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.
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
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.
"WHAT IT FEELS LIKE TO LIVE WITH HIV/AIDS"
© 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
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
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
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
Others with AIDS are frustrated, they're frightened, angry and pained.
Some are rejected by family and friends, they're emotionally and financially
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
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
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
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
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
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
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
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.
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
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,
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
Cultural Arts Center
October 26-November 30,1999
South Miami Hospital
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