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A year ago, I told a friend, “I’m so tired.”
She responded, “You’ve been doing this a long time, you deserve to retire.” We were talking about my advocacy and activism work.
I began this kind of work — committee and board membership, writing, speaking, tweeting, legislative advocacy, and more — in 2013, when I was diagnosed with axial spondyloarthritis (or ankylosing spondylitis or AS). Most of the advocacy and activism work I do is unpaid.
“You’ve been doing this a long time,” my friend said. Her words were unexpected, and yet I was surprised by the truth and timeliness of it. It hadn’t even occurred to me that I could, in fact, look back on over a decade of successful work for the community and call it a full career to be proud of.
In disability years, at the age of 37, I’m somewhat of an elder since disabled people tend not to live long lives. And, in disability world, more than a decade of activism is worth a lifetime. As someone who has done this lifetime of work, especially after the rampant pandemic ableism of the last four years, I indeed deserve a break.
This is in sharp contrast to early 2020, when I had just begun working on my memoir in earnest and was preparing to pitch myself for higher-paying speaking gigs. At that time, I felt I was hitting my prime. I was even part of early COVID-19 advocacy efforts, including being one of the creators of the #HighRiskCOVID19 hashtag.
Four years later, I have lost the desire and motivation to write regularly, much less work on my memoir. The sudden phasing out of many remote engagements after the pandemic was declared “over” has removed access for me to be a regular paid speaker in most settings. Many conferences I attended annually have shut their virtual doors, leaving me unable to attend and make a difference.
Burnout caught up with me to the point where I had no choice but to just stop … doing.
Stepping Away from Advocacy
I have pulled way back on my public-facing work. This hasn’t been the easiest for me to do for many reasons. Here are a few:
- My public-facing advocacy makes a difference; I know from the countless people who have told me I’ve helped them in some way or another.
- My work to make lives better for disabled people, especially queer disabled people, motivates me to keep living because it gives me a purpose and a direct connection with peers around the world.
- Although it should never be a driver, my public-facing efforts indirectly help to supplement my poverty-level social security disability insurance income.
Letting go of many of the activities I’ve mentioned, while maintaining some behind-the-scenes roles I’m not ready to give up, has meant that I have lost touch with a lot of the community conversations and actions that were once central to my days and nights — and I have lost income opportunities.
My budget is stretched to the limit. I don’t know what’s happening on disability Twitter (X). I don’t know the latest intercommunity drama or ableist news piece. I don’t even know what’s happening in the news half the time. I just do not have the capacity for it.
There’s no room in my brain, my body, for the excess buildup of issues I officially reacted to or responded to during the height of my advocacy.
I’m slowly accepting that perhaps I am stepping away from the constant responsibility of being a notable disabled person — essential, a brand. This includes being a go-to for commentary on anything and everything from COVID-19 to ableism to the impact of genocide and war on disabled people, health care access, clinical research, scientific articles, and even topics like cats and plants.
I feel unmotivated and frankly ineffective as a disability advocate and activist. I just cannot find it in myself to keep pushing.
Much of the work I did in 2019 now feels obsolete, undone, no longer relevant — even redundant. What seemed achievable back then now feels decades away. We have backslid into a world that is even more unsafe, more inaccessible, to disabled people than it was pre-COVID. The world is a different place, not solely due to COVID-19 itself, but largely because of the public health response, which has heightened ableism and everything that comes with it.
Do I have it in me to adjust to the new genre of activism, versus what it looked like five years ago? I don’t think I do. I’m tired.
Surviving the New Era of Ableism
I’m not just tired from my own work as a D-list public figure. I’m tired because just surviving has become harder than before.
The world has become a more dangerous place because of the risk for anyone to develop long-COVID after a COVID-19 infection; but it’s especially unsafe for disabled people for whom almost all public (and many private) spaces are inaccessible without mask mandates and effective ventilation.
I continue to put on an N95 mask every time I open my front door to get mail or packages. I order overpriced curbside pickup groceries because It’s unsafe for me to enter the discount grocery store where my food stamps used to stretch all month. I see selfies online of people in crowded spaces with not a mask in sight. I hear people outside bark that wet, ragged cough. My rheumatologist, who prescribes my immunosuppressive medications, advises me to avoid infection risks, and yet said he would discontinue my medications if I didn’t agree to an in-person visit. Thanks to intense self-advocacy, I managed to keep appointments virtual.”
