Melanie Brooks is the author of the memoir A Hard Silence: One Daughter Remaps Family, Grief and Faith When HIV/AIDS Changes It All. She teaches creative nonfiction in the MFA program at Bay Path University and holds a certificate in Narrative Medicine from Columbia University.
On May 20, when British Prime Minister Rishi Sunak stood before Parliament and apologized to victims of the infected blood scandal, I felt the familiar ache of old wounds. “This is a day of shame for the British state,” Mr. Sunak said in response to a six-year inquiry’s final report that exposes what its author, Sir Brian Langstaff, called a “catalogue of failures” by the British government and its health system that caused the infections of 30,000 people with HIV and Hepatitis C in the 1970s and 1980s. After decades of denials and cover-ups, the British government is finally recognizing victims and fast-tracking plans to compensate them.
As I watch this developing story, echoes of my own family’s story reverberate. Almost 40 years ago, my father contracted HIV from contaminated blood, too.
In 1985, after a quadruple bypass in Nova Scotia during which he received a blood transfusion, Dad learned he was HIV-positive. Knowing the stigma of this life-shattering news and wanting to protect his family, he decided his illness would be a secret – one we’d all keep. For 10 years before his death from AIDS-related complications in 1995, my family lived our experience in isolation, the risk of exposure an ever-present danger.
I watched with the heartbreaking anticipation of future grief as my brilliant surgeon father shrank beneath the weight of AIDS. He lost his vocation and, with it, his confidence. The shame embedded in the silence shrouding his illness settled in all of us. Almost 30 years later, I still struggle to make sense of it all.
More than two decades before Sir Brian delivered his findings, the 1,200-page final report from the Krever Inquiry revealed similarly horrifying failures in Canada’s blood system. Appalling mismanagement by the Canadian Red Cross and its regulators, as well as corporate greed by blood-product manufacturers and distributors disregarding public safety, allowed the knowing distribution of infected blood across the country. At least 2,000 Canadians were infected with HIV and another 30,000 with Hepatitis C. And the tragedy was wholly preventable.
I learned these facts two years after my father died, and I became a beneficiary of the financial reparations the federal and provincial governments awarded in the years that followed. But none of that compensated for the Dad-sized hole in my life. I suspect that for the loved ones of the more than 3,000 people in Britain who have died and the 27,000 others still living through this catastrophe, the same will be true: Nothing can erase those losses.
Yet, I am hopeful that this moment holds the possibility of a different kind of healing. After 40 years of fighting to be acknowledged, Britain’s victims and their loved ones are getting the chance to speak. Their stories of heartbreak and pain are no longer silenced by skepticism; instead, they are being centred in the global dialogue.
The inquiry reviewed more than 4,000 victim statements, and an entire volume was devoted to “People’s Experiences.” These deeply personal accounts of coping with pain, illness, and loss are what help us to understand what it was like, and prompt us to care. As Sir Brian said, in an interview with The Guardian: “[It’s] suffering that is very difficult to put into words. You really have to listen to people who’ve lived it to hear and to understand.”
As a writer, I know firsthand the power of personal stories. Sharing mine pulled me from the loneliness and silence, and facilitated opportunities for genuine connection. The findings of Canada’s inquiry 20 years ago sparked the courage that would eventually allow me to engage with this public tragedy and begin to understand its lasting consequences. The report gave me tools to locate my family’s story within the greater AIDS narrative. They showed me that my loss and the legacy of the trauma that remains are not singular, lonely experiences, but rather that they are part of the collective memory, and others feel them too. It made my experience matter.
Public apologies and media attention won’t change the circumstances of the British blood scandal, but they will validate the stories of those who’ve lived them. That validation sets the path toward a new conversation – one with space for victims to put down pieces of their suffering and give others the chance to share the burden. Perhaps then they will encounter the relief of being fully seen and, after such a long wait, know that their experiences matter too.