Looking Ahead

So many issues, so much crip frustration.

The First Four Months on Substack

I moved over to Substack from Medium in August 2023. Recently, I described the difference to a friend as Medium feeling like high school and Substack feeling like college. (No intended criticism of Medium. From my reading, I think the writing on Substack, in general, is a cut above what’s happening at Medium.) Sometimes, on Medium, it felt like people were writing repetitiously to have a longer reading time for the payment calculation.

I have 89 followers on Medium, many of whom started following me after I stopped posting there. At Substack, I have 59 subscribers, 3 of whom are paid. I am happy with those numbers, but I wish I were at 60—for reasons that elude me, 60 seems better than the odd number of 59.

Nazis? I hate those guys.

A couple of weeks ago, I decided not to enter the fray about the controversy about Substack hosting some objectionable writing/writers. I have opinions, but I guess I think that one will encounter writers with bad intent wherever one goes, and I choose to ignore them. If I thought they were being promoted in some way, that would be different.

Juggling Many Balls

The thing about writing about disability-related issues is that there are many interrelated aspects to writing about applicable civil rights law and “the inner game of disability”—how you think about your disability (ies) or others’ disabilities. Then there are the endless logistical and practical matters related to disability: insurance of various flavors, disclosure of disability information, buying and maintaining disability-related equipment, accessibility at home and out in the world, travel, employment, personal care assistance, housing… All the things that non-disabled people have to think about, but with an extra layer (or multiple extra layers) of things to think about because of the disability.

There are also rage-inducing issues around the current DEI (Diversity Equity Inclusion) programs happening at schools, companies, and the government that mostly forget about including PWD (people with disabilities) in their “inclusion” programs. COVID-19 and the subsequent remote work culture brought to the fore the lack of thought about how remote work opportunities could benefit people with disabilities.

It’s All About Me

I also want to write about my life and my disability-related experiences. Arguably, all of my experiences are disability-related since epidermolytic ichthyosis is something I lead with, like it or not. The trick is discerning when it is a causative factor in what happened and when it isn’t.

Part of the reason I want to write about my childhood and special education is that I don’t want young people with disabilities to forget how it used to be. Anyone who has never experienced segregation based on their status needs to remember how it was for the people of their tribe who came before them. I do think of people with disabilities as my tribe. With people with visible disabilities, I feel a particular kinship as we have so many experiences in common, regardless of where we come from.

Speaking of My Tribe

Over your Winter Break, if you have one, I encourage you to watch “Crip Camp” on Netflix. It is a documentary about the Independent Living Movement and the leaders of the Disability Rights Movement—there are lots of crossovers there. “Crip Camp” won multiple Oscars, and deservedly so.

I was slightly too young (and too sheltered) to be in the group portrayed in “Crip Camp,” but I met some of them, and I stand on their shoulders.

But, but, but—I don’t want anyone to get the idea that we all (people with disabilities) know each other or like each other. I have plenty of snark in reserve for some people you might think I admire, and I am not afraid to use it.

2024

2024 is going to be a thrill ride. Rest up and get ready to mobilize democracy, whatever that looks like for you. When the Orange Menace was elected, I predicted terrible consequences for students with disabilities, and sure enough, Betsy DeVos did some damage. If the OM returns, I have no doubt he will wreak havoc on the disability community along with everyone else.

If you are one of the writers on Substack with a much more significant political reach than I have, please remember to include PWD when discussing issues in which people will be disadvantaged WITH INTENT by the OM.

Most people will experience disability at some point, whether as a function of age, accident, or illness. I am here to help you with any information, philosophy, or unfettered ire that might come in handy. Happy holidays!