You can’t have an inclusive Toronto without an anti-ableist Toronto
Also death; awful parents; therapy feedback forms; radical allowing; beyond tolerance; communities; BIRTHDAY QUILT!; choice board; birth in birthday
In this issue…
What I’m reading and listening to…
If you read one thing, read this incredible paper by endever* corbin about exhausting speech. But also it’s about how to live disability justice and how to reframe what it means to be able to communicate and live a self-determined life. And other things.
Y’all know I just can’t read long academic papers. But this one about barriers to literacy for AAC users, based on the experiences of AAC users, looks very good!
I was reminded of this amazing experience where A- problem-solved, and then talked about how smart he was :).
This is a cool looking book called “I’ve always had a voice” that’s about all the valid ways kids communicate! Kindle version. Pre-order a book.
Morénike Giwa Onaiwu, an amazing autistic advocate and parent to autistic kids, needs support! She's part of the Autistic Women & Nonbinary Network (AWN), has written books on positively raising autistic kids of color, and just shows up everywhere.
I cannot believe Brad Lander got arrested for accompanying an immigrant to immigration court.
Kids bring death to the forefront (June 8)
I feel like there is a very small sampling of people who would understand this….
It’s a very trippy experience being at my mom’s house (called Patiamma by A-) and having him play out loud the page of the Pictello over and over and over hundreds of times that is a recording of me saying “When we visit Patiamma, Tha Tha won’t be there anymore because Tha Tha is dead”.
The other night he played over and over - hundreds of times - the page of another Pictello that says “Everyone’s body is different! Tha Tha is sick. Be gentle with Tha Tha. One finger one his hand.” Because in the last few months of my dad’s life (aka Tha Tha), my dad would experience intense pain because of the cancer, so we had to teach A- he couldn’t give Tha Tha his big, tight hugs or climb on him.
Basically, for the last few weeks leading up to this trip and on this trip we hear single phrases about Tha Tha being sick, and dead, and not here anymore ever again, in our recorded voice over and over hundreds of times.
It is both trippy for me (and maybe a bit dissociating?) but also makes me so, so glad we put in the time to give A- a wide variety of information about his grandfather, illness, and death, in clear and direct and accessible language and medium so that he can continue to have his own experience, on his own timeline, of this very confusing part of life. After all, I think most 5 and 6 year olds would be asking their parents “Is Grandpa going to be there?” and “Grandpa’s dead forever, right?” over and over, so A- deserves the same thing.
Wow some parents *are* really awful (June 9)
I have a draft post I will sometime write about how I think it’s really important for disability advocacy movements to have a broad base that includes parents (this is already happening all the time, of course! But there's a faction of social media folks who work against that).
Acknowledging, of course, that many parents have and still do really f* up and cause harm.
I really have been shielded from what that harm looks like, I guess. Because the FB algorithm showed me an account today that was pretty awful.
It was some page called “what autism actually looks like” or something like that. A parent shared a photo of their kid, telling the whole world and their tens of thousands of followers that now he is entering puberty (what kid wants their parents showing them going through puberty‽??). And how he is never even going to understand time, or what is going on around him, and he will always be a child stuck in the body of an adult, and he won’t be any different at 25, no matter what anyone tells him.
It was just awful!!
It was useful for me to see, I guess, because now I understand where terms like “presume competence” are coming from. They’re a response to people like that.
Sure. Maybe this kid wouldn’t ever understand time. I’m sure there are many people who never do. Also. Maybe he will. Also. Maybe he already does. Maybe his only issue is being able to control his body and mouth to have it do what he wants it to. And maybe not. Nothing makes him less of a human being who deserves privacy, especially around puberty! And he definitely doesn’t deserve someone already deciding what he will never be capable of learning. Or assuming that not being able to learn about time defines you as a a person who will be a child forever and can learn nothing.
The post also concluded how he’ll never be different, even at 25. He will always be a shell of a person. He will always need lifetime support. As if these sentences automatically connect? Because needing a lifetime of support automatically means you’re a shell of a human…? No wonder there are so many advocates posting about how independence is not the goal.
