“If she doesn’t get enough sleep, we get behaviors,” says a mother.

[I sure hope so] I think. But outwardly I nod, because we need to stay on track to address the sleep problems.

An hour later, I am reading a report from a speech therapist.

“No behaviors today,” she writes, perkily.

[Wow, I hope that’s not true.] I think. [Was he comatose?]

So, “behavior” is literally in my job title. As a result, I spent a lot of time talking to people, largely adults, about the behavior of people, largely children.

And so I hear and read a lot of things where people use the word “behavior” as a shortcut for. . . “disruptive behavior” or “inappropriate behavior” or maybe just “behavior I don’t like.”

There’s a lot of baggage of course in what behavior is considered disruptive or inappropriate or challenging. And I’ll get to that.

But first I want to unpack the very idea of “behavior” itself. What is behavior?

Behavior, friends, is something an awake and conscious person does using voluntary muscles.

This is not what Merriam-Webster would tell you, or perhaps your nearest psychologist, but it’s the best I’ve got.

Awake and conscious, to remind us that things like sleepwalking aren’t actually behaviors. I was in some internet conversations recently about monitoring behavior, and how not every behavior should be monitored, and I made what I thought was a pretty good argument that also some things that are not behavior should be monitored. Like sleepwalking.

Also, voluntary muscles. This does not mean that all “behaviors” are done purposefully and consciously. They aren’t. But OK

If I tap your knee (actually your patellar ligament) with a reflex hammer and you kick me, that’s not a behavior. That’s a spinal reflex.

If I grab your toy and you immediately kick me, that’s a behavior, although it may have been so fast that it was basically an instinctive reaction.

If I grab your toy, and ten minutes later you walk over and kick me, that’s also a behavior, and a different one from above.

Breathing is generally under brainstem control and is not a behavior. But holding your breath is, whether it’s a breath holding spell in frustration, or a response to my directions to “take a deep breath.”

Context is everything.

You know what else is a behavior?

Sitting in a chair at school and raising your hand

Following your speech therapist’s directions

Answering when asked what you want for a snack

So we really need to stop using “behavior” as a shorthand for “behaviors causing problems.”

As a child, I always loved dandelions. As an adult, preparing to teach a class on plants, I was mesmerized reading that a rose would be a weed in a cornfield.

Sitting still and quietly is an expected behavior in math class when the teacher is talking

Sitting still and quietly would be an extremely disruptive behavior in marching band.

So an important step is modifying “behavior” with some context. Adjectives help. Aggressive behavior? Disruptive behavior? Challenging behavior?

That at least gives another person some idea of what is going on. “No behaviors today” doesn’t tell me how speech therapy is going. “Behavior was appropriate” tells me something useful. “Jacob sat for 20 minutes and followed directions” would be better still.

This still leaves the larger problem as to how terms such as “appropriate” or “disruptive” are even defined. Sometimes there are clearly stated rules and expectations. Some of these are for legitimate reasons (no food in science lab) and some for more arbitrary reasons (no water bottles in class at all. Many classroom rules are designed to maintain a setting where most students can learn.

One popular social interaction training program carefully uses the terms “expected” and “unexpected” behavior, instead of “good” or “bad.” In the materials I have reviewed from this curriculum, there is very clear negative judgment placed on “unexpected” behavior. Another term I’ve heard a lot is “choice,” as in “make good choices” or “he has been making bad choices in school.”

Behavioral expectations, whether called good and bad, appropriate and inappropriate, or tomorrow’s next set of antonyms, are generally set by the adults for the children, and by the neurotypical majority for its own convenience. This is sometimes done more explicitly than other times.

If the child is playing noisily in my exam room and it bothers his mother but not me, is that a behavior problem?

Can I correct a father who is requiring a child to “use your words” before having a snack he requested by pointing?

And where do I even start with a child who seems to be doing no academics in school, but who gets a list sent home daily of “behaviors.” His family was hoping for more reading instruction.

“What kind of behavior challenges are they having in school?” I ask.

“Oh, if he cries when they ask him to do something, or if he flaps his hands.”

I monitored my own behavior very carefully. I did not raise my voice. I did not cry. I did not even flap my hands in front of my face. And I refrained from visiting the classroom and dismantling it bit by bit. Instead, I printed out copies of “There’s a flap for that” and “Quiet hands” and typed out recommendations for increased attention to reading.

Preparing written reports is a behavior, too.

(I began writing this before I read this and the one is not in direct response to the other. But you should probably read that one too, if you haven’t yet.)
I’m standing on a bridge. It’s a good bridge, with a walking path, which shows they thought about people like me when they built it. There are people walking and biking all around me. Over on the road I can see cars and buses and loud motorcycles going way too fast. A barge passes slowly under the bridge next to me and small pleasure boats and a tourist boat go by. Ahead is the varied ribbon of a freight train passing in front of me, too far away to count the cars. I don’t know why I count train cars, anyway, since I never remember the number to compare it to any other trains I may see, but my family taught me to count train cars as a preschooler when we were stopped at railway crossings and it stuck. A light rail train goes over the next bridge over. I hear rotors and look up to see a helicopter. Automatically I search the sky in the direction of the airport, but I don’t see any airplanes. Later, I relate this story of transit near-completeness to another autistic friend who said, “no airplanes?”

Transit geekery is stereotypically autistic, although I know non-autistic transit geeks and plenty of autistics who could care less about transit. Mine is a pretty mild case, compared to folks who know the engine numbers of the local trains that come through at various times of day. I know very little about transit outside of what I need to get myself from point A to point B. And I’ve been counting train cars for nearly 40 years.

Straight ahead lies my immediate destination, an inclined or funicular railway. At one point, there were 23 funicular railways along this cliff. Now there are only two left, one of which is solely a tourist location and the one I am approaching, which has been incorporated into the local transit authority. I ride it on my transit pass, although it’s not really a pass in the way I think of as a transit pass, where one can purchase unlimited rides for a set period of time. It’s more of a transit debit card. At any rate, my ride up the Incline, as it is called locally, counts as a bus ride. I am amused that we call it the Incline. The Incline is the slope up the mountain, noun. The railway is Inclined, verb form. And more specifically, it is a funicular, where the weight of the car going down does most of the work to propel the other car to go up. The Italian song, Funiculi, Funicula, which many of us sang in our childhoods, is about a funicular railway.

Now I sound as though I’ve swallowed an encyclopedia, a taunt frequently lobbed at me throughout my childhood. I was actually in high school before I sat down to read an entire encyclopedia, and I skipped the sections on geography that did not interest me. The diagnostic manual says that autistic people have reduced ability to share our enjoyment and interests. The autistic community describes a spontaneous sharing of interest, regardless of the interest of the audience, as infodumping.

