These things are not luxuries
Historically, Washington, DC has only provided home and community-based services (HCBS) to people with developmental disabilities who also have an intellectual disability. This year, DC is joining most of the rest of the country in expanding eligibility to include people with developmental disabilities, like autism, who don’t also have an intellectual disability but still need help with daily living. I was asked to testify at a forum today about why this is so important. Here is what I said:
Thank you so much for having me here today. My name is Julia Bascom, and I am a DC resident. I’m a white woman with brown hair and glasses. I am autistic and I have other disabilities as well. When I heard that DC was expanding eligibility for HCBS to people like me who don’t also have an intellectual disability, I was so excited. I want to tell you what this policy could mean for people like me.
Because of how my autism works, I cannot live on my own. I need help every day. But it is not safe for me to live with my family of origin. When I first left home, I tried to live on my own for a few months. Even with my friends trying to help me, it was a dangerous situation. I struggled to take a shower, eat, or go to work. I became very sick, and very weak. I thought I was going to die.
Thankfully, I had a friend who was willing to become my roommate and provide me with daily , live-in support. For the last nine years, my friend has provided me with substantial support, every day. Because I have that support, it means that most days, I eat enough meals and at least one vegetable, take my meds, take a shower if it’s a shower day, and go to bed before I collapse. If I need medical care, I get it. These things have not always been true for me, and they are never things I can take for granted. My roommate’s support keeps me alive, and makes it possible for me to work and to have a good life.
The person who supports me deserves to be paid for the work that they do. But because I don’t have an intellectual disability–“just” autism–I haven’t qualified for DC Medicaid. So there isn’t funding for my support. I have to rely on the kindness of friends, and my friend who provides the bulk of my support has to work a second full-time job. This is wrong. And it also means that, if my roommate has to work an evening shift at their paying job, I might not be able to eat dinner that night. That’s wrong, too.
Sometimes people are surprised to hear how much support I need. I can talk and use big words, and I have a fancy job. This is actually pretty normal for autism–we have research that shows that autistic people with high IQs still struggle with things like executive functioning and daily living skills. So for me, that means I can do lots of policy work, but I can’t follow the directions to give myself a COVID test. My roommate has to help me. Every autistic person is different, but most of us need some help with daily living. If we need help, we should be able to get it. And we shouldn’t have to rely on unpaid friends and family members to be able to do things like take a shower or go grocery shopping.
I don’t like to talk about all of the things I can’t do, or all of the things I need a lot of help with. But I want you to understand how important expanding eligibility for services is. So here are just some of the things I need support to do:
–I need support to remember to eat enough meals during the day, to figure out what I can eat, and then to actually get the food.
–I need someone else to cook most of my meals.
–I need prompting to take a shower or brush my teeth.
–I need someone to make sure I go to bed. I need someone to remind me to change into pajamas and take my meds at night.
–When I get really upset or overwhelmed, I need someone to help me keep from hitting my head.
–When I get hurt, I need help remembering to get ice or a heating pad or take ibuprofen. When I don’t have that help, I do things like walk half a mile on a broken ankle.
–I need someone to go to the doctor with me.
–I need help running almost any errand. I need someone else to do the grocery shopping, because it gets too overwhelming.
–I need help scheduling appointments and filling out paperwork.
–A lot of the time at night, and sometimes during the day, I freeze in place and have a hard time moving. I need someone to prompt me and coach me to get me moving again. Otherwise I can be stuck in the same place for hours, not doing anything.
And until this new policy, DC didn’t think I needed any help at all.
This is not a list of everything I need help with. These are just some examples. But I hope these examples help you understand that the services that would be made available under this policy aren’t luxuries or things that are just nice to have. They are necessary for survival. Without support, I can’t have a good life. If I go too long without support, I could die.
A lot of the time, when Medicaid provides support, it only provides support for physical help, and only for things like eating, bathing, and transferring. If you need support besides physical help, or if you need help with things like cooking or going grocery shopping but not with eating itself, you might not qualify for Medicaid. Or, you might only qualify if you have an intellectual disability. When I’ve applied for Medicaid in the past, I was told I didn’t qualify because I don’t need very much physical help and my IQ was too high. But that doesn’t make any sense. If I can’t go grocery shopping and I can’t cook, or if I won’t eat without reminders, it doesn’t really matter if I can lift a spoon to my lips by myself. There’s not going to be any food on that spoon without support. And it doesn’t really matter what you score on a test if you can’t actually feed yourself.
I’m glad to see DC recognizing that, and making it more possible for people like me to get help without needing a certain IQ score. How successful this change is will depend a lot on the details. How are people with disabilities going to be assessed? Who will count as needing enough support? I believe this policy will fail if, when it’s implemented, it still leaves people like me behind. The assessments and tools that DC uses must recognize all the different ways people might need support with daily living, and not get distracted by other things.
In the end, I know I might not benefit personally from this policy even if it is done well. Because of the support my roommate provides, I can work a full-time job, and that means I make too much for DC Medicaid. DC is one of the only places in the country without a Medicaid buy-in for workers with disabilities, and I hope we can come back and fix that soon.
But even though I don’t know if I will personally benefit right now, I do know that I am not unique. Like I said earlier, most autistic adults need some kind of help with daily living. Some of them need a lot more help than me, and some of them need a lot less. Some of them also have intellectual disabilities and might already be getting services. The rest of us have been waiting. All across the district, autistic people and people with similar developmental disabilities are wishing we had the support we need to move out of our parents homes, work, and live good lives like our friends. Thank you for making that possible.
About “Functional Play”
When I was a child, I had severe deficiencies or delays in functional play skills, particularly with imaginative and cooperative play. (Or, that’s how a psychologist would put it.) I was taught some play routines — I learned to dress and feed a doll, assemble plastic food in a play kitchen, or move a stuffed animal as though it was running or walking. My grandfather built me and my sister beautiful dollhouses, and I could carefully set up each room with Playmobile furniture and even tiny figurines. But then I would hand the dollhouse over to my sister, and wander off. I couldn’t depict any kind of imaginative scene unless someone else was creating it for me and telling me what to do. And I wasn’t really interested in figuring out how to, either.
What I did instead was pace, for about 8-10 hours a day. Back and forth, back and forth, wearing footpaths in the grass until my Dad would make me move to a different part of the yard so the grass could have a chance. (It wasn’t usually able to grow back. There were plenty of days where 10 hours was an undercount.) Sometimes I would walk on my toes; sometimes I’d adopt big, stiff postures, or bounce up and down. I’d move my arms high or low or to the side, but my arms were always moving — I’d flap my hands, or shake a stick, or, most often, shake a book in my hands. The book had to be just the right size, with just the right kind of paper, held in just the right spot. I destroyed dozens of books over the years this way; pretty soon, my parents learned to buy me cheap paperbacks specifically for this, to keep the other books safe. My mouth was open and my face was vacant. Sometimes you could hear me talking to myself, and if you listened, you would hear that I was scripting, or reciting lists. Usually I was silent. I would avoid other children and I refused to play with my own siblings; I wanted to do this instead. I would do this at preschool, at family gatherings, at church, and in the store. I would do this all day.
It alarmed everyone.
I did this through high school. I learned not to do it where other people could see, but the intensity didn’t abate. It only began to slowly fade away after I turned 17, replaced by other stims and some cognitive-motor changes and, perhaps, growing up. If you saw it when I was little, you can still find the traces of it now — I still pace when I’m working out a new idea. I wrap beads around my wrist instead of shaking a book to pieces. I still spend hours most nights doing repetitive activities while my mind wanders.
No one considered this “functional” play. Every expert saw this as something that was very likely harming my development — or, best case scenario, as an indication that I was having a hard time, with the behavior as a barometer for how bad things were. My parents ultimately didn’t try to get me to stop outright (for which I am profoundly grateful), but everyone agreed that it would be good if I could, and any fleeting reduction was celebrated or, at least, seen as a sign of progress.
I still don’t have the skills for imaginative play. Toddlers are happy to boss me around, but preschoolers get frustrated that I can’t keep up or contribute my own ideas to the play. I love stories (although my narrative comprehension is limited,) and sometimes with friends I can co-create something heavily scaffolded — but even Dungeons & Dragons is beyond me. I will obediently set up a highly realistic dollhouse for you, although it still bothers me that the house is usually missing an entire side. That can’t be safe.