And look. I’m never going to change the minds of someone like that. I have no interest in engaging with them. But there are parents getting captured by these narratives, and those are the parents who’s minds I want to change. To help them see that by supporting your kid as a person, whether they ever learn to tell time or not, it is the same fight as supporting your mom or dad to live in dignity in their old age, is the same fight as you - parent - being supported and respected and having dignity. And bonus, your kid gets to be treated as a human too.
(This will, perhaps, look like the podcast with Joyner).
Therapists should do regular feedback forms! (June 9)
I was talking to my friend Sam of allneurotypes and we had a great suggestion for therapists (and teachers and stuff)… you should give your clients regular feedback forms or feedback sessions!!
I was talking about how there are therapists of A- that we stopped working with and I never told them the real reasons why, because they never asked. And honestly, it could have been helpful feedback for them! In some cases they weren’t bad therapists but there were things they weren’t as good at…. things they probably could have worked on.
As I’ve discussed before, the power dynamic with therapists makes it really hard for so many of us to give feedback. But therapists, like all of us, could benefit from hearing what’s working and not working.
As a client, being told “let me know anytime you have suggestions” doesn’t work. It’s too nerve wracking. We’ve been conditioned in society to see feedback as bad. Many of us have suffered when we’ve given feedback to people.
But imagine being given a form every 6 months with easy to answer questions, that aren’t just “give me some feedback”. The same way we do in well-run organizations when we take time to reflect on how staff could do even better. Some we thought of:
what is going really well?
what could be improved or done differently?
what is a way in which you feel I don’t yet understand you / your kid?
what should I do more of?
what should I do less of?
what’s a topic you think I should get more training in or a resource you think I should read?
(Sam and I may make a draft form that anyone can use!)
Radically allowing A- to grow at his own pace (June 11)
We went to visit my mom in the suburbs of Toronto, and then came to an Airbnb in the city for a few days (and then will go back to my mom’s house).
I want to say how far A- has come from a few years ago when A- wouldn’t even go inside any new building. To the next stage, where A- would go to new places but it was a lot of work communicating, and something we did rarely, because of the difficulty in transitioning to a new place or even in taking a car and pulling up to a new building.
Of course, these kinds of things don’t get easier for everyone! Nor do they remain easy for people over their whole life.
But for A-, it is yet another example of how much things just evolved naturally as A-…. matured.
We didn’t do extensive therapies to get here.
We did some things though… That maybe are even radical things.
When he wouldn’t go into new places, we didn’t make him, or we set things up so he could take hours to transition.
This meant driving over an hour to visit relatives that he hadn’t even met before, and then leaving without ever stepping foot in their house. This meant asking Grandma and Grandpa to wait upstairs in their bedrooms for at least half an hour when we arrived, and to not make a big deal about A- being there when we eventually told them they were allowed to come out.
This of course meant tons of communication in many different media. But it also meant being very specific and careful where we chose to stay when traveling. Like we would always get an Airbnb with a short walk from the driveway to the front door, no second floor apartments, so we could minimize the transition from the car to the place, minimizing the length of time it would take to actually make it through the front door.
But honestly, these were hard decisions as parents. Every decision came with a “Are we fucking things up??? Are we ruining life for our toddler forever???” Every decision, especially given we were such new parents, came with judgements from well intentioned people. “But don’t you guys have to think of your own mental health?” “What about him thinking he’s in charge?”
But I guess this is what it means to move at the speed of trust. He had to trust us, and we had to trust him.
And then, things solved themselves. Going inside some new places started to become fine. People didn’t need to stay out of sight (but still couldn’t make a big deal about him coming over!). We just had to make sure we weren’t transitioning between multiple places on the same trip.
And now here we are - a flight to another country, a trip to the suburbs for 3 weeks punctuated with a few days in an Airbnb downtown, with just a short Pictello and a calendar with the transitions. He was even excited to get into the car and come downtown for a new adventure!
By total coincidence, we’re staying in a house that overlooks a streetcar! Tomorrow morning we’ve promised an A- streetcar adventure. I wonder where he’ll take us!
