Copyright ©2002 UNA-Canada.
Site by
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Erin M. Brown, B.S.W.
Beth N. Collison, B.S.W.
Nancy L. Rogers-Currie, B.S.W., R.S.W.
What do you know about HIV/AIDS? What do you think we should be
doing? Are we doing enough? These are some of the questions that
we had in mind when we started this project. We invited youth and
youth workers to tell us what was on their minds about HIV/AIDS.
Youth and youth workers came up with a few common themes, mainly
to do with what is, what isn't, and what should be happening around
the world with HIV/AIDS issues.
In this section, when we say "youth told us," "youth
said," or "youth felt," we are talking about the
diverse group of youth and youth workers who spoke with us for this
study. Also, you will notice quotes in text boxes. These are the
exact words of youth and youth workers who talked with us.
We hope that you find something in here that is interesting or
new to you and that after reading this you will have your own ideas
to add.
This study was made possible by UNA-Canada (http://www.unac.org)
and Carleton University School of Social Work.
Many thanks are given to the youth, youth allies, and youth workers
who shared their opinions and ideas, which have added so much to
this report.
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Glossary |
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Can you relate |
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What is HIV and AIDS? |
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How many people are
infected around the world? |
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What youth told us |
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What can be done? Tools
for action |
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The Social Work
Manifesto on HIV/AIDS |
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Appendix: How we
carried out the project |
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- HIV Infected - Someone who has been diagnosed with HIV.
- HIV Affected - Someone who is not infected with HIV, but who
feels her/his life is in some way touched by HIV. For example,
a person's mother / sister / friend / partner has been diagnosed
with HIV.
- Anonymous HIV Testing - When people go for anonymous HIV testing,
they are not asked to give any information about themselves; this
includes their name, their address, and their health number. If
you test positive, the doctor will report to Health Canada that
someone has tested positive for HIV, but will not report your
name because s/he does not know it.
- Confidential HIV Testing - When people go for confidential HIV
testing, they give their personal information (name, address,
health number) to the person who does the test. If you test positive
for HIV, the doctor must (by law) contact your past and current
sexual partners and tell them that someone they had sex with has
tested positive. The doctor will also contact Health Canada, give
your name, and tell them that you have tested positive for HIV.
- Youth - The Government of Canada defines "youth" as
people between the ages of 15 and 29. The youth who talked to
us were between the ages of 19 and 24.
- Youth Allies - Our definition of a "youth ally" is
someone who is over the age of 24 and who either works with or
advocates for (assists and supports) youth.
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We've heard and we understand that many youth
are bored and tired of hearing the same things about HIV/AIDS
and are looking for creative ways to learn and take action on
HIV/AIDS issues. |
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We've heard and we understand that many youth
are confused about the HIV/AIDS information given to them. |
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We've heard and we understand that some educators
and parents/caregivers are looking for new ways to educate youth
about HIV/AIDS. |
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HIV stands for Human Immunodeficiency Virus.
HIV is carried through the following bodily fluids: blood, semen (cum),
and vaginal fluids (including menstrual blood and breast milk). These
are the only bodily fluids that have enough HIV in them to infect
someone. You can become infected with HIV if one of these four bodily
fluids, from someone with HIV, gets into your body and finds a way
to get into your bloodstream.
Some of the most common ways that you can get HIV are: through
unprotected sex (oral, anal, and vaginal contact without using new
latex condoms, dental dams or gloves); sharing sex toys that haven’t
been thoroughly washed; sharing needles (studies have shown that
used or dirty needles must be cleaned with a bleach if they are
going to be shared safely); from mother to baby while giving birth
or through breast milk; or from blood transfusions before 1985 (in
Canada).
HIV attacks your immune system – the part of you that fights
off infection – by damaging your T-helper cells (white blood
cells that help fight infection).
AIDS stands for Acquired Immune Deficiency Syndrome. When you have
HIV, because of damage to your immune system, you begin to experience
health problems. At first these may be small problems, but over
time the illnesses become more serious. The amount of time that
it takes HIV to begin to affect a person’s health varies widely
from person to person. When you are diagnosed with one of the serious
illnesses or cancers that are called “AIDS-defining,”
you are considered to have AIDS.
