We know how pervasive the most flagrant discrimination used to be when it came to people with mental disabilities and people with HIV. People with mental disabilities were once warehoused in institutions, apart from society, perhaps treated forever as children, without rights of their own. They were dubbed “retarded,” “insane,” even “mad,” rather than people with mental disabilities. People with HIV were shunned, feared, kicked out of school, fired from work, denied housing.
Then we had movements of people with disabilities and people with and at heightened risk of HIV. They won laws prohibiting discrimination and, internationally, the Convention on the Rights of Persons with Disabilities, adopted in 2006 and entering force in 2008. People with HIV/AIDS and their allies won protections against discrimination, here in the United States and globally. We saw at home and abroad huge campaigns against stigma and discrimination.
Surely we are in a better place now.
And surely, in many places, we are, even as the task of non-discrimination is far from complete. But a BBC Newshour program (no longer available) brought home to me earlier this month, for many people with mental disabilities and with HIV, it is almost as though these decades of efforts to wipe out stigma and discrimination never happened.
One story brought us to Pakistan. Earlier this year, the city of Ratodero in Pakistan experienced an HIV outbreak that has now led to more than 1,000 new cases of HIV, nearly 900 of them among children, caused by health providers reusing needles and syringes, an often under-appreciated risk in the health setting. The focus of the BBC story, however, was not this travesty and the importance of infection prevention and control, including to prevent the spread of HIV and other bloodborne infections, but rather discrimination against people with HIV in Pakistan.
And how discrimination does remain. Pakistan’s last People Living with HIV Stigma Index, while based on interviews from some years back now (2009-2010), points to the severity of stigma and discrimination in Pakistan. (The Stigma Index is a project of the Global Network of People Living with HIV, the International Community of Women Living with HIV/AIDS, and UNAIDS; the process in Pakistan was led by the Association of People Living with HIV & AIDS – Pakistan.) The executive summary is worth quoting at some length (p. 1), reading as one might expect from the early days of the epidemic:
Respondents were barred from attending social activities, places of worships and family gatherings and the most common reason for their exclusion was their HIV status. The respondents faced verbal assault, physical harassment and physical assault; all because of their HIV status. More alarming is the fact that members of the same household and family members are the people who physically assaulted the respondents.
About a quarter of people living with HIV were excluded from a social gathering (half frequently) (p. 17), primarily on account of their HIV status. More than half had been gossiped about, and 1/3 verbally harassed or threatened (p. 18), and about a quarter physically harassed or threatened (p. 19). A third had been denied employment due to their HIV status (p.24).
It seems little has changed. Many HIV-positive people, as one researcher observed earlier this year, “prefer to stay undiagnosed because of the stigma attached with HIV/AIDS. An incident that happened last week…a husband killed his wife after she [was] found [to be] HIV positive.” Stigma and discrimination against people with HIV in Pakistan is also connected to the groups of people who most often have HIV, marginalized populations like people who use injecting drugs, transgender people, men who have sex with men, and sex workers. We see not only the injustice of the discrimination against them, but also the public health foolishness, as “punitive actions by law enforcers” and fear of mistreatment leads members of these populations to avoid HIV testing. This contributes to HIV’s wider spread into the general population including, due to unsafe health care practices, children.
What is happening in Pakistan is a reminder of the work still to be done, that as we seek to end AIDS as a public health threat and as a killer, with new medicines and technologies, the very basics of eliminating stigma and discrimination – against both people living with HIV and other marginalized groups – must remain central to the agenda.
The other BBC Newshour story was based on a new investigation from Human Rights Watch (HRW) on the treatment – or more to the point, horrific mistreatment – of people with mental disabilities in Nigeria. It would have been shocking if it not something that we have seen again and again, such as exposed over the years by Disability Rights International. HRW’s investigation came in the context of a country with little health service support for people with mental health conditions, and widespread stigma and misperceptions about the cause of these illnesses, such as that they are caused by evil spirits.
Human Rights Watch reported on people sent to 28 government, religious, and traditional “rehabilitation centers,” without their consent or opportunity to leave or challenge their detention in all but one of these centers. In the government facilities, “many are shackled with iron chains, around one or both ankles, to heavy objects or to other detainees, in some cases for months or years. They cannot leave, are often confined in overcrowded, unhygienic conditions, and are sometimes forced to sleep, eat, and defecate within the same confined place. Many are physically and emotionally abused as well as forced to take treatments.” At least one state facility had no electricity.
Chaining was also “pervasive” in the traditional, Islamic, and Christian centers. The range of people chained across non-government and government facilities spanned from 10- to 86-years-old. In some of the Islamic facilities, people were whipped. In Christian centers, people were denied food for up to three days straight as a form of “treatment.” Forced treatment – of medication in government centers, and herbal and other non-medical treatments in other facilities – was common as well.
In response to the investigations, the Nigerian government did close several Islamic facilities – though did not acknowledge the abuses within its own facilities. Much, much remains to be done, however, including providing community-based support, banning chaining nationally, and investigating facilities in all states of Nigeria, and more.
In some places, the powerful vision of inclusivity and equality of the Convention on the Rights of Persons with Disabilities remains a mirage, like the promises of that most fundamental of human rights – non-discrimination – with respect to people living with HIV, and other marginalized groups, in Pakistan. We look towards new HIV treatments to make this now-chronic disease easier to manage, to ways to facilitate employment for people with disabilities, and better treatments. So we must, absolutely. But we need to also remember that the earliest types of efforts of the movements of people with HIV and people with disabilities – to win, in law and in practice, the most basic forms of non-discrimination and freedom from abuse – are still needed today.