Why Work?

Work is the single most normative experience for adults in our society. It is not a marginal or "special" issue. It is a central issue for most HIV-positive people just as it is for most other people. It is of critical importance for HIV-positive people who are not symptomatic, for those who are symptomatic but not disabled enough to qualify for disability benefits, for those who receive disability benefits but who want to do more with their lives, for those who cannot subsist on the pittance they receive from Social Security, for those whose futures are restored to them (whether temporarily or permanently) by successful treatment, and for those who want to make a positive contribution to their communities and to society. It is of critical importance for all HIV-positive people who do not want to be perpetually marginalized.

We know from research with people with other disabilities and chronic medical conditions that work provides structure, opportunity for social integration and support, distraction from symptoms, a sense of purpose and identity, worth and fulfillment, opportunities for growth and learning as well as income that enables a person to be a consumer of more than just services. We know that work is key to recovery from depression and other mental illnesses, that working decreases dependency on service systems and reduces the need for crisis-level services. The research is starting to verify that people with HIV benefit similarly from work, whether full-time, part-time, paid or volunteer.

As the experience of this virus is changing for so many, there is a strong need for the HIV services and research world to catch up. I would not suggest that we abandon issues like housing, nutrition, prevention or primary care. Unfortunately, I believe there will always be people who need those immediate services to meet immediate needs. Nevertheless, the time has come for us to equip ourselves to help HIV-positive people imagine, plan for, and move into their futures. And if we believe that individuals have futures, most of those futures will have to include work.

The good news is that there is starting to be good research and practice information available on how to provide effective employment supports. There are a few places around the country where people are really benefiting from good programs. Whenever I meet colleagues who are involved with efforts to help HIV-positive people with employment, we lament that we all have the same difficulties. We find that work-related issues are barely represented on the schedules of the major HIV conferences, work hasn't made its way into funding priorities, it is not high up on the service agendas -- yet consumers in our communities are expressing an overwhelming need for help with employment.

In Philadelphia, where we ran Project KEEP (the Kirk Employment Empowerment Project), the vast majority of our participants were African-American or Latino, from impoverished and under-resourced communities; and most experience multiple barriers to employment including concurrent mental illness and/or substance abuse, history of incarceration, homelessness, etc. Many were gay and a few were transgendered. Some lived with other disabilities or medical conditions. Nearly all of them lacked important information and support to navigate complicated benefits situations, negotiate for job accommodations, or help them manage the barriers well enough to pursue their own employment aspirations. The HIV service system seems to be doing a pretty good job of providing most of these folks with decent medical care. They have case management to help them with housing and nutrition and transportation and other immediate needs. But they see work as a key to their future, and there are few currently in the HIV service system designated to help with this.

It seems to me that if treatments continue to be as effective as they are now, or more so, there will be increased need for services and supports that are future-oriented, rehabilitative in nature, and focused on moving consumers into increased self-reliance, autonomy and self-management. If so, employment is key, and we will all need to know as much as possible about it.

Karen Escovitz, M.S.S., is a project director at the Matrix Center @ Horizon House, Inc. in Philadelphia. karen.escovitz@hhinc.org