HIV

Carceral Public Health: HIV Surveillance, Treatment & Criminalization by Alexander McClelland

On March 17, I provided a talk for the Centre for Gender & Sexual Health Equity, as part of their speakers series, below are my remarks, and here is a recording:

Today, I am going to talk through some work I’ve been doing for the past few years on the intersections of HIV criminalization, big data analytics, and public health surveillance, with the goal of sketching out a conception of the notion of carceral public health.

Public health has been changing in the age of big data, where digitized information such as the biomaterial of people (like the unique genetic sequences of the HIV in my body) can be shared widely, aggregated with others, and then use to predict and pre-empt theoretical risks.

This poses ethical questions for consent, the notion of the public, where such practices are taking place in a context of ongoing criminalization – of HIV, sex work, drug use, poverty, migration, and homophobic and racist fears imbedded into public health practice.

Furthermore, there has become an increased reliance on public health in concert with police enforcement responses in the context of COVID-19, as well, where police have been positioned as central actors in responding to public health. A recent report from the Universitê de Sherbrooke, from Veronique Fortin and colleagues outlined that in one year, more than 46 000 tickets were issued, across Quebec, for violations against public health laws.

In the context of HIV, there have been some very helpful legal reforms over the past few years (which I will touch on later), but as the scope of criminal law responses to HIV is narrowed, new forms of public health policy and practice may emerge, where public health officials, police, and the criminal justice system may act in concert in new ways to govern HIV prevention.

The blurring of the boundaries between the institutional domains of public health and criminal justice has the potential to produce new harms in the lives of people living with HIV (More here).

Having a robust understanding and terminology and frames of reference will help both academics and movements of people living with HIV, as we work to seek emancipation from social structures that inhibit our ability to be fully realized people with complex subjectivities, autonomy over our lives, and to live with dignity.

All the work I reference is collaborative, and so up front I must state how grateful I am for the work of my co-conspirators and comrades. And much of the work is ongoing, so this is a sketch of things still in progress, intended to be generative, not definitive.

Carceral is a term that has grown in prominence to highlight a criminal justice system logic of reliance on forms of incarceration and surveillance to organize society and social problems.

And indeed, public health has always been rooted in a carceral approach, and has relied on a continuum of practices from voluntary to coercive. Since its inception in the Dominion of Canada, was public health founded on white supremacist ideals of racial and moral purity – rooted in eugenics, aimed at containing impurities. Women with sexually transmitted infections – known to be sex workers - often Indigenous or non-White settlers were regularly incarcerated in the early 1900s as a means of disease control.

And for public health, the management of risk was constituted as new a kind of clinical judgement that diverged from earlier forms of medical reasoning, which used to attempt to distinguish the normal from the pathological— public health was focused only on risk management and prevention, as Lorna Weir has noted, “bodies at risk are neither sick nor healthy” (2006, p. 19).

Weir examining healthcare for pregnant women, underlined how the life of the baby was supported at the expense of the rights of the mother. When a subject failed to comply with the incitements for the security of health, then disciplinary confinement and correction could be activated. For such authoritarian forms of discipline to be invoked, security must be appealed to via life and death significance. Weir noted that such an instance could “include infectious disease outbreak and epidemic” where “liberal freedoms may [have been] suspended” (p. 15). Once voluntary measures stop working for governance more coercive forms of control emerge.

In Discipline and Punish, Michel Foucault outlines the idea of the “carceral archipelago” – referring both to a collection of islands, and that which is related to jails and prisons - as a metaphor for a continuum of practices, mechanisms, technologies, knowledge systems, and networks related the carceral. The widely used – perhaps overused book - also helped elaborate the dispersion of a carceral logic throughout social institutions – such as the school, hospital, and throughout society.

Others have taken this understanding further in the contemporary moment, such as prison abolitionist Ruth Wilson Gilmour, who has elaborated a conception of carceral geography - “which examines the complex interrelationships among landscape, natural resources, political economy, infrastructure and the policing, jailing, caging and controlling of populations.” (NYT, 2019).

Nicholas Carrier and Justin Piché (2015) outline that for prison and penal abolitionists, the move to address carceral abolitionism is one that acknowledges those detained beyond solely criminal justice grounds, where:

“The move from penal to carceral abolitionism is done by examining preventative detention used under the guise of the ‘war on terror’, the skyrocketing confinement of immigrants and refugees, as well as the rise of mass surveillance that is increasingly transforming the world into an open-air prison.” (2015)

Carceral feminism has been a term brought forth from responses to domestic violence with the transformative justice movement which, as outlined by Victoria Law, in Against Carceral Feminism: Relying on state violence to curb domestic violence only ends up harming the most marginalized women (2015):

“describes an approach that sees increased policing, prosecution, and imprisonment as the primary solution to violence against women”

Law notes that carceral feminists would likely reject the term and not view themselves this way. Critiques of carceral feminist, such as from Anna Terwiel, have (2019) suggested that the term results in an oversimplification, presenting:

“a binary choice between the criminal legal system and informal community justice practices. First, this binary allows critics to overlook rather than engage feminist disagreements about the state and sexual harm. Second, the narrow focus on alternative solutions to harm obscures the plural and contested nature of prison abolition…”  

I fear the same could take place with a conception of carceral public health, and so my goal is not to create an over-simplified binary of options to manage health issues, but to give us a language to articulate the problems that result from carceral logics in a health context.

So, in this effort, I’d like to promote a nuanced approach, proposed by critical public health scholar Eric Mykhalovskiy, and his colleagues (2017), as a critical social science with public health perspective. Such an approach seeks opportunities for research that engages with public health to transform public health practice, to lessen the harmful effects, while contributing to critical social science. And I’m a critical social scientist, more specifically a critical criminologist, so this is where I want things to go.

But such a generous approach to working with a “public health” perspective is hard for me. This approach is still something I am wrestling with, which I’ll elaborate.

I come to academia as an activist, as someone living with HIV, as someone who has been working to address the rights, dignity, and humanity of those of us living with the virus - in Canada there are over 65,000 people with HIV, and over 35 million of us around the world.      

I have had HIV my entire adult life. I found out my status in the late nineties when I was eighteen. It was about a year after the introduction of antiretroviral medications, that began to curb the massive death rate. But still, at the time, my doctor told me I wouldn’t live past thirty, and public health nurses told me to refrain from sex altogether or counselled me about my legal obligations to disclose to sex partners for fear of criminal prosecution.