My point in sharing all of this is to say: I would have been considered an ideal candidate for therapies aimed at building typical play skills. My disability in this area was obvious and highly visible and often, especially to people outside my family, disturbing. I am still lacking some basic skills possessed by most three year olds.
And yet.
And yet.
My play — not my “behavior,” my play — was deeply functional, for me. Those hours and hours of often silent scripting while regulating my body let me develop a deep bank of fluent language that other people could understand. When I can rattle off fluid paragraphs to you about a topic, it’s because I’ve put in those hours of scripting and practice, even today — and because, long before I was practicing how to explain autism or talk about policy, I was practicing different sentence structures for hours in the backyard. That was not at all apparent from an outside point of view. But that’s what I was doing. And when I wasn’t scripting, I was making and reciting lists and schedules — and that was giving me a structure for understanding my world.
And most importantly? It just felt good. It was calming and reassuring. I am told that is one of the main developmental purposes of play, in fact.
There’s an intense debate raging right now about what constitutes appropriate targets of intervention for autistic children. Self-advocate opposition to abusive practices such as applied behavioral analysis (ABA) has become so vocal and well-known that service providers, researchers, and parent advocates are being forced to admit that perhaps some common therapeutic approaches may not be universally welcomed by the autistic children subject to them. There is more and more interest in discussing what a neurodiversity-informed approach to therapy for autistic kids might look like. (Tip: it’s probably not therapy, and it’s definitely not an “intervention”.) This is a good and long-overdue thing, but it’s not necessarily yielding the fundamental rethinking needed. Even when folks agree that ABA isn’t the way to go — and there are still far too many folks clinging to that golden calf — would-be allies still frequently fall into the trap of changing their language or their aesthetics without changing their beliefs or the core of their practices.
The most obvious example of this shows up as attempts to usher in a “new” ABA. This might look like “play-based” ABA, Pivotal Response Training, or a model that purports to blend ABA with a developmental approach. Only positive reinforcement is used, and that reinforcement is as “natural” and as (disturbingly) relationship-based as possible. The kid and the therapist are both on the floor, laughing, playing, and having fun. But it’s still at its core all about shaping autistic traits into neurotypical-seeming behavior. There’s a list of things typical children do, and the goal is to, over time, mold autistic children’s natural ways of being until they do the same things the other kids do. It’s just the same old ABA with a new hat on.
A therapy doesn’t even have to be ABA to have that same goal, either. Many developmental approaches have this same bias and can be applied in the same way. Oh, they use nicer language — they talk about wanting to get autistic kids connecting, relating, and playing. But the same fundamental assumptions are there. If we aren’t doing things the way other kids are, that must mean we aren’t connecting, relating, playing, learning, developing. If an intervention succeeds, we might not look exactly like the other kids, but at least we’ll be hitting the same milestones and doing the same kinds of things. We know those things are important, because the other kids are doing them. Simple as that.
There are a hundred things I could say about why these ways of thinking are so harmful. ASAN just put out a whole toolkit covering this, and self-advocates have written about different elements of this for almost 30 years. Ari Ne’eman has a great piece on passing goals if you want to start there. But for today, let’s stay focused on play. Rachel Dorsey has a fantastic illustration of the issues we’re talking about in the images below:
[Image description: Yellow-orange background with a circular image of a hand pulling up a zipper. Brand logo is center, bottom of the slide. The headline reads “Instead of Shaping Autistic Play into Neurotypical Play . . .” Below that is text which reads, “Ex. Julio loves zippers. First, you “bond” with him with his favorite zippers. Then, you find dolls that have clothing with zippers and clap and praise him as you encourage him to dress up and hug and kiss the doll. Then you find clothing without zippers and praise Julio for doing the same thing. It seems like he is enjoying the play (and he might be, to some extent), but he is, without a doubt, more invested in making you happy and getting more praise.”]
[Image Description: Light golden orange background. At th right is a circular image of hands fitting different shaped wooden blocks together. At the bottom, center is the brand logo. The headline at the top reads, “Try to Understand and, Then . . . Embrace Autistic Play!” Below that, at left, is text which reads, “Julio loves zippers. You find backpacks, pants, jackets, etc. with all sorts of zippers and bond over them together. You find out that Julio likes zippers so much because of the satisfaction of the parts fitting together. You find other things that fit perfectly together, like puzzles, Duplo blocks, large locks and keys – not to change his play but to bring more Autistic joy. And if he doesn’t like those? No problem. Think creatively of what else to do with zippers.”]
These slides provide a vivid contrast between two approaches to autistic play. And it shows how easily the language of neurodiversity can be co-opted to describe the same-old, same-old. Many practitioners would describe the approach used in the first example as strengths-based, play-based, and person-centered. Many would say that by using that approach, they are affirming neurodiversity. But at its core, that approach is still clearly about shaping autistic traits into neurotypical-passing behavior — gently and cheerfully, perhaps, but inexorably. And that harms autistic kids. That is the opposite of what neurodiversity-affirming therapies are supposed to be about.
Who cares if the kid learns to play with the doll like other kids.
Who cares.
Certainly not the kid!
I think it’s hard for some NTs to understand what the “harm” is in that first example. How does learning to play with a doll “harm” anyone? The kid even seems happy! Often the answers self-advocates come back with are about the long-term harm of masking, and that’s a true and important piece of it. But I think these slides also do a really great job of illustrating the harm that comes from what doesn’t happen. When you focus on shaping the behavior of playing with the doll, you are missing the chance to genuinely connect with the child in his interest — which means he is missing an opportunity to experience an adult valuing and being deeply engaged with something he cares about. He misses out on that experience of shared joy and connection. He misses out on that validation and safety. And he doesn’t get support building critical skills like expressing why something is important to him, or exploring other things that match his interest in fitting things together, or building off of that connection to learn other things in a way that will make sense to him, in a trusted relationship with an adult who values his point of view. He doesn’t get those things.
He learns how to dress a doll.
We know that play has a variety of important functions for child development. Play helps children develop a wide range of motor, cognitive, emotional, and social skills. In typically developing children, play moves in close synch with language and cognitive skills and social development — imaginative play and symbolic thinking grow in tandem and support complex language, and cooperative imaginative play reinforces increasingly abstract thought. Kids use play to process emotional events, practice new skills and ideas, self-regulate, and decompress. This is all true.
But wouldn’t it stand to reason that if autistic kids develop on a different set of trajectories than typical kids, with brains that process information and relate to the world in fundamentally different ways, our play might look different as well?
And wouldn’t it be worth asking how autistic children are playing, and how that play might already meet those core developmental needs, rather than assuming that if we aren’t doing the same things as other children, we aren’t doing anything worthwhile at all?
And conversely, perhaps — if an autistic kid is meeting their need for play in a different way, what makes us think that learning to dress a doll is going to be particularly “functional” for them?
“Functional” play is an interesting phase. I’ve been using it this whole essay. It’s a commonly-used, widely-accepted, quasi-scientific word. It’s one of those ubiquitous phrases that works its way into every framework, and folks never stop to question what it’s doing there, what ideas it’s embedding into their approach. It turns out there’s a lot this little phrase is bringing with it.
First of course there’s the implicit idea that if “functional” play exists, so does “nonfunctional” play. This is the idea made explicit when autistic children’s play is dismissed as stimming, as pathological, as diminished or lacking or insufficient and in need of intervention.
And then there’s the meaning of “functional” play itself. Functional play — that sounds pretty important! It must mean something pretty big. Well. I hate to disappoint you, but it just means to “play with toys or objects according to their intended function (e.g., rolling a ball, pushing a car on the floor, pretend to feed a doll).” I pulled that definition off of a random therapeutic website, but only because it’s the same definition used virtually verbatim by the vast majority of practitioners almost anywhere you look. It’s using toys the “right” way. That’s it.
(This is where I’ll note that autistic people are often clinically described as having a “limited range of responses to [our] environment.” But there’s only a set number of acceptable ways to play with a car. Okay.)
