Advocating for employment health
Enid Vázquez @ENIDVAZQUEZPA

Of all the losses suffered by long-term survivors, there’s one that remains largely unrecognized and “untreated,” says Mark Misrok, co-founder and Executive Director of the National Working Positive Coalition. That is the death of work and career dreams, and the resulting loss of income.

Having experienced the life-saving effect that getting help with needed employment played in his life, Misrok sees this gap as one that desperately needs to be addressed.

And there is federal money to fill it, some of it going unclaimed and being returned to Washington.

“For so many of us living with HIV, to be given virtually no assistance for work with living wages suggests a resignation to the inevitability of our poverty,” said Misrok of the state of HIV services.

In spite of advances in treatment and care, those services still have not fully developed to assist people in “maximizing the possibilities of life,” he said. Many long-term already had limited opportunities back in a time when they were younger but unable to work towards a future.

Moreover, the programs designated to receive billions of dollars in the U.S. to help people obtain employment are accessed by few people living with HIV, and HIV case managers are usually not even aware of them, said Misrok.

One egregious example helps make his point. He talked to a woman in Illinois who very much wanted to return to work after years of receiving disability benefits. She was healthy again and it was her dream to become a social worker.

This would be a different line of work from what she had done before, so she embarked on her dream by pursuing a bachelor’s and master’s degree, accumulating tens of thousands of dollars in debt in the process.

“No one was able to inform her in her regular visits with HIV case managers that there was the Illinois Division of Rehabilitation Services, which could very possibly help her with the expenses of the training preparing her to gain employment matching her changed physical capacity,” Misrok said.

Thanks to this new information, she registered for her state’s vocational rehabilitation services and never again had to take another loan to fulfill her goal.

“They paid for all kinds of expenses, including the books and supplies that she needed to be prepared to go to work in her new profession. None of her HIV service providers had brought the suggestion to her that she didn’t need to go thousands and thousands of dollars into debt to prepare herself to be able to do that.

“And that gap in access to information, services, and resources is duplicated in almost every state across the country, in almost every community among those most impacted by HIV,” Misrok continued. “We have been inexplicably slow to inform ourselves as service providers and policy makers about resources that currently exist that can be brought to bear to support and assist many people living with HIV to understand and pursue options in employment, effectively entrapping many thousands of us in lifetimes of poverty and social marginalization. Into isolation.”

He said public health systems often do not recognize the importance of financial well-being and fulfilling, self-chosen work to staying healthy, to not acquiring HIV, or to staying in care if positive.

It’s important for HIV service organizations to get on the bandwagon and access employment funds, to address the particular vulnerabilities of so many people living with HIV, said Misrok.

It’s important for HIV service organizations to get on the bandwagon and access employment funds, to address the particular vulnerabilities of so many people living with HIV, said Misrok.

“A particular example within our community I would like to highlight is transwomen of color,” he said, “and all transgender and gender non-conforming, non-binary individuals who face some of the highest levels of discrimination in job searches as well as in the workplace, as do people who have had criminal convictions and experienced incarceration. And we need to underscore the importance of access to effective, welcoming, affirming employment services, which are a structural intervention that level the playing field for communities who have never experienced the job market as a level playing field.”

Women, youth, and immigrants are also underserved for employment and vocational development needs, he said.

Misrok pointed to Chicago House, a long-established HIV service organization which has been providing employment services for many years. The organization has developed an employment program specifically for transgender and gender-nonconforming individuals whether or not they are living with HIV. “That is an important acknowledgement of the contribution of unemployment, underemployment, and employment discrimination to vulnerability to acquiring HIV, as well as HIV care outcomes,” Misrok noted.

In June, Misrok flew to Chicago to co-host a new national employment initiative for people living with HIV in partnership with The Reunion Project.

Founded in 2015, The Reunion Project, or TRP, has hosted town hall meetings around the country for long-term survivors of HIV. They quickly learned that some of these long-term survivors were young people who were born with the virus.

Somewhere along the line, TRP decided to work—no pun intended—on something that came up over and over—the need for a job.

“I didn’t understand why employment wasn’t part of [HIV] case management,” said Julio Rodriguez, Deputy Director for the Office of Employment and Training in the State of Illinois Department of Commerce and Economic Opportunity. Rodriguez had always wanted to focus on employment opportunities specifically for people living with HIV. He was able to speak to his passion at The Reunion Project meeting held in Chicago in June.

He spoke, fittingly, during a day devoted to working that was added as a pilot program in conjunction with the one-day town hall style event for which TRP is known. The day was filled with personal stories, legal rights, and the presence of local employment assistance agencies.

Rodriguez called on the people attending to help galvanize the community call for employment services for people living with HIV and the communities most vulnerable to the virus.

 “We have a right to have our wishes for employment respected,” Misrok told the audience. “Trans people, people coming out of incarceration—our communities face the greatest stigma and discrimination.”

 “We have a right to have our wishes for employment respected,” Misrok told the audience. “Trans people, people coming out of incarceration—our communities face the greatest stigma and discrimination.”

Deciding then to move on with his life, Misrok discovered an organization that helped people living with HIV find employment, the Positive Resource Center in San Francisco. At first he was a client, then became a volunteer, and later helped develop and lead the center’s employment services program. He went into vocational rehabilitation because he didn’t qualify for disability benefits but couldn’t work an entire shift.

“I needed to feel hopeful about this life. That was important to me. It saved my damn life,” Misrok said.

One of the day’s organizers and panelist Vanessa Johnson recalled having just graduated from the prestigious Temple University Law School and earning big money. “But God had other plans for me,” she said.

Shortly after learning that she had HIV, her partner died and she was left with their young son to take care of.

“From 1990 to ’95 I was in the wilderness,” Johnson told TRP. “I didn’t want to feel any pain. My mother didn’t preach, but she just kept saying, ‘What are you going to do?’ After a while, my brother said, ‘It doesn’t look like you’re going to die any time soon.’ And that was the beginning of my second life.

“I started volunteering. That’s how I got back,” Johnson said.

She started working on various projects, which in turn got her into non-profit organizations. Eventually, she went into business for herself, founding the Ribbon Consulting Group in Washington, D.C.

“Please, if you’re interested in self-employment, talk to the small Business Administration,” Johnson said. “Check out their resources.” (go to sba.gov/business-guide)

She also advised that people talk to individuals who are doing the type of work that they would like to do and to focus on life-long learning opportunities, whether it’s at the library or on TV, not just going to school.

“I also volunteered, at lots of AIDS organizations,” said panelist Michael Smith. He found help at the employment service organization Phoenix Rising, in Santa Fe, New Mexico. One day, his vocational rehabilitative counselor told him, “You know, Michael, there are workshops coming up on working alongside Social Security [disability benefits].”

With that, he was on his way to a fulfilling job. “It was exciting. I was giving back,” he remembers. He was able to use the Ticket to Work program to help organizations providing services to people living with HIV, and later founded the Phoenix Rising HIV/AIDS Re-entry Project.

“There is tremendous opportunity in pursuing advocacy to call on government resources to be made effective for our community,” Misrok noted. “Without access to information, services, and resources, many of us living with or at greater vulnerability to HIV are not set up to fully participate in our communities, and in our own lives.”

“Positively Aging and Work: What Are My Options?” is part of Positively Aging, a collaboration between The Reunion Project, TPAN, and POSITIVELY AWARE, and is supported by a grant from Gilead Sciences. Two employment resource events will be held in two more cities over the next two years. Go to tpan.com/reunion-project.

See Employ This Advice and Employment Resources in this issue.