Also, at the time, there was a news story all over the media about a man being criminally charged for allegedly not telling a sex partner that, he was HIV positive. The only popular representations of positive people, I had seen were either that we were dying, or we were criminals. In public health prevention campaigns, it was implied that we were to be feared, and that no one would want to end up like us.  

For some, life with HIV has been radically transformed to a state of near-normalcy. 

In Canada, due to our healthcare system, the only HIV-related bodily harm I’m likely to face is from the police, the criminal justice system, public health institutions, or from people’s hatred.

It has often seemed to me that the fear that has made HIV criminalized is the same fear underpinning HIV prevention efforts. To those of us living with the virus, fear is the real problem, not HIV. This fear, and lack of connection to the lived reality of people living with HIV, is something deeply rooted in some public health practices. Fear and paternalism.

Despite some recent progress, Canada is still a hot spot for HIV criminalization — where exposure to the virus, or the act of allegedly not disclosing one’s HIV-positive status to sex partners under certain circumstances, can be serious criminal offence, including aggravated sexual assault. Such offences can lead to the long periods of incarceration, sensationalistic media coverage, registration as a sex offender, and daily forms of stigma, discrimination, and violence.  

To date, in Canada there have been at least 206 individuals prosecuted, in 224 different criminal cases, between 1989 and 2020. Thanks to the work of Colin Hastings and others, we know that this is a highly racialized and gendered issue, with Black men, and Indigenous women are over-represented in cases.

The way laws are applied have been further shown to have a disproportionate impact on women living with HIV, putting them at heightened risk of gender-based violence due to power differentials in relationships. These cases often intersect with other criminalized phenomenon and groups of people, such as people who sell sex, as some women prosecuted in relation to HIV non-disclosure were also sex workers.

For my dissertation research, I went across Canada and spoke with and spent time with people who are on the sex offender registry, who had been incarcerated, or who were in the process of criminal trials, or had been threatened with charges in relation to HIV non-disclosure.

Speaking directly with people who have been criminally charged, puts into question dominant understandings, that people living with HIV are violent perpetrators who are actively trying to transmit to others. Rather, what comes to be institutionally understood as wrongdoing by police, courts, public health, and the media, is much less obviously so.

Because of criminalization, complex and nuanced situations, including people’s silence, fear, actual disclosure, or in some cases the inability to address their own HIV status, is forced by the criminal justice system into the dichotomous narrative of victim and perpetrator.

As a critical criminologist, I know that no group of people are inherently criminal, rather, criminalization is a shifting process that targets certain people at certain times for certain purposes. The shifting nature of the criminalization of HIV aligns with a constructivist understanding of “the law,” as elaborated by Nikolas Rose and Mariana Valverde (1998), not as a “unified phenomenon governed by certain principles,” but rather a social, political, economic discursive construction that can be applied to regulate aspects of society at specific moments in time.

Criminalization is not the natural outcome of so-called wrong doing. What this means is that the criminalization of HIV has been actively negotiated and put in place historically by a wide range social forces, actors, and institutions.

The dichotomous victim versus perpetrator logic of the criminal justice system, the process of criminalization transforms people into objects of risk and threat. And in many cases, public health institutions can reinforce the conception of risk through their actions, policies, and work.

I spoke with 16 people, in 27 interviews over 2 years, and not one of them intended to cause harm to anyone else. Because of how they were treated by the criminal justice system, public health authorities, and the media, through spending time in administrative segregation, losing access to privacy with their health information all over the media, being assaulted and harassed by guards, being forced into counselling which pathologized their normal sexual behaviours, as well as being denied medical care, and HIV treatments while incarcerated. To name a few.

All the people I spoke with had a very hard time psychologically coping with being understood as a violent rapist – as the sex they had was consensual (it was the twisted logic of the criminal law that classifies it as a non-consensual act via aggravated sexual assault). None of them met the criteria of being a sex offender but were still mandated to continue in sex offender programs, including undergoing phallometric testing while being forced to watch violent sexual assaults).  

Today, due to the various forms of violence they experienced because of being criminalized, many of the people I spoke with indicated that they live with Post-Traumatic Stress Disorder, which has a wide range of impacts on their daily lives. As a result of the experiences of criminalization, all 16 people had tried to commit suicide, or had long periods of suicidal ideation.

Speaking of binary options, public health has often been positioned as the rational and benevolent way out of criminalization, with the use of public health legislation being posited as a less severe instrument of the state than criminal laws.

An example of this is from the 1990s, with Dr. Richard Schabas, who was Ontario’s Chief Medical Officer of Health from 1987 to 1997 - and who called for HIV to be classified as a virulent disease, meaning under a court order of the medical officer of health, someone could be coercively detained in a hospital. This came about after a widely sensationalized case, of a man who had migrated from Africa, was facing multiple charges of HIV non-disclosure, a widespread racist panic resulted.

Schabas said there was a danger of HIV becoming “criminalized” and proposed the alternate public health option. But that option was to quarantine us.

Like criminalization, Schabas’s public health option, also focused on a form of coerced detention and incapacitation, but quarantine does not have the same evidentiary requirements for the criminal justice system, or oversight of a jury, it was just the will of the Medical Officer of Health to decide.

His proposal to put into force of law the quarantine of people living with HIV led to the largest AIDS ACTION NOW! protest in Canada to-date, with over 500 at Queen’s Park in Toronto calling for his resignation. Despite that, he stayed in his position for many years, although withdrawing his proposal.

Furthermore, when you investigate cases of HIV non-disclosure, that simple binary between criminal law and public health law is undone, as they are not neatly parsed out. Instead, there is a productive cross fertilization across the two institutions (productive in the sense of leading to increased harm for HIV-positive people). In fact, they can be co-constitutive of each other, can reinforce each other, and can be deeply connected.

Two of the people I interviewed had been charged only a few months after testing HIV-positive, with public health officials aiding the police in their cases – one who was under 18 years old, the other in their early 20s. Imagine, instead of seeing one’s role in public health as providing young people with the tools to navigate their sexualities and HIV disclosure in a society that deeply fears our bodies, to instead see your role as to the call the police.

