Terri Wilder made these remarks at the January 12, 2017 meeting of the CFS Advisory Committee. I’m pleased to publish her complete comments, with her permission.
Good Afternoon- My name is Terri Wilder and I’m a person living with ME. It has been 10 months since I was diagnosed with this illness. In the past ten months my health has been up and down. I had to drop out of my PhD program after finishing all of my course work and passing my qualifying exam. Sadly, I only had my dissertation left to complete my degree requirements. Despite this life changing event, I have been part of two ME protests, two meetings with the Acting Assistant Secretary of Health and Human Services Dr. Karen DeSalvo, a meeting with the New York State HHS regional director, several meetings with leadership at the New York State Department of Health (to develop an ME webpage and create free state-wide ME CME/CNE content), convened several phone calls with a very high ranking NIH leader, and was the brain child behind the most recent call to action to get the NIH to release the promised ME FOAs. Simply put, I’m an activist fighting for my life.
What I would like to talk about today is how able-bodied privilege and microagression impacts the lives of people with ME. “Microaggression” is a term coined by a Harvard professor in 1970 to describe insults and dismissals he regularly witnessed non-black Americans inflict on African Americans. Psychologist Derald Wing Sue states that microaggression is “brief and commonplace daily verbal, behavioral, or environmental indignities, whether intentional or unintentional, that communicate hostile, derogatory, or negative slights and insults towards people.” People with ME encounter microaggressions frequently. Microagressions take place in everyday conversations, during ME meetings, during presentations, on websites with ME content, etc— often making them hard to call out.
So— when we put microagression into the context of ME the following examples come to mind: wearing scented body products in areas labeled as scent free is microagression. Telling a person with ME that “you don’t look sick” or “you look so normal” or asking them “you can’t give me ME can you?” is microagression. Inviting a speaker to give a presentation to staff at a government institution who is a documented misogynist and spreads stigmatizing untruths about person with ME is microagression. Placing damaging and inaccurate information on a government website about ME is microagression. Charging medical providers for clinical education on ME when we are so desperate to get ME medical education out in the world is microagression. Delaying the release of ME research FOAs is microagression. Stating that you don’t think a committee needs more people with ME on it is microagression. Holding CFSAC twice a year is microagression. Placing thinly veiled GET information in a publication about ME that goes out to thousands of public health professionals around the world is mircoagression. And referring to my illness as chronic fatigue syndrome is microagression.
Constantly referring to me as a patient is microagression. I’m not a patient 24/7 days a week. I’m a sister, friend, and daughter. I’m a person first and should be referred to as such. Using person first language is respectful and acknowledges that while ME is a part of my identity I’m not an illness and am only occasionally a patient in a medical provider’s office.
Projecting an “Us” vs. “Them” mentality is microagression. Illness lies on a spectrum. The reality is that anyone can become ill at any point in his or her life. So— if an opportunity to meet with a person of power OR a ME workgroup or committee seat comes open and you don’t immediately think of it as an opportunity to include a person with ME you are reinforcing the idea that an able-bodied person is a better fit. And that simply isn’t true. That is microagression.
So— when you want suggestions on how to engage “stakeholders” start by checking your able-bodied privilege and how you participate in microagression. Stakeholder engagement isn’t just about convening regional meetings, phone calls, or sending out a survey to get input— it is about checking your privilege at the door every time you engage with or on behalf of a person with ME.
ME affects all of us differently. Since illness is on a spectrum from “more ill” to “less ill” I challenge people with ME to also think about abelism, microagression, and their privilege. For example, when you advocate on behalf of the community do you forget about the people who are completely bed bound or unable to speak? The most ill are probably people you will never meet because they can not come to a meeting like CFSAC or participate on advocacy calls or attend a ME conference in Florida.
