During the then-Conservative Government in 2012, the government made $165-million-dollar budget cuts to Aboriginal and Northern Affairs Canada (as it was then known). Some of these cuts led to decreased funding for health-related research programs, like the work at National Aboriginal Health Organization (“NAHO”).
The last fact sheet posted to NAHO’s site, which is scheduled to shut down in December 2017 indicates that Indigenous people “account for 16.4 per cent of AIDS cases in Canada and 7.5 per cent of HIV infections.” For Indigenous women, the picture is even more alarming: Indigenous women making up 47.3 per cent of HIV-positive test reports; meanwhile, non-Indigenous women making up 20.5 per cent of the same reports.
For the past 25 plus years, Kecia Larkin has been one of those Indigenous women living with HIV. And, the morning that I call Kecia Larkin, she is in British Columbia; she’s just making breakfast.
In April 2016, Kecia won an award for her work on educating others communities about the realities of Indigenous women living with HIV. But Kecia has always been an activist.
Kecia’s mother was deeply involved with the Red Power movement, American Indian Movement, and she remembers her mother wanting to put some roots down after attending protest after protest, all related to land and sovereignty.
“We were political,” she explains. “We never felt like it (Alberta) was home.” She describes her family as loving and attentive, but poor: The number of First Nations Children living in poverty is fifty percent.
Because of poverty, though, Kecia made the decision to go into state care. During that time, she was in and out of hotels because she says, “I didn’t want to go to foster homes.” And during times when she needed help, she would go into group homes but then return to the streets, “It was a choice made out of duress, because of poverty.”
When describing her early years in state care, it was in and out of hotels versus in and out of state care. Kecia calls the hotels, “Shooting galleries, a place for tricks, to stay safe, able to do drugs rather than do drugs alone.”
However, Kecia remembers being outside more than inside: Outside of state care.
When Kecia lived in state care, she says, “It was very embarrassing…shameful for me. My mother was not a neglectful parent. My mother was not abusing us or leaving us. The only reason I went into care was because my mother couldn’t afford to send me $100.”
Kecia says, “I didn’t have a place to go where I didn’t feel safe.”
The Ministry would have care workers who would try to help keep her safe. She says, “They would take me out and try to keep my mind from the excitement of Hastings.” Hastings is the main strip in Vancouver’s Downtown East Side (“DTES”).
While living in DTES, she used drugs, but was careful to avoid intravenous ones. “Needles scared me,” she explains. One night, an older man enticed her with gifts – an episode she now recognizes as “grooming.” Kecia says, “He knew I was in care and he bought me boots.” She states further, “He used to touch my breast” and she thought, “Okay this is what friends do, they help each other.”
Kecia didn’t tell anyone.
Eventually, one evening, he invited her to lie down with him in the same bed. Soon, he sexually assaulted her. Kecia remembers what he told her soon afterwards: No one is going to believe you.
He was right.
Kecia discloses to me, “I went and told and nobody believed me.” At times, Kecia also blamed herself, “I really blamed myself because I know about sexual abuse and I figured I should have known somehow…I felt really ashamed. I felt really unloved and unwanted.” At that moment, Kecia said her time in state care solidified those negative feelings. Kecia says, “I guess being care verified that for me…how unwanted I was.”
She admits there is still healing.
The current Liberal government has released its Terms of Reference (“TORs”) for the Public Inquiry into Missing and Murdered Indigenous women and girls (“the Inquiry”). There is much criticism on the TORs; however, often missing from these discussions is the erasure of the lived experiences of Indigenous women living with HIV/AIDs.
While the TORs give the Commissioners wide powers, like the power to make recommendations for “concrete and effective action that can be taken to remove systemic causes of violence and to increase the safety of Indigenous women and girls in Canada”, what we know is that social determinants of health already impact Indigenous women’s safety and well-being. The Canadian Aboriginal AIDS Network (“CAAN”) indicates that social determinants of health, like poverty, gender, violence, and especially racism and the “multigenerational effects of colonialism and the residential school” contribute to the incidences of HIV and AIDs in Canada.
Then, in the summer of 1987, another event flipped Kecia’s world upside down.
Five men that Kecia considered friends had gang raped her. She describes the men to me, “As a bit safer than some other guys.” She doesn’t remember much but from what she remembers, she drank some alcohol, but she doesn’t remember how much—a minor detail that is beside the point. Rape is still rape.
