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What It Feels Like to Live with HIV/AIDS"




Within the past few years there have been many medical advances in the treatment of HIV/AIDS, with a higher percentage of infected people now preparing to LIVE rather than die.

As a result, many new issues, both physical and emotional, are surfacing. It was learned that people living with HIV/AIDS feel alienated and isolated from their families and the greater community and the fears and facts of rejection, are very real for people living with HIV/AIDS.

"My parents said that I should tell people that I have cancer because people would accept that, then my father got drunk and told everyone I have AIDS. I had to move away from the town I grew up in because nobody would let their children near me, including family members," stated a 34 year old heterosexual female. And the greater community remains unknowing of the emotional needs of the HIV/AIDS community.

"I hate what I got because nobody wants to touch me," is a statement made by a 12 year boy born with AIDS. And the fear of HIV/AIDS, based on ignorance and misinformation, is also quite commonly expressed by non-affected groups. "I refused to have ice cream served by the girl with AIDS because I didn't want to catch it," is a remark of an older woman living in an adult congregate living facility shared by senior citizens and AIDS patients.

Since October of 1996, lead artists Dena Stewart and Stewart Stewart, have conducted workshops for "What It Feels Like To LIVE With HIV/AIDS" with approximately 400 individuals ranging in age from as young as 5 years old to senior citizens in their 70s. CFCA artists have worked with groups in the gay, lesbian, bi-sexual and heterosexual communities, and IV-drug users, from all social, economic, religious, racial and ethnic backgrounds. Also included are family members, caregivers, friends, lovers, business associates, professional care providers, and anyone else who is affected by someone who is HIV infected.

The artwork and stories created at the workshops become part of the mural which is, to date, 90 running feet and growing. The "What It Feels Like To LIVE With HIV/AIDS" mural project, although originating in Dade County, Florida, an area with the third highest rate of AIDS cases in the nation, is expanding to other cities and national locations. The mural is touring museums, libraries, schools, appropriate events, conferences and large public access locales. For each major exhibition, workshops are held with additional people living with or affected by HIV/AIDS. With each new workshop, two panels are added to the mural, so that it continues to grow, similar to the AIDS quilt. However, unlike the AIDS quilt which memorializes individuals who have died, this project personally involves and benefits the people who are LIVING with HIV/AIDS. For those who wish to sign their names, their artwork and messages will be a part of their legacies. For those who prefer to remain anonymous, their stories just might reach someone who needs to have this information.

By sharing the HIV/AIDS stories and artwork, as told by the ones who know the horrors of living with this disease, with the mural audience, the viewers become sensitized to the emotional trauma and issues experienced by people living with HIV/AIDS. While the HIV/AIDS groups benefit from the "Telling Stories Through Visuals" workshops from the artistic/expressionary aspects and the knowledge that their participation in the project will educate others, the mural audiences learn a very necessary lesson as to the emotional suffering HIV/AIDS is causing, why it is so important to be careful and NOT contract HIV/AIDS, and most important, that HIV/AIDS is NOT reserved for any one segment of the population, thereby helping to eliminate any stigma that has been attached to HIV/AIDS all these years.

"When my best friend from high school found out that I am gay, she was sure that I had AIDS and spread that rumor around the neighborhood. I don't have AIDS just because I am gay, and AIDS is not just a gay man's disease," said TL, age 19.

Understanding leads to better communication, a necessity to help bridge the gap between those living with and impacted by HIV/AIDS, and those who, to date, are not.


To maximize public and media attention, an arts committee has been formed. This committee includes Pulitzer Prize playwright Edward Albee; musician Dave Brubeck; Tony Award winning actors Betty Buckley and Ossie Davis; television journalist Linda Ellerbee; Academy Award winning actors Shirley Jones, Jack Lemmon, Patricia Neal, and Denzel Washington; Academy Award nominee actor Samuel L. Jackson; singer Johnny Mathis; television personality Ed McMahon; opera diva Roberta Peters; Latin Television talk show host Cristina Saralegui; producer/director Richard Jay-Alexander; and Miami Herald columnist Tara Solomon.

© 1998 Dena Stewart

When HIV/AIDS was first diagnosed it was thought just gay men were affected.
It was labeled a "curse" with a stigma attached, spread by sex or IV-drug injected.

Some called it a plague, to punish the people who dared to veer from the norm,
a dreadful disease that destroys body cells with the strength of a hurricane storm.

Most people assumed it won't happen to them, and the crisis would soon be resolved.
When Rock Hudson, the star, died from HIV/AIDS, celebrities became involved.

Then Ryan White, an innocent child, got AIDS from a bad-blood transfusion,
bringing the illness into mainstream, causing fear and lots of confusion.