Some “experts” have claimed that autistic people have unusual interests, while those with Asperger’s are the ones who collect information about their interests. This seems as false a distinction to me as the one between autism and Asperger’s itself. I like trains but don’t have very much information about them, or desire to obtain more. I have gathered a few facts about funicular railways, mostly from Wikipedia, but I wouldn’t begin to call them a special interest. I do collect information on other interests of mine, from disability to show tunes to favorite TV shows.

I am watching old ER episodes now, after not having seen them for many years. At one point, I had seen all the episodes multiple times. I have videos of most of them. (I have no working VCR.) The first web pages I sought on the internet, when internet was first a thing, were ER episode summary pages and ER discussion sites. ER, at one point, was a very highly rated, popular show. It was still on the air when I was in medical school, and every now and again I would try to join a conversation about ER. The only thing is, even with this shared, very popular interest, I was apparently doing it wrong. I was interested in the medicine, the portrayal of a specific disease, and the practice of medicine, such as the way residency or hospital hierarchy was portrayed. I was interested in – well, more like infuriated by – errors in continuity. I was interested in the way disability was portrayed on the show, particularly the character of Kerry Weaver but also other characters and arcs throughout the series. The conversations I tried to join were almost invariably about who was romantically interested in whom.

Apparently, I was doing ER wrong. I did Harry Potter wrong, also, fascinated by the language choices and world building and characters, not the romance. I’m probably doing something wrong by making sure I used the word “whom” correctly in the above paragraph.

In autism, one of the diagnostic criteria is the presence of an interest that is considered atypical for age either in topic or intensity. Garbage trucks are considered an unusual interest for anyone at any age. Horses are a common interest for 10 year old girls, but an interest in horses to the exclusion of all other topics, is considered unusual, or abnormal by those doing the considering. Those doing the considering are generally non-autistic professionals.

Sometimes the one doing the considering is me. I know the master’s tools will never dismantle the master’s house (http://neurocosmopolitanism.com/throw-away-the-masters-tools-liberating-ourselves-from-the-pathology-paradigm/, but right now I can only push the limits of the master’s framework so far. Sometimes I have to decide whether an interest in Mickey Mouse or My Little Pony or physics “counts.” The fact that I’m using my special interest in autism, also called my professional degree, to help make these determinations, is both funny and frustrating.

We’re allowed to like things. And we’re allowed to like things in the way that we, well, like to like them.

We’re allowed to like cars and flags and Mickey Mouse and bottle caps and pigeons and specific brands of soda and show tunes. We’re allowed to like trains, whether Thomas in particular or trains in general, whether we memorize the engine numbers or count the cars or plan rail trips across the country or apply for work at the local transit authority or just vaguely “like trains” in a way that standing on a bridge seeing a train makes us feel all happy inside.

This isn’t pathology. We don’t need to have our time with our special interests restricted, beyond reasonable restrictions such as having to meet requirements of work or participating in class or sitting down for meals. We don’t need to have our favorite toys put away to make us play with other things. We definitely don’t need to have our interests held hostage as the positive reinforcers of behavior therapy.

All around me I see people wearing the color of their favorite sports team and talking about games. They seem happy. I have no idea if they feel the same happy watching sports and talking about sports that I do when I am watching an ER rerun for the 50th time and repeating the dialogue, or looking up the books that served the bases of musicals or counting cars on trains. I hope so. I can’t ask because there’s no way to put that feeling into words. The closest I’ve seen is https://juststimming.wordpress.com/2011/04/05/the-obsessive-joy-of-autism/" (The obsessive joy of autism.)

The internet tells me this is the 12 annual Autistic Pride day. Laura Hershey wrote the amazing poem about disability pride, http://www.thenthdegree.com/proudpoem.asp" You Get Proud By Practicing So I suppose every time we continue to count, play with, talk about, learn about, collect and otherwise delve into our pleasure, we are practicing our pride.
My prior Blogging Against Disablism Day posts are (2006), (2007) (2008) , (2009), (2010), (2011), (2012), (2013), (2014), (2015) and (2016) on Live-Journal. This is my first year (actually my first post) on Dreamwidth

The question is so common, I often answer it before it is asked. Scripting for the win.

“Will my child ever - ?”

Talk? Talk more? Walk? Be in a regular kindergarten class? Have friends? Graduate from high school? Go to college? Live independently? Fall in love, get married, be a parent?

In very, very rare cases, some of these questions can be answered. There are a few biological conditions where one can say with certainty that a person will not be able to walk, for example. Not many, but a few.

But in most cases, the answer is “We don’t know.”

Even more importantly, the answer is, that in most cases, anyone who claims to be able to predict the future development and life of a very young child doesn’t know. Not the people who say “she will never” and not the people who say “he’ll grow out of it” or “with treatment, your child’s diagnosis will go away.”

Following the “we don’t know,” though, I say something else. Not that a disabled life can be a happy life, which is true but not something most families are ready to hear in this moment. Not, “what if your kid is asexual, which is a real thing, disabled or not, and doesn’t want to fall in love?” which is also true but is also not something most families are prepared to discuss about their two year old who was just diagnosed with autism or cerebral palsy.

No, I say, “I don’t believe your kid is finished.”

Actually, I generally use the child’s name, here. And age. And other specific details. Because it’s not just a script, it’s a conversation. “I don’t believe that Matthew* is finished. He’s two. Look what he’s already learned. I don’t know if he is going to talk more, although most kids do. But I don’t think he is finished. After all, I learn new things every day and I can keep learning. So can you. If we, as adults, can keep learning, why should we set artificial deadlines, that if he doesn’t talk by a certain age, he never will.”

*Not his real name. Unless it is. I see a lot of Matthews. And a lot of Jacobs. And Elijahs. That’s not a breach of confidentiality. It’s a statistical reality. But I don’t think I’ve said this about a Matthew in awhile, actually, so I’m going with Matthew.

Sometimes I quote a study about autistic kids who started talking between 4 and 8 years of age. Sometimes I don’t. I don’t usually bring up Einstein, but sometimes the parents do. I occasionally bring up Stephen Shore, who didn’t talk until he was 4 and has a PhD and I have heard him speak and he has authored books, etc.

It’s sticky to do this, because the “X didn’t Y until she was Z and NOW” trope is actually really ableist. I mean, it’s real, that people develop skills and abilities past the typical age, all the time. But the specific skills and abilities and traits aren’t culturally neutral. There is such a high premium placed on walking, on talking, on living independently, on romantic relationships, and in some communities, on certain levels of academic achievement, that holding these things out as possibilities or probabilities devalues the lives of people who can’t or don’t attain those goals.

