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An Untapped Volunteer Resource: People with HIV Disease, ARC, or AIDS

The Journal of Volunteer Administration
Spring 1991,Volume IX, No. 3

We all know that maintaining and replenishing a pool of talented volunteers is an ongoing and often difficult process, and as volunteer managers we must be creative and even take risks in our choices. The questions we need to ask are whom to recruit and how to recruit. A rich resource of skilled and willing volunteers to consider, then, lies in the approximately one million people living with the Human Immunodeficiency Virus (HIV). People with HIV infection, AIDS (Autoimmune Deficiency Syndrome), or AIDS-Related Complex (ARC) can tremendously benefit any volunteer administrator and organization, offering advantages such as flexible schedules (a volunteer manager's dream-come-true), enormous talent, and an extraordinary motivation to help others. Beyond their direct volunteer efforts, they can also help an organization make a contribution in the fight against AIDS and HIV disease by fostering understanding about the epidemic and about people with AIDS.

For those unfamiliar with working closely with individuals with AIDS, many questions arise. How do I find these individuals and how do I go about recruiting them? For other staff and volunteers, what might be the ramifications of incorporating this group of volunteers and how do I address those issues? This article will attempt to answer these questions and present an understanding of this extraordinary volunteer resource.

The HIV-Positive Factor

After the 1989 International Conference on Volunteer Administration workshop, "Managing People with HIV Infection, AIDS, and ARC," many members of the audience commented that it had simply never occurred to them that a pool of "ideal" volunteers existed in the HIV-infected population. While people infected with HIV may be unable to maintain a full work schedule and are technically disabled (covered by the list of handicapped conditions in the new Americans with Disabilities Act), they are nonetheless productive and can often provide substantial volunteer hours. Many are also young, well-educated, and professionally trained. For example, the author has found pertinent volunteer assignments for lawyers, doctors, public relations experts, writers, editors, and graphic artists. Given volunteers with such high-calibre skills and available volunteer hours, managers can frequently expand the scope of traditional volunteer assignments. A volunteer with the time and requisite expertise can often take on large, involved projects for which an organization would otherwise have to hire an employee or paid consultant.

In addition to the skills and time offered to an organization, a qualified volunteer also needs to have a sense of personal commitment and responsibility toward helping others. Again, many potential volunteers with HIV disease meet this description, whether due to an innate sensibility or because of the effects of their unique situations. They are usually ordinary folks who, at a young age, have retired from the workplace because of their HIV infection or related conditions; their illness prevents them from living their lives as they once did; and it forces them to face the stark reality of their own mortality, a circumstance which most people don't encounter until much later in life.

With the help of support groups and services, many are emotionally coping with this reality and want to make a meaningful contribution to society-not only as a way to reciprocate the love and understanding they have encountered in their lives, but also to counter the feelings of frustration and powerlessness that often accompany a potentially fatal disease. Significantly, while many people with HIV disease choose to work at an AIDS-related organization because of its obvious relevance to their own situation, or because they feel particularly accepted and comfortable there, this is certainly not a rule of thumb. In the course of interviewing hundreds of HIV-infected individuals, the author has found many who, for a variety of reasons, would rather not work at an AIDS-related agency: some say they "don't want AIDS to become their whole life," some may be more interested in the nature of the work they can do at other organizations, some may already have a favorite "cause" to which they've never before had the time to donate as a volunteer. Regardless of how they choose to allocate their time and abilities, people with HIV disease usually have that extraordinary dedication that marks a great volunteer.

Recruiting Volunteers with HIV

Given that people with HIV are also members of the general population, any active volunteer recruitment includes them. Specifically recruiting people with HIV, then, often simply entails making it well known that your organization will not discriminate against people with HIV and, in fact, invites their participation in your work. For example, an organization might include the phrase, "Those covered under the Americans with Disabilities Act are encouraged to apply" in all published literature and volunteer solicitations. When an organization is truly open and accepting of different individuals, word spreads rapidly--this, of course, also holds true well beyond the HIV-infected population.

Other more proactive means of recruitment are many and varied:

  • Contact the AIDS agencies in your area and, if they publish a newsletter, ask them to mention the volunteer opportunities that exist at your agency.
  • Speak with these agencies' volunteer managers and inform them of your needs; not only could these managers refer volunteers who have decided they would rather not work in AIDS, but you also might be able to "share" volunteers who have a lot of hours to donate but who would burn out if they allocated their time solely to AIDS.
  • Place a classified ad or listing in the local gay press or in AIDS-related publications (e.g., there has been a proliferation of general-reader publications that review current AIDS research and alternative treatments).
  • Post a notice on bulletin boards at the Public Health Department, hospitals, clinics, the Social Services Department, and AIDS service organizations in your area.

Issues Specific to Working with HIV-infected Volunteers

Why haven't volunteer managers actively recruited this new and growing population of people who, by and large, have all the qualifications a volunteer manager could ask for? There are probably two main reasons: the fact that people simply haven't thought of HIV-infected individuals as a discrete segment of the population from which to specifically recruit volunteers, and the fear and stigma associated with the disease. This article addresses the first factor and, over time, education effectively addresses the second.