You can’t have an inclusive Toronto without an anti-ableist Toronto (June 12)
Being in Toronto right now I, pessimistically, feel how ableism is everywhere and we can’t escape it. Optimistically, I guess, I finally understand the call of disability justice activists that you can’t have an inclusive movement if you don’t have a disability justice movement.
On one hand, I am thrilled to be back in this queer, queer city. Our random Airbnb - not in a gay district - has within one block of it a queer music venue (or a music venue that just really loves queer folks), and a queer weight lifting gym called Pride of Lions.
And at the same time, in that 2 block walk, I noticed the same stares we always deal with: the stares at A- being in a stroller. The stares as he jumps around the grocery store loudly whooping in hopes they have popcorn
I’m under no illusions, as I had been while growing up, that Canada is a magical inclusive haven. I know about the serial killer killing gay, primarily BIPOC men for years that the police ignored. I know about the town North of Toronto that worked itself into a frenzy last summer over a movement to keep away South Asian immigrants because they “poop on the beach”. I know about the Mississauga immigrants mad that their taxes are being raised so that people who don’t even work (like disabled people) will take away their healthcare.
Canada also knows this about itself, of course.
There’s something about leaving a place at 23 years old, still bought into all the propaganda, and then learning a lot about how things really are. Whether it’s because of finally seeing ableism, or more broadly, seeing how all of these were just lies to give the state more and more power until we’re ruled by an oligarchy.
I’m a different person now than I was at 23. But then again, Canada is too. I can’t imagine the Canada I grew up in having widespread agreement not to celebrate Canada Day because of the continued oppression of Indigenous people.
But it was also here, a couple of years ago, that we got one of our first random adults making mean comments about A- whooping with joy as he played on a pedestrian street.
Also, we are sitting on the porch eating dinner watching streetcars go by. And I’m like “at least we aren’t watching ICE rounding up people on the sidewalk or hearing militarized helicopters overhead.”
But now I understand so clearly that when people say we aren’t an inclusive movement if we aren’t a disability justice movement, it doesn’t just mean “Hey it would be nice if disabled people were included” it means “If you embody the idea that there are some people who aren’t fully human, then you are definitely on a path to authoritarianism”. It means you will never find liberation.
There’s this part about how A- isn’t truly safe anywhere. But then there’s the part about how that means none of us are truly safe anywhere and it’s just a disappearing illusion.
It feels sort of nice, but also like if the US is on the exhale now, then here in Canada we’ve just taken our inhale. And now we’re waiting.
But I do like Pride of Lions and the lack of helicopters.
Added the next day:
I may be wrong in this post about our experience with A-. Relative to NYC anyway. At least where we’re staying.
I actually think far fewer people have stared at us here. We went to an ice cream store and it was one of the greatest interactions I’ve had in a store with A-. The people there didn’t treat A- as anything … special… but also acknowledged him as he was. The way we might interact with him. I was telling A- how great his newfound pointing is and the sales person asked if that was new (Not in a rude way. Just a smalltalk way.). Then they told me about the Sunday story time, if I thought he’d like to attend, and told me how many kids there were so I could have a sense of if it would be too chaotic for A- or not. She wasn’t presuming. Just giving me the info I need to make sure it’s accessible for his needs.
More people seem to just move out of the way of the curb cut when crossing the street and seeing we had a stroller, instead of taking the time to tell us he’s too big for it. Nobody seemed to care about A-s very excited streetcar behavior. One teen just picked up A-s head phones when they fell off, and held them out to his side while he continued to play on his phone or whatever teens do, just patiently waiting for A- to take them.
And I’m wearing my Jordyn Zimmerman “Speech doesn’t make someone more human” t-shirt and a stranger on the sidewalk was like “Cool shirt! I love it!” I’ve only had one person say that to me in Brooklyn too, but I’ve worn it a lot.
(Although this last one may have more to do with strangers talking to you in Toronto than NYC. Another older man made fun of me and Daniel for being on our phones in a playground in a joking-but-not-joking way, in a way that wouldn’t really happen in NYC).
