Profound Losses and Small Victories – HIV In North America

aids-ribbon1For most of those in North America, the warnings about safe sex and protection against HIV are almost commonplace. It’s hard to believe that there was a time not so long ago that it was considered ‘the gay plague’, or even ‘the gay cancer’.  Even in 1984, most North Americans had not heard of it, and those who had were of two distinct camps: those who had been infected by it, and those who joked about it.

Prior to 1984, when Robert Gallo discovered that HIV was the cause of AIDS, it was considered to be a strictly gay disease and was even known for a time as GRID, or “Gay Related Immune Deficiency”. In 1981, Dr. Curran of the Center for Disease Control stated that, “no cases have been reported to date outside the homosexual community or in women.”  It has been asserted that homophobia most likely played a large part in slow response to the disease and given the nation’s attitude to the disease at the time, this is most likely true.  Next to be most greatly effected by the disease were IV drug users, and Haitians, and again, little to no response was taken by the medical community.  It was not until medical workers began to see the disease in heterosexuals and persons who were not drug users that they began to sit up and pay attention.

Even the United States Government was not above making jokes about the disease.  The following is an excerpt from a White House press briefing by Larry Speakes, President Reagan’s Press Secretary at the time.

October 15, 1982
The Briefing Room
12:45pm EDT
Q: Larry, does the President have any reaction to the announcement [by] the Center for Disease Control in Atlanta, that AIDS is now an epidemic and have over 600 cases?
Q: Over a third of them have died. It’s known as “gay plague.” (Laughter.) No, it is. I mean it’s a pretty serious thing that one in every three people that get this have died. And I wondered if the President is aware of it?
MR. SPEAKES: I don’t have it. Do you? (Laughter.)
Q: No, I don’t.
MR. SPEAKES: You didn’t answer my question.
Q: Well, I just wondered, does the President?
MR. SPEAKES: How do you know? (Laughter.)
Q: In other words, the White House looks on this as a great joke?

It would seem that at that time there was a lack of information and respect at all levels of society.  Because it was viewed by most in the public as a disease that would most often effect minorities and persons whose lifestyles were perceived as ‘deviant’, very little effort was made to stop the spread of the disease or to educate the public on the dangers of the disease.  The religious right was the most vocal group in the media, preaching the message that this is God’s punishment to homosexuals.  Jerry Falwell said, “AIDS is not just God’s punishment for homosexuals; it is God’s punishment for the society that tolerates homosexuals.” Even now, web-sites such as `’ preach that, “.sodomites are wicked and sinners before the Lord.are worthy of death for their vile, depraved, unnatural sex practices.”

Intolerance for those who were infected was rampant and a school in the United States went so far as to ban Ryan White, a 13 year old hemophiliac who had contracted HIV from a blood transfusion, from attending classes.

There was so little known about the disease that approximately 2000 Canadians became infected with HIV before the Red Cross began screening blood for the HIV Virus in 1985.  Many of those who received the tainted blood and contracted HIV developed AIDS and died.  The federal government finally announced it would pay out $150 Million to those who received the tainted blood products in1989, but the damage had already been done.

And then in 1985 Rock Hudson died of AIDS.  Hudson was the first celebrity to die of the disease and the press jumped all over the story.  It seemed that every newspaper and periodical in North America carried the story, most centering on the secret life of Rock Hudson and the fact that he was gay.  It became less a story of a man who had contracted a disease than a story about a man who had hid his lifestyle from his fans, and he was being made to pay for it.  In the end, not much more was made known to the general public about HIV.

It was not until Earvin “Magic” Johnson, a world famous basketball player, made public his infection with HIV that the media and our society began to take this disease seriously. His `outing’ pushed the issue of AIDS to the front of public conscience, thereby forcing the government to act.  Here, finally, was a successful, famous, and, by all accounts, straight male, who had contracted HIV.  While female to male transmission of HIV is the least common of all transmissions as the virus is transmitted through a fluid transfer, it is not outside of the realm of possibility and many cases have been documented.

“It’s so much different now because we can hold a conversation about it anywhere now”, Johnson told Reuters at a fundraiser for AIDS related causes, and in many ways, his exposing himself as having HIV, the virus that causes AIDS, has made many more people willing to talk about it.  Heterosexuals suddenly became aware that absolutely everyone in our society who places themselves in a situation where a transfer of bodily fluids can take place are susceptible to infection.