But there is no way to go into all of this at the first visit nervous parents have with a new doctor.

After all, if I do my job right, they will be back for further conversations. We’re not finished.

I was fifteen when I learned how to tie my shoes. This was not for lack of people trying to teach me at a more typical age, but I didn’t have the motor planning skills or the visual processing skills, or the language to describe my visual processing and motor disabilities. All I knew is that I had tried and failed and tried again until everyone got completely frustrated, especially me. I actually didn’t learn on shoes at all. Asynchronous development being what it is, I learned to tie a lace while standing on a scaffold learning to hang theatre lights. My teacher, a girl a few years older, patiently taught me how to use the wrench and the various parts of the light. She then told me to tie the cable to the pole using a shoelace. When I asked how, she told me to tie it like a shoelace bow or half-bow. When I explained I didn’t know how to do that, she showed me a half-bow. Slowly and carefully. Two stories up in the air on a scaffolding.

And so I learned to tie shoelaces. If you had asked me at fourteen if I was ever going to be able to tie shoes, I would have shook my head and muttered something about how sad I was Velcro and buckle shoes were not readily available in my size.

Because, you see, tying shoelaces is a useful skill. It opens up a wider range of shoe options. But it is not a necessary achievement. It is not, for everyone, a possible achievement. And people who can’t tie shoes now but may be able to tie shoes later, as much as people who will never be able to tie shoes, are entitled to a range of other options, from Velcro to buckles to parents who tie shoes without comments about “isn’t it about time you. . . “ to personal care assistants, and to potential employers who do not judge applicants by the shoes they wear.

My worth, as a 5 year old and as a fourteen year old, should not ever have been judged by the fact that I couldn’t tie shoes then but would be able to learn some day.

One problem with the term, “developmental delay” is that is suggests a goal that should be met, just late rather than never.

We’ve all got a lot of ableism there to work through. I’m certainly not finished there.

Yesterday I helped run an unusual, if not unique event, a celebration of autistic community for autistic people of all ages, families and professionals. It was a party cleverly disguised as a resource fair. We borrowed a sensory gym and brought in piles of fidgets and books. In the spirit of Autreat, the first autistic run autism conference, we offered what Jim Sinclair described as “opportunity without pressure.”

Professionals from different parts of the community met for the first time and shared information. Parents got a chance to talk to each other, professionals and adult autistics. Kids climbed, assembled trains, stimmed, drew. Someone spent half an hour in the back hallway reading through a book I had suggested might help her in her work with a new client. A parent asked me for books that his child could read about autism.

One invited professional, a speech therapist demonstrating AAC programs, commented that it was good for her to see autistic adults. So much of her work is with young children that she doesn’t really have much chance to see their possible futures. I agreed. Then I handed her a book open to a chapter written by one of the adult autistics in the room running the event about the benefits of typing over talking.

I had a few minutes to speak with one of our exhibitors, from a local disability history project and I talked about my work educating other health care providers about the realities of disability. He asked if it was frustrating, and of course it is, to hear negative and stereotyped notions about disability over and over from professionals working in disability related fields.

And yet, I answered, things are changing. Often at glacially slow speed, I hear the language used by my coworkers shifting, away from function labels, away from “suffering” and “wheelchair bound.” They may not know of books written by disabled adults to share with patients, but they know they exist and to ask me for titles. They ask me to speak on the topic of advocacy.

I looked around the room, full at that point of about 40 people talking, learning or just being disabled together, at an event run by disabled adults and hosted by a children’s rehabilitation hospital.

“I don’t know if this would have been possible even five years ago, here, in this city or in this organization,” I mused.

Of course there is still a lot of work to do.

But as I often tell my families, none of us are finished.
On the eve of April, Sesame Street announces the development of a muppet with autism. This muppet, Julia, has been a character in an on-line book for about two years. Now she has been built into muppet form.

(Personally, I’ve long felt that Bert is autistic. Bottle caps? Pidgeons? Oatmeal? Just wanting to be left in peace and quiet? But that’s another story.)

Sesame Street has a long history of doing disability well. When people ask when I decided to be a Developmental Pediatrician, I sometimes say, "since I was 4 and tried to learn sign language watching Linda on Sesame Street." I remember Big Bird’s excitement when Linda got a closed caption device and could “watch television for the very first time.” I remember when Itzhak Perlman appeared on Sesame Street. He and a young violinist played, and remarked how things that are easy for some people (stairs/playing the violin) are hard for others (stairs/playing the violin. Maybe that was when my career started. I remember the wheelchair-using muppet princess who needed a ramp to get out of her castle. I remember real children with disabilities on the street, Tarah and Emily, who both talked about their disabilities, and a little boy with Down syndrome whose name I did not know at the time who was just there as part of the crowd. I assume he was Jason Kingsley. His mother wrote for Sesame Street and wrote the famous/infamous Welcome To Holland essay. Jason is now an adult who has co-authored a book Emily is now an adult disability blogger worth reading.

With Julia, they did some things well and some things badly. The character is a girl, which helps buck stereotypes. She flaps her hands. She is verbal but not as verbal as other muppets her age. She plays with the other muppets sometimes and does her own thing sometimes. I've seen some criticism that Julia is explained by the other muppets rather than explaining herself, but I think it would probably be less realistic to expect a 4 year old autistic muppet to explain autism than a 4 year old muppet with some other disabilities.

One thing they did well was consult with autistic adults in the development of the character. At least, ASAN representatives report they were consulted. Representatives from Autism Speaks and other parent organizations were consulted. Lots of parents and professionals were consulted too, but some autistic people were actually involved.
What's interesting, though, and by "interesting" I mean "infuriating" is that Sesame Street does not seem to have mentioned any autistic input to the media. 60 Minutes did an entire segment that I stumbled on by accident. The only time the journalist, Lesley Stahl, addressed someone autistic was when she talked to Julia herself. It was very cute and all, having her talk to Julia and Big Bird and Elmo, but in contrast they showed rooms of professional experts who had been consulted. Then they started making a big fuss about how the puppeteer is the mother of an older child with autism. They showed brief video of him but no one talked to him or asked his opinion. There’s a few articles that quote parents talking about how pleased their autistic children are seeing Julia. But not a one autistic person is directly quoted.

When autistic people speak up online about this omission, they are told that the puppeteer is the mother of a child with autism as though this should

On the eve of April, I witness an online conversation about IEPs. Someone mentions she was never permitted at her IEP meetings. The response is horrified, doesn't the parent HAVE to be there? No one recognized that the writer was referencing meetings about her own IEP. (While the student is supposed to attend in the US, this is not a requirement in the country where the poster lives.)

