A year ago, I told a friend, “I’m so tired.”
She replied, ‘You’ve been doing this for a long time, you deserve to retire.’ We were talking about my advocacy work and social activism.
I started doing this kind of work (serving on committees and boards, writing, speaking, tweeting, legislative advocacy, etc.) when I was diagnosed with axial spondyloarthritis (or ankylosing spondylitis, AS) in 2013. Most of the advocacy and work I do is unpaid.
“You’ve been doing this for a long time,” my friend said. Her words were unexpected, but I was struck by how true and timely they were. In fact, I never thought I’d be able to look back on more than a decade of successful work serving my community and call it a fulfilling career to be proud of.
In disability age terms, at 37, I’m somewhat of a senior citizen, since disabled people don’t tend to live long. And in the disability world, 10+ years of activism is a lifetime’s worth. As someone who’s been in this lifelong work, I certainly deserve a break, especially after the last four years of pandemic-induced ableism.
This is in contrast to early 2020, when I was beginning to seriously work on my memoir and preparing to apply for more lucrative speaking engagements. I felt like I was hitting my peak. I was also participating in early COVID-19 advocacy efforts, including being one of the creators of the #HighRiskCOVID19 hashtag.
Now, four years later, I have lost the drive and motivation to write regularly, much less the energy to write my memoir. After the pandemic was declared “over,” many remote conferences were suddenly phased out, leaving me unable to give regular paid speaking engagements in most settings. Many conferences I attended annually stopped running in a virtual format, removing my ability to participate and make a difference.
I was so burnt out that I had no choice but to quit.
Withdrawal from advocacy activities
I have significantly reduced my public appearances, which has not been easy for me for many reasons, some of which are listed below:
My public advocacy makes a difference. Countless people have told me that I’ve helped them in some way. My work to improve the lives of people with disabilities, especially queer people with disabilities, is what keeps me going because it gives me purpose and allows me to connect directly with allies around the world. While it should never be a driving force, my public advocacy indirectly helps me 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 that I don’t intend to give up just yet, has removed me from many of the community conversations and activities that were once the center of my days and nights, and has also removed me from income opportunities.
My budget is stretched to the limit. I don’t know what’s going on on Disability Twitter (X). I don’t know the latest drama between communities or ableism news. I don’t even know half of what’s going on in the news. I just can’t afford it.
There is no room in my brain or body for the accumulation of excess issues that I was officially reacting to or responding to during my time as an active member.
Maybe I’m slowly accepting that I’m stepping away from the constant responsibilities of being a prominent disabled person — an essential brand — which includes being the go-to source for commentary on everything from COVID-19 to ableism to the impact of genocide and war on disabled people to access to healthcare to clinical research, scientific papers, and even topics like cats and plants.
I feel demotivated and quite frankly powerless as a disability advocate and activist. I just can’t find the strength within myself to keep going.
Much of the work I did in 2019 now feels outdated, unfinished, no longer relevant, even redundant. What seemed achievable then now feels decades away. We are returning to a world that is even more dangerous and inaccessible for people with disabilities than it was before COVID-19. The world has changed, in large part because of not just COVID-19 itself, but because the public health response has intensified ableism and all that it entails.
Do I have the ability to adapt to a new genre of work compared to five years ago? I don’t think so. I’m already tired.
Surviving a new era of disability discrimination
I’m not just tired of my job as a D-class public figure, I’m tired because surviving is harder than it used to be.
The world has become a more dangerous place because everyone is at risk of developing long COVID after contracting COVID-19, but it is especially dangerous for people with disabilities, who find nearly all public spaces (and many private spaces) inaccessible without mask mandates and effective ventilation.
I continue to wear an N95 mask every time I open my front door to receive my mail or packages. I order overpriced curbside pickup groceries because it’s unsafe to go into the discount supermarket where my food stamps were spent for a month. I see selfies online of people not wearing masks in crowded places. Outside I hear people coughing wetly and harshly. The rheumatologist who prescribes my immunosuppressants advises me to avoid risking infection, but says he will stop giving me the medication if I don’t agree to a face-to-face appointment. Thanks to my enthusiastic advocacy, I’ve been able to continue my appointments online.