In many cases, on top of criminal laws, public health laws had been mobilized to increase surveillance, and enforce treatment adherence, curfews, and mandate condom use, and forms of counselling.

For some gay men I interviewed, the public health counselling, however, promoted incorrect practices, such as using condoms for oral sex, a practice unnecessary when an individual is virally undetectable. These men had already learned about HIV and sexual health from local AIDS organizations, information they used with their partners. The mandated public health counselling was out of sync with what they learned from AIDS organizations and made them feel pathologized and bad. They felt the mandated public health counselling approach was driven by homophobic fears of gay sex. Because the counselling was mandated, they no longer trusted many public health workers and felt scared to talk to them truthfully about their sex lives. They now equated public health workers as just another part of the criminal justice system.

A criminal charge coupled with a public health order in a person’s past can increase the intensity of the criminal law’s application, understanding a person as an increased risk to the public.

For example, in 2011, when Ontario prosecuted the first-known person in the world with a first-degree murder charge due to HIV non-disclosure and exposure. The man - a immigrant from an African country, had a past of non-compliance with public health orders, and along with testimony from public health officials, that past was used by a forensic psychiatrist to deem him a “dangerous offender”, an official designation in Canadian law meaning he could be detained indefinitely after he has served his sentence as a pre-emptive measure to protect the public because he was perceived as such an intense risk.

The man claimed public health officials were racist and culturally insensitive towards him and had not provided him the tools to navigate his life as an HIV positive person.  

There are also countless instances of people living with HIV being coerced and surveilled by public health or being threatened with criminalization. One man I spoke with for my research took his girlfriend for public health counselling after he found out his status. She was HIV negative (and remained so), the public health nurses told her she could press charges, so she did after a fight with him a few months later. He was undetectable, but instead of supporting the couple to realize their collective health, public health became just an arm of the police.

In another instance, my friend was advised by her doctors to breastfeed her newborn baby, as she was undetectable (virally uninfectious), but because she was HIV-positive, public health authorities opened an investigation against her – despite her doctors’ expert advice. Instead of a time of beauty and celebration, that she, an HIV-positive woman was able to have a baby, that time was marked by fear, surveillance, and suspicion, that she could lose custody because of the public health investigation.

Another friend moved cities across the country. Within a few months in his new home and city, he received a letter from public health authorities which asked him to call them. When he did, they stated that they knew his HIV status and warned him about his legal duty to disclose to all sexual partners. Instead of working to connect him to care, he was left feeling threatened, surveilled, and as though he was a on the threshold of criminalization due to his interactions with public health.

That interaction was post-the 2012 supreme court decision, so the public health authorities were not even communicating law correctly. As we only need to disclose when not using a condom and having a suppressed viral load at the same time. Fear and ignorance prevail.  

In some provinces this rule has now changed, as prosecutorial guidelines have been introduced such as in Ontario and Quebec, where there will be no more charges if someone has a suppressed viral load. Which is a good thing, but at the same time, as a result, people who have achieved viral suppression come to be responsibilized subjects, complying with medical and treatment regimes, while those who are virally unsuppressed may be understood as risky, dangerous, and on the threshold of criminality – these of course will be often people with less access who are made to be marginalized (see Gary Kinsman for more on this).

Take for example, the case of a trans women in Edmonton in 2018, who police issued a public safety warning about (mis-gendering her), claiming she was high risk, because she was a sex worker, and that she had a high HIV viral load. The release made it to the media, with a mug shot, identifying her as the vilest of threats.

Also, consider, from British Columbia, in June 2019, ​​in what was noted as an “unprecedented” intervention when public health authorities collaborated with the Vancouver Police to conduct a widely publicized manhunt (not citing so as to not further amplify the harms of this case).  They released the photograph, name, and description of a man, who allegedly violated conditions under the provincial Public Health Act for not adhering to his HIV medication regime. He was feared to be virally unsuppressed, and therefore infectious.

Here we have two instances of public health relying on the police to manage our viral loads.

While in BC, the issuing a public health order was considered unprecedented, in Ontario, this is a common occurrence – although engaging with the police and media to public enforce an order is rare.

In the BC Guidelines for Medical Health Officers: Approach to people with HIV/AIDS who may pose a risk of harm to others, it discourages the calling of police, but also says:  

“the unlikely event that an MHO does consider that a referral to the police may be necessary in order to protect the public health, it is strongly recommended that the MHO discuss the matter with the Provincial Health Officer and legal counsel before proceeding to do so”

So, while there is some measured language, there is a codified role for the police in public health policy.

Then there is also the issue of out-of-care watch lists. I’d encourage you to investigate the research of Stephen Molldrem, who has examined this in the US context. There is a watch list program in BC, called Retain, through the Centre for Excellence, which seeks to flag people who are considered out-of-care for intensified engagement with public health authorities.

Keep in mind that some people want to stay off the public health record, and that being engaged by public health can be a risk for some people. For migrants, who may be here so-called unofficially, there could the fact that public health investigations could put people at risk for deportation.

Perhaps a side note, but then there also the case of people like Dr. Robert Remis who was a prominent epidemiologist responsible for all of Ontario’s provincial HIV epidemic surveillance, on contract through the Ministry of Health and Long-Term Care, and who at the same time, was also a paid expert witness for the Crown in many HIV non-disclosure trials in the province - where he provided testimony against people living with HIV, helping to put us in jail, while also having access and control over all the surveillance data in the province that was used by public health authorities. He was famously demonstrated against at the Canadian Association of AIDS Researchers Conference, with a banner calling him an AIDS profiteer – but it is important to note how individuals shape and guide institutions and how their attitudes drive our responses.

All these interactions, policies, and experiences outline to me, what Gary Kinsman has long stated: when talking about public health, we must always ask, who is the public? and who’s health?

As HIV-positive people, we are rarely engaged with as members of the public - by public health authorities or otherwise. Instead, we are understood as risks that need to be contained to protect the actual “public”.

So, you can see why I have a hard time viewing public health in a generous light. And why, a “critical social science with public health perspective” is a challenge, if public health sees us as a group to continually conceptualize as objects of risk and antagonize, how could I not?