You can go ahead and teach an autistic kid the Approved Routines for using a toy. There’s plenty of programs out there promising to do just that. Most of us will learn the routine with enough practice — not all of us, but most. But that doesn’t mean that learning to perform a routine — even if we learn to do it in a way that seems very natural and playful — will actually serve the functions of play for us. It doesn’t mean that it will be functional play for us. It doesn’t mean that it will be a meaningful experience to us at all.
There’s nothing magical about dressing a doll. It’s just a toy.
Fundamentally, I want us to raise the question of what “functional” play is. Instead of broadly labeling certain types of play (or behavior) as functional or nonfunctional, we should be talking about how a certain type of play might be functional for that child. If we want to talk about how typical children play, we can just say “typical play.” And then we can remember that whether or not an action is typical is value-neutral — but a therapy aimed at shaping a child’s appearance or behavior or development into something more typical is decidedly not.
We can support autistic kids in joyous, obsessive, atypical play. We can support them in play that NTs might not recognize as “play” at all. We can look at the sensorimotor, language, cognitive, emotional, and social experiences and skill building that play can provide, and we can find ways to make sure that autistic kids are getting that practice in ways that work for them. And we can back off and let autistic kids be autistic kids.
If my pacing and scripting had been recognized as meaningful play for me, it would have given my team clues as to how I was (and wasn’t) processing language and what support I needed to communicate more easily. It would have tipped off my team to how I learned best, how I processed what was happening in my life, what fascinated me, and what brought me joy. And they could have used those things to help me. They could have used those things to connect with me and build mutual joy and trust and safety. And they could have let me pace and do the work my brain needed to do (because it’s a cliche but it’s true, play is children’s work), without worrying about it.
I’m grateful to the thousands of hours I spent pacing and scripting and “off in my own world.” I’m grateful to the nonfunctional “garbage behavior” that my family let consume my childhood. Without it, I wouldn’t be able to write this essay. I wouldn’t have been able to process my world. I wouldn’t have been able to self-regulate, or free up brain space to learn new things. And even if those hours hadn’t fulfilled those functions, they made me happy.
And I believe children — even autistic children — are owed some hours of happiness.
“Play,” as it were.
Space Lettuce
[Prepared text of a speech given at the Autistic Self Advocacy Network’s 10th Anniversary Gala on November 16th, 2016]
Hello! Hello, and thank you all so much for being here. How’s everyone doing?
Great. Great, that’s wonderful. I’m so glad to see you all here. We had a lot of internal conversations, over the last week, about how to go about throwing a party after the events of November 8th. And it came down to this idea, and I think it’s crucial, that joy has not gone out of the world. This is a somber time. We’re all feeling pretty grim. And as we look around and talk to each other and begin to figure out what we’re going to do now, it’s critical, it’s absolutely critical, to also set aside time to reflect on and commemorate and celebrate how far we’ve come and what we’ve done. Because, as Ari has reminded us, as Chai has told us, and as our awardees are about to demonstrate, we have come staggeringly far.
We know that change comes inch by inch–slowly, painfully, at an exhausting grinding crawl, and then sometimes all at once. We cannot move forward on grim determination alone. My job for these next ten minutes is to talk to you about what comes next, about what we do now, about what ASAN is planning and preparing for, and I have to tell you that the first thing has to be joy. We have to be able to remember and celebrate our wins and the truth that we fight for. We are looking at a long, long haul, and we’re only going to make it if we bring our joy and our love with us.
When we’re preparing for a trek such as this, it’s important to know that we cannot go it alone. The work of building strong, committed coalitions between the many communities which overlap with and make up the disability community is what will sustain us through the next few years. To return to a truism, “We must, indeed, all hang together, or most assuredly we shall all hang separately.” I am speaking to you as a disabled women, as a lesbian, as someone who loves and works and lives with trans people and people of color and people from different socioeconomic backgrounds and faiths and nationalities. We can hang together, or we can hang separately. These are our options.
Working in coalition, we have to mobilize our grassroots, right now, immediately, to defend and advance the progress we’ve made. Protecting the affordable care act. Medicaid. Deinstitutionalization. Self determination. Access to justice. As you can see in our annual report, ASAN has been systematically developing our capacity to produce accessible advocacy resources–guides to policy and action that people with cognitive disabilities, our families, and really just anyone who isn’t a lawyer can read, understand, and use. We have to build that Hidden Army, and grow our grassroots in places we haven’t before. In the past, ASAN has done a lot of very wonky policy work, and we certainly plan to continue that–let me know if anyone here wants to geek out over quality measures for MLTSS, and I’ll be there in a second! But now more than ever it is critical that we are giving our grassroots the information and the tools they need to advocate, to participate in our civic society, and to have not just a say, but the final word in decisions about our lives and our futures. Nothing about us, without us has never mattered more.
So we’re going to produce materials explaining what a bloc grant is, how public comment periods work, and how to visit your senator in their district office. We’re going to collect people’s stories about why the ACA and coverage of pre-existing conditions is so important, and we’re going to mobilize our networks to ensure that the healthcare we fought for eight years ago stays in place. We’re going to work with other organizations focusing on civil rights, voting rights, and access to justice. We’re going to make sure that whenever the minimum wage is discussed, disabled workers are included and subminimum wage is abolished. We’re going to keep fighting for Olmstead implementation and deinstitutionalization, because now is not the time to give up on life, liberty, and the pursuit of happiness. And we’re going to keep advancing our work in supported decision making and self-determination, because making choices is a human right, and human rights don’t come with 4-year waiting periods.
It’s going to be hard. Yes.
So we’ll do what’s hard.
We have always overcome impossible odds. It is something out of science fiction that we exist at all. Autistic self-advocacy, self-advocacy, disability rights and the community we have built–all organizing is science fiction, as Walidah Imarisha said, and when we organize we find ourselves building a new world. I draw strength and conviction in equal measure from the fact of our rich history. We have done so much. In just the last few years, we’ve seen an increased acknowledgement and acceptance of the fact that cure, as a concept, is not an ethical–or scientifically plausible–response to autism. Can you imagine? If you had told me five years ago that Autism Speaks would remove the word ‘cure’ from their mission statement this year, I would never have believed you. We have a lot left to do there, but we did that. The number of people with disabilities living in institutions has shrunk to a bare fraction of its peak. We did that. We defined what home and community based services mean, and as a result, the quality of life for people receiving those services has and will continue to increase as we restore autonomy, self-determination, and basic human rights. We did that. How long have we worked for those things? How hard did we fight? Is there a single person here who could call it easy?
There is so much more to be done. Even for each of the examples I’ve cited, enormous amounts of work remain–autism acceptance and self-advocate representation must replace words like “treatment” and “prevention,”; our people still trapped in institutions must be freed; we all know far too many people living nightmarish lives of quiet desperation in what we call on paper a ‘community,’ and of course even one person in that particular hell would be intolerable. The work ahead was already unrelenting, and as we look at the next few years, I think we all feel a little knocked back, a little desperate, a little panicked that after everything we’ve done, it could all be unravelled.
But when I think about our community, and when I think about our trajectory, I am still filled with hope.
We’ve built something incredible, something that has defied the odds, and we’re not done yet. We’ve fought hard for our existence. We’ve fought hard because the idea of ASAN is important: the idea of an organization run by and for autistic people ourselves, an organization capable of sophisticated advocacy at a local, state, and national level, taking on policy and legal challenges and working to ensure that wherever and whenever issues impacting the lives of autistic people are discussed, we’re there–not just sitting at the table, but leading the discussion. That idea is important, but it’s an idea we’ve fought to turn into a reality because it comes with tangible, real-world consequences. Self-determination, access to healthcare, community integration, communication justice–these are not academic theories but lived realities, and the policies we make and the arguments we have directly impact people’s lives. We are the organization that cares about the details, because we know that the details are where our lives are lived and lost. And as long as that’s true, ASAN needs to exist, bringing light to those details and pushing for a better world–now.
Prior to last week, when I was working on this speech, I had a great story to tell you about 2 different futures. That story is still true. So I want to talk for a minute about stories, about the future, and about the stories we tell for what the future can look like for autistic adults, adults with intellectual and developmental disabilities, adults with significant disabilities–whatever label we want to insert here. The stories we tell about disability, about autism, and about our lives set our expectations, and those expectations set up our futures. And right now we have stories for 2 starkly opposing visions for what we think life can look like for autistic adults.