She describes the incident, “All I remember is just getting up and this face moving away from my face, above me, on top of me and I jolted.” Waking up, she realizes her pant leg and underwear was off. One of the men in the room told her what happened. When she left the hotel, she remembers being drunk, traumatized, and crying.
Recalling her earlier assault, and knowing no one would believe her, Kecia decided to not seek out help. “I just buried it,” she shares with me. But internally, it was destroying her, “I began to mentally deteriorate.”
About eight weeks later, she approached a friend whom she knew used intravenous drugs. “I want to try it (black tar heroin),” she told the friend. “I want to use a needle.” The effects of the drug were immediate. “I thought I died and went to heaven,” she describes the first time using intravenous drugs. “The drugs just killed the pain.”
But what does it take to heal from these experiences?
In describing her own healing, Kecia says, “I learned to just accept all of the experiences as long as they don’t happen again and that is okay. That’s never happened to me again.” Kecia defines these experiences as a learning experience.” Undoubtedly, these are hard lessons that nobody should have to learn. Still, she continues, “I think learning one of my big lessons in life is to learn forgiveness, when appropriate. I think that is something that I really tried to do for myself.”
In Alert Bay, Kecia’s community, the last potlatch, which an important cultural ceremony in her community, happened just over seventy-five years ago.
At one point, the Canadian government banned potlatches under the Indian Act, a federal legislation enacted in 1867 with the intent of assimilating all Indians into Canadian society. As a part of this assimilation program, Indigenous children were forcibly removed from from their homes and communities and placed in Indian Residential Schools. During the time of these policies, Kecia states, “Our whole community just went completely upside down…backwards.” Kecia’s grandmother and mother went to Indian Residential School in Port Albert. Her father, and her patriarchal grand parents were sent to boarding schools in Alberta. The effects of the Indian Residential School are intergenerational.
Earlier in the summer of 2015, the Truth and Reconciliation Commission released its final report along side its ninety plus calls to action, and later, the actual report. The Truth and Reconciliation Commission’s (“The Commission”) six-year mandate included documenting and telling the 150-year history of Indian Residential Schools to Canadians. In that report, the Commission documents the history and experiences of some of the children who are still alive to tell their stories. Many stories are never going to be told because the children are no longer here, either they have died at the school, died trying to escape the school or died but the details were not documented—some families are still searching for the bodies of their relatives.
In recounting the abuse some of the children experienced at the school, the Commission states that the complaints were infrequent. However, the lack of frequent complaints does not mean that abuse did not take place. In fact, it means quite the opposite. The Commission reminds us, “Many students feared they would not be believed—or would be blamed for somehow bringing the abuse upon themselves.” This fear of being blamed and not being believed when a traumatic event takes place is one of the many intergenerational effects of Indian Residential Schools. This is the same fear that Kecia experienced living in DTES.
After Kecia was diagnosed with HIV at a clinic in 1989, she says, “I was shocked but I wasn’t surprised – it explained a few things health wise.” She also knew it was a community issue. “I already knew people were dying.” While the news didn’t shock her, it did make her feel hopeless. She was diagnosed before September and by January the following year, Kecia says, “I was just wanting to die.”
Kecia soon went into detox following her diagnosis. From the detox, she called her mom. Over the phone, her mother told her, “Kecia, I love you and I want you to come home.”
This theme of home presents itself many times in Kecia’s life. Still, at the moment she heard those words from her mother, Kecia states, “I knew at that point I was going to be okay.”
From there, she began telling the rest of her family. “You are still our daughter, niece, granddaughter, cousin,” they told her. “It doesn’t change how we love you.” Kecia understood something powerful in these words: Being a First Nations woman living with HIV should never change how you are loved. You are still a person, a human being.
Kecia decided to begin the process of getting proper treatment for her HIV. However, she did not have medication until 1996, when medication started to become available. She tells me that it took her almost two years to find a doctor who could deal with her set of challenges.