So, this context brings me to the issue of molecular HIV surveillance. A practice that was innovated in BC and is being exported around the world. In this context, where Canada has been a global leader for criminalizing HIV non-disclosure, the country has also been a global leader in new innovations in prevention.

Epidemiologists, public health experts and infectious disease specialists have increasingly mobilized molecular-based surveillance techniques in seeking to identify, manage and control a range of disease outbreaks, from influenza to tuberculosis, syphilis, HIV, COVID-19. The practices of molecular surveillance vary by disease, but the general aim is to rapidly and accurately identify molecularly similar strains of the virus that can be connected into clusters (More here).

The idea of this approach is to identify clusters rapidly, in the “near real-time”, where transmissions are taking place, and to then intervene with “enhanced public health” approaches to connect people to treatment and care or testing and diagnostics (From: Poon, et. al).

To conduct molecular HIV surveillance, public health authorities mobilize the results of people’s HIV resistance tests. While technology now used for molecular HIV surveillance has been in place since the 1990s, it was previously used solely to monitor HIV resistance. The increased efficacy and cost-effectiveness of the technology has allowed for its widespread repurposing as a form of public health surveillance.

Local Public Health Departments want to identify clusters where HIV is being transmitted at a higher and faster rate than other places. Public Health officials want this information, so they can intervene and prevent transmissions.

The BC Centre for Excellence in HIV/AIDS has been deploying genotyping testing in the province using an automated system for identifying clusters. As of 2016, the database holds 32 000 “anonymized” HIV genotypes for close to 9000 British Columbia residents living with HIV.  Approximately 5-6 new genotypes are added to the system each day, upon which the system is triggered to conduct an automated reanalysis of the entire data pool. The system generates reports on the growth and characteristics of clusters that are then reported to public health officials. In 2014, the system reported a growing cluster of 11 new HIV cases within 3 months among a group of young gay men, including 8 cases with transmitted drug resistance.

As a result, public health officials intervened with “enhanced public health follow-up to ensure linkage to care and treatment initiation in the affected subpopulation” (Poon et al., 2016). 9 of the men were already connected to care so it is uncertain what real impact the intervention had beyond invasions of privacy and consent.

This new molecular surveillance approach means scientists and authorities take the individual genetic make-up of people’s HIV and compare them in a laboratory. This analysis process is done outside of a healthcare setting and without the knowledge of the people whose blood tests are being examined. The people whose clinical tests are examined for this new purpose are not asked for their consent and are mostly unaware that their blood is being used in this way.

And if they were informed, many people would disagree and refuse. In one study, in the US, when people living with HIV were asked if they would consent to participate in having their blood used for molecular analysis, 50% did not consent, indicating fears and concerns related to loss of privacy and confidentiality, as well as disinterest, lack of time, or unwillingness to share their HIV status with others.

When we – a group of concerned people living with HIV, activists, and scholars - responded to one harmful article in the Lancet in 2019, on a study done using this approach which framed trans women as vectors of transmission in LA, the researchers responded back to us that: “the public good of HIV surveillance justifies” the practice of violating consent. Therefore, it is in the public interest to violate the rights of people living with HIV – once again, we are not the public.  

The major finding of the study was that trans women were having sex with straight men, determined in a laboratory by epidemiologists – if you’ve met a straight or bi trans women, this finding is not a shocker, and puts into question what public benefit such research, when it is so disconnected from the actual lives of people it is purported to support.

Only last month, based on another harmful study in the Lancet in a similar vein, there was another letter from my trans colleagues demanding that molecular surveillance research must only be done with the input of trans people and have demonstrated benefit to those communities. This is similar with much of the findings of molecular surveillance, the findings are things we already know, but because it’s a fancy new toy there is a new way where people living with HIV can be objectified as a risk fetish object to examine from afar, so it’s being widely deployed.

Beyond violations of consent, there is also an issue of data sharing. The data from Molecular HIV surveillance only comes to life when it is connected to other demographic details.

Once your biomaterial is digitized, it can be widely shared and connected to other data sets.

One study conducted in Montreal, Canada, titled “Large cluster outbreaks sustain the HIV epidemic among gay men and other men who have sex with men in Quebec,” outlines how multiple data sources were used to conduct the research, including sequencing data from government public health surveillance, along with clinical and behavioural data from a local research cohort study on rapid HIV testing, noting they combined:

“phylogenetic analysis […] genetic sequence datasets from the provincial genotyping programme with clinical and behavioural data from the Montreal [...] rapid testing site cohorts to assess underlying factors implicated in HIV transmission among MSM.” (2013)

The study identified Haitian migrant men who have sex with men as a driving force in the province’s epidemic. Country of origin of transmission is something often sought in these studies, which was done in this one – that HIV is being brought in from racialized outsider. In a highly xenophobic province and country, rife with anti-Black racism, not once did the study acknowledge this context, or the issue of HIV criminalization.

There are also multiple databases around the world which collect genetic sequences for other research, researchers publicly share their data sets of sequences with can be viewed online. Data from one of these labs was used by the Crown as evidence of country of origin of transmission in a major HIV criminalization case in Canada, to highlight the person got HIV in African and infected white women here.

 And across Canada, due to the creeping privatization of healthcare, our blood is held by private companies, such as LifeLabs and Dynacare, who lack mechanisms for accountability and transparency.

And there is a lie that is told that these sequences are anonymized. But in fact, they are a unique genetic marker, and when mobilized by public health the aim is to identify people and intervene in their lives. They want to connect these sequences to other data to help identify “clusters” to transmission – these clusters are people. Thus, the rallying cry coming from the US – and the title of our editorial in 2020, the American Journal of Bioethics, we are people not clusters!

Molecular HIV surveillance is a highly contested practice on which there is much debate. In the US, networks of people living with HIV have called for a moratorium on the practice. And one major NIH funded study in the US was halted because the researchers decided it was unethical to use data collected without consent. Note that the BC Centre for Excellence, along with McGill University, University of Montreal, University of British Columbia, and others continue to expand such research using data collected without our knowledge or consent.

For more on the problems of molecular HIV surveillance, look to the HIV Justice Network’s report I co-authored, where we examined 92 pieces of scientific, community, and expert literature from academic peer-reviewed journals, and grey literature on the practice and came up with a series of recommendations to take seriously the concerns of people living with HIV on molecular HIV surveillance.