The first vision is all about safety. Safety. Our best hope and our biggest expectation, we are told, is to be safe. In this vision, we are safe! We are so, so safe. Our housing is safe–designed specifically to keep us safe. Safe, special housing, with all of us in one place to keep us safe. There are devices that can track us to ensure that we never venture beyond safety’s borders. We have guardians, to ensure that all decisions related to us are sanctioned and sound and safe. If we work, we are working somewhere safe, of course, optimized to us and our needs and the needs of our also autistic, also disabled coworkers–safely supervised, of course, by someone without a disability. Thank god. We are kept safe in a cocoon of specialized services, cradle to grave, from the behavioral modification that teaches toddlers to stop flapping for their own good all the way through to the adult ABA that providers assure us is really just person-centered, since the reinforcers are tailored to our specific behaviors.
We are so, so safe.
Now, in case my tone hasn’t tipped my hand, I should clarify that this is obviously a story that ASAN and self-advocates find to be deeply dystopian. But it is difficult to articulate an anti-safety agenda, as it were. Safety is good! We want people to be safe! It’s an understandable motivation! And yet we know that safety isn’t safe. We know what the abuse rates for ‘safe’ segregated placements are. And we’ve seen this before. We have a century and a half of history showing us that institutions, campuses, farmsteads–whichever you’d like to call them, and when you line the descriptions up over time it becomes impossible to tell the difference–aren’t safe, even if they have a lovely pool and a beautiful garden. Any time you take a group of marginalized people and put us together and isolate us, safety leaves the equation. Every time.
So when we are choosing between possible futures for our community, I think we can do a little better than safety. Certainly our community deserves better. But what would that second story look like? What stories do we want to tell?
I want to tell stories with unlimited options. I want autistic people to be safe–but I also want us to be happy, self-determined, included, valued, and unremarkable. I want our lives and our happiness to be commonplace. I want us to be people–we are people! With boring, ordinary lives. Lives that we are in charge of. I want each of us to be free and supported to be living the best life for each of us. I want the same thing we want for everyone else.
And, handily enough, I believe we have a right to that. I have a right to be in charge of my body and my life. I have a right to live free of abuse and neglect and discrimination. I have a right to make mistakes, take risks, and to be bored. I have a right to participate, to access the same things my peers access and live the same boring, ordinary, beautiful life.
And I know that right now, on November 16th, all this talk of rights feels like science fiction. But listen, we grew lettuce in space this year. Did you know that? We grew lettuce in space this year. We are living science fiction. We can do this. We’re already doing this. The ADA generation has grown up, and with the strength of disability rights law at our back and the blessings of our community in our hearts, we are changing what the world looks like. We’re changing who gets to be in the story. We’re changing what the story is.
This is not the end. This isn’t even the beginning. This is the long, hard middle that gives every story its heart, its meat, and its staying power. We are beautiful and we are strong and our shared humanity is at its best when we’re all in. And that’s what we’ll be working toward for the next 10 years.
Thank you.
#DressingWhileDisabled
There are two stories I could tell you.
One: I’m clinging to my roommate’s arm, trying to (re)learn how to walk in heels.
Two: a friend sent me a pair of shoes.
*****
One: I wore heels, once. I was in a choir, a choir that was a Really Big Deal, and the high school girls had to wear character shoes. I got the lowest possible heel, and I was okay, mostly.
I liked how they sounded on the floor, so sometimes I wore them in college, or to DD council meetings, or when I went to Washington. I think they had maybe a half-inch heel.
I lost my character shoes in the move. Two years went by. I tore all the muscles in my left ankle, every last one, and I couldn’t go to physical therapy.
I put on a new pair of heels, and I knew, instantly that I didn’t remember how to do this.
*****
Two: my life looks very different from high school. I am connected now, in some pretty formal ways, to hundreds of disabled people all across the world. A couple of weeks ago, one of those people, a Facebook friend who has done a lot to show me what living with pride and joy in a disabled body looks like, posted that she had somehow wound up with a pair of mary janes that were far too big for her. Did any crip femmes she knew want them?
They were a size 11. I usually only have 1 pair of shoes at a time, and let me tell you, finding cute shoes in your size when you are over six feet tall is not easy. I said so. She sent me a picture, I noted they had heels, we worked out the logistics.
A few days ago, they arrived. I was having a bad hands day, so my roommate helped me open the box.
I did remember how to put them on by myself.
*****
I am autistic. Just like the screenings warn, I walked on my toes when I was little, and until I hurt my ankle this summer, I still did. I can dance, kind of, not really. In my own way. I have a lot of trouble with conventional femininity: I wear long skirts and long hair after a religious upbringing, but I don’t have the motor skills or the patience or the social-cognitive something for most of the work required to do femme traditionally. I can’t put on my own makeup or paint my nails; I can’t fasten any clothes that a typical six year-old can’t. I used to be able to pin up my braids, but I lost that skill sometime last year after going too long without OT. The day you see me with my hair perfectly coiffed and my eyes carefully made up, in a coat that buttons and boots with no zippers, is the day you know I’ve either been married or placed on a Medicaid waiver.
Like a lot of disabled women hoping no one notices we’ve snuck into the professional world, I cling to the few scraps of traditional femininity I can hold on to with my teeth. My friend, another autistic woman in the workplace, calls it “femme-NOS.”
Being able to wear heels again would be a big deal.
*****
“We’re gonna walk around the room,” my roommate says, and I nod and hang on for dear life.
“Why did you want these?” he asks.
“The gala,” I say, grimly. One of these days I am going to be dressed to kill.
“Okay,” he says. At the last gala, he helped ferry me from guest to guest, guiding me through the crowd and staving off meltdowns and making the loudest night of the year mildly enjoyable.
“We’ll have to practice a lot.”
*****
One of my other friends runs a blog called CP Shoes, about disability and shoes and some other things. I know as soon as I volunteer to take the shoes that I am going to want to write a thing for her. I’m writing, again, because some things worked out and I have a little more energy, a tiny bit of space for words left in my brain on the weekends.
Some of my friends and I are starting to talk, in various places and various ways, about #DressingWhileDisabled. There are a lot of stories about disability out there, and not a lot of them look like our lives. We have to tell them ourselves. We have to tell them together.
I sit down, and there are two stories I can write.
One: I’m autistic, and there are things I have to learn and struggle with and overcome, like wearing heels.
Two: a friend sent me a pair of shoes, and on a night dedicated to celebrating disability and community and the way my brain and my body glitch at each other, I’m going to wear them.
I want to write a story about shoes and disability, about the connections disability community makes between people who are very short and people who are awkward crashing giants, about the ways my life has gotten so much bigger, about objects and ideas that get passed from person to person, about the ways that disabled women or crip femmes or we take care of each other when no one else will.
We’re taking it one step, one story, at a time. And these are the stories I want to see.
Dangerous Assumptions
There is this thing that happens sometimes.
Parent has an autistic child. Autistic child doesn’t speak, or their speech isn’t an accurate window into what they are thinking. Autistic child is presumed to be very significantly intellectually disabled.
Years later, a method of communication is found that works for the child, and it turns out that they are in fact very smart. Very smart! The parents are overjoyed. They begin talking about presuming competence, the least dangerous assumption, that not being able to speak is not the same as not having anything to say.
They are so, so excited.
And they start talking about all the incorrect assumptions they had. If we’d known, they say, we wouldn’t have done X. If we had known they could read, think, hear us.
And it’s a big problem, because the way they talk…..they think the problem was that they treated their child like they were intellectually disabled, and they weren’t. But that’s not the problem. The problem is that they thought their child was intellectually disabled, and so they didn’t treat them like a person.
These revelations, about presuming competence, human dignity, and the least dangerous assumption—they don’t apply only to kids who are secret geniuses. They apply to everyone. They are the most important for the kids who really do have intellectual disabilities, who really can’t read or use full sentences and who really do need extensive support. The people who came up with these terms came up with them for a population where there is very little doubt that significant disability is a factor. These terms don’t mean assume they aren’t actually disabled. These terms mean assume they are a person, and remember what you don’t know.