We have just barely covered the basics of HIV and AIDS. To get
a better picture and more information about HIV/AIDS, you can check
out these websites:
MTV in association with UNAIDS, the Kaiser Foundation, and the
World Bank
http://www.staying-alive.org
>>> (This is an amazing website, with tons of definitions,
facts, figures, and interesting information – and it is designed
for youth!)
AIDS Committee of Toronto
http://www.actoronto.org/actweb/brochures.nsf
Health Canada
http://www.hc-sc.gc.ca/english/diseases/aids.html
Health Canada – The Journey Begins
http://www.hc-sc.gc.ca/hppb/hiv_aids/youth/journey/aids.html
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There are people with HIV/AIDS living in every country in
the world. As of December 2001, there were 40 million people
worldwide living with HIV/AIDS. Everyday, about 14,000 people
become infected with HIV. Over 7000 of these newly diagnosed
people are youth aged 15 to 24 years. In some countries, like
Botswana, 44 to 45% of people aged 20 to 29 are HIV positive.
In Myanmar, 40 to 60% of some populations are infected with
HIV. Since 1981, HIV is believed to have infected 60 million
people in the world.
As of December 31, 2000, a total of 48,014 positive HIV tests
had been reported to Health Canada. About 29% of these tests
were from people between the ages of 15 to 29. These numbers
only count the people who were tested; there could be many more
people with HIV who have not been tested and do not know that
they are infected. |
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| The number of people around the world who are becoming infected,
who are infected, and who are dying or have already died from
HIV/AIDS is impacting the well-being of communities. In communities
that are not wealthy, there are not enough resources for citizens:
for example, people cannot afford medications, there is not
enough health care or medical facilities, and there may be little
support for people who are infected or affected. In the most
affected communities (in sub-Saharan Africa): |
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Children cannot get an education because their teachers are
dying and some children leave school to take care of their family
members who are sick. Some young women and girls also feel vulnerable
at school. |
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Faith congregations are disappearing because members are dying. |
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There is not enough food because farmers are sick with and
dying from HIV/AIDS and they cannot look after their crops. |
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People cannot work because they are sick and must cover the
costs of health care, which makes entire families poorer. |
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Community leaders and politicians are HIV infected
and are dying. |
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| For these reasons and others, the United
Nations has called the HIV/AIDS situation around the world a “global
HIV/AIDS crisis.” In June 2001, the United Nations General Assembly
Special Session on HIV/AIDS said that its first priority is to “ensure
that people everywhere – particularly the young – know what
to do to avoid infection.”
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| There are many studies that talk about youth and HIV/AIDS,
but have not really asked youth directly for their ideas. We wanted
to hear directly from youth, who we consider to be experts on youth
issues.
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| What youth told us about: |
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| 1. Prevention / Education / Awareness
Strategies |
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Media |
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Some youth told us that their first
introduction to HIV/AIDS information was music, music videos,
and tape/CD jackets (lyrics and awareness messages). In fact,
some youth told us that this source of information had more
influence on them than anything they had heard from family or
teachers. |
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Religious Instutitions |
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Youth thought religious institutions (churches,
temples, mosques) and spiritual leaders (community elders) could
be more involved in responding to HIV/AIDS in their communities.
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| 2. How Youth Felt
About These Strategies |
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| Youth and youth allies
were very vocal with their concerns about the formal education system,
current government priorities and responses, and the many youth that
fall through the cracks of current approaches to HIV/AIDS. |
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Current HIV/AIDS Education
Strategies Within the School System (Public, Private and
Religious) Are Not Working! |
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| Most of the HIV/AIDS prevention strategies
are "abstinence-based." These strategies teach
youth that not having sex is the only way to protect themselves
from HIV/AIDS. No other options are given. In reality,
many youth are having sex and want/need to know how to
protect themselves and their partners. |
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| Youth felt that school-based HIV/AIDS education focused
too much on people "dying" of HIV/AIDS. These "scare-tactic"
messages made them feel like they could not ask questions for fear
of being shamed. They felt they had gotten the message that "if
you have sex, you're going to die." |
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Not all educators are giving the same information to youth.
Youth and youth allies think that this is because educators
themselves may not be well informed, may not be comfortable
with the subject of sexuality, and may not see how HIV/AIDS
relates to health in general. The result of this is that youth
often feel confused about the conflicting messages they may
receive from educators and parents/caregivers.