Also, as a side note, in terms of data sharing, consider that at the beginning of COVID-19, the province of Ontario, was one of the few jurisdictions in the world to share information on every person who tested positive for COVID-19 with police through a data portal. The data portal was shut down after a few months, with widespread use violations. But this opened a door for police access to health information that was unprecedented.  

Data is not benign. This is true of the data and biomaterial collected for Molecular HIV surveillance, and through other public health forms of surveillance. When placed in social contexts of ongoing institutional violence and racism, data can be weaponized to pathologize, target, regulate, and control, which includes the denial of our rights to consent and autonomy over the uses of own blood. In a context of criminalization, and ongoing pathologizing from public health, this is a concern for our safety and security.

And yes, I know that public health is not a monolith, and I also know that people working in public health see their work as benevolent and in the service of good. But that doesn’t mean that it is.

Along with being a critical social scientist, I also come to my work as an anarchist, with the ethos of working in, against, and beyond systems of oppression, to help address harms in the here and now, with a long-term vision for abolition of social structures that produce harm.

I hope that what I have sketched out here is something that can be heard by public health actors as an appeal for change.

So, what is carceral public health?

In terms of carcerality, with our biomaterial, linked to who we are, where we live, and what behaviours we engage in, in a context of ongoing criminalization and public health pathologizing, the notion of the “transforming the world into an open-air prison” becomes more and more real. With big data analytics, carcerality has new means and can expand its reach and modes of operating.

Such a public health, like the criminal justice system is organized to manage risks to a conceptual public. It is rooted in a racism and colonization. It is focused on prevention, and pre-emption of risk, at the expense of all else. This is prevention for the many through the coercion of, and control of, the few. This can be containment, incapacitation, mainly the use of criminal law means to achieve some perceived health ends.  

In a context of ongoing criminalization and policing, public health legislation should not, and cannot be understood as easily divorced from other components of this apparatus, or as a form of jurisprudence that can be applied in a silo. These approaches are connected, and to undo them we need to understand this complexity.

Finally, such a public health sees the health of people living with HIV as an instrument. For people living with HIV, such a system results in our lives being over-policed, but are under-protected. We live under heightened state of surveillance, but we are provided limited protections when we need help. We are deemed unworthy of care and support unless that support is instrumental in helping us prevent transmission of HIV to others.

So, to move beyond this system, with an eye to abolition, it is time to give a name to these practices, and to call for responses which are in the interest of our dignity and flourishing, which are driven by our communities, which are rooted in what Stephen Molldrem and Anthony KJ Smith, call, HIV data justice. And a move towards responses to collective health issues which are attuned to our rights as members of the public.

 

Thank you.

The Criminalization of HIV Non-Disclosure & Exposure: Impacts of Legal Violence on the Lives of People Living with HIV by Alexander McClelland

This presentation prepared for the 2017 Annual Conference for the Canadian Association of HIV/AIDS Research elaborates some initial findings from an ongoing qualitative research project examining the lived experiences of people who have been criminally charged, prosecuted or threatened with charges in relation to HIV non-disclosure and/or exposure in Canada, a country well known for being a global hot spot for this application of the law.

I am situated in the fields of critical socio-legal studies, surveillance studies and feminist ethnography. Aligned within the historical trajectory of critical social science research attention is paid to systems of oppression, and the resulting suffering of social actors, with the aim of making people contend with that suffering as an act supporting efforts toward forms of emancipation.

In very general terms, research on the issue of HIV criminalization has often used the HIV response and public health imperatives as the frame of analysis. Such as, elaborating that punitive laws cause a chilling effect in healthcare interactions or can deter HIV testing and therefore there is a negative public health impact. This research is very valuable and has been helpful for advocacy, but has been organized in ways which misses the perspectives of those who had faced criminalization first-hand and their suffering under punitive laws.

My project shifts the frame of analysis to the experiences of people with lived experience of punitive criminal and public health laws. I have been working to understand what the experience of being labeled a criminal and risk to public safety means for those who live it.

An outcome of this shift in orientation is that attention becomes focused toward the suffering of people labeled ‘criminal’, the criminal justice system itself, and the role of punishment in Canadian society.

Methodologically, my work is aligned with feminist forms of ethnographic sociological research. I approach my work using a qualitative inquiry that allows for a interactive process in the development of knowledge on people’s lives. 

Here the frame of analysis is the daily lives of people who are criminalized, and the role of the researcher is to centrally place people’s lived experiences first-hand in the research.

I engaged in a wide range of field work, working with multiple people, multiple times over the course of a year. I trust people with their own stories and to be experts on their lives.

With this approach I am resisting forms of research that turn people's lives into a "cases" to be studied (a common approach with research on legal and criminal phenomenon). I resist approaches where living subjects with agency are turned into an object of analysis on paper. Where a person's experiences are made into a knowledge commodity from which researchers build forms of exclusive expertise and capital. Or, which can force us to frame complex nuanced phenomenon into abstracted ways that are disconnected from the social world. My work tries to resist these forms of abstraction and reduction.

To elaborate my approach, I wanted to share these two pictures that one of the people in my study shared with me. This was his daily lived reality for over four years. This is what he saw and the space he inhabited. We often do not often see inside prisons. Inside this one, the man who gave these photos to me was witness to multiple violent beatings. He was routinely denied access to healthcare as a form of punishment by guards. This is where he was when he missed important life events in his family on the outside. Sharing these pictures is part of helping to shift the frame of how we see this issue towards the perspectives of people and their everyday lives.

Privacy is extremely important for criminological research. It is doubly important for people who have had their trust broken many times, who have repeatedly had their HIV status and charges outted by police and media, or they have had their privacy breached by their doctors and nurses (people they assumed protected their confidentiality).

This is the first project of it's kind focused on qualitatively interviewing solely people with lived experience of criminalization related to HIV in Canada, and as a result, I had to do a whole range of research on the privacy implications of my work. I then designed a detailed protocol around protection of privacy, which is very similar to that of an investigative journalist. One of the contributions of this project is the attention to processes around confidentiality.

The process I have undertaken explicitly aims to protect against the potential breach due to a subpoena– as the outcome could very negatively impact the participant’s lives.  There was a complex and rigorous ethics review process which I hinged on the protection of privacy of participants in the study.