When the neurodiversity movement first got its legs, oh so many years ago, we got a LOT of pushback from people who thought we were denying disability. And we had to be clear that we meant everyone. And I worry, more and more, that certain very academic circles have left that behind, in practice as much as in theory. It makes liars out of the rest of us, and it makes a lot of work very, very difficult.
If I told the parents in question that I am thinking about this, they wouldn’t understand. They’re not saying intellectual disability doesn’t exist, they would say. But the truth is, they’re either saying that, or they’re saying thank god, it wasn’t my kid.
And it’s a slap in the face, every time.
Confession Of A Woman In A Refrigerator (Speech Without A Title 2.0)
lol conflating disability and DEATH so casually that nobody but disabled ppl notices.
So the thing is, most of this belongs at the bioethics conference, but, but, jesus.
I remember being in high school and not being sure why, exactly, college had to be a thing, because I was going to be dead by the time I was thirty.
(Two-thirds of the way there and I still can’t see more than ten years down the line and maybe, maybe a small part of what I’m doing is motivated by now or never, I’ll do this right.)
Why would I be dead by the time I was thirty? Well, every other girl like me never seemed to make it to womanhood, it only stood to reason.
At some point, and I’ve told this story so many times and it never stops making me want to cry, I started hearing about other disabled people. People who were older than me, people who weren’t about this thing is going to kill me one of these days, people who weren’t about living with, living with, living with, not dying from disease, people who were disabled and alive and not sick, not dying, but raising hell and building lives and screaming, screaming, screaming when we were being killed.
People who used words like we.
I thought, we, yes. We. Okay. We can make this work.
lol conflating disability and DEATH so casually that nobody but disabled ppl notices.
When you are disabled, when you are traumatized and vision-impaired and autistic, even and maybe especially when you haven’t been given those access codes yet, you learn to see yourself as the walking dead. You are vast swathes of nonexistence, cut off and left for dead at every missed milestone and swapped pronoun and bruised shin and scar on your face. There are Other People, Normal People, People, and then there is you, and you are defined by the parts of yourself that match to everyone around you, and then the vast swathes of nothing. Disability is absence, disability is inability, disability is death, and you are a woman in a refrigerator.
It takes you a while to learn that you aren’t the one who put you in the refrigerator.
It takes longer to learn that it wasn’t your body, either.
A lot of us never get to the point where we can say it was you, you tried to kill me, you made me think I was dead, you screamed about the injustice of putting me in a refrigerator while you, you were the one killing me.
lol conflating disability and DEATH so casually that nobody but disabled ppl notices.
And you made me think it was my fault.
One day, I will write a speech that isn’t this one, this choked and untitled remixed stew of you tried to kill me, and you made me think it was my fault, and now you will listen.
When you’re disabled, you see death everywhere, and it isn’t because your body stands out or doesn’t stand at all, it’s because everyone talks about you like you’re in a refrigerator, like you’re not real, like you’re dead.
And it kills you.
They kill you.
lol conflating disability and DEATH so casually that nobody but disabled ppl notices.
What I am trying to say is that of course, of COURSE, of fucking course we notice, because we can’t not, because the bioethics conference has one day for beginning-of-life issues, where they try to cut us out, and then a day for end-of-life, for those of us who slipped by, because last week twins in Belgium asked the state to kill them because no one ever told them that they didn’t have to go into the refrigerator.
What I am trying to say is, my friend has a friend who uses a wheelchair and didn’t get screened for breast cancer because she’s already dead, right?
And you, you, every single one of you who said we are helping, we are saving you, something cruel and unjust has been done, and then you made disability mean death and shoved us into the fucking refrigerator. You killed us.
I didn’t know how to die until you taught me.
lol conflating disability and DEATH so casually that nobody but disabled ppl notices.
Question: if nobody but disabled people know that disability and death are distinct and not overlapping concepts, does anyone really know? Or are we just trees in the forest, falling (well, growing, would be the point,) with no one to hear?
What I am trying to say is, I am now Someone Who People Meet, and I know that there is a vast we out there, and I know that I am living and a woman and disabled and that none of these contradict, and I dragged myself out of the refrigerator by the skin of my teeth and said you will listen to me now, and this evening I felt sick when some friends offered to transcribe something for me, and I still can’t see myself making thirty.
And what I am saying is, this thing is going to kill me one of these days, and what is going to kill me isn’t going to be my back screaming at me or my eyes turning off or my head going through a wall, it’s going to be everyone who says we’re just trying to get you out of your refrigerator.
I pulled myself out of the refrigerator you put me into the day you started grading people into people and cripples. I pulled myself out the day another woman in another refrigerator told me, like passing on a secret, we aren’t dead yet. Someone let me out of your refrigerator, and you can never put me back in there again.
lol conflating disability and DEATH so casually that nobody but disabled ppl notices.
I’m disabled. I’m not dead. I’m not in a fucking refrigerator. I am living, living, living, and I am screaming, screaming, screaming.
And, just in case you should care…
Yeah. I noticed.
A Fifth Is Two Sine Curves
(This post could be seen as a self-narrating zoo-exhibit with bonus spot-the-theory-of-mind. I hope you’ll take it as a follow-up to The Obsessive Joy Of Autism, as equally about the experiences of visual processing impairments and synesthesia as about ~autism, and as a case study in the inadequacy of traditional verbal language. If I’d been taught earlier that experiences which exist independent of words are still meaningful and sufficient, I never would have had to write this.)
(This whole essay represents a dozen years of heartache, a fractured self-image knit back together, and the entire reason why I will never, ever talk about the instinctive simplicity of video editing.)
(Note: as is typical of my writings, pieces are rarely finished in the same day they are started. The voice lesson I refer to as “today” is in reality long past; in fact, due to circumstances regrettably beyond my control, it turned out to be my last. I have been unable to further explore the discovery my voice teacher and I made, and it aches.)
(This entire piece is written in a voice I don’t very much care for. My apologies.)
(I can either keep apologizing in parentheses for a lifetime, or just tell it to you.)
A fifth is two sine curves, and this is the most beautiful thing.
I’ve had a dozen years of classical musical training, and I’ve been playing with calculus for about the same amount of time. I don’t talk about either of these things with much frequency. I don’t like to sing in front of people, and I have a passionate love affair with math but hated and barely passed my classes in high school. I drink up geometry videos on youtube, and once a week I go to my voice teacher’s house and sing for the best hour of the week, and these things are secrets. Very few people know how important music and math are to me, and that’s been a deliberate choice on my part.
I don’t talk about the most sacred things, because it’s the fastest way to destroy them.
I have an intense and embodied relationship with music. Music is a lot like people, and songs are linguistic and therefore social exercises. Music teases and tells and remembers and reflects and transforms and encodes and transmits. I experience music kinesthetically, emotionally, and intimately. It is shattering.
I know a lot about music. I hate talking about it, because the things I know aren’t the same as the things you know.
My left hand doesn’t have enough coordination to permit me to play any instruments. I can, and do, sing, and I’ve spent 12 years learning to do so with surgical precision. I can’t sight-sing–I can peel apart the layers of a piece for theory, no problem, but identifying pitch and tempo and dynamic and a note’s place in the overall piece, and integrating those elements, factoring in timbre and placement, and singing them, in realtime, is simply not possible with my visual processing impairments. I rely on an ear I’ve spent years training–if there’s one other singer, or a pianist accompanying, I can do a passable imitation of first-time sight-singing even pieces I’ve never heard before.
Ever since I first joined an (auditioned, highly-selective, then-prestigious) youth choir at age eight, I’ve known that I do music wrong. At first, that took the form of being shamed for moving when I sang–music shouldn’t be a physical, embodied, tactile experience. In later years, my inability to process visually rapidly enough to sight-sing, and my difficulty holding a harmony, made rehearsal a living hell. Yet I was never kicked out, because I could still sing circles around 2/3 of the other singers, and it wasn’t that I couldn’t harmonize, just that I might sing any one of a range of acceptable harmonies and not necessarily the one I was arbitrarily assigned (or the one the composer had written,) and as long as I didn’t talk about it, no one knew I couldn’t sight-sing. (I did, of course, talk about it; lying didn’t occur to me until later years.) I trained my ear, led the 1st sopranos because the melodic options are necessarily restricted and usually sensical, kept my joy at things I had the wrong words for to myself, and kept singing.
