I have lost a friend this week, and many others have lost a seemingly tireless ally in a number of struggles for rights and recognition. I know that I will not do justice to Abby Lippman’s contributions to academia or to a number of the social movements where she made her mark, so allow me to concentrate on those areas where our lives happily intersected.
I met Abby at Head & Hands, a youth organization in the NDG neighbourhood of Montréal where I worked as Coordinator of Legal Services and then as Executive Director, all in the 1990s. Abby was a member of the Board of Directors and President of that Board for a number of years. Not your usual President, but one who came with extensive knowledge and history in the women’s health movement, and one who demonstrated her commitment to the cause with every act. I remember that we had an annual fundraising mailing to our members at the beginning of December, and Abby personally signed each of those letters, often adding a personal note to the member/donor. There weren’t dozens of these letters, there were hundreds of them. Every one of them got a signature that could be smudged to demonstrate its authenticity, putting some real meaning into the strength of a small charity: that it can be close to and personal with its donors.
When I left Head & Hands, I was very happy to be able to pursue my relationship with Abby, now more as a friend than as a colleague. Oh, we talked about health issues and didn’t always agree about everything (I’m thinking of the funding from pharmaceutical companies that I felt my organization could accept without impact on the content of the programming it served to support or the issue of HPV vaccination). Even when we didn’t agree, Abby always gave me a reason to reflect on my opinions and to see them through other eyes.
We are both big fans of the arts — my taste in films was often much more pedestrian than hers — and we had occasions to go to the movies or to a student production of an opera at McGill. I have two favourite memories of Abby at the cinema. First, when we participated in the time-honoured tradition of going to see a film (or two) on Christmas Day. Abby was determined to sneak into the second film without paying, while straight-laced Ken insisted on going out and paying as we should…I paid for both of us in my slavish following of the rules.
The second movie memory was when I encouraged Abby to sign up for the cinema’s loyalty program in order to be able to accumulate points for free movies. She painstakingly did her sign-up at the automated kiosk and got her temporary number…whereupon I learned that her concern for privacy had led her to use a pseudonym and give a false address and invented postal code! How, I asked, are you going to get your card, which they send through the mail? I don’t know if she ever went back to deal with that one, but it left me giggling.
The most moving thing Abby did for me was to include me in her family, inviting me to participate in the family meals for all of the Jewish holidays. Her Seder evolved over the years, with multiple texts to choose from (traditional, feminist, humanist, and a Dr Seuss-like version called Uncle Eli’s Haggadah) and some extra items on the Seder plate — an orange for the place of women and Palestinian olives to remind us of the occupation and the injustice in that situation. The year (one of the years?) when Israeli forces invaded Gaza, all texts were set aside, and Abby read a letter she had written denouncing that action. The meal was always permeated with the political significance that it deserved, even if the metaphorical connections to current social justice issues might have been more pronounced around her table than around many others.
Abby wrote editorials, marched, picketed stores, participated in an ongoing vigil of Jewish and Palestinian women outside the Israeli consulate… Like I said at the beginning, it would be impossible for me to list every cause and every action without unjustly leaving several out. She exuded boundless energy for social justice and little tolerance for its absence. She was opinionated and loving, loud and giving, quirky and intelligent. Most of all, she was someone I was glad to be able to count as a friend.
I will miss you, Abby Lippman.
*****
Article in The Gazette here.
In lieu of flowers, Abby's family requests that dontations be made to The Native Women's Shelter of Montreal.
So, I have now survived my AIDS diagnosis by 20 years and I will mark the occasion by venting about language in relation to this epidemic.
Some will balk at the use of the term AIDS at all, and I can understand that to some degree. As the — uh — proud (?!) owner of a diagnosis of AIDS, I have to recognize that it just doesn’t mean the same thing that it did decades ago. In the beginning, it was as much a prognosis as a diagnosis, an indication of where one was on the one-way trip to disease and death. Not anymore. “AIDS” as a term is still useful to diagnoses someone who has waited too long to get tested for HIV or for whom treatment hasn’t been working, but one can now expect to recover from those things. Even I, with my very late diagnosis at a point where I was basically without an immune system, have survived 20 years in pretty good health with treatment.
So I’ll concede that it is not always appropriate to speak of AIDS and most times more appropriate to refer to HIV.
Now we seem to also be dealing with the disappearance of the acceptability of using HIV as a term. I’m not talking about our governments’ tendency toward convergence in their funding and strategies, bringing all sexually transmitted and blood borne infections together — that makes sense all the time for prevention, although it is still useful to pull out the HIV to recognize some of the social effects and stigmatization that are less evident with the other STBBIs. No, I’m talking about addressing HIV stigma by not saying its name out loud, by changing organization names to omit all reference to HIV or AIDS, by speaking strangely about “lived experience” as code for living with HIV instead of naming it. (We all have lived experience of something, right?)
Hiding HIV and hiding AIDS will do nothing to address the stigma that is associated with this epidemic. If anything it will make it worse.
In that vein, let me turn to another practice in our movement, marked as it is by what I like to call the culture of secrecy. I understand confidentiality and the need for it for people the most likely to suffer negative effects of stigma. What I don’t understand is the special brand of zealousness that would impose that secrecy on my own speaking of my own experiences. Let me illustrate with a few examples.
I was recently at the hospital testing centre for my regular blood tests. As the clerk at the desk shuffled through the too-many papers that my doctor had given me to identify which tests to do, she began handing papers back to me. One was for my HIV viral load, and I pointed that out to her: “If I’m not getting an HIV viral load, why am I even wasting my time here?” She fell all over herself trying to keep my voice down, so as not to compromise the confidentiality that I guess I was too thick to protect for myself.
On another occasion, years ago, I was at a gathering of HIV-positive people and proposed a resolution to change the way the minutes of the meetings would be reported. There was in place a practice of blacking out the names of the proposers and seconders of motions to protect the confidentiality of those participating actively at the meetings. My proposal was to allow us to choose whether or not our names would appear as a part of the official record. My motion passed quite easily. When we returned to the same meeting the following year, the most egregious example of this culture of secrecy sprang forth, as the minutes of the previous year’s meeting were presented to us, my motion clear on the page, but my name and the name of the seconder blacked out. (We objected!)
Finally, when my friend Doug died in 2014, the organization with which we had both identified in our pasts proceeded with its annual ritual at its general meeting, naming those we had lost during the year while lighting candles and inviting the crowd to observe a moment of silence. The person reading out the names made an error, diverging from the organization’s usual practice of pronouncing the first name and the initial of the family name, and actually read out whole names. Doug would have approved heartily, as did I. I got up at the end of the meeting and congratulated them on the move, expressing my hope that it was a change of policy and they would not be returning to the other practice.
I understand that not everyone is in my position — I am living my experience of HIV with a lot of privilege. I have supportive friends and family members, it would be much more of a scandal for me to lose my job for being HIV-positive than to keep it (I work for an AIDS organization) and I go about freely identifying myself as a person living with HIV. After all this effort, I will not tolerate my experience of living with HIV being scrubbed from the record, as that would go against everything I stand for.
I would rather be forgotten entirely than anonymized posthumously by some misguided notion of protecting my confidentiality.
