An Interview with JD Davids: Lessons from an Illder (Chronically Ill Elder) on Pride, activism, and accessibility

JD Davids is a writer, an advocate and an #MEAction Board member. He has more than 25 years of experience in health activism, social movements, policy and journalism and he lives with ME/CFS and a handful of other diagnosesWe interviewed him earlier this month about Pride, activism, accessibility and are grateful for the opportunity to share his incredible analysis and advice below!

#MEAction: June is pride month, and its Global Pride celebration is virtual this year. What do you think that means for accessibility and people with ME and other chronic illnesses and disabilities participating in Pride?

JD: So, this year, as many LGBTQ+ Pride events move online, it may seem like that inherently makes them more accessible to people with chronic illnesses and disabilities.

Just like so many things right now, we’re seeing that what we’ve been told wasn’t possible (as far as making events accessible) became very much possible, once people who are temporarily able-bodied, particularly white and affluent people, were affected.

But who will be featured in these events? People who appear able-bodied, gender-normative and considered attractive? Non-wheelchair users, people who are not neuro-divergent? Will we hear from queers calling in from our beds? Or will there be a special effort for inclusion that’ll go by the wayside if/when life returns to “normal,” post-COVID19?

Over the past years, many Pride events have become more and more inaccessible. Some have started to charge fees for their festivals or otherwise become even more inhospitable to those who don’t fit the profile for their corporate underwriters.

Unless these events are really using the best practices of deep inclusion, if they don’t have sign language interpreters, if they’re not translated into multiple languages, if they’re not captioned, for whom are they accessible? If they don’t really address issues of stamina and focus, we know for many they will still not be accessible. 

When they go back to being outside or in venues, if they’re not free or you have to be over 21 to attend, or if they are in a part of town that is literally unsafe for Black and Brown people due to police harassment, who are they really for?

So I think we can’t assume just because something is online, that it becomes accessible, or just because it came from a movement with a history of social justice struggle that it will have learned from queer and trans disability justice movements.

I think it’s important that we ask ourselves, who is Pride for? We know that, particularly for LGBTQ people of color, especially, Black and Brown people, and for immigrants, for sex workers, for those who are imprisoned, Pride events can be alienating at best, and truly unsafe at worst… or people may be welcomed as queer and trans performers and culture-creators, then left out of the picture when it comes to really seeing what’s going on now with the economic devastation that’s especially hitting hard in communities of color.

I think it’s important that we ask ourselves, who is Pride for? We know that, particularly for LGBTQ people of color, especially, Black and Brown people, and for immigrants, for sex workers, for those who are imprisoned, Pride events can be alienating at best, and truly unsafe at worst.

In recent years, it has seemed like Pride is an opportunity for advertisers and corporations to vie for the loyalty and funds of those of means. If we’re really about the kinds of justice and liberation, that our LGBTQ ancestors were fighting for, these events are irrelevant, whether in the streets or online, and they’re not going to bring about the systemic transformation we need to lead to the health justice that people with ME need regardless of gender or sexuality.

But even as I say that, I know that Pride can be life-transforming for queer and trans youth and others who have been so isolated and lonely. I know it was for me, many years ago, as I was learning who I really was. So I also can get off my radical soapbox for a bit and realize that the love is still there. 

Also, Reclaim Pride – a major group in NYC that arose in opposition to the corporatization of Pride events – is having an event dedicated to Black lives and defunding the police. It’s both a march in the streets and will be accessible through online broadcast. It doesn’t have to be either/or.

I am so incredibly proud of queer and trans people, and so deeply disappointed about the reduction of Pride events to surfaces upon which to slap corporate endorsements. I feel like many Pride events are a celebration of unhealthily narrow standards of what bodies should look like, what our relationships should look like, and what can be done to reduce our lives to what I consider the life-draining practices of capitalist hetero-normativity.

#MEAction: You’ve been a longtime advocate in both the LGBTQ plus movement and the HIV movement, what have you learned in these spaces you think it’d be helpful for the community.

JD: I always advise people to follow the practice of ”Do what you say you’ll do. And if you can’t, just tell somebody.” 

These issues are complex for those of us dealing with chronic illnesses, especially for people who have moderate or severe ME, and I do not want to speak on behalf of others, as I have mild to moderate ME.

But there should be no shame at all at not being able to follow through. Sometimes the shame at not being able to have that energy or stamina, or having enough time to realize our plans and visions stops us from being able to connect to one another and build the trust that we need to truly move forward. So if we’re going to have movements that truly are by and for people with chronic illnesses, then they truly have to be for people with chronic illnesses — and  that means that it’s absolutely acceptable for us to need to change our plans and absolutely acceptable for us to say that we’re not able to do something that we anticipated being able to do.

Love each other, don’t fear each other. Build your own structures of support while ALSO demanding government resources and leadership.

That may seem too detailed or mundane, but the thing with movement work is that there’s a lot of mundane details that we need to attend to to win the changes we need in our lives in the world.

And love each other, don’t fear each other. Build your own structures of support while ALSO demanding government resources and leadership. Take turns doing the work and resting, supporting each other when we need care and when we can lead. Read Vito Russo’s Why We Fight speech from 1992 that rings true today about why we need to both fight for health justice but also take down the system that creates the injustice in the first place.

And for those of us who are white, we need to be absolutely vigilant in understanding our deep, internalized supremacist behavior. Talk less, listen more and take our limited energy to first understand what it means to resist white fragility and supremacist behavior in our movement work. It is difficult and it is essential. And there’s tons of resources for this out here right now.

