To preface this post, I’m sorry. I had hoped, by now, I could write something easier and more digestible; something that could get you all your two comments and we’d both be on our merry way. Instead you all have been subjected to learning about me, my family, and the things I keep in my mind whilst we are on this process of discussing the body. I hope you all don’t mind. 

To begin, as I’m typing this, I am racing through so many thoughts. I’m flipping through my journal, trying to string together thoughts to say. I want to talk about my family. I want to say how we never talk about chronic illness. In our home, it’s akin to cursing, to say you are sick and need care means more defeat than strength. As I was thinking about how to write something, I found a poem that gives me comfort, When You Believe Your Body is Your Enemy by Andrea Gibson. I could not tear my eyes away from these lines: 

The soul misses every single day the body was sick,the NOW it forced,the HERE

It built from the fever. Fever is how the body prays,

How it burns and begs for another precious day.

When I read it, I am reminded of the courage it takes to face illnesses; to persist regardless of ability.  I hope you can read this poem, and find something in it too. 

I am lost. I want so badly to live in this ideal world we create in class during discussions; radically shifting the nature of society. How nice would it be to have a campus built for accessibility: ramps instead of stairs, class preferences that work for everyone, universal understanding of neurodiverse needs. To know all the answers to everyone’s problems, to find ways to solve them. In our class world, spoon theory has no place; everyone has more than enough spoons to handle whatever it is they need and still have more leftovers. The dismantling of systems of oppression is done; everyone sings, and we all go home. The most unfortunate thing is, this is not reality. We all have to face it and go through; the important thing to remember is that we are all facing it and going through it. People are not as cold as we perceive them to be. There is light somewhere, if you’re willing to see it. 

I wanted to include here a note I had on Autism; A short defense of Applied Behavioral Analysis therapy. I don’t really care too much for the practice myself, but it is helpful. You do not typically take your child straight to ABA; they are tested, referred, and treated according to their individual needs. It is therapy like any other, and comes with all the same complications as finding an appropriate therapist and dealing with the burdens of insurance. It is easy to forget that not everyone knows as much as we do; it’s a privilege to be here in college with access to resources but parents need grace. To be in the process of unlearning harmful stigmas about their child, learning processes to better support them, amidst all the other things that come with supporting a child in one area of the spectrum is hard. It is daunting. I have watched it first hand, and support my own family in navigating this process with my own sister. I must reiterate it as many times as I can: this is hard, ABA is not the best, but it helps in treating severe functioning issues. Functioning, in my mind, is not exactly synonymous with normalizing. To be normal is to conform with societal standards. To function is to be able to take care of yourself and communicate your needs.