British Columbia has no provincial or aboriginal AIDS service organization that can provide specialized services geared toward First Nation women living with HIV is difficult—an alarming reality that Kecia summarizes to me. But for the rest of Canada, the health care is not much better, and as Kecia puts it, “There is no way to measure how effective or efficient our care is.” Moreover, she adds, “We are less likely to be believed” (by healthcare professionals). This is not surprising to her. Within Canada, Kecia says “We (Indigenous women) are fighting so much on a national level just to be heard.”
For experts working on the issue, barriers to treatment are the major contributors to the disproportionate number of HIV infections among First Nations women – but the solutions are not as simple as one might imagine.
For instance, will the Inquiry even be an opportunity to be heard, especially when so many communities, including non-Indigenous communities, shame drug users and people living with HIV?
When she began her journey in HIV-related activism 1990, she was one of the few First Nations women who publicly disclosed her HIV status. In telling me what it was like to talk in schools, Kecia recalls, “Students having to get permission forms from home, signed by their parents and describes sometimes their parents wouldn’t let their kids come to school the day she was presenting.” She describes these permission forms as waivers of harm.
Dr. Mona Loutfy, who works with First Nations women living with HIV in Ontario and in the Prairies, says, “When I talk to you about what is happening, I see it first hand and it is shocking… it is a crisis.” She also states, “In Saskatchewan, the HIV incidence rate, at highest, is 5 times rest of Canada and now it is 2 and half times.” Dr. Loutfy continues, “Ninety percent of those new infections are in Indigenous individuals.”
Dr. Loutfy calls the issue of HIV among First Nations people like an iceberg. Dr. Loutfy says, “You have the colonization, at the bottom (of the iceberg) which leads to the intergenerational trauma; then you have social determinants of health like poverty; then you have mental health; then you have addictions; and then all of those are under the water.”
And, these issues only come to light once someone is diagnosed with HIV. Dr. Loutfy highlights, “Unless you look under the water and address the underlying issues, it is just going to continue.”
This is why Margaret Poitras from All Nations Hope Network which is one of the major organizations that work directly with First Nations, Inuit, and Metis people living with HIV, AIDS and Hepatitis C (HCV) in Saskatchewan describes needle exchange programs as band-aid solutions: The solutions only address the issue once someone is diagnosed with HIV and these initiatives fail to address the issues, lying underneath the water.
Still, Dr. Loutfy reminds us that it’s important to keep investing in harm reduction strategies. “If you have the (safe injection) site, you are decreasing infections, overdosing…it’s a no brainer.”
In the end, however, the gaps in accessing health care for Indigenous women living with HIV are manifold. Kecia describes the stigma in health care, including violations of privacy and human rights.
Prior to her diagnosis, Kecia and her then-boyfriend were trying to harvest copper, which they planned to sell for money to buy drugs. Her boyfriend experienced burns from the copper, which brought the couple to a local emergency room. Kecia remembers that while he was being treated for his burn, a nurse approached her and told her that he had tested positive for HIV (an act that she recognized was a breach of confidentiality). At that time, when someone was diagnosed with HIV, Kecia says, “They were called taboo.” There was a fear, pervasive across the country, around touching people living with HIV. But now, as stigma has decreased overall, the sense of HIV being “taboo” has persisted among Indigenous women with infections – an attitude that has affected how Indigenous women living with HIV are treated by the health care community.
HIV stigma also prevents Indigenous women from accessing and receiving appropriate treatment.
Poitras says, “The numbers of people who live with HIV in our communities are undetected” and “that we don’t have accurate numbers of people living and dying with HIV, including those who die by overdose.” In terms of HIV transmission among First Nations peoples, Poitras says, “The primary factor is IV drug use.” The Public Health Agency of Canada (“PHAC”) in their December 2014 report also came to similar conclusions.
PHAC also found that racism and gender inequalities worsen the effects of stigma and discrimination experienced by women living with HIV and AIDS. Dr. Loutfy describes the racism that affects the First Nations communities and First Nations women living with HIV in Saskatchewan – where HIV rates are twice as high as in the rest of the country – as pervasive. In Emergency departments, she witnessed other professionals describing Indigenous patients as drug seeking.
Kecia has similar stories, “HIV-positive Indigenous women are discouraged from having children, and that some Indigenous women are having their tubes tied.”
Kecia herself has been denied treatment by a doctor who assumed she was drug-seeking. In hospitals, Kecia says, “When HIV-positive Indigenous women ask for pain medication, doctors assume they are seeking drugs – even if they don’t have any drug-using history.”