#MEAction: What do you think straight and or cis people in the ME community can do to be more inclusive to LGBTQ+ people with ME.

JD: Well, the first question I would ask is “What does inclusion mean?”

I have no desire or need to be included by straight or cis people in their culture or lives. What I need is inclusion when it comes to access to medical care, and the means to live a life with joy and dignity.

Particularly when I look at all that some straight cis women have to go through while living with chronic illness, in terms of a fundamental lack of understanding or help from their male partners or relatives, it’s very sobering in terms of what our societies have to learn about true equity, and how much gender bias remains at the heart of so much transphobia and homophobia — because deep down, many men fear a change in understandings of gender because they are terrified of losing any ounce of male privilege.

I have no desire or need to be included by straight or cis people in their culture or lives. What I need is inclusion when it comes to access to medical care, and the means to live a life with joy and dignity.

So one thing I think is fundamental for straight and/or scis people to understand is that many of us have no desire for acceptance from you, nor do we wish to just merge our lives and your culture.

We want to live free of violence and discrimination, as our true selves as we understand ourselves. And the structures of our families, our communities, may look a lot different than you may think. And you may have something to learn from it.

There’s such a massive need for a drastic increase in the research and medical care that will help us regain or preserve our health as people living with ME. Yet those of us who are queer and trans people may carry the additional burden though of pre-existing disregard and discrimination in medical settings.

In addition, we know that trauma and stress can create or exacerbate illness and suffering. And for many LGBTQ people, especially those who are often criminalized just for existing, like Black trans women, the very fact that we have ME may be related to the multiple traumas of living in the society.

So in order to be inclusive in the ME movement, consider what are the structural factors that may predispose some people to illness, or to underdiagnosis or misdiagnosis, or lack of access to care, and recognize that we need to realize these are ME issues as well.

#MEAction: Can you talk about your work on The Cranky Queer and with The Body Politic?

JD: Chronic health conditions affect as many as one of every two people in the United States, and many of us live with multiple diagnoses. To live our best lives, we need clear information and a compassionate connection. But — despite the prominence of battles over health care in the United States, a burgeoning “wellness” industry, and heightened concern over pain management and the opioid crisis — the way forward for those of us living with major or multiple chronic illnesses remains shrouded.

That’s why I think we can and must become “illders”: wise elders of any age who turn the demands of living with chronic conditions into opportunities for self-knowledge, growth, and connection.

I don’t want to trust my life to digital health information reliant on pharma marketing money. Essential, honest and practical advice and support for living with chronic illnesses can be hard to find, despite a deluge of condition-specific and medical websites, direct-to-patient pharmaceutical advertising, diagnosis-based support groups, and social media chatter.

The confluence of narrowly-defined medical specialties; the market interests of drug companies, medical insurance, and health care providers; and economic and social divisions and inequities ensure that many of us remain isolated and ill-informed — and just plain ill. 

So that’s why I started Cranky Queer and why I’m working on a book called The Cranky Queer Guide to Chronic Illness! So we can share our illder wisdom!

I feel it’s important to use the skills and follow the passions I have, so when the COVID-19 pandemic was approaching, I wanted to see what I could do. And I learned about Body Politic, a health justice group that was started by two young queer women who then experienced prolonged COVID-19 symptoms. So they started an online support group and I saw thousands of people coming together to share their experiences and it reminded me of ACT UP. I ended up joining a research team of COVID-19 survivors that collected data on members to validate their experiences. It’s so important to realize that those who control the questions we ask in research are the ones who control the answers, and for people to organize to fight for the research we need, not just that that serves profit-minded drug development. In this case, the very realities of millions of people worldwide experiencing prolonged symptoms are at risk of being ignored or minimized, and we know that some are at risk of developing chronic conditions like ME that can be triggered or worsened by inflammatory processes and/or damage from acute viral illness.

We can and must become “illders”: wise elders of any age who turn the demands of living with chronic conditions into opportunities for self-knowledge, growth, and connection.

#MEAction: Can you speak to the direct action of the HIV community and how they fought for research funding? What should we learn from that?

JD: I could speak about it forever! But since I’m typing and it hurts to type, I will say what we should learn is that people can change the entire system of how treatments for a disease are developed, and in doing so, save millions of lives.  And that doing so takes persistence, creativity and love for each other to see it through. 

Also, to get the gist of the science enough to change and improve it doesn’t mean being a scientist – I didn’t study science past the 11th grade but was able to contribute to world-changing efforts as a “external expert” advisor to NIH because of what I learned in the HIV movement from my other non-scientist comrades and from scientist and clinical allies. 

We also should note that the victories in some of the struggles happened because it was in the interests of drug companies to get their medication on the market faster — that is to say, it was still an incredible movement victory, but we need to recognize that in many ways it supported for-profit medicine than opposed it.

That’s why we still have people in the US who can’t get the HIV medication they need, in addition to so many people worldwide. That’s why we have had incredible breakthroughs in HIV prevention, where we now know that taking some kinds of HIV medication can actually prevent you from becoming HIV positive – but the newest version of it wasn’t even studied in cis women or trans men because we’re not considered a big enough market.

So — fight for what you need, and recognize that those who are your allies today may be the ones you have to take down tomorrow if you truly want your victory to lead to a better life for all who need it. We can win battles in the war, but unless we shift racialized capitalism, we’re going to have to fight the same fights over and over – you can believe that there’ll be profiteering off any treatments found for COVID-19 unless a massive movement prevents that from happening.


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#MEAction Scotland responds to the updated Scottish Good Practice Statement

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