On how ableism makes us forget that disabled kids grow too - even without interventions!
and 504 anti-trans lawsuit, the trolley dilemma, disability rights vs justice, self-driven YouTube reg, weekly routine boards
In this newsletter…
The 504 lawsuit is anti-trans, which is anti all of us (Feb 17)
On how ableism makes us forget that disabled kids grow too (Feb 16)
On weekly routine boards working when daily routine boards don’t (Feb 14)
The 504 lawsuit is anti-trans, which is anti all of us (Feb 17)
I think by now everyone knows about the multi-state lawsuit against Section 504, and if you live in one of those states you better be making lots of calls!
What I'm not seeing anyone talk about, is what my friend @nicky lovo read when she read the brief. They are suing about gender dysphoria being a protected disability under 504. They are making this about trans kids.
This was then confirmed by someone sharing an email from a Georgia official stating they weren't in this lawsuit (they are), but also that this wasn't about 504 and disabled kids, it was about gender dysphoria making it's way into the 504 (which they were unhappy about) thanks to Biden.
And this is why this isn't an autism space, it's a disability space. And it's a page about oppression. Because anti ableism IS racism IS transphobia. Not because "it's good to be intersectional", but because when we say we're not free until everyone is free we mean it literally. And we are going to understand that, in our bodies, in the next few months. Attack on trans people IS attack on disabled people IS attack on Black people IS attack on you.
I tried to find an article that at least mentioned gender dysphoria and I only found 1! It's surprising to me more statements against this aren't including the gender dysphoria piece, and my cynicism has me wondering if organizations are afraid to "get into the trans debate" so they're just skimming over that part? But ADDitude at least mentions it as the basis of the lawsuit!
The Trolley Dilemma and Authoritarianism (Feb 16)
I've been thinking and talking a lot about that Masha Gessen piece about not complying (and how easy it was for me, and my friends, to be thinking the opposite way... and how easy it probably is for so many well-intentioned people to think of the opposite way). Here's a comic depiction of how I'm now thinking about it!
On how ableism makes us forget that disabled kids grow too (Feb 16)
I’ve said it before but it still astonishes me! I wish people had said to us “if you do zero therapies and zero school, your kid will still grow and develop! In ways that absolutely nobody can predict, yes, but still grow and develop!” Not because therapies and school aren’t helpful! But because nobody thinks a non-disabled toddler is going to be stuck being a 2 year old forever unless they go to preschool - even as they may feel preschool offers some skills. They understand that a toddler will still develop and grow regardless. But they act like a disabled kid will be stuck as a 2 year old forever without interventions. As if disabled kids don't also develop.
Which is making this year, A- being 5, a year of constant astonishment and wonder for me.
The other day I was on a Zoom call with some other parents, and A- walked into the room. I thought “oh no, he’s going to close the laptop and make me put it away.” But instead he looked at Zoom for a minute, and then gently pushed the laptop back at me as if to say “ya I don’t want anything to do with this boring thing. You do it.” I was on that Zoom call for an hour!
Suddenly, he wears hats and mittens.
Suddenly, he puts his headphones on himself.
He understands “How about you eat some growing food before you eat more fruit stickers?”
He reads words.
He figures out how to rock climb. He must be watching us as we say words (without us noticing) and he's constantly improving his pronounciations.
His ready set go art keeps evolving so that now he's making each of us do different things at different times.
He makes jokes with his favorite thing to say - intersections and street names. Like he says "New York Avenue Avenue" and "New York Avenue AND New York Avenue".
He spills chickpeas out of his bowl, and then picks them up and puts them back! Something we've never asked him to do or told him about.
He can focus his body for a second when he wants to, like to tap a word in a book.
He's ok if the computer runs out of batteries and we have explain to him that it needs to be plugged in.
The past month Daniel had some minor health things that meant he couldn’t engage in play outside in the same way - no fast running, lifting, or going down the slide. A- got it and adapted. Just a year ago, we would have likely dealt with this situation by just not having Daniel go outside with A- because it would have been so hard.
He problem-solves like it's his job! Daniel explains they can't play Ready Set Go far away from the stroller, and A- indicates Daniel should push it. I say that I'm getting tired doing "run run run" and dragging him around, and he looks up at me and says "walk".
And this is all stuff that we've done nothing to work on - no IEP goals, no therapy goals. It's all A-. At best, what we've done is supported him in feeling safe to be amazing just as he is, set him up for success, and given him many, many options to fly.
