Adventures in Public Speaking
Today, September 14, 2023, I gave a virtual talk at Boston University’s School of Public Health about my anthology Disability Visibility since the school selected my book as their 2023 School of Public Health Read. I had an unexpected medical procedure so I recorded the responses to the questions and submitted them to the host. On Tuesday, I received the following message forwarded to me by my speaking agent.
a) we do not lend our platform to speech that is non-rebuttable ( i.e. ,similar to “name-calling”); and
b) we do not encourage calling out people who are not present and who cannot as such offer defense of their actions. We do sometimes host debates where both parties can then have their say, but given that this is one person speaking it does not seem right to mention individuals not present.
As a school, we have shared these perspectives widely across our networks and communities. (Please find Dean Galea’s Note “On Supporting Free and Respectful Academic Speech” here: https://www.bu.edu/sph/news/articles/2023/on-supporting-free-and-respectful-academic-speech/)
With that said, we are hoping Ms. Wong might consider changing the line “F U Anthony Fauci” to “I disagree with Anthony Fauci”. We feel this would be something that better reflects our values and code. Similarly, in calling out Ashish Jha and Leana Wen, we feel that the personalization is problematic given that they are not there to defend their perspectives. We ask that Ms. Wong consider removing just the names. It is certainly fine to disagree with policies and approaches indeed.
This was the first time a host asked me to consider modifying my response. It felt like censorship to me, a way to dampen my valid frustration and disappointment in certain public figures and reshape my remarks in the name of civility, respectability, and palatability. Since I already did the work and did not want to lose the opportunity to speak with School of Public Health, I provided a revised response because I have strong critiques about the field of public health as a high risk disabled person who is has been rendered disposable before and during the current pandemic along with millions of immunocompromised, chronically ill, and older people. In this revised response, I shared the following concluding thought:
… I received a request from the university to consider removing one sentence and two names in reference to a note by Dean Galea titled “On Supporting Free and Respectful Academic Speech.” I complied because I didn’t want to lose the opportunity to speak with you all. I am curious why they asked me to omit those two specific names when I was allowed to mention others but you can draw your own conclusions. If a school invites an activist like me, they may not like what they hear and I may call out some individuals who are not present. In addition to organizing, strategizing, and building relationships, there may be times when activists may say some things you find uncomfortable in an attempt to hold public figures in powerful positions accountable even if they are not present to defend themselves. If not by us then who? If not at events like this then when? Creating change can’t always happen in civil or respectful ways. You can find my original response on my website at disability visibility project dot com and I will end this response with a quote from Angela Davis, “You have to act as if it were possible to radically transform the world. And you have to do it all the time.”
Here are original excerpts of my response with certain sentences and names in bold that were omitted for this talk:
I’m going to be completely blunt Dean Cozier and say the public health community has effed over high risk, immunocompromised, older, and disabled people. Not just now during the pandemic but way before. We already have so many skills and lived experiences about being isolated, protecting oneself and each other, the eugenic nature of our society, and how the public health system and medical industrial complex was going to gaslight and dismiss people who present new symptoms as they had covid or long covid. And this is what enrages me to this day, the fact that we are considered expendable with little to offer because our society centers and worships normative bodies, whiteness, and youth. In a recent interview Dr. Anthony Fauci said to BBC, quote, “Even though you’ll find the vulnerable will will fall by the wayside, they’ll get infected, they’ll get hospitalized, and some will die. It’s not going to be this tsunami of cases that we’ve seen.” End quote. F U Anthony Fauci.
I was interviewed by Sean Hagan for your student paper and I’m going to repeat some of what I told him. Public health has deteriorated in the last few years with prominent health care professionals, public officials, and policy makers such as Dr. Ashish Jha who has been platformed by the Boston Globe and Dr. Leana Wen with the Washington Post who continue to spread misinformation, minimize the pandemic, and promote the ideas that long COVID is not a the mass disabling event that it is, that everyone will be fine because vaccines and Paxlovid exist without acknowledging structural barriers and racial disparities, and that immunocompromised and high-risk are outliers who are inevitable acceptable losses. Just because you may have several comorbidities or be over 65 years old doesn’t mean you deserve harm and adverse outcomes from an infection.
In a Tweet by Dr. Jha on August 13th of this year he gave this advice, “Get treated if infected, Use masks and tests if you wish, And don’t worry about every new variant.” Um, does he not realize treatment is not always available or affordable to those most impacted by the pandemic? The phrase “If you wish” regarding testing erases the fact that tests are no longer free and easily accessible and that people in positions of authority like him find that masks are optional despite the fact that this is an airborne virus that is easily transmissible by asymptomatic people. The condescension of telling the public to not be worried about the latest variants dismisses the valid fear of high risk people who struggle to exist in public spaces without being harassed for masking or requesting accommodations because the current systems in place have abandoned us in a push to return to quote unquote “normal.”
I don’t give too many talks anymore due to my hospitalization last year. Since I lost the ability to speak, I wondered if anyone would be interested in having me especially as society assumes the pandemic is over resulting in possibly fewer hybrid or virtual events. In my access rider I requested questions ahead of time so I can type my responses so they are ready to paste into my text-to-speech app. I also send a copy to the host so the ASL interpreters and captioners have the spelling of specific terms and names. This was my way to create an accessible environment for myself, the audience, and for the event organizers. It requires a lot of labor, planning, and forethought on my part as it is much easier to speak for an hour versus preparing 20+ pages of text for a conversation.
Never ever did I think my access needs would be used to have me modify my remarks which would never happen at a live event unless they cut off my microphone or pulled me off the stage.
I learned my lesson and it would be the last time this will ever happen to me. I instructed my speaking agent to include a clause in my contract that future event organizers/hosts may not modify or edit any of my written or recorded responses nor may they not request modifications.
It took a lot of courage for me to get back to public speaking this year and I continue to because I have a hell of a lot to say and want to engage with people in public as I rarely travel or go out anymore. While the effort is greater on my part, it’s worth it. I’m disappointed that a major university disregarded my understandable rage. If organizations and schools actually want a diversity of speakers, they need to accept guests as they are as long as they do not espouse or incite hate, bigotry, or violence (obviously). If you look at my comments in bold, they are quite innocuous but from the perspective of non-disabled people in power perhaps they viewed me as a bitter, angry, irrational, “hysterical” activist. That’s their loss.
If you are interested in a disabled activist, writer, and editor who speaks truth to power, you can send your peaking requests to Steven Barclay at Steven Barclay Agency, 707-773-0654; steven@barclayagency.com and Alyssa Jones, 707-773-0654, alyssa@barclayagency.com
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