Returning to Life
If you think about it, it's nothing short of amazing that some of us have made it this far. We have endured despite the threat of death, despite the symptoms and the stigma and all of the sheer indignities of HIV. We have fought back the fear and the depression, the sense of vulnerability, the discouragement -- and the discouragers. For those of us who have endured in the face of this debilitating illness and who have stood up to the relentless physical, emotional, addictive and political pressures, our very lives are a victory.
Having beaten such incredible odds, the next steps are both achievable and inevitable. More and more of us are getting to a point where we're ready to claim our future. No matter where we're starting or what we've been through, all of us have some capacity to move toward greater autonomy, toward more personally meaningful social engagement, and toward something more stable and satisfying than subsistence level income. More and more of us are thinking about work.
I'm a gay man with AIDS. That's one of the ways I can be identified, but it's also true that I've been many other things in my life. I've been a student and a teacher, a protégé and a mentor, a son to two parents and a brother to two siblings, a boyfriend -- briefly -- to several guys, a partner to two men, and after years in the wilderness, a husband to just one. I've been an ROTC cadet, a frat boy, and a Catholic seminarian. I've been a waiter and a writer and a counselor to homeless and incarcerated youth.
In the context of this epidemic, I've been a street-based activist, a social services advocate, a member of planning councils and boards of directors, a prevention educator, a case manager, a program director, and now a public health administrator.
Like all of us, there are a lot of things that contribute to who I've been and who I am. But to many government officials, I am first and last a person with AIDS. To them and many others, the diagnosis in my medical chart stands out as the single defining element of my life and my identity.
When I was diagnosed with HIV in 1990 the evidence was clear that I was looking at a three to five year prognosis. In 1991, my T-cells dropped below 200, anticipating what would soon become an official AIDS diagnosis. In the fall of 1992, a few weeks before I turned 30, when the headaches and the fatigue and the other disabling side effects became just too much, I went out on "permanent" disability.
When I tested positive we were deep in the Reagan/Bush years, more than five years away from the emergence of protease inhibitors, and it never occurred to me that I would see 35, never mind 40. It never occurred to me that I'd see a Democrat elected president, not to mention a second Bush. It never occurred to me I'd see the turn of the century, or fall in love, or buy a house, or think about having children. Yet these things are all true today.
Back then, I had stopped thinking about the future at all. I took care of sick friends, and I grieved their deaths. I grieved my own death prematurely. I used the AIDS Drug Assistance Program (ADAP) to access preventative medications for every opportunistic infection imaginable. Between them and the large quantities of medical marijuana I smoked for the nausea (and the boredom), somehow I endured beyond every realistic expectation.
Then, along came the protease inhibitors and triple combination therapy. To be honest, I initially experienced a sense of horror as I realized that I wasn't going to die any time soon. I used to refer to that as "the threat of imminent survival." Having experienced so much grief and having prepared so completely for my own death, I really didn't know whether I could muster up the psychic energy necessary to prepare for life.
But I did it -- with a lot of luck. I had maintained some limited involvement in the politics of social services for youth and people with HIV and I stumbled onto a few consulting gigs. People offered me the occasional part-time job related to my prior work experiences. Eventually, as I started to exist more in the "Land of the Living," a passion and excitement for life started to creep back in. I started to contend with some of the financial wreckage, the vocational confusion, and, let's call it out, the depression, fear and drug abuse that stood between me and employment.
I made some good decisions and a fair number of bad ones. I started out slowly, and in 1998, after more than six years on "total and permanent" disability, I was offered a job as an AIDS services administrator.
It hasn't been easy. I needed external support to deal with some of the issues that had been swept under the carpet along the way. Like a lot of people who make that transition, I had an emotional crash after about six months when I realized that work wasn't going to fix everything that was broken in my life. Then, after about two-and-a-half years, my third combination of antivirals stopped working. I started a new course of treatment that made me so sick I had to take two extensive leaves of absence that kept me out of work for almost a year. Fortunately I work for a large employer that understands its responsibilities under the ADA (Americans with Disabilities Act) and the Family Medical Leave Act about medical privacy and reasonable accommodations.
The reality is I still have AIDS, and my fifth combination of HAART has five drugs -- four classes -- which has created another whole set of challenges along with the need for still more pills with still more side effects. Honestly, sometimes there are so many side effects I lose track.
I suppose I could stay home all day and write down my symptoms, and discuss them endlessly over a bong with some of my friends who aren't working. But the truth of the matter is that my life is infinitely better now that I work. Don't get me wrong, it can be really challenging taking care of myself as well as I need to. I don't eat well enough, I don't get enough exercise and sometimes I'm late with my meds. But overall, I think organizing my life around work that I care about leaves me physically, mentally, and spiritually more healthy than organizing it around managing symptoms and pursuing healthcare. And it's great to get a decent paycheck.