Outside of methodological privacy concerns, many of the people in my study are highly socially marginalized and do not have access to privacy in their daily lives. Tim Horton’s should have been one of my sponsors – you’d be surprised how many of my interviews were done next to those fake Tim Horton’s fireplaces.

Also with privacy, when shifting the frame of analysis to the lives of people who have lived criminalization, some common things we do when talking about this issue can become questionable. For example, using the last name of people to refer to precedent setting or common cases- a normal practice that goes often unquestioned (something I have done regularly when talking about the 2012 Supreme Court decisions). But once you talk to the people whose names are reproduced over and over again it becomes apparent that this can be an unjust practice as it is repeatedly disclosing someone’s HIV status and criminal charge without their consent. The practice goes unquestioned as people with histories of criminalization are denied eligibility to have autonomy over their own life information is so many ways. And while this one might seem small, understanding these small practices, which can do injustice can help us to see things from the perspectives of those who have lived it.

To give people a sense of the project’s scope, I’ve included some insights. My study uses a purposive sample, meaning I aimed to target a specific group of people – those with experiences of being charged with in relation to HIV exposure and non-disclosure. We know of around 184 people with this experience in Canada. The available sample of people to interview is constrained as it is widely diverse, and is not easy to find, or are in one discreet location or sub-culture. Some of these people are not possible to interview as as they are incarcerated and Corrections Service Canada regulations about which prisoners can be eligible to participate in research projects, other people have been deported, and some have died or been killed.

I have not yet interviewed people who are incarcerated (some are accessible, others are not depending on treatment in institution). I have interviewed people with histories of incarceration.

I was in touch with twenty-four different people, but for a range of reasons, including incarceration they have not been eligible to connect with me due to bureaucratic barriers.  Due to how racialized this situation is, it is important to note that a majority of those not eligible people were black men charged and/or prosecuted in relation to heterosexual sex. Some were in the process of a case and it was decided by their lawyers that they should not participate. Although, being in a ongoing trial did not automatically exclude someone, as I did also speak to a number of people who were in the middle of various court proceedings.

I conducted twenty-seven interviews with fourteen people, interviews were around one-hour long.

My work also has a strong empirical grounding in archival research on case files, media stories and other historical documents.

Because this study is unique, some people have been interested in these types of enumerable data. So I am making them available in a limited fashion. But I need to caution that my research resists processes that reduce unique and complex life experiences into variables that allow people to generalize. This research project is not about producing generalizable findings that can be widely applied.

And, for a range of reasons, as I indicated in the previous slide, is it not possible to garner a sample of participants that is exactly representative of what we understand the demographics of these cases to be. This could be due to where people are, my own social position, bureaucratic barriers, people’s own stigma and fear, and the fact that due to forms of violence while incarcerated, or due to their natural life course, people have died.

But ultimately elaborating my research in this way in numbers helps provide one sliver of an insight, but may do a disservice, and misses a more complex and nuanced understanding how people’s lives and experiences will be further elaborated in subsequent research findings that I will develop.

To explore suffering I engage with the notion of legal violence. This is a concept that helps elaborate the relationship between law and violence, and the consequences faced by people labeled as criminals. Here we can understand violence not always as a direct physical blow from one person to another, but rather violence as the outcome of a system, or inaction and failure of a system. 

People can be subject to forms of legal violence when they are placed in a negative relation to the law. People living with HIV today in Canada often live in a negative relation to the law just due to the fact that they are HIV-positive. We can very easily be placed in a tenuous relationship with our legally regarded personhood. As are many marginalized people, this form of violence is a colonial violence, a racialized violence, homophobic and misogynistic violence. People who also are institutionally marked as criminals exist in a negative relation to the law, they can be people who are rendered civilly and socially dead under legal regimes. I draw on this notion of living in a negative relation to the law through the work of Colin Dayan.

Living in a negative relation to the law means that one is rendered less of a person with codified rights, less of a person who is in need of protection from the law, and is rather regarded as an object of risk, one that legally constituted persons are to be protected from– protected from through forms of control, coercion and incapacitation.

Removing someone’s autonomy, limiting their right to liberty, marking them a a risk to the safety of others, as people who are to be under heightened surveillance. These are forms of violence that comprise the unmaking of a person through law, and these forms of violence come to organize the lives of people who are criminalized in relation to HIV non-disclosure and exposure. These forms of legal violence then make possible a whole array of other forms of violence.

Two other big word concepts that are also important for this work are inter-institutionality and interlegality (think intersectionality, but with laws and institutions). These concepts became important as a way to explain the systems of oppression which organize people’s lives when threatened with charges, charged or prosecuted.  This complex array of institutions includes public health, criminal justice, healthcare etc. They may have different governing logics, jurisdictions and rationalities (sometimes complementary, or contradictory), which can have, in their integrated effects, outcomes that would not be possible through one of the legal systems, or institutions working alone.

These concepts help to explain how interconnected systems are and that this issue of HIV criminalization is not just a discreet criminal law issue or, or an issue that can be solved via public health laws. Explicating the complexity of systems of oppression helps to understand how to respond, and also challenges the assumption that public health institutions, policing, community-based organizations, and criminal law institutions act distinctly from one another, and that they operate using different forms of distinct knowledge.  Because it is much more complex and intertwined than that.

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The consequences of legal violence and all these laws and institutions working simultaneously is that people can be punished more harshly, and in diverse, far-reaching ways that extend beyond just their official sentence, if they are prosecuted. Penality is just another word referring to the punishment of people.

All people who are labeled criminal in Canada are subject and vulnerable to violence. But people who are labeled as criminal in relation to HIV non-disclosure and/or exposure face a environment of amplified punishment.

This amplification of punishment begins as soon as the charges are threatened or applied and does not relate to a guilty verdict.

Twelve of the people I spoke with were charged with aggravated sexual assault – which is one of the most serious charges in the criminal code.  Two of the people were threatened with charges by police, but charges were never laid. Seven of the people are now registered sex offenders. As a result of being on the registries they cannot get the jobs they had previous experience doing, which means their economic security is constantly threatened far after serving a sentence.

I have tried to explicate a typology to help analyze the punishment that people face.

