What Am I Thinking?
The narrative I tell myself about myself.
Inspiration For This Post
The other night, I was doing my late-night reading of Substack when I came across this post by David Roberts: My Personal Myth. His post led me to these other posts: My Candor Writing About Wealth Comes With A Price, Dear David by Mary Tabor, and Dear David by Eleanor Anstruther,
In summary, all these posts are about the stories and narratives writers tell themselves about why we write and what we think we’re trying to accomplish. That is a very broad summary, and when you have the time, I encourage you to read all of those posts, all very thoughtfully and candidly written.
So, it got me thinking—what am I doing this for?
Money? - Yes and No. I hope to make enough to pay for extras at some point, but I don’t want to jump through the “How to Grow Your Substack” hoops to get more subscribers for financial reasons.
However, I would like to get paid subscribers who benefit from my factual, professionally garnered information regarding many things about disability:
academic accommodations
housing accommodations
employment accommodations
public accommodations
disability culture (not a monolith)
To this day, people with disabilities are asked to share their expertise for free. That needs to change.
Revenge? Yes and no. I want to tell plenty of stories about “them what did me wrong.” And “them that was shockingly incompetent—and did me wrong.”
I need to write more about my parents and my sister—the people I was around the most when I was figuring out how to be in the world,
As I learned in my life as an employee, it only takes knowing that you’ve helped (in a way that they perceive) a few people a year to feel like your efforts are worth it. I think that if I keep putting the information out there, the people who need it will find it (especially if I continue to get the occasional referral and recommendation.)
Historical perspective. Just as we know how the desegregation of black students happened—or didn’t—the desegregation of children with disabilities happened or didn’t. I do not want to write a dissertation on the topic; I want to write about how it was to be in the room during segregation. And what I learned from it.
Isn’t She Special?
So many Substackers say, at some point (or all the time), “I know I’m not special.”
I actually think that I am special. Statistically, if nothing else. My disability occurs in 1 in 300.000 births, and the degree of severity that I have is unusual. I had a segregated elementary school education but ended up with a J.D. Between my lifetime income and my education, I am guessing that I am in the top 1 percent of people with severe disabilities by those scales of measurement. I don’t think money and education buy me credibility in all circles—I know it did among some academics and some lawyers.
But if someone else calls me “special,” I am likely to become enraged.” Special—as in “special ed” and “special needs”—is often a coded way to write people off or put them in a very small box.
So, that’s what I am thinking—today. What are you thinking?
What strikes me is the expectation that one somehow needs to craft an argument for your wishes, desires and expectations. Why should anyone have to explain or apologize, write a proposal or mission statement to be allowed to exist in this world? And yet, that’s the reality. I agonize over whether or not I should monetize my Substack and if I do should I paywall some things or not, will I offend X or Y (I always have certain people in mind) and twist myself into knots over it. Insane.
You have a singular message and you put a great deal of energy and time into it. I respect and admire you, your work just leaves me in awe. It is worth far more than the amount I pay to subscribe.
It seems like the word “special” is just baked into the school ecosystem. My son teaches autistic children, but his degree is in special education. It gives him more options, but really. The term just doesn’t bestow dignity.
Anyway. Teri, I don’t know if I’m making sense here. I’m just grateful for your posts. I always look forward to seeing them in my inbox.
I appreciate so much how you’ve owned your being special. I especially think about all the intersections of your identity- not the least of which, being a woman - and how discouraged we are from speaking the truth about our positive self-estimation (I’m purposely staying away from the overused concept of self-esteem, because I think it’s been bastardized to hold very little meaning anymore).
Today I am thinking about stepping away from a few things that have been recovery related, in an effort to loosen my death grip on this overall recovery effort of mine. I’m tired and getting bored by it all, and I just want to experience the mental freedom of not thinking about it so much.