Youth felt that there is not enough time devoted to HIV/AIDS
prevention and awareness within the school curriculum. Youth
said that HIV/AIDS education may only happen once a year,
which they thought was too little to satisfy their sense of
personal protection knowledge.
Often HIV/AIDS education within schools does not talk about
HIV testing. Because of this, youth feel they have not been
well informed of their testing options. HIV testing is often
not encouraged within schools, resulting in youth feeling
that testing is not important or necessary in their lives.
The lack of discussion about testing also leaves youth feeling
scared about getting tested or talking about getting tested.
Youth expressed to us that they didn't know the difference
between confidential and anonymous testing or even where to
get tested in their own communities.
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Government Priorities Do Not
Support Youth and HIV/AIDS! |
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Youth felt that the federal government does not care enough
about HIV/AIDS. The reasons they thought the government does
not care are:
- There is no federal protocol for HIV/AIDS treatment for
youth.
- Most of the drug trials have been done with adult men;
this means that we don't have a good idea of how HIV/AIDS
drugs effect young bodies and minds.
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Current School-based Strategies
Leave Too Many Youth Out! |
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Youth thought that a lot of people are missed
by HIV/AIDS education in schools. Youth who do not go to school
(street youth, youth in prison) miss out on all education that
happens in schools. Youth who do not take physical education
(where most HIV/AIDS education happens) are left out. Youth
whose first language is not English or French might have a hard
time understanding the vocabulary of HIV/AIDS.
Educators often only talk about heterosexual sex (sex between
men and women) when teaching about HIV/AIDS and sex education
in general. Youth said that gay, lesbian, bisexual or transgendered
(GLBT) youth would not learn how to protect themselves. By talking
only about heterosexual sex and relationships, GLBT youth may
also be taught to think that their relationships don't matter
and aren't considered "normal."
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Youth told us that youth with disabilities are
often left out of HIV/AIDS education. Part of this has to do
with the idea that people with disabilities do not have sex.
This is not true. People with cognitive, mental, and physical
disabilities have intimate relationships and they need to know
how to protect themselves during sex.
Youth also thought that not enough is taught about needle
use and HIV/AIDS. In schools, it seems like HIV/AIDS is mostly
talked about in relation to sex. People who use needles are
often described as "junkies" (illegal injection
drug users, who use drugs like heroin or cocaine). However,
some youth living with diabetes need to inject insulin to
stay healthy. Also, some youth might inject doctor-prescribed
steroids for medical conditions or inject steroids illegally.
Youth who are injecting any kind of drug need to know how
to use needles safely.
Some youth found the following website on "harm reduction"
helpful:
http://www.mylifeboat.com
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| 3. HIV/AIDS: Not Me, Not
My Community, Not My Country |
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| All the youth who talked with us expressed a concern
about the stereotypes that exist for people living with HIV/AIDS.
Youth said that people in society seem to blame HIV/AIDS on
groups to which they do not belong. For instance, youth said
that they had heard family, friends, and the media make statements
and assumptions like the ones below: |
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HIV/AIDS is only in Africa.
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HIV/AIDS only happens in Aboriginal communities.
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HIV/AIDS is a gay disease.
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HIV/AIDS is a white person's problem.
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Only junkies and prostitutes get HIV/AIDS.
N
Young people don't get HIV/AIDS.
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| Youth told us that HIV/AIDS seems to be treated differently
than other illnesses, such as cancer or diabetes. There
is a stigma attached to the people who are infected with
HIV. Because of this stigma, people are often blamed for
being infected with HIV and made to feel ashamed for having
HIV/AIDS. This stigma may prevent people from talking
about their illness and from getting support from family,
friends, and services. This stigma may also stop people
and communities from offering support. Stigma is not only
attached to HIV/AIDS. People who are part of a group that
is discriminated against (for example, women, youth, non-white,
poor, GLBT, etc.) are often blamed or made to feel ashamed
for being who they are. People living with HIV/AIDS who
are female, poor, non-white, etc., may experience a "double-stigma." |
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| International organizations, such as the United Nations,
agree that stigma is harmful. They have found that people
who experience stigma(s) have a higher risk of becoming
infected with HIV. For example, if you live in poverty
you are less likely to be able to afford HIV/AIDS treatment/medication,
or if you are a youth you may not feel comfortable going
to a programme for adults. |
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| Youth wanted to emphasize that HIV/AIDS can affect anyone,
anywhere. Because we all could be infected or affected
by HIV/AIDS, we need to think about how we can help prevent
HIV/AIDS and support people living with HIV/AIDS. |
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| Youth had some ideas about what they would like to see
and how they could get involved in HIV/AIDS strategies.