Some forms of punishment are formal and sanctioned and can include forms of surveillance and regulation that are institutionally enacted into people. Punishment here is focused on reducing of capacities and risks. It is organized around forms of containment, regulation, and compromising personal autonomy security and safety. An example from this project would be people being housed in administrative segregation (which is 23.5 hours a day in a cell alone) often stated as an extension of protective custody and a way to protect the person from the violence of other incarcerated people.

Informal forms of punishment are interpersonal, causal and daily forms of stigma, discrimination, abuse and violence that are enabled after someone is institutionally marked as a criminal in relation to HIV specific crime. Building on the example of administrative segregation, an informal punishment would be corrections guards leaking information about a person’s HIV status and sexual assault charges to other prisoners, thus putting a that person in a context where they will be regularly and severely beaten due to having HIV and a rape charge. Beatings which ultimately then lead to that person formally being put into administrative segregation.

So you can see that these two forms of penality, formal and informal, rely on each other and are intertwined in different ways.

And it is important to note that police, prison guard and prisoner beatings were indicated numerous times by the people I spoke with.

This text message to me from one person involved in the project elaborates how penality extends into the everyday life of people and how it circumscribes the life chances of people – in the case of this man, the charges were ultimately dropped. But due to being in the media he is regularly denied housing and jobs due to having an easily Google-able history of being charged with aggravated sexual assault and having HIV. 

As a result of the ongoing stigma related to their cases, those who have served time, or had their charges stayed or dropped still state that the past case impacts their lives. People have been denied jobs and housing because when their names are Googled information about them being a rapist with HIV comes up. Their economic security continues to be threatened long after they have served their time, or charges were dropped.

While people are under heightened policing, surveillance and scrutiny, they are simultaneously under protected and under supported. People describe many instances of severe lack of knowledge on behalf of police officers, corrections officers, lawyers and judges related to HIV. Often out-dated, or blatant misinformation was communicated by people making decisions about people's lives.

This meant that those charged were placed in a position where they had to educate the people who were tasked with arresting and punishment them, or just be faced with decisions being made based on fear and ignorance. A few examples: A judge not allowing a witness in one case for fear that their HIV status would contaminate the courtroom, a corrections officer holding a man down on the ground with his boot saying he would never touch someone who had HIV for fear of infection, instances of officers wearing gloves and face masks, and instances of lawyers counseling people to plead guilty when the person had an undetectable viral load and no transmission occurred. In these instances, the plea was taken out of fear and for family.

As a result of their experiences, every person I spoke with told me they had tired to commit suicide, or had long periods of regular suicidal ideation. All of them also now have a complex and strained relationship with society. Many are very angry at society, a society, which took their personhood away and has treated them as less than human. All of this violence enacted towards them because of a crime that is entirely non-violent, and in which the notion of harm is an ideological one rooted in HIV stigma and AIDS-phobia. In many instances people indicated to me that they were working to take care of their health and others, which is associated with preventing transmission. But still they were harshly punished due to how the law is currently applied.

To close, I would like to reflect on the notion of bearing witness. I mobilize this concept linking it to a critical approach. Bearing witness to suffering is what I understand to be an ethical approach to research and action in a unjust world.

Bearing witness, as a notion, acknowledges my role as an active observer with ethical obligations. To take care in how I handle the complexity of the information I am collecting.

The people I have been working with engaged in the project as they wanted others to bear witness to what has happened to them as a form of healing and justice. 

This project is about revealing these forms of legal violence, ones that are simultaneously institutional and interpersonal. Violence that is often obscured through bureaucracy, or obscured because the people onto whom this violence is enacted have been deemed unworthy of living as safeguarded persons.

Through this work I hope we will be better positioned to deem those situation unacceptable, and to contribute towards critiques challenging the administration of punishment in our society. To bear witness so that we must contend with these experiences and call for action.

 

 

PosterVirus: Claiming Sexual Autonomy for People with HIV Through Collective Action by Alexander McClelland

Pleased to see the launch of the new book Mobilizing Metaphor Art, Culture, and Disability Activism in Canada edited by Dr. Christine Kelly & Dr. Michael Orsini. Jessica Whitbread and I have a chapter in the book looking at 4 years of our work on the PosterVirus activist/art affinity group of AIDS ACTION NOW! In the chapter, we engage with a series of the posters from over the years and discuss how those works have acted to stake claims forour sexual autonomy as people living with HIV - in a world organized around regulating and controlling our bodies.

The Movement to End HIV Criminalization by Alexander McClelland

HIV criminalization “describes the unjust application of the criminal law to people living with HIV based on their HIV status – either via HIV-specific criminal statutes, or by applying general criminal laws exclusively or disproportionately against people with HIV”. Human rights advocates and organizations have tracked hundreds of cases worldwide, identifying the relationship between systemic forms of discrimination and HIV criminalization.

This panel discussion explores the social justice implications of HIV criminalization. It will feature the world premiere of the 2016 documentary film, HIV Is Not A Crime. See the trailer here!

This event is primarily in English. The room is accessible via elevator. There are no steps to get into the building.

Featuring:

Edwin Bernard, Global Co-ordinator, HIV Justice Network

The Global Picture: Surveying the State of HIV Criminalisation:

Presentation Abstract
This presentation will introduce audience members to HIV criminalisation from a global perspective, and why it is problematic for public health as well as human rights. It will highlight countries that have HIV-specific criminal statutes, as well as jurisdictions, such as Canada, which, in spite of not having HIV-specific criminal laws on the books, have vigorously prosecuted people living with HIV.

Alexander McClelland, Concordia University

Criminal Charges for HIV Non-disclosure, Transmission and/or Exposure: Impacts on the Lives of People Living with HIV in Canada

Presentation Abstract
This presentation will elaborate some initial findings from an ongoing research project that is examining the lived experiences of people who have been criminally charged in Canada in relation to HIV non-disclosure, transmission and/or exposure. Canada is well-known as a country with high rates of criminalization towards people living with HIV. Through a series of qualitative interviews this project seeks to understand the material outcomes for HIV-positive people who live their lives in a negative relation to the law due to being institutionally marked as a ‘criminal’ and a ‘risk to public safety’ through the process of criminalizing HIV non-disclosure, transmission and/or exposure.