In fact, education should be treated as an issue distinct from a manager's conscious decision to recruit people with HIV disease. As mentioned above, whether aware of it or not, when a volunteer manager recruits from the general population, that manager also recruits people with HIV-the disease is a fact of life in the 90s, people with HIV live in every community, and they lead active lives that often include volunteer work. In other words, it's highly likely that you have, have had, or will have volunteers who also happen to be infected with HIV. And every one of your employees and volunteers is capable of contracting the disease. For many corporations and organizations, that simple fact is enough to instigate AIDS education in the workplace, which then assuages any possible fears should an employee's or volunteer's HIV status become public knowledge or should a person with HIV disease join the organization.

Many public health departments and AIDS service organizations produce AIDS education materials; many also have Speakers Bureaus that provide in-house training sessions to local businesses, schools and organizations. If nothing else, basic AIDS education assures people that HIV is not easily transmitted: it isn't an air-borne virus which could be caught through casual contact such as sharing equipment, food utensils, bathrooms, or shaking hands or hugging; specifically, the virus is transmitted through high-risk (unprotected) sex, shared injection drug needles, or by receiving a transfusion of contaminated blood (an extremely rare occurrence in this country since screening of blood donations began in 1985).

Given the fundamental ignorance and fear of HIV that still persists, an hour or two spent listening to a speaker often proves a practical investment, but more comprehensive programs and resources are also available. The San Francisco AIDS Foundation produces a very successful package entitled "AIDS in the Workplace," which covers issues such as managing employee and co-worker concerns, diffusing problems, legal and ethical considerations, benefits, and grief and bereavement issues. This is just one example, and there are many other avenues to explore. Community AIDS agencies, the health department, Impact AIDS at 1-415-861-3397, or the National AIDS Hotline at 1-800-342-2437 can answer HIV-related questions and provide a list of local AIDS agencies.

Volunteer managers who decide to actively recruit people with HIV disease, then, will find this prior AIDS education will have addressed many of the ramifications of that decision. The fact remains, though, that an individual volunteer's HIV status may always remain a moot point. Not only might volunteers never disclose their conditions to volunteer managers, which is the person's prerogative, but even if they do, they will probably wish it to be treated as confidential information. Fellow employees and volunteers may never realize that they have been working with an HIV-infected individual.

Nonetheless, in anticipation of possibly having HIV-infected volunteers on staff, a manager might have concerns about the effect of a volunteer showing signs of illness or physical deterioration, and the impact of a volunteer's death. These are real and valid issues, although not necessarily specific to people with HIV, and can be briefly addressed here. While people with HIV can live for a long time without displaying obvious signs of illness, they may show weight loss or decreased stamina. Managers must address these issues of declining productivity and whether or not the volunteer should terminate service on a case-by-case basis, but the unfortunate fact remains that many people with HIV will cease their volunteer work before they become really ill and show signs of that illness.

If the former volunteer dies (often well after leaving the volunteer position), this can have a profound emotional impact on staff who had worked with that person. Again, this is not unique to an HIV-related death; managers should ask themselves what they would do if a volunteer unexpectedly died of a heart attack or in a car accident, and they'll have the answer to how they would deal with staff emotions if a volunteer died of AIDS. In general, society isn't very adept at dealing with death and bereavement, and these issues will never be easily addressed.

A Valuable Resource

In considering the recruitment of people with HIV, then, managers need to balance the potential infusion of new and vital talent against the potential issues of fear and grief involved. Any exploration of new volunteer resources involves thoughtful deliberation, however, and as the demographics of the workplace and of volunteerism continue to evolve, volunteer managers will increasingly face the challenges inherent in innovative volunteer recruitment. A volunteer manager who works daily with HIV-infected individuals constantly witnesses their commitment to doing work that they find meaningful--and often refers them to other agencies that are not AIDS-related but where their talents and dedication will be well appreciated. Volunteer managers who accept the challenge of educating themselves and their colleagues about HIV infection can also reap the benefits that come from working with these volunteers. Volunteer managers can help their agencies discover how to tap this valuable resource. They not only will enhance the acceptance and civic pride of HIV-infected individuals, but also will do much to broaden the definition and value of volunteerism in this country.

Appendix A

Written by Irene K. Wysocki, Director of Volunteer Services of the San Francisco AIDS Foundation, has been involved in the AIDS epidemic in San Francisco since 1985. She began as a volunteer educating the general public about AIDS and developed the current volunteer program at the San Francisco AIDS Foundation, where for the past three years she has been managing volunteers. She strongly supports the AVA Board of Directors' resolution discouraging discrimination against volunteers with HIV infection and seeks to share with her colleagues the methods she and others have employed to cope with the disease among her own corps of volunteers. Ms. Wysocki received a B.A. degree in Psychology and Business in 1986 from New College of California.

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