On the eve of April, I prepare to give a talk on autism and advocacy considerations for teens transitioning to adult care and services. The target audience are parents and professionals. The speakers are all professionals, some of whom are also parents. We have a fee for professionals and a lower fee for parents. We don't have a fee for self-advocates because none of the planners thought about them as a potential target audience. There aren't any (openly) autistic people speaking because none of the planners thought about them.
At one point in my talk I plan to quote a friend who is an autistic special education teacher. I expect I will have to say that multiple times before people catch on that this person is actually autistic, that I'm not just referencing the fact that she teaches autistic students (which she does, too, sometimes.)

I tell the story about a similar conference I was involved with a few years ago where I was part of the planning committee, and suggested we invite a young adult with a developmental disability who had recently graduated from high school and was working or in college.

“Good idea, let’s have a parent panel!”

I had to repeat my suggestion three times before anyone in the room grasped that a disabled young adult was a different concept than the parent of a disabled young adult.

April is advertised as Autism Awareness Month, which is being reclaimed as Autistic Acceptance Month. The idea is that “awareness” quickly becomes “bewareness,” a list of statistics and warning signs. All these people, at Sesame Street, in the media, on the online conversation, at the conference I will attend, are all “aware” of autism. Some are professionals who have worked in the field of autism for years, perhaps decades.

What they don’t seem to be aware of is that autistic people are listening when they talk, and that many autistic people are talking, hoping they will listen. Autistic people are talking about everything from language use to sensory integration strategies to the damage caused when people insist on eye contact. Autistic people are talking about the effects of therapies and the effects of media portrayals and the effects of autistic community.

But as any speech-language pathologist can tell you, communication requires at least two partners. And so we are begging our non-autistic conversation partners, some of whom are parents and professionals, to really notice autistic people as folks with a voice, and opinions and experiences that are our own. Notice when we are not invited to present at conferences. Notice when we are not quoted by the media. Notice when we are being talked over when we do speak up.

Because honestly, we could use some allies. The privileging of parent voices over autistic adult voices is so pervasive, people often don’t even notice it is occurring, or that it is a problem when it occurs. Even after we point it out. Sometimes repeatedly.

Is that what they mean when they say we use repetitive language?
J.K. Rowling, as we all know, wrote the seven narrative Harry Potter books.

Then she wrote a novel for adults under her own name. I haven’t read it although I probably should. And along the way she also wrote several other books in the Harry Potter universe.

Then she wrote a murder mystery under the pseudonym of Robert Gailbraith, and then two more books with the same protagonist, Cormoran Strike.

And I haven’t seen more than a sentence or two online addressing the disability aspect in the series, which is interesting because the disabled fan internet community had had a lot to say about disability representation and portrayal in the Harry Potter books, much of it (deservedly) critical. There was discussion about the portrayal of people with realistic disabilities, and the use of disability as metaphor such as werewolfism, and the characters that can be read as autistic. There was a lot to dissect and I continue to see bits of the discussion now and again.

But on Cormoran Strike, nothing.

And yet in my opinion, J.K. Rowling gets Cormoran’s disability right in two ways that I almost never see from a non-disabled author. His disability matters, but disability isn’t everything.

I’m going to take these one at a time, and in reverse order.

Strike’s disability isn’t everything. So often, a disabled character’s sole character trait is their disability, or taking it a tiny step up, disability + one quirk. So the character is blind AND a jokester or uses a wheelchair AND is a computer genius. Beyond that, there’s often no there there.

But Strike has other traits beyond having acquired a disability shortly before the opening of the first novel. He is still adjusting to the physical and psychological reality of his new impairment to some extent, but the books are not at all about “adjusting to disability.” He has problems and character traits and motivations for his actions that don’t relate at all to his disability. His mobility impairment isn’t even necessarily the thing about his appearance his dislikes the most. He is in a financial crisis, he rows with the woman he thinks he loves, he has a clearly strained relationship with his sister, and while his disability interweaves into all of these situations, it isn’t the sole factor.

You can picture Strike before his disability as already being a round person. He was a different person, of course. There is no current non-disabled Strike, and that’s important. But stories could have been written about Strike’s childhood, or college days or time in the military where he would have still been a complete character who did things for reasons, and he would have overall been the same character.

All this is sadly rare.

But aside from books that are all about “adjusting to disability,” it’s also hard to find a book where a character’s disability actually matters. There may be an offhand comment that a character signed something to another, or rolled rather than walked. But overall, many disabled characters go through life without necessarily encountering an inaccessible place or attitude. Characters “happen to be disabled,” perhaps for diversity points, without their disability impacting characterization or plot in realistic ways.

Strike’s disability often matters. His level of impairment fluctuates, which reads true to me and is quite rare in fiction. There are days when his mobility is minimally impaired and days when pain or impairment have significant impact on his plans. So there are times when he would otherwise have walked, or taken public transportation, and now spending money on taxicabs or getting a ride. Distances matter. Surfaces matter. All of these ring true to me as depiction of disability, although I will leave it to others with more personal experience to rate the specific portrayal of Spike’s impairment.

His disability matters when dealing with people, because people think things, say things, do things. His sister’s attitude about his disability is by no means the only strain in their relationship, but it clearly has not improved matters. She brings it up in conversation and outs him to people without his consent in situations where he may otherwise have passed as non-disabled. In turn, he tries to avoid her and lies about his life even more than perhaps he did previously.

Strike’s own attitude matters, also. He is adjusting to disability in a way that seems entirely consistent with his personality. He is not going to be a Paralympian or a poster child for Disability Pride, and that’s just fine with me. He’s certainly not terribly thrilled with the new limits he experiences, or the additional social hurdles they create. But he manages to avoid the bitter stereotype in addition to avoiding the inspirational one.

All of which shouldn’t be rare.

But I read a lot of fiction with disabled protagonists, and it is really rare to find a character and story that manages to make disability matter without being a disability narrative.

It seems to me that Rowling got it right this time.

But I feel like I’ve been reading Cormoran Strike and the Disability Portrayal No One Is Talking About.

Has anyone else in the disability community read these books with a critical disability lens and agree with me? Disagree with me?
Jan. 22nd, 2017 08:45 pm

Diversity

When I first interviewed for my current job, I asked something along the lines of, “So I know this is a pretty diverse city – how much of that is reflected in the patient population in your practice?”

I was fishing for some sense of whether the practice was mainly caring for white, affluent children of 2 PhD families from the suburbs.

