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Opinion

Cutting Gilead Critique From Larry Kramer's USCA 2018 Speech Is the Tip of the Ableist, Ageist, Pay-to-Play Icebergs of Conference Culture

September 10, 2018

Larry Kramer addresses USCA 2018 attendees via video

Larry Kramer addresses USCA 2018 attendees via video


In an April email gushingly announcing the addition of noted HIV activist, author, and ACT UP New York co-founder Larry Kramer to the agenda of last week's annual United States Conference on AIDS (USCA), NMAC executive director Paul Kawata wrote:

If you've never heard Larry speak, then buckle your seatbelts. Larry speaks his truth. ... Join us as we sit at the feet of one of our movement's elders. Space will be limited and NMAC may need to adjust seating arrangements so that everyone will fit.

Well, it turns out that what didn't fit was a whole bunch of Kramer's speech, primarily the section with a scathing critique of Gilead Sciences -- the massively profitable pharmaceutical company that's also the number one philanthropic donor in HIV/AIDS and a big-time sponsor of USCA 2018. [Editor's Note: Gilead is also an advertiser on TheBodyPRO, including within our USCA coverage.]

But, not being there in person, Kramer couldn't do one damn thing about it. As he explained at the opening of his speech, as posted on his Facebook page:

I apologize for not being with you. I had hoped to come. I had looked forward to meeting and talking to other long-term survivors. But my 83 years of living is currently exercising a No Travel request.

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Kramer's speech was instead delivered by video, and -- like the talks of most every person who speaks at a conference -- it went over the allotted time. Who amongst us has been spared the experience of the religious leader or politician who says, "I'm going to keep this short," and then goes on to do anything but -- and what is Kramer in the typology of the HIV movement if not a preacher?

At the conference, in his introduction to Kramer's speech, Kelsey Louie, CEO of GMHC, joked about the length of the video and explained that it had to be cut.

This begs the question: Why did NMAC invite Larry Kramer to speak -- the Larry Kramer about whom Kawata wrote, "Our movement owes a huge debt to all the leaders who spoke truth to power" -- if they were going delete the part of the speech that accurately dissed one of their major funders? Why do that to yourselves?? LARRY KRAMER??

Also, what and when did Louie know about which part of the speech had been cut? Who all was in on this debacle?


Buckle Your Seatbelts

I am not one to sit at anyone's feet (at least not before a consensual negotiation about a whole other thing entirely). That fawning email from NMAC made me scream. I don't worship at the Church of Larry. I feel strongly that the dynamic of putting one founding man on a pedestal over an entire movement does us all a disservice. He's got huge access to mainstream media and has used it at times for things about which I fundamentally disagree; moreover, I've seen him being a big, pessimistic jerk to young activists.

But the censorship of Larry's video speech is not acceptable. Nor, sadly, is it surprising.

Yes, censorship. I'm an editor. I have the privilege of working with brilliant, opinionated writers who go on at length (as well as those who are dreamily compliant with word counts). And you better believe that I go back to them with suggested cuts to give them the opportunity to suggest other cuts or to find other ways to slim down yet include what they feel is most imperative.

Who the hell thought it was OK to edit Larry Kramer but not let him know that his full video wasn't going to air? Seems like someone (or ones) knew damn well that they were going to cut the Gilead piece, and that that was never going to fly with Kramer, and used the opportunity of physical distance to deny Kramer any choice or even a head's up about it.

Here's the full transcript of the video, posted by Kramer on his Facebook page:



Will the Revolution Begin at Home or in Hotels?

The Kramer debacle demands inquiry into the explicit and implicit bias in favor of corporate funders, especially Gilead. But it would be a missed opportunity if we didn't also take this moment to consider the fundamental inaccessibility of conferences.

I can only hope the ensuing furor will back up mounting demands for scrutiny of the process and priorities at big ticket conferences, including the biannual International AIDS Conference (AIDS 2020), which has a budget in the millions and has chosen for its next venue the California Bay Area, an inaccessible and unaffordable location that will force many people with HIV not to attend, face the risk of being turned back at the border, or go elsewhere to gather.



Related: At USCA 2018, the International AIDS Conference in 2020 Casts a Broad Shadow



Moreover, this is also a story of ableism and ageism, showing how even the most powerful among us are marginalized when we are ill, when we are disabled, and when we are aging.

I'm writing this story from my house, where I have been fortunate enough to be able to work full time as a person with chronic illnesses and intermittent disability. I was supposed to go to the USCA 2018, but I've learned my lesson: After a fantastic but exhausting summer's end trip with my daughter, I knew I didn't have it in me to turn around and take another journey. I know what it's like to spend much of a conference in my hotel room or to arrive back home too tired out to do a good job of parenting my kid and catching up on work from when I was away.

Kramer and I have at least one thing in common, despite differences in our political analysis: We're illders.