I recently went to a large conference for HIV service providers. There were workshops on fundraising and management, lipodystrophy and hepatitis C, microbicides research and vaccine development; workshops on providing food and housing and healthcare, adherence and nutritional education and treatment support to people with HIV/AIDS in all of our incredible diversity. The CDC has recently discovered that people with HIV have prevention needs and a role to play in prevention, and so there were even workshops on HIV prevention for positives.
But there was nothing on vocational counseling. There was nothing on employment; nothing on supporting our efforts to seek and maintain economic independence. Nothing to help us to make informed choices when risking the relative security of our medical, housing and financial benefits by simply seeking employment; nothing to overcome the barriers to social integration we face. There was nothing for someone taking their first step toward getting a first job. For that matter, there weren't even any workshops dealing with the challenges of providing health and supportive services to those of us who never left the workforce, to those of us working again, or to those of us struggling to find our way back onto benefits after our employment efforts have faltered.
Other than a giddy moment around the advent of triple combination therapy when some overly optimistic prognosticators predicted that people with HIV were all going to surge back into the workforce, it seems as if too many of our advocates and allies have determined that employment is something we shouldn't or can't achieve. At the very least, they seem to view the challenge of employment as a marginal issue. It still hasn't captured their imaginations, commanded their attention, called forth their creativity, or in any significant manner compelled them to marshal their considerable political resources.
Let's be clear, the federal government now spends billions of dollars a year for HIV healthcare and supportive services -- and we need these resources. It's true that many of us have a vital need for publicly-funded medical services, access to drug therapies, and assistance with food and housing and other basic needs. But it's also true that with our allies we have created what many of us now refer to as an AIDS Industrial Complex, one which is predicated on our postures of passivity and dependence. Services and programs designed to assist us in our efforts to become or remain self-sufficient are left bankrupt beggars at the gate. Indeed, transition-to-work services are not a permissible use of Ryan White funds.
Certainly the dialogue at this AIDS conference presumed that we continue to inhabit what some call a disability identity -- and that this identity is in fact total and permanent. The implication is that we must maintain this posture if we are to continue to be beneficiaries of the system's good efforts and good intentions, and of the increasingly insufficient resources of an increasingly out-of-touch and disinterested federal government.
To be honest, I believe that a perverse and simplistic contradiction currently exists around issues of employment and people with HIV, one which careens back and forth between paternalism and a pernicious form of judgment. Informally, I hear many service providers say with concern and conviction that most of their clients aren't thinking seriously about employment, and that even if they are, it just isn't a very realistic possibility. Painfully, I hear others speak with scorn of those of us who (in their opinions) aren't working and could, or aren't working and should -- resentful that we left or haven't yet found our way into or back into the workforce. We are described by them in ways that sound suspiciously similar to Reagan-era descriptions of so-called welfare queens, as if the meager incomes and scraps of services we receive are so freaking fabulous, or as if we we're gleefully self-satisfied at scoring some disability jackpot that allows us to live carefree lives.
Seemingly, many of these good people have somehow failed to grasp the nature of the complexity in our lives; the reality that, despite persistent disabling symptoms of HIV disease and HIV treatments, a great majority of us experience external pressure and/or a real desire to work. Most of those not working don't feel fortunate but rather feel stuck in relative poverty or financial chaos. Many of us feel bored and isolated and stigmatized by the marginalization of not working. We feel simultaneously sustained and trapped by disability benefits. Because we continue to be vulnerable to the uncertainties of HIV, we may be deeply uncertain of our ability to compete in the job market. Sometimes we are paralyzed by the fear of losing our housing and healthcare if we try to work but then end up unable to sustain employment. And we are worried about whether we can work well enough and consistently enough to really improve upon whatever stability we might have obtained from the increasingly fragile benefits system.
So, our symptoms and uncertainties are real and based on very concrete challenges and dangers. Nevertheless, for the majority of us who have benefited and will hopefully continue to benefit from the new therapies, the question of work is going to assume greater importance, not less.
Let's look at a few facts. What limited data we have suggests that as many as three quarters of people with an AIDS diagnosis are not employed, and that some smaller number, perhaps one quarter, of people who are simply HIV-positive are disabled by the virus. In places like San Francisco, that would mean that as many as half of all people with HIV/AIDS are not working. Nevertheless, a San Francisco needs-assessment a few years back suggested that as many as one in three non-employed/disabled people with HIV/AIDS had an urgent desire and intention to return to the workforce. (In Los Angeles at around the same time, it seemed that two out of three were seriously thinking about employment.) And the San Francisco assessment showed that the need and desire to work was expressed equally across obvious distinctions like race, sex and gender, sexual orientation, and income level.