“Actually,” I was told, “the city really isn’t very diverse.”

Oh. Well, he lived and worked there. I didn’t.

So I wasn’t sure what to expect until I moved here.

Now I’m trying to figure out what criteria he was using. Or what criteria I should be using. Because I have lived and worked in a number of places and this seems like one of the more diverse, really.

Some days I walk to work. It’s nearly a mile south, past large houses with iron fences, manicured shrubbery and flagstone paths leading up to stairs. I pass people walking dogs and jogging with babies. The sidewalks are uneven, and in winter, inconsistently shoveled. I saw a Clinton/Pence sign in at least one yard.

There is a synagogue across the street from where I work. It is the closest I have ever lived or worked to a synagogue.

The neighborhood where I work was apparently 40% Jewish at the last census. Two more blocks south I wait for a bus. Girls in long dark skirts pass me as their orthodox school lets out. There is a Jewish Community Center across the street.

Another half block and a man holds up a cardboard sign asking for money.

Back home, I walk three blocks north to the store. There is a Catholic church on the way, and an Episcopal one across the street from it. This is also the closest I’ve ever lived or worked to a church.

I press the button at the intersection and a cheerful voice tells me to wait to cross. The sidewalks here are a bit more even, with more reliable curb cuts.

I’m not the only white face in the grocery store but close to it. I’ve crossed into another neighborhood, one that is largely African-American. There are issues about gentrification I do not completely understand as a recent transplant. I should probably read more. Someone makes a phone call in Spanish from the soup aisle. Two little blond children run ahead of their mother, talking in Swedish.

On the bus again, I hear Mandarin, then Spanish, then a language I cannot identify. Farsi? The bus kneels and deploys the wheelchair lift. People move without comment.

At work, I care for the white children of 2 PhD families from the suburbs and also the children of refugees resettled here. Some days our practice better reflects the diversity of the area than others. Of course, our area includes not just the city but the nearby suburbs and some not-nearby rural areas and towns that thrived back when coal mining was still an industry.

There are certainly cities with a higher percentage of residents from nationally underrepresented minorities, which makes some of them actually less diverse than others. One person is not diverse. Diversity is among all of us.

I attended a protest yesterday.

There were two held in the city at the same time, one women’s march and another one focused on intersectionality which arose when questions arose about the lack of diversity and inclusivity of the original one. It was organized by Black community activists. I found out about it through the local Autistic activist community, which has a not-insignificant overlap with the local LGBTQA+ activist community.

I wore a pin from my medical school’s diversity office, “All shapes, all sizes, all colors, all special,” a pin saying “Health Care for All,” a pin for our local Autistic advocacy group and a peace pin which had been my mother’s in the 1960s.

She now wears a “Dissent is Patriotic” pin, as well as one of my “all special” ones.

I’m not a fan of “special” as a euphemism for disabled, or to imply that some people are more special than others. But even though it is a little cutesy, I’m OK with proclaiming that all people are special. I’m a pediatrician. I can be a little cutesy on occasion.

The local media notes the rally started with a prayer. It doesn’t mention that the prayer was from the West African tradition, including call and response I believe was in Yoruba, and including the burning of sage and the offering of honey and rum.

I did see several people in clerical collars in the crowd.

Also signs in Arabic and Hebrew. I don’t know what they said.

Someone spoke in Spanish. Someone else interpreted her speech into English. Which was then re-interpreted into ASL.

There were the usual signs. If you’ve been to a protest or seen pictures from the march in DC or any of the others, you know the usual slogans. I did like “I’m with her” with arrows in every which direction.

But the two I liked the most had local flavor

“Pittsburgh is an immigrant town. We build bridges. We don’t tear them down”

And, on a red shirt with a picture of Mister Rogers’ trolley, “I will be your neighbor.”
Like so many events in autistic history, Autistics Speaking Day started as a protest. Like so many events, it has grown into so much more. Read more here: http://autisticsspeakingday.blogspot.co.uk/

Writing the Brochure I Want to Read in the World

I want a brochure I can hand families of newly diagnosed autistic children. Something readable, 3-4 pages, giving accurate information and guiding parents on a starting pathway. I say all sorts of things about autism in my visits, but often parents don’t seem to hear much after the word “autism.” A handout would change that.

There are documents that already exist, of course, that claim to do just this.

I can’t use any of them.

I’ve started to write my own. I got about two pages in and then other, more time sensitive obligations swam into view. I need to go back and finish.

In the meantime I’m recommending “The Real Experts.” It was written by autistic adults for the parents of newly diagnosed children, I say.

I’m not sure the words “autistic adults” register.

And I’m saying that many autistic people find eye contact painful, not to mention it is difficult to focus on what someone is saying if forced to make eye contact at the same time.

I’m not sure if my voice and the voice of those I’m quoting is louder than that of their (presumably neurotypical) speech therapist.

I’m not sure they hear me reference the local advocacy group run by autistics or register that I recommend a website for stim toys run by an autistic person or that the conference I’m describing was run by and for autistic people.

Because other, louder, more privileged voices have gotten to them first.

So many of us are speaking now. We’re writing books and writing blogs and organizing ourselves, online and off. I come home from work, where people were talking about autism all day, and curl up to a night of autistic people talking. We had a whole table full of books by autistic authors (auti-biographies, if you will) at our celebration last spring.

But for us to reach the audience of impressionable parents of impressionable young children, we need to be heard. We need them to hear the fact that we are even here to be heard.

And so I reference autistic people speaking (writing, typing, blogging) a lot, often just in casual speech, hoping that it will start to sound comfortable and familiar and expected that a supposed expert on autism references autistic people as a matter of course.

And at some point I am going to sit down and finish that brochure. Because when the parents get home and put their young children to bed and are ready to listen, the first words I want them to read are ours.
I’ve been lately whomped by the disability binary and thinking about how much in disability comes down to narrow tolerances. I’m not even sure that’s the right term, but I can’t think of a better one.

The disability binary is the idea that people are either 100% disabled or 100% non-disabled, when in fact, most disabilities lie somewhere in between. There are people with no vision at all, and they deserve recognition and accessibility, of course. But many blind people have some usable vision and should be permitted to acknowledge and use that vision while also having access needs met. Many people who use wheelchairs can walk, sometimes, under certain circumstances. Autistic people do not magically become non-autistic when they talk, write, work or participate in a social activity.

“Can’t” is such a loaded term. First of all, the story sold to children that “there is no such word as can’t” is deeply harmful. Children, particularly children with disabilities, need to learn to recognize their limits, describe them accurately and advocate for their needs. Denial doesn’t magically create abilities.

