We can't ignore the AIDS plight of the disabled

[Guest guest]

We can't ignore the AIDS plight of the disabled

ANDRE PICARD From Thursday's Globe and Mail

August 7, 2008 at 9:31 AM EDT

MEXICO CITY — The AIDS pandemic is not a single global epidemic.

Rather, it is a series of cascading, overlapping outbreaks of disease

sweeping over communities the way waves pound relentlessly at a shore.

Those hardest hit are the most vulnerable, the marginalized and the

disenfranchised: girls and women in countries where they have few

rights; men who have sex with men where that is taboo; sex workers;

intravenous drug users; members of minority groups such as aboriginals.

There is a realization of late that, if AIDS is ever going to be

stopped, those marginalized groups must be targeted for prevention and

treatment efforts, and they have been the focus of much discussion at

the 17th International AIDS Conference in Mexico City.

Yet, for all the good intentions of the world's scientists,

clinicians, community workers and activists, for all the grand

statements about human rights, the largest of the marginalized groups

has been callously ignored: People with disabilities.

About one in 10 people worldwide has a physical disability, about 650

million people. That many again, if not more, suffer from

developmental or psychiatric disabilities.

There is no reason to believe that their HIV-AIDS infection rate is

any less than other groups'. In fact, there is every reason to believe

it is much higher.

What few studies have been done - and there has been a lot more

research done on transgendered people with HIV-AIDS than on disabled

people with HIV-AIDS - suggests that the infection rate is

significantly higher, probably two to three times more than the

able-bodied and sound of mind. Why?

In most societies, the disabled are shunned, at best hidden away and

pitied. They are invariably the poorest of the poor: denied education

and employment opportunities; unlikely to access health care services;

frequent victims of physical and sexual violence; far more likely to

end up in jail, particularly if they have a psychiatric illness.

There can be no doubt that there is HIV-AIDS in the disabled community

and probably at alarming high rates.

Yet, in the AIDS world, the disabled are invisible and voiceless.

Hidden in plain sight. Or at least they were until now.

, under the rubric of his latest charitable venture,

AIDS-Free World, has taken on the cause of the disabled with HIV-AIDS,

lending his powerful voice to a group he says is " lamentably neglected. "

Winstone Zulu, a Zambian activist, has almost died a number of times

from the effects of tuberculosis and HIV-AIDS. He has tasted

discrimination in many ways.

But nothing, he says, is more humiliating and soul-destroying than

having a disability.

" If you're sitting in a wheelchair, it's as if you don't exist, " Mr.

Zulu says.

The comments were made at the International AIDS Conference, but Mr.

Zulu spoke from the audience because there was no ramp that allowed

him access to the podium.

At a conference where inclusion is taken seriously - there is

methadone for drug addicts, reserved spaces for people with HIV-AIDS

to rest and booths for groups representing every conceivable sexual

orientation - it is as if the physically disabled don't matter.

Mr. Zulu says the lack of access to the stage is symbolic of what is

going on in the field, and that's tragic because the " main driver of

the HIV-AIDS epidemic is denial. "

Myroslava Tataryn, the adviser on disability and AIDS for AIDS-Free

World, says that people with disabilities are being excluded from

HIV-AIDS initiatives principally because of some hoary myths.

" There are widespread ideas that, somehow, because we have a

disability, we don't fall in love, that we can't find partners and

there is no way that we would have sex, " she says. " Needless to say,

these are erroneous misperceptions. "

Ms. Tataryn, a young Canadian activist, has certainly not let her

disability hold her back, in her personal or professional life.

Yes, people with disabilities have sex. They have children. (Three in

every four people with disabilities in the developing world are

women.) They get blood transfusions. They may inject heroin, abuse

prescription drugs and drink alcohol to excess. (There is a strong

correlation between mental illness and substance abuse.) As such, they

are potentially at risk of contracting HIV-AIDS.

So where are the programs? When are we going to have targeted

prevention and treatment programs for the disabled?

People with disabilities and HIV-AIDS have, for the first quarter

century of the epidemic, been victims of double discrimination and

shameful neglect.

The way they have been treated is a horrific embodiment of the axiom:

There are none so blind as those who will not see.

It is time for the AIDS world to open its eyes.

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