It's not amazing that he's growing. It's amazing that I am so surprised. I don’t know if it’s because we were so focused on what we are and aren't doing to support A- through therapies, teachers, and socializing, that we forgot he’d be also just be supporting himself. Or if it’s because in the past year, so many acquaintances that don't know A- would say to me “Oh 5 years old is great because your kids finally become more independent", that it had me so focused on what would NOT happen at 5 years old, that I forgot that 5 would be monumental in A's own way.
Ultimately, it's because this many-lifetime-journey of unraveling my own internalized ableism didn't resolve itself in 3 years, so deep, deep down I still feel like disabled kids are broken, and broken things don't fix themselves let alone improve themselves.
And this is after really, really trying to do the work on my own ableism. It's engrained. I do the work not because it makes me perfect, but because imagine if I didn't......
So teachers, and therapists, tell parents "I'm so glad I get to help support your kiddo! And also know that they will grow in leaps and bounds even if I wasn't doing a damn thing." A- is growing and developing in his own ways, and it doesn't mean he isn't without challenges! Aren't we all! But for all kiddos, time shows what are challenges that do require some extra help, and what just changes as they grow.
Disability Rights isn’t Disability Justice (Feb 15)
Disability Rights and Disability justice often get mixed up, or misunderstood as the same concept. And given the past few weeks, it's important to understand how these are different. Because while laws and institutions (Disability Rights) are important, they are never going to lead to the liberation and humanity of disabled people - which is incredibly apparent right now. Also, they only serve some disabled people.
It's important to keep our focus on what the ultimate goal is, even as we fight to keep legal rights in this moment. A goal of humanity, not simply easily-lost-rights. And it's important to know that people are already leading this fight. This is why understanding the difference, right now, is so important.
Patty Berne, one of the creators of Disability Justice, says that the framework was a reaction to the way the Disability Rights movement “invisibilized the lives of peoples who lived at intersecting junctures of oppression – disabled people of color, immigrants with disabilities, queers with disabilities, trans and gender non-conforming people with disabilities, people with disabilities who are houseless, people with disabilities who are incarcerated, people with disabilities who have had their ancestral lands stolen, amongst others.”
In this interview with Ly Xīnzhèn Zhǎngsūn (Lydia X. Z. Brown), they do a great job summarizing this.
The Disability Justice Framework was co-created between 2005 and 2006 by a coalition largely of Black and brown disabled people, and queer and trans disabled people, and particularly queer and trans disabled people of color. And some of the people who created the framework of disability justice are Patricia Berne and Mia Mingus, Leroy Moore and Eli Clare among many others. It's just a few of those who were involved with that development. And Disability Justice as a framework was created in large part to move beyond the failures and the limitations of the Disability Rights Movement.
The Disability Rights Movement and its attendant framework is focused on the basic idea that to improve life for disabled people, to improve social conditions for disabled people, we need to advance inclusion. We need to somehow use the tools of law and policy to cooperate with institutions that hold power, government institutions, corporate institutions or academic institutions, for example, to have disabled people be better represented, to have disabled people be better included, and to create and enforce legal, regulatory, juridical or legislative protections for disabled people, both for positive rights like the right to and education or the right to housing. And for negative rights, the right against discrimination, the right against being abused.
But what the Disability Justice framework recognizes is that the work of law and policy and inclusion, while certainly necessary and important in many ways for real people's lives, that work will never be sufficient and it certainly won't get us to liberation.
How can the work of law get us to liberation when the legal system in the United States is literally built upon genocide and land theft and forced removal and chattel enslavement? How can our policies move us toward disabled people being welcome in society and afforded human dignity when the very idea of inclusion is still rooted in maintenance of status quo and upholding institutions as they are, institutions that are rooted in eugenics, institutions that are rooted in technologies of elimination, institutions that are rooted in not just erasure of our narratives, but in terminating our lives.
So, the disability justice framework at its core for me represents two things. One, a call for us to understand ableism or disability oppression as inherently intersectional. That is that ableism is both necessary for and dependent upon every other form of oppression.