Pat Christen, Executive Director of the San Fransisco AIDS Foundation told the Associated Press in 1996 that there was a dramatic jump in calls after Magic’s announcement, to the foundation’s AIDS hotline, which offers information on HIV.  It was suddenly a disease that could effect anyone, anywhere, and people began to sit up and listen.  It was clear that while many may discriminate, AIDS would not.

Darrin Hagen is a writer, actor, and Drag Artiste, and was awarded a prestigious ‘Edmontonian of the Century’ Award for his work as both an entertainer and a gender activist/educator.  He is also the author of a book that book that deals, in part, with the staggering price the Queer community paid for society’s indifference.  Like many, Darrin remembers the first time he heard about AIDS.  “It was on CNN…it was a brand new station, and it was always on in the club [that I worked at] while we cleaned. It was referred to as the Gay Cancer. I was 18 or 19 and had just come out into the gay community. But it still seemed very far away…in big American cities.”

But it was not all that far away.  Soon after many in Canada began to hear about the disease, people in the gay community especially began to become infected by the disease.  Sam, Emperor VIII of Edmonton (a title given to members of Edmonton’s gay community as a token of respect for involvement in that community) was the first of Hagen’s friends to fall victim to AIDS.  “I remember the last conversation I had with him,” Hagen said in an emotional interview.  “His caregiver phoned me at the club and said `You said you wanted to hear his voice one more time…well, that time is now.’ I didn’t really know him as well as some, but had always admired his spirit and sense of fun. He was very encouraging about my first steps as a drag queen, and it was the moment I realized that this disease wasn’t just going to take the weak; Sam was 6ft-4inches tall; muscular; a physically stunning man.”

Prominent members of the gay community began a campaign to educate about the dangers of contracting the disease, but then, as now, many did not listen.

In 1985, the first Canadian Conference on AIDS was held in Montreal and was attended by such prominent Canadians as Michael Phair, now an Edmonton City Councilman.  From this meeting, and subsequent meetings thereafter, the Canadian AIDS Society was formed.  The society was formed with the mission of education, political lobby and advocacy.  While the society was formed in the 80’s, it was still not until well into the 1990’s that the message began to get out to the general public that this was a very serious threat to everyone.

“The biggest crime is that the powers that be looked the other way for 10 years”, says Hagen.  By 1995, according to, 35,996 Canadians had contracted the HIV virus of which 3,320 were women.

But 10 years after that, the numbers have become more even in Canada.  By the same source, the year 2004 has 1,822 men contracting HIV and 663 women.  While high-risk groups such as sex-workers and IV drug users still remain most vulnerable, the numbers have evened out to an extent that shows that the disease is `an equal opportunity’ affliction.

Still, there is no simple formula to calculate risk in any group, regardless of age, race, sexual identity, or religion.

Speaking recently with Robert Smith of HIV Edmonton, he said that, “Vulnerability is subjective to some degree. In the Edmonton region for example, IDU (intraveneous drug users) and aboriginal heterosexual women are considered the most vulnerable, while in Calgary, gay/bi/MSM (Men who have Sex with Men, a term meant to refer to ‘closeted’ homosexuals) lead the `pack’. Generally, in larger urban areas like Montreal, Toronto and Vancouver, gay/bi/MSM still cause great concern. (It is estimated that up to15% of all gay/bi/MSM in Montreal are HIV positive and most don’t know it).  The numbers tell us that there is an increasing number of youth being infected across the board, yet we are still seeing 30-49 year olds leading the infection rates.”

While most persons in today’s society have seemingly adequate information about HIV/AIDS and how it effects them in their communities, many are still of the attitude that it cannot happen to them.  There is a brazen defiance in the attitudes of many people who put themselves in danger, knowing full well the risk, but not believing that the consequences could possibly apply to them.  Given that the ages of those who are leading the infection rates are in the 30 – 49 range, it is not unreasonable to think that most, if not all of these people, would have information on HIV/AIDS and safe sex strategies, or other harm reduction approaches.