Here are some of the tools they suggested.
Youth would like to see MORE…
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Sex-positive education in schools
that is not only based on "no sex,"
but also talks about how to have "safer
sex." Although youth understand that
abstinence is an option, they want to hear
about more options. Let's face it, many youth
have sex and need to know how to protect themselves
and their partners. |
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Information given to them about
how youth and their communities around the
world are affected by HIV/AIDS. They think
that this would help youth to see that HIV/AIDS
is not only a problem in Africa; it is a serious
issue around the world. |
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Youth teaching youth about HIV/AIDS.
Some youth call this "peer-to-peer education."
This kind of education could involve youth
who are infected or affected by HIV/AIDS sharing
their own experiences and stories. These stories
and experiences are often referred to as "testimonials." |
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Train-the-trainer programmes and opportunities
for people who work with youth. These programmes
provide the people responsible for educating youth
about HIV/AIDS (teachers, community workers, and
other people with leadership roles in their communities)
with up-to-date information and creative ways to
share this information. |
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Support for parents and caregivers
to learn how to communicate better about HIV/AIDS
with their children. Information needs to be more
accessible to parents with questions and concerns
about HIV/AIDS. Programmes should not only be located
in downtown cores of cities, but in suburbs and
smaller communities as well. |
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Diversity of experiences and lifestyles
included in HIV/AIDS education. In order for HIV/AIDS
education to be meaningful and important, youth
would like to see their own lives and choices reflected
in HIV/AIDS education. For instance, sex education
must include GLBT and heterosexual issues. |
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Creative and interactive ways of learning
about HIV/AIDS. Many youth are tired of being "talked
at" by educators who may not be comfortable
or open about sexuality and HIV/AIDS. Youth had
heard about and were interested in seeing theatre,
radio, and discussions dealing with the topic of
HIV/AIDS. |
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Community services for
youth, designed with the help of youth.
Some youth may not feel comfortable
getting involved with programmes designed
by adults. Many youth are looking for
more "youth-friendly" places
where they can get information about
HIV/AIDS, HIV and STI testing, support,
and counselling. There are some great
"youth-friendly" programmes
already out there, but more are needed
especially in smaller communities |
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Government encouragement, support,
and funding for all of the good work that individuals,
groups, and organizations are presently struggling
to create and sustain |
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Some examples of
the good work that is happening and that youth would
like to see more of include: |
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éSpeakers
Bureaus and Peer-for-Peer Education: Some
community and non-profit agencies organize
individuals to give presentations on HIV/AIDS.
These speakers can be invited to present at
schools, prisons, community centres, police
stations, religious institutions, and in smaller
communities. This idea of arranging speakers
is called a "speakers bureau." Youth
interested in sharing their stories with other
youth can also become involved with a speakers
bureau. This type of information sharing (youth
speaking with other youth) is known as peer-for-peer
education. This can be an opportunity for
youth who are infected and affected to share
their stories and experiences with other youth.
This presents an opportunity for youth to
meet with people LIVING with HIV/AIDS. |
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éTheatre:
Community and school-based theatre groups
that create and perform plays and skits about
real life issues. Plays about HIV/AIDS often
express situations that youth can identify
with and present different ways of handling
these experiences. Discussion and question
periods often follow these kinds of performances.
Some of these productions are created by youth
and involve youth actors. All the youth we
spoke with agreed that theatre is a great
way to learn.
Planned Parenthood Ottawa
http://www.planparenthoodottawa.on.ca/theatre.html
YMCA AIDS Control and Rehabilitation Programme
http://www.ymca.int/Publications/YMCAWorld/June2002/2_2000Kenya.htm
éMass
Media: Radio, music, and the internet
are all ways that HIV/AIDS information can
be delivered to youth. In Africa, radio
programmes have been very successful in
spreading information about HIV/AIDS to
youth. This strategy is becoming more popular
in Canada on independent and campus radio
stations. Music concerts and musicians have
been active in promoting awareness about
HIV/AIDS to youth through lyrics and benefit
concerts. There are a number of websites
dedicated to sharing information that youth
might find important; however, make sure
the websites you look up are up-to-date
in their HIV/AIDS information. Some websites
have message boards for youth to post questions
and share experiences.
