I started engaging with the disability community when Atti was a toddler. It was starting to become clear that he was going to be significantly impacted by Cerebral Palsy and my work as a community organizer showed me that if you need to meet some needs you should talk to the people directly affected. So I got online and started finding mentors. Some of those people are now my friends, many have been bullied off of social media altogether, many more were community members I spoke to once and we never crossed paths again. The disability community is a large, churning, undefined group of people united by trying to survive in a society that doesn’t treat us like we should. There is sometimes conflict over competing access needs or scarce opportunities, but on the whole it is such a beautiful, generous, compassionate place to be.
As Atti got older and we learned about his autism, we already had mentors in place who have given me such tender support, showering me with love and gratitude for even considering their point of view. They have helped me avoid so many mistakes that would have harmed him and our relationship so much.
Eventually I realized that the term ‘Disabled’ applied to me too. I had a lot of cultural messaging to overcome around what disability looks like, and internalized ableism to deal with to accept that this is my reality. The disability community has saved me and sustained me on my own health journey. For years as I recovered from one surgery or another, my companions were other disabled people on social media, also laid up, also cut off from society and trying to find value in our own kind of life. I feel like the dolly on Rudolph’s Island of Misfit Toys.
My experiences with disability have given me such a different viewpoint on the world I struggle to understand people sometimes. “Oh, you’re surprised by tragedy? I’m surprised by your surprise. Did you think you were immune?” Or, “Oh, that’s right. You still think you have control.”
Our world works very very hard to keep disability segregated. Power does not like to have the consequences of its actions visible. I don’t blame anyone for being in denial or avoiding looking at certain realities, but I cock my head like a confused dog over that strategy being tolerable when there is action to be taken.
There are things we could be doing to change our circumstances. But only if we are willing to re-evaluate what we’ve been taught and then act accordingly. There is wisdom gained in this struggle that needs to be passed along to the next person engaged in their work towards liberation.
When society tells you there is nothing about you that is valuable, you need a new framework to build your life around. There are new lessons to learn.
There is no such thing as normal.
What passes for normal is just the version of humanity that fits into our current model of worker. It has changed over history and is changing right now. Even the people who appear normal are just hiding the things that deviate. Humans are wildly diverse. There are so many variables in our bodies and how they operate that the idea of normal is ridiculous on its face. The only thing that is normal about a human body is that it has needs.
There is no such thing as lazy.
There is personal choice, and then there are barriers. Some people are manipulative or selfish, sure, but those people don’t beat themselves up for being lazy, they’re just off happily doing whatever they want. If you are beating yourself up for being lazy that is a sign that you would do something different if it was within your ability to do so. What you have is a barrier, and barriers can have solutions.
Everyone is only temporarily Abled.
There is no way to get off this planet without trauma. There is no way to have a human body and have it function at peak performance at all times. That flies in the face of the entire human life cycle. Disability of one form or another comes for all of us. Health is not a moral choice or personal failing. It is a consequence of being human.
Difference is beautiful.
A friend was talking about her non-binary child and said, “I’m so grateful because my child has taught me how to love so many different kinds of people.” That is how I feel as a member of the disability community. I am not afraid at all to be different in any way I need to be, and I’m not threatened by the differences of anyone else. They are beautiful in the way mountains and skies and seas are beautiful. As a majestic feature of variety in our natural world.
Status and hierarchy are meaningless.
There is so much freedom in my position that occasionally I wonder if I think the disability is worth it. To be completely disengaged from beauty standards. To feel no competition with other moms, other women, no shame at all from comparison. It took being rejected from society, but I don’t even like society so…:shrug: People who get all puffed up with self importance are hilarious to me now. There’s no amount of money or status or high position in society that will help you when you are clutching the toilet bowl and praying for mercy. The reality of bodies can not be outdone by being the boss.
Our worth does not come from our productivity.
This is a lie we’re taught so we’ll keep working hard and earning rich people money. The lie goes so deep that when people become newly disabled they often experience a huge existential crisis. Their whole sense of identity was tied up in work and without that, they don’t know who they are. Our worth was never about our productivity. Our worth is inherent in our humanity. There are other unique factors – personality, talent, humor, care – that make people pursue relationships, but ultimately our value comes from connection. It comes from the love we offer to others, and the love we accept in return.
Your security is only found in community.
Sometimes when I start talking people want to chalk my viewpoint up to privilege and then I explain who taught me. I do not feel the way I feel about these things because I have financial stability. Financial security is an illusion. Stock markets crash, houses burn, savings get obliterated by medical bills. I learned these lessons from people who were in severe poverty. People as marginalized as its possible to get. People who know their safety isn’t in financial stability because they will never be allowed to have it. They survive because of community. They survive by banding together and showing each other the care they need from the world. We create our own little Island of Misfit Toys where we create our own rules to live by, based on what actually suits our needs and not the needs of the economy. We rely on each other. That’s where the real security in this world is.
When I got sick it was like I was kicked out of the Matrix. I didn’t choose to take a pill, the Matrix spit me out as unusable and now I’m trying to offer the pill to the rest of you. Now I just see fictions everywhere I once used to see standards. It’s all made up and we are paying such a cost. There is a way to free your mind from the shame and fear that keeps us grinding our own bones into bread. You do it by changing what you value, and offering the same care and grace you want for yourself to those in your community