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De-stigmatizing Disease
BY
MARYANN BONET
PUBLISHED FEBRUARY 12, 2007
http://www.columbiaspectator.com/node/23868
Growing up in the '90s, it's almost guaranteed that you
have been offered to wear a red AIDS ribbon, a yellow
Livestrong bracelet, or a pink breast cancer pin at some
point in your life. It could be said that some diseases
even have an era as they rise and fall in the awareness
of the public eye. We've seen it in the past with polio
and mumps and most recently with cancer and AIDS.
However, before the public can accept the severity of
these diseases and work for change, they must first
overcome the built-in stigmas attached to these
diseases. This can be difficult to do, especially if
choice was a factor in contracting or developing the
disease, which would imply that the person is partially
responsible for his or her situation. Ultimately, this
makes for a cause that is far less likely to generate
sympathy or funding from society.
This is not to say that once they are established,
stigmas are static. This is most clearly seen with
HIV/AIDS and the work of Elizabeth Glaser and her
Pediatric AIDS Foundation. The first noted outbreaks of
HIV/AIDS were found to be among homosexuals-and later
drug addicts-prejudicially characterizing AIDS as a
disease that only affected certain target groups whose
actions often did not sit well with 1980s American
society. In the eyes of some, it began to be seen as a
physical manifestation as well as a moral condemnation
of the actions of these vulnerable groups. There was
also an upsurge in fear, as people were unclear about
transmission and feared contracting what, at the time,
was viewed as a death sentence.
Yet we saw a breakthrough when Glaser came forward in
1988 with having contracted AIDS through blood
transfusions and unknowingly passing it on to her two
children, Ariel and Jake. Here was the arrival of the
new prototype for an individual living with AIDS: a
common American housewife who simply had bad luck with a
routine hospital procedure. To highlight the
heterosexual white upper-middle-class broadened the
impact of AIDS for middle America, allowing it to
realize that this disease was no longer isolated to the
supposed "others." To understand that it too could
affect them was a key step in the movement toward
gaining awareness and support for HIV/AIDS.
Presently, red ribbons are synonymous with the cause and
there are thousands of walks, dance marathons, and even
Live 8 concerts held in order to raise AIDS awareness.
The stigma attached to AIDS has come a long way from the
times of when Michael Jackson was still black and flux
capacitors could take you back to the future.
Well, here we are, back to the future, all the way to
Columbia's Dance Marathon, a fundraiser held for the
Elizabeth Glaser Pediatric AIDS Foundation just two
weeks ago. For 28 hours, in the background of Sexyback,
Miss American Pie, and YMCA, statistics were flashing on
the Roone Alredge Auditorium stage that indicated that
there are greater problems to come.
For instance, last year 1,653 students were admitted
into the Columbia University Class of 2010. By the time
these first-years have made it through a full day of
work, sleep, and classes, 1,800 children around the
world have been infected with HIV.
While it can be agreed that HIV/AIDS has been
mainstreamed into the consciousness of America, and
there has been greater acceptance of those living with
AIDS, the stigma is far from being eradicated. For
example, as the rate of infection continues to increase,
it becomes increasingly problematic if and when medical
issues become factors in the employment and admissions
decisions of corporate and educational entities.
As
unfortunate as it is, companies may not want to hire
what they see as a potential liability, or take the
economic loss when an individual takes a leave of
absence due to illness. Despite protection extended from
the Federal Vocational Rehabilitation Act, the potential
for harassment and discrimination would thus discourage
workers from revealing their status. This inherently
raises the question of privacy and the need to disclose
medical information. In general, the release of medical
records varies by situation and privacy content and the
purpose for which they are needed. Yet at what point
should people be compelled to reveal their medical
history? It would most likely need to be at the point
when symptoms do start to surface and when their medical
needs would be interfering with their employment duties.
However, this leaves them vulnerable to the
repercussions of this admission. The solution, to pull a
Tom Hanks-circa-Philadelphia, is the courtroom, where
justice is blind in areas that others are not. And until
the social consensus becomes as sophisticated as that of
the law, the court may be the only place where disease
stigma can be truly separated from the individual.
Despite having heightened awareness, which is a mark of
progress, it is in sectors like the workplace that it
becomes evident that we still have a long way to go in
terms of eliminating disease stigma when it comes to
AIDS.
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