Beyond simple tolerance - the playground edition (June 13)
We were at a playground in Toronto, and A- was going up and down the spiral slide as usual and making us do the same. Two kids - maybe one A-s age and one a tad older - wanted to go down the spiral slide. I stopped A- so they could go down, and they went up the stairs to go down again.
Often A- has no problem waiting for other kids to go down, or he’ll just stop playing on the slide altogether altogether if it’s crowded. But this time, he did really want to keep playing.
The grandmother of the 2 girls, not knowing much English, pointed at the slide and looked at me and said “He love it?” And I was like “Oh ya, he really loves the spiral slide!” And then she smiled, and told her girls they could play somewhere else right now because A- needed to play on the slide.
This is what access and inclusion looks like. It looks at seeing what everyone’s strengths and abilities are in a given moment and realizing there is abundance. In that moment she saw that A- couldn’t stop playing on the slide - not that he wouldn’t. And that her grandkids could play somewhere else right now. No problem. No fighting. No whining.
I’ve had people be not-assholes, tolerant, and even nice on a playground before. But I’ve never had anybody embody inclusion and belonging on a playground so well.
(And since my mind likes to generalize, I’m like is this because of Toronto?? Or because she was probably from Argentina?? Or neither!)
State services vs what communities have built (June 14)
I’ve been thinking about how when thinking about how livable a place is for a disabled kid like -A, there are two different things to consider. There are the systems and services provided by the state. And then there are the informal systems and networks people have created.
For example - two places can be equally ableist in terms of public schools. They both segregate kids, or throw them all together without true inclusion and belonging. But one can have unschooling co-ops, democratic schools, and more, that truly embrace everyone for their inherent belonging.
Both can have measly financial supports that require extensive hurdles and underpay support staff. But one can be miles ahead in terms of grappling with how mutual aid can be inclusive of the most marginalized and keep them out of institutions.
Of course, it’s hard to figure out whether a place has the outside-of-systems support. It usually takes a lot of time and community building.
A-’s birthday quilt!!! (June 16)
It’s A-s birthday! Which means another 2 triangles on his quilt.
A-s quilt is a story. When we adopted A-, we had almost no notice. We had become a “waiting family” just a couple of weeks before, for what we were told would be a 2-3 year wait.
I went on a silent retreat in New Mexico - somewhere 5 hours outside of Santa Fe - and we joked “What if we got the call while I was on the silent retreat”. We knew we wouldn’t. We planned to start getting ready for parenthood later that summer.
I went on this retreat with my friend Miriam, and we had a trip planned to Taos after the retreat, just the two of us. (Also this retreat was lead by
who wrote the Belonging book that is one of the books in my most recommended resources!).The second morning of my retreat, I was doing walking meditation in these beautiful mountains and the staff silently walked over to me, and handed me a small folded piece of paper. On it it said “Daniel called re adoption. Do you want to call him back?” I walked, slowly, mindfully, to the office which was the only place with a phone (no cell reception here!), running through ideas in my head. It was too early for the call but why else would Daniel interrupt my retreat?
Sure enough it was the call. We had 2 days to get ourselves to NJ to stay indefinitely to become parents (we had to stay with A- in NJ until the paperwork was done). Oh and did I mention this was also July 4 weekend, and World Pride in NYC? And I was 5 hours outside of Santa Fe, without a car.
I got back to NYC within 24 hours (there’s a whole story there too). Daniel and I found one weird Airbnb in Jersey City, and we were off. We got there with one night before A- would be placed with us.
That night, we head to the baby section in Target and picked up random shit that Target said you needed to care for babies. And then we quickly read the chapters about diapers and feeding from the one library book we had gotten.
The quilt…
As we made our way from the subway, to the PATH train, to NJ, we walked through World Pride, dragging our suitcases behind us for our indefinite stay in NJ. So I bought a pride bandana as a quick souvenir. That bandana is in the middle of A-s quilt (along with his name and birthday).