(My life goes on
in endless song
how can I keep from singing?)
It destroyed me. I loved this, I was so good at it, it felt good and right and perfect, and yet any attempts to communicate about this were miserable failures. Singing is the only time I ever feel at home in my body, and yet I felt like a fraud; sure I could learn a new song faster than anyone using only my ear, but I couldn’t sight-sing. Clearly this was some elaborate hoax I’d engineered, clearly I didn’t have any real aptitude, and clearly, my decision not to pursue college or career in music or performance was the only ethical option.
Despite this, despite the guilt and shame and confusion, I’ve kept going to weekly lessons. It’s an hour, just me and my teacher and a piano, and as we pull songs apart and test what my throat can do, the songs resonate between my ribs. It is, essentially, an hour of breathing exercises, so it’s the most effective therapy I’ve ever had. And I’ve kept going, and today, finally, after 12 years, we figured it out.
There were signs. The music teacher at my high school had almost worked it out; he’d play two notes, and I’d hear a third, and not every student could. He talked about harmonics and melodic structure; I listened, and adored him, but had trouble talking to him. With my voice teacher, I complained that the standard system of music notation was nonsensical, bearing no correspondence to the way music actually worked, and relied on a flagrant disregard for basic arithmetic. I struggled with the idea that a fourth is supposed to sound “smaller” than a fifth, and though I could sing any note back perfectly, I couldn’t tell you which notes were higher or lower. None of the language used to communicate about music made any kind of sense to me. The spatial metaphors simply would not map. I had my own rich, dynamic, embodied and visiospatial experience of music, I could feel and see the music move, and sheet music couldn’t come close.
I’ll tell you what my teacher and I learned today, but first I need to give away my other secret: math.
My history with mathematics is, if possible, even more tortured and rapturous and bewildering than my relationship with music. As a small child, I was in love with arithmetic; my mental calculation abilities are noted on my earliest evaluations (and dismissed, of course, as splinter skills.) One of my earliest memories is of not being able to explain to a concerned teacher why 2+3=5. “Because it is,” I said. “And it’s beautiful. It just fits.” Manipulatives were meaningless for me–my eyes couldn’t process them easily, and they didn’t bear any relation to the ladders and scales of numbers in my head. I simply had to close my eyes, and think of an equation, and I would feel myself swing from number to number, landing effortlessly and securely on the answer. Easier than walking.
(There’s a hint to the eventual reveal, there.)
While I had some small troubles learning the language for arithmetic (especially for fractions, which are fun and clever enough as pointless rituals but beautiful when you realize that they actually signify multiplication and division, that you are performing meta math,) mathematics was an easy joy. Note, please, that I am talking about the art of mathematics, not the drivel and formulas we’re drilled on in school. Mathematics really is an art, and it’s inherently playful. It’s a game of “what if” and “how can I.” And when I was eight years old (and still now,) what I wanted most to figure out was how I could model, and therefore predict, events in the world around me. In particular, I was fascinated by the rate at which raindrops crossed and accumulated on my car window as my mom drove me to therapy.
So I invented the fundamental theorem of calculus.
I didn’t know I was doing this at the time, of course. I didn’t know what algebra was yet; if I’d heard of calculus, I thought it was about calculators, which I found woefully inefficient. I’d never heard of Liebnitz, and Newton had only been hit on the head by a terrifying apple, as far as I knew. I didn’t use the greek alphabet or sigma notation; I didn’t use any notation at all. I just ran some dimensional transformations in my head, checked my model for accuracy, and had a nice visual to keep myself comforted when my hands needed to be still.
Eight years later, my AP Calculus/Physics class was asked to prove the relationship between derivatives and integrals, and I got up and drew the model, and not a single one of my classmates understood. After a moment of studying what I did, Mr. Morris said, “spoiler alert, Julia just skipped to the end of the lesson and proved the fundamental theorem of calculus.”
I can’t draw it for you now; I lost the image, along with some of my more unusual human-calculator prowess, when my psychiatrist put me on the anti-psych medication regimen that ended in me dropping out of college. But I could then, and before that day, I hadn’t realized that my classmates couldn’t see that basic, innate relationship, the reason why calculus is beautiful enough to ache. I didn’t have the language for it, had never even heard of the fundamental theorem until my teacher told me that was what I’d done. I’d just been amusing myself with models and transformations, when I should have been paying attention in class.
See, that’s the thing. I struggled in math class from Algebra 1 on. I never actually took the AP calculus exam–Mr. Morris thought I’d do fine, but since I was technically auditing his class, I didn’t want to try and sit for it. And this is where the agony comes in.
Much like music, the way I experience and represent mathematics cognitively is fundamentally different from the conventional language we are taught for it. With arithmetic, this difference only really caused difficulty when new terms were being introduced. But 2+3 is always 5, and I had enough innate understanding and motivation to preserver through even the most ridiculous name choices.
This all fell apart when I got to algebra. It’s not that I lacked understanding–I’d been solving for the missing number since I was nine, and the only hardship I’d had there was, again, in comprehending the linguistic absurdity of mixing letters and numbers and shifting the missing piece to the left side of the equation. As soon as I got over that, I immediately started attempting to teach the game to anyone around me, including my four-year-old sister. Algebra wasn’t the issue. The way we represented it, modeled it, and talked about it? That was a nightmare.
Graphs on a cartesian plane have a lot of meaning for me–for another purpose (clue.) They also bear absolutely no relation to the kinesthetic and visual models I see when I craft algebraic equations. Zero. None. And I couldn’t articulate this in high school, anymore than I could make myself care about pitch or slope whether the equation came in point-slope or some other form. I didn’t understand why we were talking about graphs at all. It wasn’t until algebra 2 that someone explained to me that all of our equations were supposed to be models for those lines.
I was enraged.
I still am, thinking about it. What a stupid waste of my time. Who the fuck cared about lines? I wanted to know how to model the age distribution of my peers around me and how it shifted in relation to me as we moved through the grades, how to fit equilateral triangles with a side length of 2in inside a hexagon with 6in sides as efficiently as possible, how to predict prime numbers. Why on earth would I make an equation for a line I couldn’t even make my hands draw reliably half the time?I wouldn’t! This possibility had never occurred to me! I had better things to do!
So I didn’t care about graphs. Later, in college, my math major friend would teach me the theory behind linear algebra in half an hour, and I would concede that graphs were pretty fucking intense, but in high school, all I knew was that I was being asked to humor, to indulge teachers who were never sure if I was a genius or in the wrong class in their fetish with graphs that my eyes, more often than not, couldn’t even process as a whole.
It did not go well.
There were parts of algebra, of course, that I loved. I enjoyed modeling numeric patterns (“series,” I was told, and “summations,” I just called it numbers) like 2n + 7, and there were moments when the graphs for these, or for my favorite exponents, lined up with the stacks of numbers I saw in my head, and the graph became, fleetingly, meaningful. (It was argued that graphs themselves were by definition simply visual models of numeric patterns, and therefore should have been my favorite thing. I defy anyone to look at something like THIS
and honestly tell me that they instinctively see either 2n + 7 or 9, 11, 13, 15, etc. in that.) Systems of equations were a game that made me laugh and resembled the way I’d play with numbers in my notebook margins when we were supposed to be caring about matrices. Matrices were for our calculators; I was a human calculator, insulted by their existence.
My first three algebra teachers understood none of this. I did well in algebra one, as long as I wasn’t asked to graph anything; as far as I was concerned, I was doing slightly fancier arithmetic and then humoring Mr. Morris by labeling things as he wished. Algebra 2 was all about graphing though, and it made me want to die–and now, in an exciting plot twist, the equations had gotten long enough, and the graphs complex enough, that my visual process started undermining me, scrambling letters and transposing numbers and fragmenting graphs, and with it, my grade. But I passed, by the skin of my teeth, and had a brief reprieve in geometry, and then got a better teacher for precalculus who, in the last two weeks of class, realized I had a language processing problem. We stayed after school one day and hacked enough accommodations that I could FINALLY start to use the conventional vocabulary and start training my eyes to read equations like stories again, the way 2+3=5 is, and then graph the story out accordingly. Just in time for the bonus unit on calculus.
