every day, PWN-USA inspires, informs and mobilizes women living with HIV to advocate for changes that improve our lives and uphold our rights.  In 2013, we went through an extensive strategic planning process and listened to hundreds of stakeholders.  Over 200 women living with HIV contributed to our newly launched vision, values, and goals.  Check out our strategic plan today!

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Reflections: Connecting Racist Rhetoric, the Voting Rights Act, and Women and Girls HIV/AIDS Awareness Day

By Susan Mull

Don’t you wish pop culture would critique the latest Supreme Court antics surrounding the Voting Rights Act?  After all, aren’t we all more than a little appalled by Supreme Court Justice Antonin Scalia saying that a critical part of the Voting Rights Act was a perpetuation of “racial entitlement”?  This must mean that he thinks if people of color vote without any impediments or harassment, then that’s entitlement!  Is that what he’s saying?  Doesn’t that arouse your ire that a Supreme Court justice would say this?  We all recall that people died so that discrimination at the polling place would end.  There are people all over America just one generation removed from unjust practices that used to prevent thousands from voting.  My next thoughts have moved to racial profiling, “stop and frisk” policies, urban schools that are experiencing fiscal crises, environmental racism, for example, chemical plants that spew toxic fumes and smoke into the air at levels of toxicity that have caused cancer in rats, yet human beings are not protected from this, a higher rate of  women of color testing positive for HIV than any other ethnicity, the school-to-prison pipeline that sends young African American men to prison to warehouse them, as though they are not precious and valuable, as though they are, instead, superfluous.  Have I mentioned that none of these things are entitlements, yet people of color experience some of these aforementioned items every day?

Racism is alive and well in America and the stigma surrounding HIV and AIDS still prevents many people from being tested in time to benefit from medication that would stabilize their health.  There are people who still believe they are not affected by HIV.  There are people who still think that HIV and AIDS is the disease of degenerates who deserve it.  Some even say the word, “AIDS”, as though the mere utterance of the word contaminates them.  It is really difficult to be tolerant of such ignorance, just as it is impossible to tolerate scholars such as Justice Antonin Scalia who spew racist thought.

In connecting racist rhetoric, the Voting Rights Act, and young women of color still testing positive for HIV in alarming numbers, I’m striving to make a plea for Women and Girl’s HIV/AIDS Awareness Day.  Here’s my plea:  Do your part!  Save a life! HIV does not discriminate!  The stigma has existed all thirty two years of this pandemic.  Now is the time for everyone to help eradicate this stigma.  We, people living with HIV, fight every day somewhere all over the globe for human rights.  Who are the affected people? The affected people include every human on this planet.  People with HIV need friends, relatives, allies, community leaders, pastors, celebrities, and people who think they are not affected to join the rest of us who are busy and doggedly determined to eradicate the stigma surrounding HIV.  I often reiterate, “There is no proxy for me.”  Reflecting on Women and Girls HIV/AIDS Awareness Day, March 10, 2013, there is no proxy for any of us.  Shine your lights, sisters!  Those who have been distant may find their way to us.  We will eradicate the stigma.  For me, this is a spiritual mandate.  “We shall overcome.”  I offer you my own pop culture piece to eradicate the stigma.  This is entitled, “What Is Stigma To You?”

What is stigma to you?

Is it something you rue?

What will you do?

Let me give you this clue . . .

Get loud, be proud

No time to equivocate

Get loud, be proud

No time for you to wait

Get loud, be proud

Know you are loved

Just know you are loved

You are loved

What is HIV to you?

Your chance to let your light shine through?

We’re with you girl, so make it true

Our lights are shinin’ there for you

Get loud, be proud

Get loud, be proud

Know you are loved

Just know you are loved

You are loved

In love there is no fear

No one can hurt you

In love there is no fear

Hate won’t divert you

In love there is no fear

No stigma will stop you

Know you are loved

Just know you are loved

You are loved

HIV Volunteerism: In Our House

HIV Volunteerism: In Our House

by Barb Cardell
Barb-PAHO-March-2011

“What do you do?”

It is a common question that I dread.

“I am a PROFESSIONAL volunteer,” I usually respond with a cheery smile
plastered on my face.

What am I supposed to say?

“I CAN’T work because 20 years ago I tested HIV+ and just surviving was my full time job?”

“I DON’T work because fear and ignorance of HIV make people afraid to eat food I prepare?”