If these numbers hold true nationally, then one- to two-thirds of people with HIV/AIDS in this country may fit the following profile: we aren't working; we're totally dependent on family, friends and social supports for food, shelter and healthcare; but we're thinking about or actively trying to find a way to become employed, trying to find our way into the mainstream of American life. Why aren't these efforts capturing the attention of our allies and advocates?
One reason is that we just don't know if these numbers hold true. More than seven years after the emergence of triple combination therapy, we still have never had any kind of comprehensive national survey of people with HIV designed to determine our attitudes and needs regarding employment. Almost everything we think we know continues to be anecdotal, and this is simply unacceptable. It's long past time that the federal government invested the resources necessary to help us better identify and diminish the barriers to our full social inclusion and economic empowerment.
When we talk about a "changing epidemic," it seems to me that this dynamic concerning work should be capturing a great deal of our attention. And let me say this quite frankly, the people and the organizations that say they are concerned about our welfare had better take notice of this, or they're going to become increasingly less relevant in our lives.
Karen Escovitz from the Matrix Center in Philadelphia has written an eloquent and concise articulation of the need to pay greater attention to this issue of HIV and employment. She says simply, "Work is the single most normative experience for adults in our society. And if we believe that individuals have futures, most of those futures have to include work."
What I most appreciate about Karen's insight is that it's not rocket science. Any casual reflection on the nature of work in our society will reveal that work has not just economic, but similarly significant social and even spiritual dimensions. For many who are employed in the HIV/AIDS service field, work plays a vital role in their own sense of worth and self-esteem. Why would anyone assume that recipients of such services would place any less value on the social and financial remuneration that work brings?
As I tried to demonstrate earlier, each of us is so much more than a virus and a diagnosis. But if we're not supported in our efforts to develop viable futures as actors in our own lives, if we're not given opportunities to confront the obstacles to work (that might include but isn't limited to paid employment), how are we ever to have lives that are really worth living?
The sad and frightening truth is that the most experienced and innovative programs attempting to assist HIV-positive people with work entry/re-entry issues have been hobbled by uncertain, patchwork, and diminishing funds. Programs that showed early excitement after initially being funded as demonstration projects have not subsequently been invited to apply for anything that approaches stable government funding streams.
We know from experience that people with HIV/AIDS have discrete and particular needs for targeted services. The time has come for our friends in the larger HIV/AIDS community to join with us in pressing decision makers at CDC, HRSA, and Departments of Labor and Education to recognize the essential role of employment and employment services in the health and wholeness of people with HIV/AIDS in the only manner that has any meaning -- through strategic, coordinated, and sustained funding.
Last year, a group of people working on these issues organized ourselves as the National Working Positive Coalition, or NWPC. Our mission is to advocate for work opportunities and improved services, to coordinate the sharing of relevant information, and to promote experience- and evidence-based best practices in employment services for people living with HIV/AIDS. Working on behalf of the larger group, some of us have developed a core set of principles that we believe must guide our work together and must set the stage for national efforts and discussions about HIV and employment.
Twenty years ago a small group of people with AIDS caucused as part of the Second National AIDS Forum in Denver. They formed the country's first national AIDS organization, NAPWA, the National Association of People With AIDS. They also crafted a set of revolutionary guidelines for the empowerment and treatment of people with AIDS that came to be called the Denver Principles. These Principles were revolutionary because they rejected the words and roles of "victim" and "patients," insisting that we be recognized as "people living with AIDS," and that as people we have the full range of human rights and needs as everyone else, and that we must be involved in the decisions that affect our lives.
My fantasy is that in the not too distant future, people living with HIV/AIDS will really be seen as full members of the community, agents of our own destinies, folks with futures and aspirations and a right to meaningful inclusion in the lives of our larger communities. When that happens, our friends and allies and advocates may still be needed to assist us with the work of moving forward. My hope is that in the same way that the Denver Principles shaped the last generation's work on AIDS a new generation's efforts will be informed by the revolutionary shift in thinking represented by the values of this nascent National Working Positive Coalition.
I believe that we are at the beginning of a new era in the history of this epidemic. Here's what I mean by that. The first 15 years of the epidemic were about dying -- first quickly, then a little more slowly, but it was all about dying. The next five years were about not dying -- and I know that people are still dying, but if we're honest with ourselves, the impact of treatment in the developed world is that mortality due to HIV has been greatly diminished. It's my hope and belief that this next era of the HIV/AIDS epidemic is about living, really learning to live, fully, with HIV.
Eric C. Ciasullo is a founding member of the National Working Positive Coalition (NWPC).
This article was provided by Gay Men's Health Crisis. It is a part of the publication GMHC Treatment Issues. Visit GMHC's website to find out more about their activities, publications and services.