I looked at a derivative for the first time, and my models and raindrops and joy came rushing back, and I was in heaven.
Derivatives and integrals made sense because the transformations they undergo are multi-dimensional, just as the ones I assign my models are. But I didn’t ace calculus. I took an introductory course at Stanford the summer before my senior year of high school and passed on sheer intuition despite missing 1/3 of the classes, but the first few tests I took in my AP class came back with failing grades.
My teacher and I worked it out. It was, as always, a visual processing issue: permitted to solve an equation on a white board, standing up, with more space than I could possibly use, colored markers, writing as large as I needed, and only one problem presented at a time, I could earn 100%. Give me the same test, after I’d already taken it on the whiteboard, but this time package it as a two-page test on an 8×11 inches sheet of paper, and I’d get a 40%.
It seemed easy enough to accommodate: let me take my tests on a whiteboard, with my teacher dictating each problem to me one at a time, and I could be the best in the class. The beauty of reasonable accommodation! But it wasn’t that easy; the teachers were working to contract in protest of their current salary, so my teacher couldn’t stay after school or come in early to test me. If I’d had an IEP I would have been protected, but my parents were told that students with IEPs weren’t permitted to take AP classes. The solution, the administration declared, was that I would audit the class. I could sit in on every class, do every lab and homework, receive no credit, have my motivation and self-esteem destroyed by a year of failing every test but doing any in-class problem on the board perfectly, teach my class the fundamental theorem of calculus but be humiliated every day by my inability to correctly read and copy equations off a sheet of paper, and everybody won.
I don’t remember much of the class. I was an anxious, humiliated, depressive mess, unable to concentrate, still haunted by graphs. It was a combined calculus/physics class: I loved the modeling, but my language processing made the word problems we were given for physics exhausting. There are bright memories, of course–drawing out the fundamental theorem, hacking labs, solving problems at the board, practicing integrals with Tommy for fun, tutoring a classmate over Facebook chat for a test that I failed with a record- breaking amount of transcription errors but she got an A+ on. But I hesitate to call myself mathematically inclined now, and that needlessly hellish year is why.
Math and music are some of the most sacred and meaningful things in the world to me. I don’t talk about them, because that requires a 12-year trauma history and interfacing with a language that treats these two things exactly opposite of how the should be.
(Do you know the secret, yet?)
This is what I learned, at the last music lesson I ever took: I see musical compositions as the graphs I spent years being tortured with perversions of, and I move through numbers like a song.
The spatial metaphors we traditionally use for music (notes are higher or lower; a second is a whole step, a third is two whole steps, etc.) fall apart for me not only because of their flagrant disregard for basic mathematics, but also because my primary concept of music lies in harmonics: in the spaces between tonic and supertonic, in the beats of the frequency of a given pitch, and all the different ways we can stretch and collapse and layer and color them. This is what I see, this is what I hear (and the two are, in this instance, the same,) every time music plays. Sheet music is as pale an imitation of this as a graph of y=3x is of the multiplication table. And yet, the transformations I drag my models through, the process of solving an equation (and I’ve never been much of one for solving, really; just give me a model and I’m happy, and maybe that was the problem with algebra all along,) is actually perfectly encapsulated by the language and metaphors musicians use to interpret sheet music.
And I just wish that once, at some point, just once during those long twelve years, someone said to me “this language isn’t working for you. Let’s find a new one.” Because then I could have told you, at eight years old, before I could even conjugate reliably or deviate from my scripts, that:
this is what C sounds like:
this is what G sounds like:
this is what a fifth sounds like:
and this, Mrs. Lowenthall, is why 2+3=5:
Someone who moves like you
Buckle up kids, because this gets long and personal.
So, a long time (~7 months) ago, in a galaxy far, far away (rural New Hampshire,) there lived a sad little girl (or KICKASS ADULT,) named Julia who just so happened to have a friend named C. C and Julia had spent the past several months talking too much altogether about Glee, and C had begun to push for Julia to add a second show to her plate. Some brightly-colored sitcom about derelicts going to a community college.
And Julia was skeptical, but C was persistent, for she knew that if Julia liked the first two minutes, Julia would have a new favorite show. See, C knew something that Julia did not.
C knew that Abed Nadir existed.
Now, there are a couple of things you, gentle reader, must know about Julia in order to appreciate what happens next. First, you must understand that, ever since she had been born and maybe even before, Julia had been autistic. And second, you must understand that, because of this, Julia had spent her whole life watching and learning stories where she had no part, no point of entry, and no value. Julia was trained to imagine herself in stories as someone she was not and could never be, and to define the story of her own life in terms of how it failed to be reflected back to her. And sometimes, most of the times, Julia forgot that she was a person. Stories are important, and she didn’t have one. You are a mistake isn’t a story. It’s barely even a sentence.
I must warn you now that this is not a story of how C or Dan Harmon or Abed Nadir or even Julia herself saved or healed Julia. It’s in the script, but Julia wouldn’t have a voice in any of those stories, either. No, gentle readers and vicious tumblr-ers, this is a story of what it means to start a new story and see on your screen, for the first time, someone who moves like you.
Do you understand what that means?
It’s probably not something you’ve ever really had to think about. But how someone moves is the first thing telling you whether or not they might be able to be you, and you them. And for the first time in Julia’s life, she looked at a character on television and saw a yes.
Abed Nadir walked onto Julia’s laptop screen, and nothing and everything changed.
For the next seventh months, there was a lot of CAPSLOCKING IN GOOGLE CHAT at C about Community and Abed Nadir, but very few words elsewhere. Which was odd, because when Julia liked things, she tended to talk about them too much. This was one of many things she and Abed had in common.
Except, here’s the funny thing. Abed said “I just like liking things,” and it wasn’t just not-punished, it wasn’t just okay—either of which would have been remarkable and unbelievable—no. It was good.
And Julia, who had endless words for a great many small and unimportant things, couldn’t say anything more about Abed beyond he moves like me.
Abed Nadir, you see, is an autistic character.
There’s a difference between TV Autistics and autistic characters on television. TV Autistics—Bones, House, Sheldon, Sherlock—are caricatures, and, not coincidentally, all fan-diagnosed. They are socially awkward/anti-social/socially maladapted, eccentric geniuses free of any serious adaptive functioning limitations, motor issues, sensory sensitivities, or language differences, able to manage independently in all major areas of daily living, with a bonus side of savant skills and the empathic range of a rock. They’re awesome, but they’re a stock character, and they manage to simultaneously hint at the autistic experience without actually meaning it. It’s like that poster about gay subtext in popular that was going around a while ago
the irony being, of course, that for a show that is “so gay,” it’s actually not gay at all. The people in charge have found the perfect ratio of homoerotic subtext (all of it) to actual gay characters (none of them) to keep the fangirls creaming their pants and the money rolling in. No one involved has any intention of meaningful inclusion or exploration. You avoid any potentially unpleasant consequences, because the choice to have a gay character was never actually made.
It should be noted that autism isn’t the only reason Julia grew up without People Like Her on television, and it’s not even close to the only reason she has a Thing about stories. And that’s the curious thing about these TV Autistics—someone who’s watched one of them in action is much more predisposed to assume that since Julia is autistic, and since she’s got this extended metaphor (bonus points if you say perseveration) about stories going on, stories must be her Special Interest, the framework through which she filters the world, the poor half-human thing.
And they are, but that’s because Julia is, shockingly, a person at her core. And people need stories.
Which brings us back to Abed.
It’s entirely possible Julia over-identified with Abed, just a tad. Which struck her as first a bit odd—they’re nothing alike, Abed thinks The Breakfast Club had a plot and likes falafel and his mom had the decency to leave— and then as more than a bit precarious. This wasn’t supposed to happen.
(Somewhere, fiddling with her contacts, C arched an eyebrow and said “it wasn’t?” and Julia cyber-kicked her.)