“I am unable to work because the dominant paradigm traps me with a traditional definition of a job, the hours, the attendance, even the “professional” outfits that I am often unable to provide?” (Those are the bad days when I am pissed at how inflexible employers are).

I am fortunate in many ways. I am married and my husband long ago offered to be the financial support in our family. He provides the health insurance, the roof over our heads, the food on the table. Does he hold it over me? Nope, for some reason that still mystifies me, he is just glad to have me alive and in his life. Does it make it any easier to be the stay at home partner? Nope, all our values and worth as adults are tied to our jobs, our paid jobs.

So what do I do? I volunteer, a lot. I squeeze 28 hours out of every 24, over scheduling myself so that I can be at every meeting, helping every person that needs me or taking every shift.

volunteer

Here is the puzzling part, what kind of job would I like or be good at? I don’t even know. 20 years of advocating and educating has made me pretty good at bunch of different things, I was blessed with a pretty agile mind and an innate curiosity. What does that sound like to you? Like so many other under-employed HIV+ women, I don’t even know what a job that uses my unique skills looks like. What does it look like to you?

So here is a challenge to our allies, coalitions, boards, and organizations that love and rely on their “HIV+ super-volunteers”: if you love our work ethic, if you don’t know how you would survive without our HIV+ knowledge and experience, invest in skills-building and economic opportunities that support us. Invest in our development as professionals including options to take a leadership role. Forward us job opportunities, always demand speaker honorariums when others ask if you have HIV+ people who can speak, send us information on skills-building trainings, and put extra effort into ensuring that when we are given the chance to present or participate in a meeting or conference that there are resources to fund us to get there. If you think we are perfect for a job, ASK us if we are interested. We might not even believe we are qualified. If you want our expertise, OFFER US A JOB, OFFER TO PAY US. Trust me, it won’t offend us, we will feel honored.

Women living with HIV are often pushed into poverty or economically unstable situations. To uphold the HIV community’s call for economic justice, we must practice what we preach in our own house. We must take to heart and walk the talk in our own house. Otherwise, we are not advocating for people living with HIV, we are fostering its devastating impact.

Can I Reach for the American Dream?

Can I Reach for the American Dream?

by Sonia Rastogi

Sonia

April 17th, 2012 was Tax Day as well as Equal Pay Day (read Teresa Sullivan’s Wage Gap blog), a day established to bring attention to the pay gap for women in the U.S. For many women living with HIV, Tax Day brings home the truth that regardless of a woman’s financial status, an HIV diagnosis is frequently a sentence to a lifetime of poverty.

Is the American Dream of life, liberty, and the pursuit of happiness really achievable for HIV-positive women?

As a young woman living with HIV I am fortunate to be employed and fortunate to have healthcare through my employer. However, what happens when I change jobs or become unemployed? What happens if I decide to pursue school? What happens if I move to a different state? What happens when I am 60 years old and celebrating 40 years of living with HIV? How many tens of thousands of dollars will I spend on medical care in my lifetime? How many different networks of care will I have gone through? Do I compromise on the right to have a dream – to live by the seat of my pants and jump for opportunities – in order to have stable healthcare? These are only a few of the questions that many HIV-positive people, especially women, confront each morning.

HIV is a lifelong, chronic disease. It does not have to be a disease of crisis, despair, and shame. Yet, it is. It is because HIV runs the well-worn path of gender inequality; where race, gender, and geography are risk factors for acquisition. It is because we lack the investment in each other as human beings to pursue our dreams, to foster families and communities that can thrive.

64% of women living with HIV receiving medical care had annual incomes under $10,000 compared to 41% of men, according to the HIV Cost Services and Utilization Study.

People living with HIV are incentivized to stay poor. Benefits programs including ADAP, Medicaid (read Kat Griffith’s Medicaid Surveillance blog), and housing programs require an HIV-positive person to keep her income below a certain level to qualify for benefits – in some states, an individual must earn less than $1,200 a month to qualify for the AIDS Drugs Assistance Program. If a woman attempts to earn more money to take care of herself and her dependents, she may run the risk of losing her health care and supportive services.

People living with HIV are incentivized to get sick. Some programs require an AIDS diagnosis to qualify for and stay in care or housing. Instead of investing in preventative and long-term care, some programs like Medicaid require a disability diagnosis before care and medication are dispensed. This means HIV-positive people may have to get severely sick and disabled before seeing a doctor or receiving medication.