AIDS became public and money was raised, the focus to work on a cure.
The disease has no boundaries, it kills young and old, gay and straight, the rich and the poor.

Drugs have been tried, some are working, but nobody knows for how long.
They're expensive, with each dose exacting, and for many too toxic and strong.

There are so many AIDS stories; some inspire and some are depressing.
Many say AIDS gives them purpose in life, and for them it turned into a blessing.

Others with AIDS are frustrated, they're frightened, angry and pained.
Some are rejected by family and friends, they're emotionally and financially drained.

For some populations it's out of control, while others are starting to cope.
Medical progress and public support are giving more reasons for hope.

According to national statistics, people with AIDS now live longer,
but as of this date, there's no cure in sight and the need for prevention's much stronger.

AIDS education on how it's contracted and how to keep it from spreading
is the best way to reach people at-risk, and that's where new programs are heading.

After so many people we knew died, we wanted to do something special -
to help those we could express what they feel, in a form that would be beneficial.

As artists we started a project as a way to help bridge the gap,
between the AIDS population, and everyone else on the map.

The day-to-day life of HIV/AIDS is transformed to a collage of art
to reach that someone who's not yet been touched, and hopefully tug at his heart.

To wipe out this virus completely, is the goal for which all must strive,
or one in four families will have someone with AIDS, by the year 2005.


Help Bring the Mural to Your City

The Center for Folk and Community Art is looking for organizations and corporations to sponsor the "What It Feels Like To Live With HIV\AIDS" mural to bring it to different cities.

Two CFCA artist will travel to your city to conduct workshops and add narratives and artwork onto panels representing your city.

For information on sponsoring the mural in your city or becoming involved in adding your stories to a panel, contact Stewart Stewart or Dena Stewart at:

The Center for Folk and
Community Art
1800 Michigan Ave.
Miami Beach, FL 33139


The faceless statistics living with HIV/AIDS become real people and their powerful messages appropriate for people of all ages to relate to and learn from.


This project provides a forum to open up dialogue, eliminate misconceptions about who is at-risk, and create an atmosphere of understanding and compassion - the first step in bridging the gap between the HIV/AIDS affected group and
everyone else.


The cultural arts make it possible to open minds and stimulate dialogue. This is the first step to problem solving.


In order for AIDS prevention methods to be taken seriously and work, education - for everyone, particularly youngsters who are not yet sexually active, teenagers who think they are invincible, and senior citizens, unaware of the dangers of unsafe sex - is a vital component. The lessons and experiences of people who are living with HIV/AIDS, presented in art form, offers a new tool to increase public awareness and awaken the public to their own vulnerability.


Exhibition Schedule

State of Florida, Department of Health, Disease Intervention Bureau Training Conference, Orlando, FL, June 1997

The Fourth Annual AIDS Meal Providers Conference, Miami, September 1997

1997 United States
Conference on AIDS,
Miami, September, 1997

The South Beach AIDS Project "AIDS Awareness Event" Miami Beach, September 1997

Association of Nurses AIDS Care (ANAC) Conference, Miami, November 1997

The Stephen P. Clark Government Center,
Miami, November 1997

Miami-Dade Public Library, March, 1998

Red Square, Miami Beach, March, 1998

The SunTrust Bank Building, May 1998

The Stephen P. Clark Government Center, Miami, June, 1998

The Miami Herald Building, August-September 1998

San Diego Public Library,
Sept. 25-Nov. 18, 1998

1998 United States Conference on AIDS, Dallas, TX,
October 28-November 1, 1998

Dallas Public Library,
November 2-18, 1998

The Museum of Science, Miami, November 1998 - January 1999

United Foundation for AIDS (UFA) Awareness Event at the Port of Miami, January 16, 1999

Lincoln Road, Miami Beach, February 1999

The Stephen P. Clark Government Center, Miami, March 8 - 26, 1999

POZ Health Fair, Coral Gables, April 7, 1999

Mothers' Voices Luncheon, Miami, May 7, 1999

Living Better Expo Tour,
Miami Beach, May 25-26, 1999

Minority Health Profession's Foundation, National Minority HIV/AIDS Prevention Campaign, Town Hall Meeting, Miami, July 24, 1999

African Heritage
Cultural Arts Center
October 26-November 30,1999

South Miami Hospital
Immunology Program
January 17 - February 28, 2000

"HIV/AIDS in the Black Churches Month"
Goulds Park, FL
March 1-31, 2000

Florida International University, November 15 - December 15, 2000

Stephen P. Clark Center, February, 2001

Miami Beach Botanical Gardens, March, 2001

William H. Turner Technical Arts High School Library, April, 2001

North Miami Public Library, June - July, 2001






Bill Wisser

Wolfie's Restaurant