Abed Nadir walked around like a bird or a giraffe, and he couldn’t do thumbs-up and he talked too fast and knew too many things and he was sharp and suspicious and easy and trusting. He did things that were simultaneously uncanny/creepy and sweet/thoughtful, and he couldn’t do bills or read clocks but he could tell psychiatrists to fuck off and he could fight with his best friend when his best friend tried to take charge, and he was jealous and sharp with his crushes. He had friends and private worlds, and all the scars that come from growing up a mistake, and things were imperfect and messy and painful and visceral but he always emerged okay.
Abed Nadir said “please don’t do a special episode about me” and Jeff Winger promised he “wouldn’t dream of it.”
And then he told Abed to pick one reference, and Abed picked 16 Candles, so they sat on the counter and ate chicken.
(And Abed didn’t mind who he was kissing so long as he got to be Han Solo, and also he delivered several babies and got to be the good cop and the bad cop and used his diagnosis to get rid of an unfortunate lab partner and took advantage of a stranger in a bar’s patience so he could talk about Farscape.)
And stories are a scary and messy business, full of magic and demons, taunting possibilities and rules-that-aren’t, things we can’t have and altogether far too many opportunities for a sad little girl’s heart to be ripped out of her chest, and Julia kept watching, every week. And you must understand that asking Julia to pick one Abed moment is liking asking Abed to pick one reference.
You must understand that one story is infinitely bigger than zero, and it may still be very small and nowhere near enough, but it’s something.
And yes, her heart was eventually forcibly extracted when Dan Harmon broke his promise and Virtual Systems Analysis was the dreaded Special Episode. And Julia remembered how to breathe, and stitched herself back up, because she hadn’t really needed that heart, anyway. And when it turned out that someone else would be in charge of Abed next year, she remembered what she had always known to be true about happy endings and said goodbye, mourned more than she had for any corporeal person (which was still not very much,) and folded away that part of herself and went back to not existing.
But for seven months.
For seven months, she had.
Truth Is
Author’s note: Yesterday in the blogosphere there was an Autism Positivity Day Flash Blog, sparked by one author noticing that someone had found their blog by searching “I wish I didn’t have Asperger’s.” Due to my own situation, I couldn’t participate, but today is Blogging Against Disablism Day, and I still have something to say.
Sometimes in the morning I am petrified and can’t move
Awake but cannot open my eyes
And the weight is crushing down on my lungs
I know I can’t breathe
And hope someone will save me this time x
Dear “I wish I didn’t have Asperger’s,”
I want you to know that I understand.
That’s the first thing. This isn’t going to work if we aren’t honest with each other, so, let me be honest. I’ve thought a lot about that mythical cure, and there have been days, many days, when I didn’t have to think at all–when I knew that, if I had a chance, I’d take a cure in a heartbeat.
I need you to know that I understand.
I do. I do. I want the things a cure could give me. I want to have the leading role in my own story, and parts in others’. I want to be able to do the same things everyone else can do in the same way without any extra effort. I want to not feel like a freak. I want to feel safe. I want to be someone my parents can love. I want to know I have a future, and I want to not have to blaze that trail by myself. I want to have worth. I want other people to not think they have a right to me and my space, or else I want it to stop bothering me. I want my words and experiences to make sense to other people, and I want their words and experiences to make sense to me. I want to have to work just a little less hard. I want to have a college degree, a job, and a house of my own, and I want to be able to live wherever I want. I want to be able to assume I’m a person. I want to not have a month out of the year dedicated to my brokenness. I want to be able to assume that it’s not me, it’s them. I want to wake up and not be terrified or already tired.
I want a lot of things.
It’s not a bad thing, to want things.
Check in: can you see, now, that I really do understand? I hope you can. I get a couple of visits from you, or someone with the same keyword search, every week, and I want you to know that you aren’t alone, and you aren’t wrong.
Okay. I’ve been honest with you. Now I want you to be honest with me. Can you look at the list of things I want, and tell me if you see a pattern?
I’ll wait.
While I wait, I figure, I might as well tell you some other things I’d like to stop being. In addition to no longer being autistic, I’d also like to be cured of
-being a lesbian
-being female
-being so obscenely tall
Really. I’d like to get be able to get married to someone I love in every state. I’d like to be able to walk down a dark street without fearing for my safety. I’d like to be able to sit in a chair designed for someone of my height. And none of those things are happening right now, so I guess I can either fight for them to change, or try to change myself.
Okay. Did you find the pattern? It’s okay if you didn’t. It took me awhile to understand it. It’s subtle.
Every single one of those things I want?
Have nothing to do with being autistic.
Really. Not a single, solitary one.
I should have a leading role in my own story. When I don’t, it’s because other people aren’t treating me like a person. That is not my fault. Pretty sure the one in the wrong there is the one who thinks that a disability means you aren’t a person.
Why do I want to be able to do the same things as everyone else? Why is that important to me? If I lived in a world where it was recognized that there are multiple ways to do something and that this is okay and the things I do and the ways I do them are valid and important, would I care? Would I even realize this was something to care about at all?
I would know that I have a future, and that it’s a bright and near and real one, if I knew growing up that autistic adults existed. Guess what–they do, they have for thousands of years, and on the whole, they’re doing just as well as anyone else.
I want to have worth–okay. See, if I had a friend who felt worthless, I’m pretty sure I wouldn’t tell that friend “you’re right, you’re pathetic. Please change everything about yourself.” I’m pretty sure I would tell that friend that the people making her feel worthless were abusive assholes, that she was good at plenty of things, that she was a fantastic person I was lucky to know, and that human worth isn’t some tangible thing we can gain or lose. And if I can say all of that to a friend, and mean it…why can’t I say it to myself? I’m not special. I work by the same rules as everyone else. And that means I am worth something, whether I believe it or not.
I can keep going through these. I do make sense to a few people, who take the time to listen to me the way I need to be heard, and they make sense to me. That is how relationships work, and there are lots of different ways to communicate. I can have a job, a living situation I am in charge of, and all the education I want, with the correct supports, just like everyone else. It is not my fault that the supports I need differ from the majority, and that is not an excuse or invitation to mistreat or discriminate against me. Etc etc etc.
In the end, there are really two things I want when I say I wish I wasn’t autistic or I want a cure. I want to not feel like a freak, and I want to feel safe. Those are hard, scary things to feel and to admit. And, because I’m being honest, I have to ask something even scarier.
What if being cured didn’t fix those things?
Because ultimately, if I took a cure, I’d be surrendering. Instead of fighting for my right to be treated and valued as a human being regardless of disability, I’d be letting go, giving in, and letting myself be changed into someone easier, someone acceptable, someone convenient. And I want to be clear–there is nothing wrong with wanting things to be easier or wanting to feel safe or accepted or just being done fighting. That just means that you’ve been asked to be much, much stronger than everyone else for much, much too long.
But if, in order to be safe I have to stop being me?
Then I’m really not safe at all.
As long as being disabled means being unsafe, then no one is safe. Not really. Disability is a natural part of the human experience according to the ADA. Most people will experience some form of disability, for some period of time, at some point in their lives. So long as we as a society keep permitting exceptions to rules like everyone is a person and treat people like people, none of us are safe. Safety earned by staying within acceptable margins isn’t safety at all.
I promised to be honest. Part of being honest is looking at what my words actually mean, what lies beneath them, what ideas are controling what I say. And underneath every I wish I wasn’t autistic is a I wish people would stop hurting me or a I wish the world had room for me or a if I blame myself, I can feel like I’m in control.
And it’s okay that I feel this way. Well, it’s not okay that anyone ever has to feel this way, but I’m not bad or wrong for feeling it. Neither are you. But feelings aren’t the same as reality, and in the end, if we weren’t autistic anymore, there would still be people hurting others just because they can and just because no one ever told them to stop, and we’d still know that it takes only the slightest deviation before we’re vulnerable again. A cure won’t ever be able to change that.
What will change that is something a lot harder than a magic pill. What will change that is enough people saying enough is enough and doing the hard work of making our world one where everyone is welcome, all communication is honored, and everyone is safe and valued. And that is going to take time, and there are going to be days, still, as we work to make that happen, where you, where I, will wish we weren’t autistic, because sometimes it just hurts.
But it will change. It’s changing now. And you shouldn’t, and don’t, have to. You are amazing and sufficient and lovable just the way you are, and I really, really hope you’ll stick around so that one day the rest of the world can know it, too.
Just Stimming... 
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