As I write this on the last day of April, I am a day away from losing access to affordable internet due to Congress defunding the Affordable Connectivity Program (ACP), which has allowed upwards of 23 million Americans experiencing poverty pay as little as $0 for internet, including me.
I am tired — in all of the ways a person can be tired. I’m fatigued mentally, physically, spiritually, financially, globally.
Transitions and Finding Meaning
I promise this isn’t a defeatist essay; stay with me. Burnout has created what seems to resemble a midlife crisis, or a questioning of everything I’ve done and will do as well as the meaning of life and the meaning of my life.
The biggest questions I ask myself these days are:
- Where is there room for me?
- What does my life look like now if I do retire from advocacy?
- What if I become a nobody; am I OK with that?
- What’s next?
Where is there room for me?
When burnout meant bursting with exhaustion, malaise, and hopelessness, my body-mind-soul forced me to refocus on activities of daily living. Food. Rest. Medical care. Bathing. Caring for my cats.
Burnout has opened space to look at who I am outside of advocacy. It has made room for me to discover what I want this next part of my life to look like. I’m learning to see this as an opportunity and not a failure.
What does my life look like now?
I decided to refocus my “extra” energy on my friendships before I attend to public advocacy. And I’ve found spaces where I could remove my advocacy hat and just be… me, and where I could even meet new people and make new friends. Spaces like weekly virtual hangouts or monthly hangouts at a local park for people who are still being COVID cautious.
I text with friends daily now about the mundane things: what are our cats doing? What’s growing in my garden? What did I eat today? Did I take my meds when I needed to? What are my friends up to? Did they take their meds? Have they eaten?
I am also reading books again after a decades-long break. I’m loving entering the fantasy worlds of fiction, the personal world of memoirs, and the occasional book about botany or history.
I have four cats again (having recently adopted another kitto from my backyard) and I love their antics and personalities. I requalified for in-home supportive services (IHSS) and hired a care partner to help me accomplish chores, cook, and support me in other ways. I’m spending a lot of time making sure my garden is successful so that I have access to fresh fruits and vegetables.
I’m re-establishing daily routines that help my autistic body-mind function better, and I’m finding joy in stimming and planning my days.
What if I become a nobody?
Eleven years is a long time to do disability advocacy and activism. It takes a lot out of you.
First, doing advocacy while living in a body-mind that experiences functional limitations, unrelenting pain, and executive dysfunction is a lot. Second, I can’t separate my personal life from my professional life. Being an activist while living the story you’re fighting to get recognized is more than a job or a role. It is what you live and breathe. There is no break, no vacation from a disabled advocacy existence. As soon as you share your reality, you are sharing the reality of many people whose identities are inherently linked to political issues simply by being born with or acquiring disability.
I’m at the point where I’m beginning to accept that being tired is a sign that I need to rest for as long as it takes to become the somebody I need to be — whether that is a return to full-fledged activism in the public sphere or a nobody with an overgrown garden and four fluffy cats for whom I would do anything. And I’m OK with waiting.
What’s next?
For now, I’m taking it slow and learning what should (and should not) remain on my plate.
I’m focusing on maintaining close friendships with people who are still taking COVID-19 and other airborne viruses seriously and making new friends with COVID cautious people.
I’ve been puttering around my house that remains somewhat unpacked after moving in five years ago, finding places for some things while getting rid of others. I’m reading books. I’m digging in the soil and watching new growth happen in my garden. I am enjoying not having much responsibility for the first time in my life. I wouldn’t call it leisure because every day is a fight to survive systemic inequalities and my own body, but I do acknowledge the relief of what resembles a break from the constant go-go-go that my life has always been for one reason or another.
Am I ready to retire from what I’ve been doing for over a decade? I don’t know. Maybe. I’m learning to be OK with that: not knowing. I’m learning to live in the moment, for today, and to be OK not making a difference except for in the lives of my friends, cats, and plants. That’s meaning enough. For now.
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