Because I live in Disability World – the place where people with disabilities are exiled to so that society doesn’t have to think about us – I come at things from a different perspective than non-disabled folks. I do not have the expectation of health or ability. It is never far from my thoughts that we each get sick, we each get injured, and we each die.
So when I see someone reacting to these normal life circumstances with surprise, it surprises me.
I forget that a lot of people believe that our bodies are in our control. They believe that any bad health outcome is due to a bad choice. They react to sick and disabled people as if we are sinners or criminals who are just reaping the consequences of our immorality.
Someone makes a comment judging someone else’s diet or their care habits and I recoil in shock. They express betrayal at their body changes and I am brought up short. I forget that so many people haven’t had life experiences that show the messaging we get around individual responsibility and good health to be a lie.
For Atticus’s whole life we’ve spent several days a year at the local Shriner’s hospital. Some years it feels like we lived there. Atti has had many many surgeries there. More than most people will ever have in two lifetimes.
Shriners specializes in pediatric surgical needs and complex medical care. In the playroom you’ll see children with missing limbs, missing eyes, facial differences, and lots and lots of kids with burn scars. I love Shriners with my whole heart. It’s a holy place to me. The people that work there choose to work there as a calling. It is hard and vulnerable and heartrending work. I’ve heard for myself the children screaming during their burn treatments. I’ve seen children waking up from anesthesia terrified and in pain.
How could I continue to believe that health and ability were individual responsibilities when I have spent so many years watching children struggle? What have these children done to deserve this outcome? What could they or their parents have done to change things?
The fact of humanity is that we are born the way we are born, and that produces an enormous array of differences. Most of us have bodies outside the norm just because we were born that way, and a lot of those differences aren’t visible.
For a lot of recent history, a segment of science has believed that people can be bred in the same way as animals or pea plants. People adhering to this line of thought believed that “undesirable traits” could be bred out of humans, and this has led to some horrifying outcomes. Buck v Bell, forced sterilization, institutionalization, the Holocaust. People who had these traits were eliminated through campaigns of horror to keep them “out of the gene pool.”
This attempt to control the human gene pool is nothing more than racism and ableism. But as we have learned more about genetics we have learned that the scientific basis for these beliefs is false. Eugenics isn’t just bigoted. It’s bad science. Humans with tremendously complex systems aren’t pea plants. The more we decode about genetics the more we learn how little we know. And yet these beliefs persist – that not all bodies are good bodies, that any needs we have are a burden, that being useful to power is what earns you worth.
During my years of fertility treatments I went through a bunch of genetic testing. I remember sitting down with the doctor and genetic counselor as they gave me my results and offered me some education about what it all meant. Again and again they emphasized the randomness of it all. Which genes get passed on, how epigenetics determines which genes get expressed, which genes spontaneously mutate.
I said to them, “You know, the more I learn about all this, the more amazed I am that any of us are walking around.” Both the doctor and the counselor jumped in excitedly, “That’s what WE say!” The geneticist said that he often says that to families who have a hard time with their findings. Whatever turns up isn’t a failing, it’s actually NORMAL.
And all of that is just how we’re born. There’s still random accidents that can change our bodies forever. There’s disease we can’t mitigate. There are ways our bodies are wired to function – metabolism, energy levels, size, height – that we cannot change no matter how much work or money we throw at it.
Nothing about how our body functions is moral. It’s just how it is.
The reality of the human life cycle is this: We are born into a body in whatever assemblage of genes we get. We’re born into circumstances we have no control over, completely dependent on the people around us, and we more or less stay that way for the next 20 years. We stay dependent on people any time we get sick or injured, and then if we’re lucky we age and become dependent on people in our lives again until we die.
The human body comes with a built in planned obsolescence. We will all know an end, no matter how disciplined we are. Why do we live lives where we have to pretend what is true isn’t true?
I think it’s because, if you don’t live in Disability World, you can’t see what a disabled life looks like. We’re kept so segregated. If you can’t see us, you can’t be us. But you will be us one day whether you like it or not. And knowing that you will have this uncertain future you can’t imagine? It’s terrifying.
Most people are terrified of disability. They are scared of pain and limitations, of course. They are scared of other people’s unfamiliar differences. But they’re also scared for their own uncertain future. Who will love me if my body shows its differences? What will become of me if I become too disabled to work? This fear is mostly about scarcity. We are out here hustling to prove our worth to capitalism so we don’t get cast out. So we don’t lose the job, opportunity, or relationship. So that you don’t wind up in Disability World with the rest of us societal rejects.
It can feel like hating your body for pain or disability or an unruly appearance is logical. People actually are targeted or praised for their body. That’s a real thing about this world. You can’t really pretend that fat people aren’t persecuted. I’ve experienced it myself. When I went from plus size to straight size during a health crisis the change in how people treated me scared me so much it was hard to leave the house for a while.
If your body keeps you out of the highest circles of status, and in our society we’re taught that status is the thing that will save us, it’s the most logical thing ever to hate your body for keeping you from safety.
The thing is, status will not save you. That is the lie they sell to keep us hustling. Status can not protect you from the eventual outcome of this human experience. There’s only one way out, and we’ll all get there.
Status is not the same as safety – high status people still experience natural disasters, car accidents, violence, illness and death. Status is not the same as love – many many high status people do not know any warmth at all while many many low status people are enjoying beautiful relationships no matter how their body functions.You can learn to hate your body less if you learn that status as a goal guarantees you nothing. Safety, love, security, those are goals worth having. Status can certainly make parts of that easier to get, but none of it requires status to achieve.
If you believe, even subconsciously, that fat people aren’t worthy of love, you will hate any sign of fat on your body. If you believe that disabled people are burdens, you will hate yourself for every need or limitation you have. If you believe that genetics are a personal responsibility then you are setting yourself up to deal with all of your own hardships alone.
The reality of living in a body is that we will know pain, we will know disease, we will know limitations. It is part of the deal. All the declarations of self love in the world will not undo that, and ignoring reality is never going to bring healing.