Our system is broken. How can people living with HIV be productive tax-paying members of society (read Precious Jackson’s Economic Growth blog) when healthcare and workplace policies consistently disenfranchise and threaten to disenfranchise us? For many women living with HIV, the attempt to build a savings, the thought of accumulating more educational degrees, and the effort to plan for future security does not always protect us. One fatal illness, one encounter with workplace stigma, one discriminatory practice can send us into poverty.

In addition, we as women “carry the heaviest economic burden. We are often responsible for our children, partners, parents and even grandparents and grandchildren,” says Nicole Seguin, of PWN-USA, a powerful advocate and HIV-positive mother (read her blog on the Glass Ceiling).

Women are key… women are central… no, women are already turning the tide against the HIV epidemic both in the U.S. and globally. But how can we sustain turning the tide when we are pushed into poverty and discouraged from pursuing our dreams? Women have a right to work and a right to earn a living wage, while having access to high-quality healthcare to make the American dream a reality.

To achieve this dream, federal and state governments along with the private sector must support the full implementation of the Affordable Care Act (read Brook Kelly’s blog on how health care reform supports HIV+ women). Health care reform has the potential to expand the Medicaid program and get rid of the disability requirement, bring down costs, prohibit health insurance discrimination against women and people with pre-existing conditions, provide better health security, and create a better system that meets women’s unique needs.

To achieve this dream, government bodies and the private sector must fulfill all people’s right to work by funding and supporting skills-building employment and education programs such as those that work to transition incarcerated people into health care systems and employment upon re-entry into their communities.

To achieve this dream employers, government bodies, and worker’s rights movements must continue to ensure equality and equity of pay in the workplace, actively enforce the Americans with Disability Act (ADA), and incentivize the training and hiring of HIV+ women in the workforce.

We as women living with HIV demand to be counted in the American Dream. I have a dream and it will not accommodate discriminatory, oppressive, and degrading policies!

HIV Volunteerism: In Our House

HIV Volunteerism: In Our House

by Barb Cardell
Barb-PAHO-March-2011

“What do you do?”

It is a common question that I dread.

“I am a PROFESSIONAL volunteer,” I usually respond with a cheery smile
plastered on my face.

What am I supposed to say?

“I CAN’T work because 20 years ago I tested HIV+ and just surviving was my full time job?”

“I DON’T work because fear and ignorance of HIV make people afraid to eat food I prepare?”

“I am unable to work because the dominant paradigm traps me with a traditional definition of a job, the hours, the attendance, even the “professional” outfits that I am often unable to provide?” (Those are the bad days when I am pissed at how inflexible employers are).

I am fortunate in many ways. I am married and my husband long ago offered to be the financial support in our family. He provides the health insurance, the roof over our heads, the food on the table. Does he hold it over me? Nope, for some reason that still mystifies me, he is just glad to have me alive and in his life. Does it make it any easier to be the stay at home partner? Nope, all our values and worth as adults are tied to our jobs, our paid jobs.

So what do I do? I volunteer, a lot. I squeeze 28 hours out of every 24, over scheduling myself so that I can be at every meeting, helping every person that needs me or taking every shift.

volunteer

Here is the puzzling part, what kind of job would I like or be good at? I don’t even know. 20 years of advocating and educating has made me pretty good at bunch of different things, I was blessed with a pretty agile mind and an innate curiosity. What does that sound like to you? Like so many other under-employed HIV+ women, I don’t even know what a job that uses my unique skills looks like. What does it look like to you?

So here is a challenge to our allies, coalitions, boards, and organizations that love and rely on their “HIV+ super-volunteers”: if you love our work ethic, if you don’t know how you would survive without our HIV+ knowledge and experience, invest in skills-building and economic opportunities that support us. Invest in our development as professionals including options to take a leadership role. Forward us job opportunities, always demand speaker honorariums when others ask if you have HIV+ people who can speak, send us information on skills-building trainings, and put extra effort into ensuring that when we are given the chance to present or participate in a meeting or conference that there are resources to fund us to get there. If you think we are perfect for a job, ASK us if we are interested. We might not even believe we are qualified. If you want our expertise, OFFER US A JOB, OFFER TO PAY US. Trust me, it won’t offend us, we will feel honored.

Women living with HIV are often pushed into poverty or economically unstable situations. To uphold the HIV community’s call for economic justice, we must practice what we preach in our own house. We must take to heart and walk the talk in our own house. Otherwise, we are not advocating for people living with HIV, we are fostering its devastating impact.