Laurel Sprague, Research Fellow in HIV, Gender, and Justice, HIV Justice Network

Your Sentence is Not My Freedom: Feminism, HIV Criminalization and Systems of Stigma

Presentation Abstract
HIV criminalisation takes different form in different legal contexts, yet always arises from social hierarchies, and related stigmatising attitudes, based on gender, sexual orientation, class, and other forms of marginalized minority status. Examining the Canadian Context, in which prosecutions for HIV non-disclosure have relied primarily on the use of sexual assault laws, provides important insights into the ways in which HIV-related stigma creates an interlocking web of discrimination for people living with and most vulnerable to HIV. This presentation explores ways in which gender is used both to justify HIV criminalisation and to prosecute people who are seen to violate gendered norms of behaviour, then discusses ways in which Canadian feminists have led the critical response to the use of sexual assault laws in HIV non-disclosure prosecutions.

Andrew Spieldenner, Hofstra University

The Cost of Acceptable Losses: Exploring Intersectionality, Meaningful Involvement of People with HIV, and HIV Criminalization

Presentation Abstract
Intersectionality is a vital part of engaging in social justice coalition work. In HIV criminalization efforts, intersectionality means understanding how place, position and power get enacted and acted on. I will explore how intersectionality functions in the lives of PLHIV, and in particular how the meaningful involvement of people with HIV requires a complex engagement with intersectionality. Organizing around HIV criminalization requires an intersectional understanding rooted in the notion that none of us are acceptable losses. I will utilize two case studies in the American context: California and Colorado.

Introduced by Liz Lacharpagne, COCQ-SIDA and Martin French, Concordia University

WhoreLock/Up 27 of 185 by Alexander McClelland

Public projection and spectacle collaboration between Mikiki & Alexander McClelland

****This is not a trigger warning, this is our lives: presentation contains graphic discussions of various forms of violence****

As a collaboration between artist Mikiki and doctoral student Alexander McClelland this work pieces together media reports and juridical documents so as to understand how people’s lives are discursively constructed into cases, cases where individual people with HIV are transformed and come only to be known as ‘risks’ in need of care, control, regulation, surveillance, and incapacitation. In such cases, legal documents and media reports construct histories, histories in the service of an institutional logic that this at odds with the lives of people living with HIV. Rather than engaging in the normative debates presenting ‘innocent’ subjects in contrast to the ‘guilty’ mark of institutions, this collaborative work aims to understand the materiality of being marked as a ‘criminal’ and a ‘risk’ to public safety, and how hypervisibility is a tool used by state and private sector institutions to govern and create a public panic around HIV.

As a growing phenomenon in Canada – one that is disproportionate in scope to other countries– the expansion of legal governance of HIV is part of a fast growing trend in Canada, where there have been upwards of 185 criminal law cases since 1989 related to exposure or non-disclosure of HIV. Cases are on the rise, with high rates of prosecution for aggravated sexual assault charges that with a mandatory registration as a sex offender and sentence of up to life in prison. In these cases people’s photographs are plastered across media outlets with sensationalized headlines condemning the person with HIV as a criminal, vector of disease and dangerous, reckless and irresponsible person.

Read more here!

Keynote at Sex and Stigma Matters conference by Alexander McClelland

In May of 2015, I gave a keynote presentation on my research to the annual Healthy Sexuality and Harm Reduction Conference for the Winnipeg Regional Health Authority.  Here is the abstract for the presentation:

Globally, Canada is considered a ‘hot-spot’ for criminalizing the non-disclosure and exposure of HIV. With over 155 prosecutions and more cases on the rise, Canada is known for imposing harsh and punitive penalties against people living with HIV who do not tell sex partners their HIV status, or potentially expose others to infection. A majority of those are charged with aggravated sexual assault, one of the most severe charges in the Criminal Code. Social scientists have documented that the law related to HIV non-disclosure and exposure has been applied asymmetrically, leading to a sense of uncertainty among people living with HIV. Criminal cases related to HIV non- disclosure in Canada are strongly patterned by gender, race, and sexual orientation. But how did we get here? Why is Canada so exceptional in how the criminal justice system has responded to HIV? If we look back throughout history, we can see that in the early days of the Canadian settler-colonial state those infected with diseases of “vice” such as syphilis and gonorrhea were subject to similar legal measures and labeled social outcasts worthy of incarceration. Through a historical examination of a number of cases from the past and present, this presentation will examine the Canadian context of criminalization of HIV and other STIs. We will examine the role of public health in supporting or impeding this increasing practice of criminalizing diseases that are sexually transmitted. We will discuss strategies to end stigma, discrimination and start to work towards the decriminalization of HIV exposure and non-disclosure and the decarceration of people living with HIV.

'Lock this whore up’: public health legislation & other ‘risks’ to public safety by Alexander McClelland

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Last month I presented at the Canadian Law and Society Association annual mid-winter meeting held in Montreal. For the presentation, I addressed what some perceive as an over-reliance on the criminal law to address the HIV non-disclosure in Canada. There have been calls from social scientists and activists to advance the use of public health legislation, regarded as a more ‘benevolent’ instrument of the state to manage people who have not told their HIV-positive status to sex partners. Using examples from two HIV non-disclosure cases in Ontario, I argued that public health legislation is one component of a diverse assemblage of technological formations of legal governance – comprised of public health law and criminal law, as well as civil law and other extra-legal practices – which have come to order the lives of certain classified people with HIV.

Examining the use of public health orders under Section 22 of the Ontario Health Promotion and Protection Act (HPPA), I discussed that these orders act as the first point of entry into a broader heterogeneous assemblage of legal actors, institutions, mechanisms and practices that act in concert to enable forms of surveillance and governance, constituting something altogether different than the stated benevolent intentions of public health. In the discussion I argued furthermore that public health legislation cannot be understood as easily divorced from this assemblage, or understood as a form of jurisprudence that can be applied in a silo. My analysis is grounded in a detailed examination of how public health orders are taken up in media reports, as evidence to inform court judgements, and in the context of psychiatric testimony by experts to classify ‘offenders’ as future risks to ‘public safety’. With a critical inquiry attuned to the social and historical constitution of the legal, I also discussed how these orders are underpinned by logic of risk mitigation, a logic aimed to protect the ‘public’ through governing the biologically and juridically marked viral underclass: the person with HIV who has come to be known as ‘unwilling’ or ‘unable’ to take the precautions to protect others from HIV transmission.