My friend Miriam decided when I came back to NYC to stay on the silent retreat and then do our New Mexico trip on her own. On her trip, she found a cute little fabric store and bought me a bunch of quilt squares. Those are the patterned triangles throughout the quilt.
Every year, on his birthday, we embroider song lyrics that were meaningful to A- from that year on 2 white triangles. There are exactly enough triangles so that when he’s 18, the quilt will be full.
This year, A- has mostly been into bus videos! But we still had some important songs.
1- “I look up and there you are shining bright at me” is from the Sara Bareilles and Sesame Street version of Twinkle Twinkle Little Star that we love. That part of the song always makes me emotional.
2- “Good Day Sunshine” from A-s sunshine Spotify playlist.
3- “Take me to church” is of course from the Hozier song, but there’s also a beautiful Alison Russell version. A- isn’t thaaat into the song, but we liked the double meaning here. A- looooves Church Avenue, and even as I was embroidering his triangle he’d point to “Church” with excitement. Also, it felt hard not to have our quilt mark this decent into fascism in some subtle way as A-s life of joy unfolds around it. So this song being about those with power decide someone is not human simply for existing as they are, felt right.
Quick Choice Board app? (June 16)
I was looking for an app that would allow me to whip up a quick choice board for A-.
So that if I’m unsure if A- is saying Cheerios or Church Avenue or if he wants to go home or get ice cream, I want him to be able to clarify.
But we’re talking a 6 year old attention span, so I need to be able to whip it up super fast.
It would basically look like this…
You open the app and immediately see 4 quadrants. You click on a quadrant, type a word, click on the next, type a word. Then click “done” or “lock” and then when you press a quadrant it says the word out loud.
Then there’s a “Clear” button.
That’s it. That’s the whole app. It’s the high tech version of drawing choices on a white board or using your hands. The advantage is that it’s in writing (A- can sometimes clarify his speeech when he sees a written word), and it has audio feedback which is helpful for understanding the choices but also for focus.
From the FB discussion:
Uplifting this one app Lisa Kwok recommended called Visual Choice AAC.
You can press a button for quick choice and then speak into your phone “Cheerios or church street?” and it will make the choice board for you! And you can do all the settings like list or grid, font size, space between buttons.
BUT it costs $7/month. You can try it out for a month free. I’ll be trying this and the free ones recommended and report back! But the beauty of this is like… say we’re on a bus and can’t really take our eyes off A- for 30 seconds to type into a phone, this would solve for that problem.
Update from actually trying it:
On one hand, my hunch that the visual feedback helps him pay attention was right! I’ve used it twice and although A- didn’t actually use it to tell me his choice, he looked at it. Was interested in it. Even tried to change his pronunciation of the word “vitamin” based on it. BUT on the other hand, because A- really likes the sounds of certain words he started pressing “Church Avenue” over and over because it sounds cool, but he wanted Cheerios. I can mute it, but then I’m not sure if it will capture his attention in the same way! We’ll keep trying.
Self-directed learning - birth is in birthday (June 16)
Before A-s birthday this year I whipped up a quick Pictello about the concept of birthdays. Like with most things, I started to panic that we hadn’t even explained some of the most basic info about birthdays to A-. Like everyone has a birthday. They always happen once a year. They represent the day you were born. Everyone always ages one year on their birthday.
But here’s the super cool smart A- piece. He hadn’t even watched that Pictello yet, but today he watched another Pictello he hasn’t watched for ages and ages. It’s called “I’m adopted”. On one page, the page he watched over and over again, it says “{First mothers name} gave birth to me at {hospital name}”.
“Birth”.
He’d been seeing the word “birthday” and “happy birthday” a lot recently, but especially today on his banners and balloons. So, I imagine, he connected the dots himself seeing “birthday” and remembering that one place he saw the word “birth”.
I guess it’s time to get What Makes a Baby!
(Also I think this is what presuming competence looks like… because I’m still glad I made the birthday Pictello which I’m sure he’ll watch in time).
On awful parents: I wish parents would stop publicly complaining about how hard it is to be a special needs parent! It does nothing good for our kids!