Smith says that, “There is a good deal of fatigue with the message and the overall prevention strategies for HIV; not unlike the Gay/Bi/MSM population who do not want to deal with having to wear a condom everytime and the perception that they will never get to experience a full sexual experience.”

There are those who have paid the ultimate price for society’s indifference to the disease, but there are still those who have been left behind and deal with the loss of their friends and family.

Darrin Hagen spoke to me about how the disease has effected his relationships with his friends.

“The huge gap in my life from the amount of friends I lost in the 90’s is still hard to fathom. I cherish the few friends I have now. And as for the ones that are positive (and there are several), well, I would go to the ends of the earth to spend time with them, help them, inspire them while I still have that opportunity. Because now I know how valuable that time is.”

There are tens of thousands of people in Canada mourning the loss of their loved ones and, by the same token, celebrating their lives.  One of the ways that has been offered to help people deal with loss is the Names Project.  The Names Project started in 1987 in San Fransisco.  It was a “collection of cloth panels designed as memorials to those who had died of AIDS.”  The pieces, when sewn together became known as The Quilt.  In 1989 Canadian cities began to host displays of the Quilt and those panels, along with hundreds of new ones are displayed with regularity in both large and small cities and towns across Canada.

The Quilt is actually a number of quilts with eight panels sewn together into 12 foot sections that create a powerful display – a reminder of those who have died from the disease and because of this society’s unwillingness to face up to the realities of the disease in its early stages.  Each of the panels is created by someone who has lost a friend or family member to AIDS and contain the memories of that person, represented by the simple, or even elaborate designs on the panels.  And more than just an outlet for this individuals, it is a reminder to all of us of the ultimate price paid by thousands.  Displays of the Quilt have also raised more than $3M US for direct services for people with AIDS.

There are many people working towards making a difference in the struggle against HIV/AIDS.  For example, in Vancouver a group of volunteers are helping to extend that time for persons living with HIV and their friends and family.  A Loving Spoonful is a charity that donates meals to HIV positive persons who could not otherwise afford to eat properly.  For some, the meals they receive from A Loving Spoonful are the only meals they ever eat.  According to Karen Opas, Director of Volunteer Services for A Loving Spoonful, “About 25% of our clients die each year so we still see it as a fatal disease, although people are able to live much longer [than they used to].”  A Loving Spoonful also provides formula and baby food to HIV positive mothers to help stop the spread of the disease through breast milk.

Across Canada, hundreds of charities are working at educating persons about AIDS, advocating for persons who are HIV positive, and offering treatment for persons who have HIV and AIDS.  But is it enough?

Robert Smith talked about the lack of resources that AIDS related societies across Canada are effected by in terms of providing more education.

“HIV/AIDS organizations generally (across Canada) do not have adequate financial or human resources to do the job.”

One of the most recent strategies employed by HIV Edmonton, in an effort to circumvent these problems, is getting other groups to do more for the educational aspect of the struggle.

“We attempt to have community groups working with specific populations to become trained HIV educators in their communities. We go into the teaching institutions (Faculties of Education, Nursing, Medicine, Social Work and Mental Health) and give them the population health version of HIV education,
stressing that HIV does not exist in isolation, rather is a part of a larger social-economic problem affecting diverse communities. ”

When asked what further resources should be given to educators, Smith said, “Money, money, money and the people that can be employed with money.”

In terms of providing care to those who are living with HIV, it is not so much more facilities or programs that are needed, but in Smith’s words, “The resources would be adequate if we could only influence the mindset of service providers who believe that diseases such as HIV/AIDS are lifestyle diseases and therefore do not fit under the umbrella of care normally implemented in general service delivery.”  An indication that the prejudices that existed in the beginnings of this struggle still exist today.

So, while great strides are being made in the treatment of persons living with HIV and much is being done to educate the public, there are still many shortcomings.  As Hagen said, “As long as there is Homophobia, there are still some that will feel that this is a gay disease, that it will never happen them. And with so many religious zealots and idiot politicians still using that myth in their rhetoric, the message is still inconsistent.”

While there are those who still feel that they are immune to the disease, we will still see a spread of this horrible malady, and until changes are made specifically in society’s attitude towards sexual identity, this will continue.

In Hagen’s words: “A virus causes AIDS, but homophobia caused the epidemic.”

(originally seen in the Fitzhugh)

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