But “can’t” as it relates to most disabilities is very hard. And this doesn’t seem understood by many people who should probably know better. I recently spent 90 minutes in training with a smartphone (a saga in itself) with a representative from our IT department and a rehabilitation engineer, someone whose job description boils down to creating technical access solutions for people. And she kept asking me, “can you do this?”

And in some cases I couldn’t and in some cases I could. Sort of. Being able to move my finger in a certain way on the screen, slowly and in ideal experimental conditions, doesn’t mean that that same finger movement is going to be a reliable way for me to interface with a device in the wild, particularly at speed. And being able to answer the phone while it is still ringing seems to fall into the minimal requirements of something to be useful as a phone. So yes, I can do that, in that my finger can make the movement. No, I can’t do it quickly enough, reliably enough for it to be a meaningful ability. Which answer is the lie?

I can write, also. Comes in handy for signing my name and scrawling Post-Its for co-workers. Doesn’t mean I can write an essay.

I’m reminded a bit of the question asked by the youngest person present at a Seder, “Why is it that other nights we eat leavened OR unleavened bread, but tonight only unleavened bread?”

There are so many situations where it isn’t that I “can’t” do something at all, but I am reduced to one option, or markedly fewer options. I can sit well in only a subset of chairs. I can write reasonably with only a certain kind of pen. I can tap on the phone only if it is in a certain position and my hand is positioned in a certain way. My tolerances for success are narrower.

And so it was that I went to a professional conference in an unfamiliar city. I did not request any specific accommodations because there wasn’t anything in particular I could anticipate needing. Looking back in retrospect, I still can’t figure out if there was anything I could have requested that would have helped in any way.

The conference hotel was in a beautiful location in an historic, picturesque setting. It was so historic and so picturesque that the nearest streets were cobblestoned. People without mobility impairments could manage the cobblestones without a thought. Some people with more significant impairment than I have would not have been able to navigate at all. I was hampered and grumpy but not immobilized.

The first crosswalk had a lovely traffic light. When you pressed the button for the crosswalk, it not only spoke when it was safe to cross but even read the second countdown alive. I always appreciate this verbal confirmation of the visual signal, even though I am able to see the visual signal, due to my slower visual processing. The second crosswalk had no light at all. I stood for 5 minutes trying to analyze the traffic pattern as cars came around a circle, before I was able to cross. The next street was the same, and the next.

I made it to CVS to buy milk and shoelaces and I made it to Subway to buy dinner and then beat a shaken retreat back to the hotel. At least I was able to turn off the air conditioning in my room, I had internet access and the refrigerator I requested for my insulin was actually in the room.

The first two days of the conference, I participated in several workshops. Some sessions were on the first floor and some on the second floor. The hotel had three elevators, but only one was working. There were also up and down escalators between the first and second floors but one was not working. There were also stairs between the first and second floors. One elevator was not enough to service the needs of the entire hotel including getting people between the first and second floors efficiently. So I started spending lunch on the second floor, plugging my computer into a nearby outlet, rather than going back up to my hotel room or networking on the first floor where there were people but not outlets.

And it was just one thing like that after another. Little things. Things that worked, but weren’t great, that took an emotional toll, which used rather than saved spoons. The reception which offered cheeses, vegetables and two pasta dishes, one with pork and one with lobster, which wasn’t a disability thing for me but the lack of a vegetarian dish with actual substance didn’t exactly scream “inclusion” either. The new “ap” that I couldn’t use, so I had to go back and forth to the reception desk to find out where events would be held.

The whole time I had the sense of opulence and prosperity and exclusion. I couldn’t help thinking about two other conferences I have attended, both cobbled together on barebones budgets, one so barebones that lunch was take-out. One offered multiple seating options, a clear schedule and a firm statement that participants were not to touch one another without permission. The other discussed accessible sidewalks and transportation as part of the planning process. Of course, people with disabilities were central (in one case, solely involved) in the organizing process.

This larger, glitzy, better funded conference understands the idea of specific accommodation for specific stated needs. There’s a law for that. They give you a chance, on your application, to request these accommodations. They don’t understand that people with disabilities may need something other than specific individual accommodation to be truly included. We often need a wider range of options, from transportation to seating to dining. That’s from lived experience. “No cobblestones” isn’t a matter of accommodation. “I need the schedule in hardprint rather than on an ap” can’t be requested if they don’t tell you in advance about the ap.

Did I mention that all the professionals at this conference work to provide care for children with disabilities?

I have attended this conference four times, and have been knocked over twice by other disability professionals, one of whom tapped me on the shoulder and another of whom grabbed my arm.

Star Ford has a wonderful piece on “Deep Accommodation, or the idea that we can change society so that more people are included, without requiring specific accommodations.

Universal design is another, related concept. If you have both a (working) elevator and stairs readily available, then almost everyone can get to the second floor without additional consideration. If you offer schedules in multiple formats, an array of seating options,

A huge part of this is getting away from the binary. We need to shift the question from “can you do this?” to “how can we ensure the most people can participate optimally?”

A huge part of this is offering more options, not as special accommodations but as a matter of course.

A huge part of this is ensuring people with disabilities are involved in the planning from the onset. It’s not a matter of them remembering to accommodate us. It’s a matter of us being part of them.
I saw it first on CNN. A “feel good” story. Autism was in the title so I clicked.

The gist is, a group of college football players visited a middle school. One of the footballers saw a child sitting alone in the cafeteria and joined him. An autistic child. They apparently had a whole conversation. Someone took a picture and sent it to the child’s mother. She was thrilled because she asks her son every day if he eats lunch with someone and he often eats alone. He doesn’t seem to mind. But she was happy to know that, at least for one day, she didn’t have to worry about him eating lunch alone.

Cue “awws” across the internet.

As the next step in my morning internet ritual, I clicked onto the blog of a mother of a child with a disability. She had the story posted with commentary that people should use the photo to talk to their (non-disabled) children about including those with disabilities. She noted the “warm fuzzy” factor but commented the story didn’t go far enough. How about tomorrow? What do we do to make sure this child has someone to sit with tomorrow?

I responded, pointing out that the story didn’t really give me the warm fuzzies in the first place. It more makes me tired. Another story about someone doing something nice to a disabled person, without any indication about how the disabled person felt about it.

And furthermore, no evidence that what was done was even “nice.”

She responded that stories like this seldom do quote the child with the disability, but that the child had seemed receptive.

Shouldn’t the bar be much higher than “receptive,” though? Shouldn’t it be “liked” or “enjoyed” or “wanted?”

Later in the day, I saw another post about the story, this from a radical disability blogger who often writes about how people accost him, a wheelchair user, with questions, comments and assumptions in public.