That's my cute term for those of us who garner wisdom and sorrow and everything in between because of chronic illnesses that lead us to being more infirm or frail before many people of the same chronological age. It's a key factor and concern in long-term survivors living with HIV, especially those who were exposed to a whole lot of HIV virions in the era before any treatment and/or in the years when treatment was effective but a whole lot more toxic than it is now. And, it's a happy problem that folks like Kramer are now surviving to become not just illders but bona fide elders.

I'm not sure who said this first, but it sure rings true: "If you're not at the table, you might just be on the menu." And even if you're a Larry Kramer, if you're not there in person, you might just have the parts of your speech that take on the conference's big funder end up on the virtual cutting room floor.

And very few of us are Larry Kramer.

So, what happens when our distance from the table is measured by the status of our health? When it is measured by our access -- or lack of it -- to a bit of cash to help us get a cab to the airport instead of two trains and a bus or to front the costs of our restaurant meals when we need to eat? By having a family structure and access to resources to ensure loving care for our children during the first week of school even if we are away?

What happens if getting to the table also risks a random traffic stop that could result in our detention and deportation if we don't have acceptable documents or citizenship status? Or when airport security is a bit too eager pat-down our gender-nonconforming body? How many trans people and/or immigrants literally risked their safety and freedom to get to USCA?

When has a conference opening reception had a full menu that's anything but devastating or too puny for a person with diabetes?

Why are conferences not fully sober spaces, with the substances next door or offsite rather than just saving space for 12-step fellowship during caucus slots or mealtimes?


Crisis Communications, the Crisis of Conference Culture

The edited Kramer video aired at the conference last Thursday, Sept. 6.

And as I started typing this the following Saturday, I was going to include a damning fact suggesting that cutting the video was never was just about Kramer going over time: USCA could have chosen to air the whole, unedited video online if not at the conference itself (a simple enough thing to do).

But by Saturday afternoon, Kawata had added a comment to Kramer's Facebook post, saying:

The Opening Plenary had many exciting speakers including a video from Larry Kramer. Unfortunately, Larry's full video runs 35 minutes and we did not have that much time during the Opening. NMAC is committed to run the entire piece. Look for it at the closing plenary with a special introduction from me.

In the PR world, that's called crisis communications.

But what about the crisis of conference culture?

As mentioned above, we've got the International AIDS Society (IAS), San Francisco AIDS Foundation, and other well-heeled entities planning the massive AIDS 2020 conference (we're talking 15,000-30,000 people, easily five to ten times larger than USCA) in the United States, which has an explicit ban on the entry of current or former sex workers and people who use drugs, in addition to people from specific Muslim-majority nations.

The boosters of AIDS 2020 say that it'll put a spotlight on HIV and be a media draw. AIDS2020ForAll supporter Dazon Dixon Diallo of SisterLove agrees, but in a whole other sense. As she explained to TheBody:

Who [in the media] will have time to go all-in on the AIDS conference? The opposition! They'll say, 'Look at all the crazies coming to that sanctuary city in Nancy Pelosi's backyard.' We would rather the international AIDS community come to the U.S. when we have different national leadership and we've cleaned up our house.

Dixon Diallo is also the convener of Women Now, a global HIV/AIDS conference for women of African descent, which has already pledged to not be a pre-conference at AIDS 2020 if it's held in the United States.


Calling the Questions

Conferences can be affirming and fun. Sparks can fly; hearts can swell. And every once in a while, the media turns up, though not so much these days.

But no matter what, any conference anywhere, just like any decision-making meeting anywhere, or any public hearing anywhere, is going to be hard if not downright impossible to attend for people risking deportation when they leave the house, or needing to carefully decide how to spend the few hours a day they have the energy to leave the bed or sofa due to chronic illness, or needing resources for their care attendant to be at their side (or their sponsor so they don't pick up at the opening reception).

Conferences are filled with big talk about inclusion, about stigma, about marginalization. And, almost by definition, they are exclusive, stigmatizing, and marginalizing spaces. Nevertheless, they provide liberatory, pivotal, and affirming experiences for many.

The IAS has already funded at least one consultant to look at what it means to hold gatherings in the era of virtual reality and digital communications. But they've yet to seriously engage with the hundreds of groups and thousands of people worldwide -- me included -- that have asked for clear answers about AIDS 2020's location and budget and huge access problems.

This isn't to say there are easy answers. But the questions are genuine, and they are important. May the lesson of Larry help us commit to tackling some hard questions in the coming days, months, and years about what it means to convene in these times, in this country, and in this world.

JD Davids is a senior editor and the director of strategic communications at TheBody.com and TheBodyPRO.com.

Follow JD on Twitter: @JDAtTheBody.


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At USCA 2018, the International AIDS Conference in 2020 Casts a Broad Shadow



This article was provided by TheBodyPRO. It is a part of the publication 2018 U.S. Conference on AIDS.
 

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