Moving with, instead of around
Avoiding the urges to please others
I was hanging out with my friend Sage, and we were airing frustrations about ableism we’ve witnessed. They asked me, “why do people just assume we haven’t advocated for ourselves in moments of mistreatment?” to which I responded something along the lines of, “because I think the majority of people who aren’t Disabled assume that once you advocate for yourself, you just magically get the problem solved, when in reality, it can be more rare than we’d wish.”
We keep getting fed these stories about activists who advocated for their rights chalked up into bite sized pieces that gloss over years of their work. The years of their work, isn’t a profitable story. People want success stories. These quick fix advocacy stories tricked me too, they didn’t show the pitfalls of self advocacy. They didn’t show the relationships I’d lose or the mental toll self advocacy would take on me. They made me believe that just because I’d advocate for myself, that I’d be satisfied with the outcome of my efforts.
Disability Pride Month was a doozy. I finally talked about having a near-death experience. I, for the first time ever, called somebody Ableist when I was witnessing ableist behavior toward me in a professional setting. I continued to see a deep lack of care regarding the COVID surge we are still in. While I am nowhere near a sports fan or enthusiast, it was fascinating to watch how COVID had been handled during the Olympics. A physical manifestation of avoidance is playing out on the world stage. The avoidance of constant mass Disabling events around the world only gets louder.
In the exhaustive remnants of Disability Pride Month, I received an email from a well-known cash cow of a corporation asking me to contribute free art for them to celebrate October’s “Disability Employment Month.” The irony of asking for free labor from a company that knowingly makes billions to show that they pay Disabled people was comical. Yet, I am in a space of deflation. So I just simply declined, instead of trying to communicate why what they were doing, was counterproductive to what they were trying to uplift. Even with advocacy, there may be times we have to pick and choose our battles for the sake of rest.
Building up the courage to advocate for ourselves can take a lot out of us, and then actually consistently doing it is a whole other mammoth. Currently, I’m experiencing self-advocacy burnout.
I think back to when I started to be more vocal about self-advocacy. I think about the messy baby advocate I was in my mid-to-late twenties. I was getting attention on social media talking about these things and thus felt this meant I should start calling people directly in. If I saw one tiny smidge of inaccessibility, I’d try my damndest to call people in about it. It was a blessing and curse. I put myself on a higher horse than I needed to be.
Certain relationships in my life ultimately ended for the better, but at the time, it felt painful because I asked others to be more accessible with what they were sharing in the world. I saw soon after how I didn’t have to be everyone’s teacher. I acknowledge now, too, that not everyone is going to be receptive to my input, regardless of the relationship history. I see how these people really didn’t see me as a Disabled person.
Moments of rest after a period of consistently advocating for myself can sometimes feel like watching the debris settle after a storm as I figure out what to pick up and what to leave behind. As I’ve been resting, I caught COVID for a second time. This felt like a huge blow as I had just finished getting discharged from Physical Therapy due to my Long Covid symptoms. Tending to my body delays so much. Tending to bodies that need care, delays so much. I see so many stories about how these Olympic athletes are “overcoming” so much in spite of having COVID or having had it, and yet, they literally are collapsing right after their grand participation.
Anytime somebody says I have “overcome” so much, I frankly roll my eyes. I work with my body and adapt; I don’t overcome it.
To overcome something, for me, would mean for me to ignore my body for the sake of pleasing others. These narratives of “overcoming” can pressure many people to push their bodies instead of honoring where they are. How I would be put in really uncomfortable scenarios while painting murals for the sake of trying to make a living. I remember when I was in the ICU, after almost dying, how I was still doing client work for a deadline that ultimately fizzled out.
While quarantining, I had been working on some longer-form client projects but got pretty stressed about the tight deadlines I was facing from other projects. On top of deadlines, I was also preparing to paint at a mural festival in just a few weeks. I had this whole plan for the mural, a message I really wanted to share. I kept trying to bargain with myself about how I’d finish the deadline or still show up at this mural festival to paint. I then continue looking at all these reactions to the Olympic athletes. I kept asking myself who was this for: my ego or my spirit? The ego in me kept feeling louder, it was pushing me to a temptation of moving past my body’s capacity.
I don’t want to inspire people to ignore their bodies, I would rather inspire people to listen to where they are at and truly follow their body’s needs. I want my Disabled body to sustain as best as it can, to have longevity enough to share things in my own time rather than feeling pressured by external forces.
Businesses want to do all this work, to look like they support diversity, and yet they don’t embody true support. They don’t take hints that we may need time to rest when it’s communicated we’re in active crisis, they may want free work from you during a time that promotes paying you, they may be funding things that are actively causing others in your global community deep harm, they may ask you to show up in spaces where they aren’t even taking the precautions to genuinely look after your well being.
Support to me, would look like receiving the necessary tools and accommodations to thrive instead of being left to barely survive for the sake of symbolic gestures. This isn’t to say we shouldn’t advocate for our needs, we must and it’s important to share when things didn’t work out, with our community. I can’t do it all, I don’t want to do it all, I am just one of the many beings who are in this world and through the culmination of our collective voices, I believe we can create a world where access needs are met with greater attention and ease. Advocating for ourselves isn’t some quick fix thing, it’s a life long path. It’s a journey where, the more people you share it with, the louder our collective voices get.
What would your life look like if you really honored where your body is at, at this time?
How can you communicate your capacity to your loved ones?
Are there any adaptations you need to make for your body to feel more comfortable?