MTV in association with UNAIDS, the Kaiser
Foundation, and the World Bank
http://www.staying-alive.org
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| éReligious/Spiritual
Communities: Because of their influential
roles in people's lives, some youth
feel that it is important for churches,
mosques, temples, and spiritual organizations
to provide space for the discussion
of HIV/AIDS issues. Some religious and
spiritual communities are making HIV/AIDS
education a priority. For example, some
churches in sub-Saharan Africa are talking
openly about HIV/AIDS and working with
their communities around prevention
and support to people living with HIV/AIDS.
Catholics For A Free Choice
http://www.condoms4life.org
AIDS National Interfaith Network
http://www.thebody.com/anin/aninpage.html
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éUnited
Nations and International Organizations:
The United Nations and other international
organizations have a commitment to preventing
the spread of HIV/AIDS and caring for people
infected and affected by HIV/AIDS. There are
too many projects and programmes to list,
but here are some websites for more details:
UNAIDS
http://www.unaids.org
UNAIDS - List of international organizations
http://www.unaids.org/links/activist.asp
UNICEF
http://www.unicef.org/programme/hiv/mainmenu.htm
The Canadian International Development
Agency (CIDA)
http://www.acdi-cida.gc.ca/aids.htm
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éInternational
Solidarity: There was an expressed interest
by youth to connect with other youth around
the world. Youth thought that learning from
each other, sharing experiences, and supporting
each other would be a meaningful way to better
understand the global HIV/AIDS crisis. A global
youth understanding of HIV/AIDS would have
the potential to lead to youth and their communities
sharing effective strategies and ideas for
action. |
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This is what youth
wanted us to know. We would like to leave
you with these final thoughts and ideas. We
know that you will have your own to add.
For Youth…
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Find out as much as you
can about HIV/AIDS. |
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Keep asking questions. |
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Find a teacher who you
trust and tell her/him what you want
to be learning about HIV/AIDS in school.
If you do not think this person is listening,
tell someone else. Keep talking until
someone listens to you. You can also
try contacting an AIDS Service Organization
(ASO) and ask them to approach your
teacher. Do not get discouraged! |
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Increase your understanding
of communities and cultures around the
world. |
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Volunteer in your community
with agencies and organizations that
promote HIV/AIDS awareness, prevention,
and support. |
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If you do not like what
is out there, find out how to start
something new. |
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Be critical about what
you hear from your friends, your family,
your teachers, and the media. Find out
where they got their information. |
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Feel good
about who you are. |
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Youth are
experts on youth issues.
Trust yourself. |
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| For Parents… |
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Find out as much as you
can about HIV/AIDS. |
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You and your children
can learn a lot from each other. |
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Be available to talk to
your children about important issues
in their lives even if it makes you
feel uncomfortable. If you feel that
you can't, find someone who can talk
to your children. |
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Staying silent about sexuality
and HIV/AIDS will not protect your children |
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| For Service Providers… |
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Keep up the good work! |
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Be sure to involve youth
in all decisions about service planning
and delivery that affect youth. |
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Invite and encourage youth
to sit on your boards and committees |
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| For Federal and Provincial
Governments… |
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Make youth
a funding priority. |
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Continue to
hold HIV/AIDS as a funding
priority. |
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Include youth
in medical and social research
on HIV/AIDS. |
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| As social workers, we
are concerned about the impact of HIV/AIDS
on our communities and are dedicated
to supporting and caring for people
infected and affected by HIV. The Canadian
Association of Social Workers, the International
Federation of Social Workers, and the
International Association of Schools
of Social Work, with the help of many
people from all over the world, have
created a "manifesto" calling
social workers and social work educators
to take action on HIV/AIDS.
To read the entire manifesto, see:
http://www.ifsw.org/Publications/4.13e.pub.html
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| Abstract
The purpose of this study was
to develop a report, for an
audience of youth, which examines
the impact of HIV/AIDS in communities.
A tool-kit for local action
was assembled out of data obtained
from discussion groups, individual
interviews with key informants,
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