I will close by sharing a story. I just recently finished reading “How To Survive A Plague” by David France. I encourage everyone in this meeting to at a minimum watch the documentary of the same name. It tells the story of how people with HIV fought for their lives during the early years of the AIDS epidemic. Not surprisingly, I was struck by the many parallels between ME and HIV in the early years of the epidemic when there was little government response and people with HIV were neglected and left to die. In the book Michael Callen (who was a person living with AIDS) gives congressional testimony. During his testimony he states, “So whatever you or your colleagues do or don’t do, whatever sums are or are not allocated, whatever the future has in store for me and the hundreds of men, women, and children whose lives have been irrevocably changed by this epidemic, the fact that the Congress of the United States did so little for so long will remain a sad and telling commentary on this country and this time.” As I read this I, of course, thought about my life and how one day I might give congressional testimony literally saying the same exact thing about ME.
People with ME are fighting for their lives. Don’t dismiss our activism in public forums, secure high-level meetings without us or send emails to us when you disagree with our published opinions. Don’t tell us that we got you in trouble with your boss when we wrote them a letter. It isn’t appropriate and is a form of microagression. We are engaging in any means necessary to end this illness. Join us or leave. This is about our lives not yours.
Support us in our struggle against those who ignore us, stigmatize us, discriminate against us, won’t provide medical care to us, won’t fund RFAs to improve our lives, don’t believe us, and undermine our efforts. Work with us to create spaces so that we are involved in every level of decision-making, are included in forums with equal credibility as other participants, and have the opportunity to share our own experience and knowledge.
And if you feel like your able-bodied privilege could possibly get in the way of the ultimate goal of curing this illness I encourage you to tape a picture of a severely ill person with ME by your computer or phone or keep it in your wallet so you can check your able-bodied privilege at the door when you literally walk into a ME meeting, when you meet with a high ranking government official on behalf of the ME community, create a clinical education video, respond to our email and calls, or when you create other materials that reflect our lives.
Thank you.
Zero, Zilch, Zippo
Zero, zilch, zippo, nada, cero, null, nulla, sifr, nul’, ling, nialas, sero, naught.
No matter how you say it, we got nothing.
Despite the promise in October 2015 that a request for proposals would be issued “soon.” Despite Dr. Collins’s statement to NPR in November 2015 that NIH would “ramp this up.” Despite Dr. Vicky Whittemore’s estimate at the May 2016 CFS Advisory Committee that the RFAs would be issued by June or July 2016. Despite NIH’s public statement in the Federal Register in October 2016 that the RFAs would be published in December 2016.
We. Got. Nothing.
Specifically, NIH announced on the last business day of December 2016 that the RFAs are now expected to be published by the end of January 2017. NIH said that “due to a high level of interest from multiple NIH Institutes and Centers, several rounds of revisions were required, and a number of finishing touches are necessary to optimize the funding announcements.”
Remarkably, Dr. Francis Collins even made a statement on Twitter:
This very public update on the status of the RFAs is clearly the result of activism. First, Terri Wilder/MEAction and I launched a public effort to urge Dr. Collins to keep his promise to the ME community. Then Janet Dafoe suggested that people with ME tweet Dr. Collins with their pictures and a statement that they are waiting for funding.
This filled Dr. Collins’s Twitter feed with dozens of pictures of severely ill people with ME, in a very moving wave of activism.
These public acts holding Dr. Collins accountable for his broken promise led to the statement on Friday about the delay. The reason, according to Dr. Collins and the public announcement, is that a high level of interest from the Institutes resulted in revisions and “finishing touches.”
These RFAs have been in progress since June 2016. In October 2016, NIH said they would be out in December. Was there an increase in the level of interest from the Institutes between October and December? More importantly, will this increased interest lead to increased funding? Dr. Whittemore told me by email in December that the money was committed, so that the continuing budget resolution would not impact the funding. If the money was committed by December, I don’t think it’s likely there was a last minute surge of interest and funding.
NIH has moved the goal posts again, this time to the end of January 2017. A reasonable person might think that this public statement of the new deadline would ensure that NIH meets it. But that reasonable person should take into account the previous public statements by Dr. Collins and by NIH in the Federal Register. NIH has not come through on previous self-imposed deadlines. It remains to be seen if this time it will be different.