As I write this at the end of April, I am one day away from losing access to affordable internet because Congress has defunded the Affordable Connectivity Program (ACP), which means that over 23 million Americans living in poverty, including me, will pay as little as $0 for internet.
I am tired. Tired in every sense a person can feel: mentally, physically, spiritually, financially and globally tired.
Change and finding meaning
I promise this is not a defeatist essay, so stick with me until the end. Burnout produced something of a midlife crisis, a questioning of what I had done, what I was going to do, and the meaning of life and what my life was about.
The biggest question I’ve been asking myself lately is:
Where do I belong? What will my life be like when I retire? What will happen if I fade into obscurity? Is that okay? What’s next?
Where is my place?
When burnout filled me with feelings of fatigue, exhaustion and hopelessness, my body, mind and soul forced me to refocus on the activities of daily life: eating, resting, medical care, bathing, caring for my cat.
Burnout has given me the opportunity to look at myself outside of my activities and give me the space to think about what I want to do with the next phase of my life. I am learning to see this as an opportunity, not a failure.
What is my life like now?
Before I committed to public advocacy, I decided to refocus my “extra” energy on friendships and found places where I could take off my advocacy hat and just be myself, and where I could meet new people and make new friends, like weekly virtual meetups and monthly meetups at a local park for those still being cautious about COVID-19.
Now I text my friends every day about everyday things: what are my cats doing? what’s growing in the garden? what did I eat today? did I take my medicine when I needed to? what are my friends doing? did they take their medicine? did they eat?
I too am starting to read again after a decades-long hiatus. I love the fantasy worlds of fiction, the personal worlds of memoir, and the occasional book on botany or history.
I also have four cats (and recently adopted another one from our backyard) and love their antics and personalities. I recertified with In-Home Support Services (IHSS) and hired a care partner to help with housework, cooking, and other aspects of my life. I spend a lot of time making sure my garden is thriving so I have access to fresh fruits and vegetables.
I find joy in restructuring daily routines, providing stimulation and daily planning that help improve the physical and mental functioning of my autistic child.
What would happen if I became an unknown?
Eleven years is a long time for disability advocacy and activism. It takes a lot of hard work.
First, it’s exhausting to do advocacy while living with a body and mind that experiences functional limitations, constant pain, and impaired executive function. Second, you can’t separate your personal and professional lives. Being an activist while living a story that you’re fighting to be recognized isn’t just a job or a role; it’s something you live and breathe. There are no days off or vacations in disability advocacy. As soon as you share your reality, you are sharing the reality of so many people whose identities are intrinsically tied to political issues simply because they were born with or became disabled.
I’ve started to accept that being tired is a sign that I need to take time off to become who I’m meant to be, whether that means a full-fledged return to public life or an unknown with an overgrown garden and four fluffy cats for whom I’d do anything. And I’m okay with waiting.
What’s next?
For now, I’m just taking it slow and learning what to leave (and what not to leave) on my plate.
I am focused on maintaining close friendships with people who still take COVID-19 and other airborne viruses seriously and making new friends with people who are COVID-cautious.
I’m wandering around my house, which I’ve barely packed since moving in five years ago, finding space for some things and getting rid of others. I’m reading books. I’m digging in the dirt and watching new plants grow in the garden. For the first time in my life, I’m enjoying not having many responsibilities. I wouldn’t call it leisure, since every day is a battle between institutional inequality and my own body, but I do acknowledge the relief of having a little time away from my life, which for some reason has always been busy.
Am I ready to retire from a job I’ve had for over a decade? I don’t know. Maybe. I’m starting to get comfortable with not knowing. I’m starting to get comfortable with living in the moment today, and not needing to change anything except the lives of my friends, my cats, and my plants. And that’s enough. For now.
Get free coronavirus support for people with chronic conditions
Join the Global Healthy Living Foundation’s free COVID-19 support program for people with chronic illnesses and their families. We provide updates, community support, and other resources specific to your health and safety. Join now.