I've spent the past year with a counselor who is trained as a social worker. Instead of approaching problems from a personal level, she's focused on looking at the social and systemic issues at play. Why is a disabled person depressed? Do we label them with depression? Or do we focus on the systemic issues that keep them from being out in the world and the micro aggressions they face? This approach focuses on the system as the issue, not the disabled person.
As I've mentioned before, I landed on her couch last year exhausted and I couldn't figure out why. I had been hearing lots of stories about burnout in women and thought maybe that was what I was feeling. Instead, she explained to me that internalized ableism, microagressions from others, lack of support systems for disabled people, and an inaccessible world created this sense of exhaustion I felt.
Immediately, something inside me shifted--something that has needed to shift for years. She and I have spent a year getting me to a place of understanding how I can live as a disabled woman in an ableist world. What is so striking to me is that the internalized ableism I felt was so powerful that I couldn't see outside of it. I did not even know that what people were saying to me could be labeled as microaggressions. I was that immersed in an ableist world-view.
So why is ableism such a big issue? And why is ableism so exhausting to me?
My baseline is already exhausting. I have limited energy, short days, and limited things I can do. But, until I reframed things, I kept telling myself that I needed to be like non-disabled people (just like I mentioned in my Apples to Oranges post). Minimizing my illness by saying things like, "I'm just tired," meant that I would push past my limits, because the ableist world tells me that if I'm 'just' tired, I should be able to do more.
People who are just tired can get a good night's sleep, wake up refreshed and actually do the things they want to do.
If I'm expecting myself to be like a non-disabled person, my unreasonable expectations of my body leave me saying: Why am I so behind?
That spirals to every part of my life. Why can't I keep up with birthday cards to people? With texts? With picking up? With tasks of life? Why can't I bring a dish to the potluck just like everyone else? Entertain like others? Do more for others? Why can't my body be fit like others?
Really it was: Why can't I just be like non-disabled people?!
Because I couldn't be like non-disabled people, I made myself small. Disabled people are, after all, not exactly valued in our society.
For 24 years, I lived in this world of dissonance--one in which I was constantly questioning myself, not the system, that has created these expectations.
Once I saw how I was trying to live in this in-between space--between the kingdom of the sick and the kingdom of the well, how I was trying to pass as non-disabled to be socially accepted--I saw the unsustainability of it all.
It is 100% exhausting to navigate a world that is not made for me. It is exhausting to deal with microaggresions. The system makes being disabled exhausting.
It may seem counterintuitive, but ultimately, embracing my identity as a disabled person has freed up so much space in my life for me to be my authentic self. I still face the microaggressions, the lack of a safety net, the lack of accessibility. Those are no less exhausting to deal with. And internalized ableism runs so deep that every day it's a battle to remind myself which voice I'm hearing--the system or my own. I can still be angry and fired up about the injustices disabled people (and all marginalized people face). I can also continue to advocate for change.
But, I also know that it's on society, not me, to carry some of this weight I've been carrying for 24 years. And it's not on me to carry the discomfort of non-disabled people when they see me in my wheelchair, my collar, needing to sit down, asking for somewhere to put my feet up, or any other accommodation that helps me to be a part of the world.