You do not have ableism as it exists now in the absence of white supremacy or settler colonialism or capitalism. You do not have the maintenance of white supremacy without the maintenance of ableism. Disability justice invites us to understand just how intersectional the crisis of ableism is. And therefore how we as disabled people, even in the same community, even with the same disability, do not experience ableism in the same way we experience ableism differential. The second thing that disability justice accomplishes is it offers us a vision of the kinds of futures and communities that we are already building and that we need for our lives, for our health, for our safety, for our freedom, and for the future. Disability justice reminds us that liberated disability is intersectional, that our freedom is intersectional. That if we are not all free, as so many freedom fighters and thinkers and organizers have said in so many different ways forever. If we are not all free, then none of us are. And so disability justice does those two things. It teaches us to understand better the crisis of ableism and it offers us a vision past ableism.
Important resources:
The most important link, Sins Invalid (the founders of Disability Justice) with the 10 principles that make DJ, DJ
Skin Tooth and Bones is a must have for every house
Podcast interview on reclaiming Ugly, and ugly laws as anti-blackness equals ableism
Project Lets has a great DJ resource list here
On self-driven YouTube regulation (Feb 14)
I wanted to share this in case it helped anyone else...
Like, I'm sure for many of you, "computer time" is a perpetual challenge. Not screen time, but YouTube time specifically.
At the moment it goes largely unrestricted when we're at home, even when his OT and teacher come over. But we do notice a distinct difference in his engagement with other toys, books, etc, when he's not watching YouTube videos of buses.
On two different days now we've tried saying, very carefully choosing our words, "I wonder if you'd want to take a break from the computer, and switch to the phone when OT comes over. Hmm". We say it 2-3 times over the course of an hour, and that's it. We've decided we're totally fine if he doesn't want to! We just want to extend the thought.
And both times he's ended YouTube (and switched to his phone). This past time he did it 5 minutes before the OT came, not even in response to an immediate statement from us. All of a sudden he said "phone", and then switched them out.
And yes, he then has been excited by some of the toys and games the OT has brought over! While still getting to listen to Bus Announcements (the podcast we made him) on his phone.
(The careful part is because we've noticed that it seems like he isn't taking in time words like "later", in 5 minutes, etc, all the time so if we say something like "I wonder if you want to end computer time later", he will sometimes give us the computer and get very upset, seemingly thinking we were telling him he has to end it, or has to end it right now!)
(Also this wouldn’t have been at all possible just 6 months ago but A-s seeming understanding of spoken language has just skyrocketed so if you’re like “this wouldn’t work at all with my kid” I totally see you, and them, and I believe you!)
On weekly routine boards working when daily routine boards don’t (Feb 14)
I wrote a while ago about how we had created these amazing daily photo routine boards for A-. And then after maybe a year, he just started rejecting them - pulling the photos off each day and not wanting to engage with them.
As unschoolers, we sort of just have one major thing that happens each day - some days are music therapy, some are a babysitter, some are "A-'s adventures", so Daniel decided to make a weekly routine board that just shows the high level activity each day. Sort of like the TLDR for the day.
Daniel will add more detail to the day when the day is happening, not in advance. A-'s made it clear by removing photos that he doesn't want to know too much before the day is happening.
It's still working so well! Sometimes A- will be on his computer and Daniel might say "Oh today the teacher is coming over", and A- will run over and check out his weekly routine board, or just lift up his head to look at it.
This week Daniel has a minor medical procedure, so I'm taking off work, and A-'s whole week is changed. And A- is taking it in stride! We see him check our the weekly board in the mornings, so it's clear that he feels confident he knows what's happening each day.
(If you search "routine board" in my posts, you'll see the previous posts I did about the daily and weekly board, with more detail around how we made them)
Stuff I’m Reading and Listening To
Kelly Hayes’ latest newsletter is really, really good. Not a self care list. But a political, grounding-so-you-don’t-numb-out list. Whether you have hours a day, or minutes a week. Read the whole thing to learn about A Minute Of Us.
My day job organization MediaJustice is doing a webinar series about authoritarianism and the tech broligarchy - the history, the present moment, the future. WTF: The Rise Of The Tech Broligarchy, our biweekly webinar series that exposes and resists the Tech Broligarchy during Trump’s first 100 days.
A- has been alternating between Good Day Sunshine, and Allison Russell and the Resistance Revival Chorus’ version of Take Me To Church which I feel like is wise for the times. Take Me To Church is about the church’s oppression of gay people, so he’s showing we have to stay present and eyes-open to the reality, and to the joy and laughter of the sun.