For Kecia, her children were born in 1993 and 2001, one without HIV medication and another with HIV medication. Both live HIV free today. Kecia emphasizes, “Unless they put themselves at risk for it, they are not going to get HIV, they know now literally in the first month or two if they are positive or not and if they will remain positive for the rest of their life.”
Government responses, regardless of the party, to the HIV crisis have also compounded the problem, especially for women living in rural communities. The PHAC states that there is a “misperception that HIV is an issue only in urban environments.” – a misperception that has lead to cutbacks in essential funding. As a result, women who seek treatment for their HIV or AIDS are unable to access even basic medical care.
Dr. Loufty tells me an example about access to health care when she talks about the story of a couple who wanted to see her once Loufty obtained her license to practice in Saskatchewan. “It was December. It was minus forty-five degrees with snow everywhere,” she says. “They (the couple) are both HIV and hepatitis C positive.” During one of their visits, Loufty asked them, “How it is going with your medication?” The woman was pregnant and they both needed to be on anti-viral drugs (Anti-viral drugs help people living with HIV to reach “undetectable levels” which then impacts their life expectancy and enable a safe pregnancy). “We are having a little bit of problems, we sometimes get them (the medication) late,” the couple responded to Loufty’s question. Loufty outlines to me that in some instances, the couple missed their medication entirely. The place that dispenses the couple’s medication is forty-five minutes away from their home, and they had no transportation. The woman is on methadone and her partner was just released from federal prison. For some individuals, Dr. Loutfy says “The required drugs dispensed to patients for more than one day are available but legally denied to people who have been recently discharged from prison.” Despite these hurdles, Dr. Loutfy elaborates, “Some people still believe these people are doing it to themselves.”
To address these barriers, Poitras says to me that it is important to learn about the history of Indigenous peoples in Canada, including the intergenerational effects of Indian Residential Schools. Or, “connecting the dots” as Poitras calls it.
When asked about what it means to connect the dots, Poitras says, “It amazes me that many people working helping professions don’t know the history of Indigenous people.”
Poitras suggests to others in the helping profession that we start asking ourselves about our interactions with Indigenous peoples, “Do you know the history of their family as what happened to them as a human being, what has been stolen from them as child into adult hood?” Poitras calls on all people to see what part their ancestors played and to understand that their ancestors still work in those places (prisons). She says others must ask and learn about the role their ancestors played and continue to play in these realities, “Do they know the role the ancestors played?”
After calling her mom to tell her about her diagnoses, Kecia said that she wanted to tell the rest of her family. So, they had a large family meeting. At the meeting, there was a lady present who worked for the Ministry of Health or the Medical Services Branch in British Columbia. Not long after she told her family, including how she acquired the virus, she said to her family, “I don’t now what to do but I would like to warn other young people back home about this.” She said she wanted to tell other young people because she didn’t know, “How are they going to know?”
Following this meeting, Kecia worked with another doctor, traveling to communities. Kecia says her work was so well received they just continued doing it. Eventually, she became known as the AIDS lady. Across Canada, Kecia said, “People kept hearing about this woman, this girl, going to talk about people about AIDs. It was huge.” She did an interview with CTV and she was the first Indigenous woman to publicly disclose her HIV status on television. In her travels, Kecia describes some of the people she met. She says, “I met some really beautiful people that gave me some prayers.” And some twenty odd years later, there are still some people that pray for her.
The award that Kecia won is named the Kevin Brown Positive Hero Award; she was awarded and acknowledged at the 2016 AccolAIDS Awards Gala. The award is “presented to an individual living with HIV/AIDS who is regarded with great admiration and respect for his/her contributions to the HIV/AIDS movement.” Kecia takes her experiences and she instills her passion in her work. Kecia says, “My whole passion was allowing us to have dignity…let us have some family, let us belong.”
Returning to the theme of home, Kecia says, “Home is a big theme in my life…there is always a part of me (wanting) the stability of a home…I could never have that or create that until now.”
Nearly forty-five years later, she says, “It has taken forty years to heal, to come full circle.” Kecia continues, “When we talk about home, it is where I feel the safest, where I can be myself. I feel very lucky to have what I have today. I know I made home when my kids don’t wake up scared.”