I have a tendency to compare things that are not meant to be compared largely because, despite 24 years of disability, I still expect myself to do things like non-disabled people do. Invisible illnesses are confusing. Somehow 'looking fine' confuses my ability to accept that I have limitations.
But there's also a disconnect that non-disabled people have about what we can or can't do, just like when I told the wheelchair rep that I wasn't able to do my instrumental activities of daily living and she responded with, "I don't mean to be rude, but what do you do all day?" As if there is nothing more to a person's life value than whether or not they can do their own laundry or cooking. I know you're tired of me mentioning ableism, but it's no joke.
Would she have asked the same question of someone with what we see in our society as an acceptable disability? We are more likely to 'accept' a narrow group of disabilities like Down Syndrome or spinal cord injuries.
Because I can't do my instrumental activities of daily living, I struggle with the idea of independence and, until recently, I didn't have a space to explore that. What does it mean to be independent? The only definition I have had is to be like non-disabled people. I felt a lot of guilt about being able to sit and socialize with a friend, write, do RRR, but not cook or do laundry.
My previous counselor had an inability to understand my disability. When I said I struggled with feeling independent and what that could look like for me, she quickly said: "Why don't you learn how to cook? When I learned how to cook I felt so much better about myself!"
This was a huge fail on her part. And it planted an even deeper seed in my mind that the only way to be viewed as fully human or independent was to be able to do things like cook. I started trying to cook--and while I did enjoy it (when I was feeling better)--it took everything out of me and I often ended up sick by the end.
She failed to help me see that it's okay that I can't do these things. That needing help and support as a disabled person is part of my life experience. She failed to help me dismantle the ableist idea of independence.
The little voice in my head says: well, if you have energy to write or run Rowe's Research Runners, then you should be able to help more with the things Mom does, like cooking, laundry or other chores.
Um, why and how am I comparing cooking to writing?
These activities are not equal for anyone, but for my disabled body they are not even worth comparing.
Cooking requires standing, bending my neck forward, extended concentration, and general physical movement and strength.
Writing can be done in the comfort of my recliner, with one dog on either side of me. I don't have to battle feeling like I'm going to pass out, neck pain or other consequences of something like cooking. I can work on it in little bits and I can do it when I feel up to it.
What I do for Rowe's Research Runners can also be done from my recliner--I can have Zoom calls, write emails, create merch, etc. from my recliner!
I've spent so much time comparing apples to oranges. Comparing my disabled body to those with non-disabled bodies. How do people get so much done in a day? How is it so easy to do the laundry or cook a meal? Just because standing to cook doesn't create pain or other symptoms for my non-disabled mom doesn't mean it won't for me.
When it comes to certain tasks I'm not going to be independent and that is okay. Needing help doesn't mean I'm not fully human or capable of many things. Disabled people need support systems.
Most importantly, accepting what I can do, rather than obsessing about what I can't do has improved my mental and physical health. I'm challenging myself not to push so far past my limits that I'm even sicker. I'm working on accepting help from friends and asking for what I need (like for someone to do the driving or come to my house to save me some spoons). I'm focusing my energy on things I love like writing, RRR, time with the dogs, audiobooks and friends. I'm managing my own health, the dogs' health, my appointments, my relationships.
It's a process and there are certainly times I don't say what I need. Just the other day, I didn't assert that going out to eat lunch rather than get take-out was going to be too much for me. I paid the price.
When I accept where I am right now, there is so much more space living life this way. It is hard, but it is also a relief. When I'm not comparing apples to oranges, I can embrace my gifts.