He wrote about a “basic question” that no one asked, which is why this student was sitting alone in the first place. He does question if the child wanted to be alone, but largely framed the question as to why the school staff hadn’t done something about his daily aloneness.

I think “what does the child want” is the even more basic question that should have been asked, not just before writing this story, but even earlier, when writing up an IEP or questioning the child on returning home from school at the end of the day. I frame this in the same way I view other “help” foisted onto people with disabilities without checking first to see if it is wanted or needed. We shouldn’t help little old ladies across streets they don’t want to cross, and we also shouldn’t foist company onto people in their “down time.”

As an autistic person, I can think of lots of reason why this child might have preferred to be sitting alone. His other option might have been sitting with bullies, which was my only other option at his age. Of course, the adults didn’t see the kids talking to me as bullies. They saw them as nice. Nice people peppering me with questions about why I did all the things I did differently than everyone else, from my food, my wardrobe and my vocabulary. Alone was certainly preferable to that, and if this child is being bullied, that should be addressed.

But there are other reasons for a person, any person but most specifically, an autistic person, to seek solitude. Perhaps the only choices of people to talk with have such vastly different interests there would be no topic of conversation. Perhaps the sound of others chewing food is distressing. Perhaps one just needs some time to recharge and think, without having to process language and social cues.

Karla Fisher has a great visual she uses for IEP advocacy called “Our breaks are not like NT breaks.” She points out that, for an autistic person, lunch and recess can be the most stressful times of the day.

On a regular basis at work, I hear about children who are alone at lunch and recess, from their worried parents. I always ask the child what they like to do at those times. Sometimes I hear stories of wanting to play but being excluded. Often I hear stories of not being able to find someone who wants to play or do similar things. And then I hear about the child who prefers to spend recess looking for rocks – alone. It always seems I am the first person to have ever asked the question.

The autistic community has a solution for this, for autistic events. They are Color Communication Badges. With green displayed, the message is to approach. With yellow, only known people are welcomed. With red displayed, the wearer is to be left alone except in direst emergency. This makes it easy at autistic events, to know if a person sitting alone would relish or loathe company.

Why don’t we have something like that at schools? Color badges or seat markers or perhaps a choice chart the child can use in class before recess

I’ve been asked to speak on the topic of autism and advocacy later this fall, at a professional conference on autism and transition to adult lives. I’m putting together a presentation they aren’t going to expect, including a brief history of the disability rights and neurodiversity movements, profiles of some Autistic activists, and some hints about how to evaluate advocacy organizations. And then I am going to talk about how non-autistic parents and professionals can support advocacy of autistic people.

A big part of supporting advocacy is listening to what people say about themselves, their lives and their preferences. They may say it using words to senators, or they may say it using gestures to their preschool teachers. A hand held up is advocacy. Bringing shoes to the door is advocacy. “No!” is advocacy. It is important to teach advocacy, but equally important to teach others to listen for it and to it.

If an advocate sends a message, but no one respects it, does it make a sound?

So you see, we don’t really know what the story is here at all.

It might be:

Autistic child delighted to have footballer join him for lunch!

And that would be grand. I would feel good. (I would still ask the question of if he wants to eat lunch alone on other days, though.)

Or it could be:

Football player invaded privacy of autistic student!

Or perhaps, there could have been another story:

Football player respected autistic child’s preference and right for privacy!

(That’s the story I want to read, some time. That’s the story I never see written. It would be a rare event, Man Bites Dog level of novelty that should make top headlines)

But we just don’t know. We know how the child’s mother, the cafeteria worker, the football player, and now, the entire internet felt, but not the actual person involved.

And that’s a huge problem. Yes, in stories like this, the child is seldom interviewed or quoted. That’s the problem. People with disabilities are so seldom interviewed in stories that are about things we do, and even less so in stories that are about things people do for us, or to us.

We’re reduced to objects.

And

I object
I’m boycotting the Olympics.

Not the 2016 Summer Games, which happen to be on now. The Olympics. Period. I’ve been boycotting the Olympics since at least 2008.

Before that, I just didn’t watch, talk about, or care about the Olympics. I don’t follow sports. So it’s not like my boycott really changes much of anything I’m doing. Or not doing. It’s just the principal of the thing.

I am boycotting the Olympics due to the disparity of treatment between the Olympics and the Paralympics.

The Paralympics, for those who haven’t been paying attention, is an elite athletic competition for athletes with disabilities. They (it? I pay so little attention to the Olympics that I’m not even sure if it is a collective noun or if they are singular games pluralized) take place at the same venue as the Olympics, afterwards, at least from 2001 to 2020. It started with the Stoke Mandeville games for disabled veterans at the British Stoke Mandeville hospital in 1948.

There are a number of sports and events. Like the Olympics, most of them involve either doing something faster than everyone else (athletes might call this “racing”) or doing something as a team very well while simultaneously preventing another team from doing the same thing. There are a few other events such as archery and judo, which are probably self-explanatory. One thing that makes the Paralympics a little more complicated is that there is more subdivision of events. The Olympics might have a race of Women Swimming This Far. The Paralympics may have a number of events for Women Swimming This Far, because they have separate categories for women who are blind, those who swim using their upper and lower body but with some upper body impairment and those who swim using only their upper body.

There’s a whole system of classification used so that people with similar disabilities are competing against each other in events where that matters. Degree of impairment matters more than specific diagnosis in most cases, so swimmers with full use of arms but limited use of legs are in the same S5 category whether they have cerebral palsy, paraplegia from a spinal cord injury or amputations. Some team sports give athletes points based on certain abilities, and only a certain number of points can be on the field/court/whatever at a time.

There are sports and events adapted for people with disabilities, such as sitting volleyball, and then there are sports that are only played in disabilityland, such as goalball.

And no one has ever heard of them.

So typically, in the United States, the Olympics gets several hours of prime time coverage on a major TV network every night for all the days of the games. Over the past few games, the Paralympics gets an hour or two of retrospective coverage on a Sunday afternoon on a cable channel.

No wonder no one has ever heard of them.

In England, the Paralympics is broadcast much more widely than it is in the US. And anecdotally, it seems that more non-disabled people in England have some idea about the games, what they are about, and can name some athletes.

The argument by the media, of course, is that no one wants to watch the Paralympics. No one wants to watch an event they don’t know anything about because there’s no coverage, of course. Imagine if they cut from, say, women’s non-disabled uneven bars to the USA-Canada men’s wheelchair basketball game, even just for a few minutes.

So disparate attention is issue number one.

Disparate portrayal is issue number two.

Overall, when Paralympians do get media attention, they don’t get it as athletes.

There was a commercial put out this year in England describing the Paralympians as “superhuman.” Now, sure, on some level, people who can run faster than everyone else or lift heavier things than everyone else are in a pretty unusual category. But that includes both disabled and non-disabled people who can use their bodies in ways that most people cannot. We call our non-disabled divers, runners and skiers many complementary things, but “superhuman” is typically not one of them.

Articles are full of words like “overcoming” rather than words about the sports themselves. The Olympics makes the front page and the sports page. The Paralympics makes the “human interest” section.

And it’s typically about individual overcoming, also, particularly for athletes with acquired rather than congenital disabilities.

They don’t go into the systemic problems that do need a lot of work. Picture, if you will, a non-disabled 12 year old who likes to run and runs really fast. He or she may or may not have the opportunity to be an Olympic athlete. But he or she probably has access to running shoes and to a track team and a coach who is experienced helping fast people become faster. Now picture a 12 year old who uses a wheelchair who likes to go fast. He or she likely cannot afford a racing chair, because one can’t get better at racing quickly in the same chair used to go to math class. Insurance only covers one wheelchair every 5 years, so that’s not a way to get a racing chair. Then, there’s not nearly as easy access to a track team and a coach experienced with wheelchair athletes. The regular track coach at the middle school may or may not be able to help.

The city where I live has two sledge hockey teams, a junior team and a regular team. There are several Paralympians on the regular team. They manage to collect equipment for players so that people can learn the sport. A bunch of my coworkers and I got to play in an exhibition game against the junior team, which is a story in itself I should tell sometime. Before the game they had a workshop for local kids. This is a great program. I’m in a reasonably sized city that is known for hockey. It’s not enough. I can tell you all about the local Special Olympics and Miracle League baseball organizations, which are great inclusive athletic programs, but not where someone in this town can go to play quad rugby, an extremely full-contact sport played largely by people who have already broken their necks once.

So that’s why I’m boycotting the Olympics.

I will, as I have for the past two games, actively seek out the Paralympic coverage. I have seen bits of sitting volleyball and several of the USA sledge hockey games, women’s swimming in the S10 category, and some alpine blind skiing. This year I’m hoping they air some goalball.

I don’t particularly care about who wins, because I don’t particularly care about sport. That’s me being equal opportunity, not because I don’t think winning matters. For a non-athlete like me who boils sports down into “going fast” and “working as a team to prevent the other team from doing a thing” that’s about the best I can manage. For those who know things about sports, they should care more. What about the athleticism of pushing oneself and some metal around a course faster than anyone else in the world, and what about the physics of wheel angles and the difference between a racing wheelchair and a handcycle? How does someone become an elite ARW1 archer? What are the mechanics about swimming when you start in the water rather than on the edge?

My boycott isn’t going to affect the Olympics. I wasn’t going to watch it? Them? Anyway.

But whenever I boycott the Olympics I take the opportunity to tell a few people about the Paralympics who may not have ever heard of it before, or who don’t know the difference between the Paralympics and Special Olympics, or who don’t see it as real sport. This includes many people who work in disability professions, by the way, whose patients and clients may be the next monoski-ing champion if only someone knows where to send them. Don’t believe me? I was a camp counselor in 1998. One of the campers in my cabin was, at 11, the 4th ranked wheelchair racer in her age group nationally. She went on to earn a gold medal in the 2008 summer games. This happened partly because she’s very fast, and partly because she had the opportunity to try wheelchair sports as a young child and subsequent coaching.

And maybe some summer day I will come to work and someone will say, you catch that goalball game last night?

No, of course I haven’t. I don’t follow sports.
I don’t need my cane. I can walk without it. I walk more steadily with it. I have the stamina to walk further and faster. I have less pain when I use it. It helps me up curbs so I don’t have to go as far out of my way to find curbcuts. It is helpful getting off the bus. I don’t use it at home or at a friend’s house. I don’t use it around the part of the hospital where my office is. I use it for speeds, distances and to keep balance in crowds.

I don’t need my glasses, either. I can see without them. I see better with them. I can see things further away, such as the TV screen, a presentation or the faces of my patients. I have fewer headaches with them. They help me see street signs so I don’t have to stand under them to read them. I am legally required to wear them if I drive. I don’t always wear them at home and take them off at my desk to read. I can walk around safely without them. I use them to see things at a distance more clearly.

People would tell me that I shouldn’t use a cane if I don’t need one. It’s a crutch. (It’s a cane, actually.) It makes me look disabled. Insurance companies often won’t cover power wheelchairs if the person can take even a single step inside their own home. There’s a lot of cultural narrative and medical narrative about only using mobility devices if they are 100% absolutely necessary.

But there’s no similar cultural narrative about eyeglasses. No one would ever tell me not to wear glasses because I can see without them. (Actually I don’t think there is any person who can’t see at all without glasses, who can see even some with them. Eyes don’t work that way.) Glasses, even part-time glasses, are pretty acceptable in the society in which I live. It’s OK to put them on when helpful and removing them when not.

This distinction fascinates me. What, really, is the difference between a cane and eyeglasses? They both can decrease pain and increase ease and efficiency in life. More people benefit from glasses. Is that the only real difference, the only reason that glasses are “OK” but hearing aides, canes, wheelchairs are not?

The Social Model of disability would say that disability occurs with the interaction between a person’s impairment and society expectations. Society expects that some people will wear glasses to see better and that making the choice to wear glasses does not imply anything deeper about a person in most circumstances. Society says that people who cannot walk as expected are a different sort of person, a lesser sort of person, and so someone shouldn’t look like or be that sort of person unless absolutely necessary.

Absolutely necessary. Why are other things not held up to that same level of scrutiny? I have an apartment full of other things I want but don’t need, that I find useful or even just ornamental but not necessary. I don’t need a food processor. I don’t need jewelry. Why should I have to need a cane?
The apricots of my childhood

The apricots of my childhood were –

No, scratch that. The “apricots” of my childhood were dried apricot halves. There were no other apricots. These dried apricot halves, which I called, and will henceforth call “apricots” were deep orange, sweet, tart and chewy. The inside side was tacky, almost gooey. They came in a box. I would sit and eat them like candy. Actually I probably ate a lot more apricots than I did candy. I ate raisins, too. Raisins were everyday fare. Apricots were a treat.

At some point, my mother spotted fresh apricots in the grocery store and decided to introduce me to one. It was pale and juicy. She cut it open and I took a bite. I don’t think I finished it. I know I’ve not tried one again since. This fresh apricot bore no relation to what I recognized as apricot.

A few years later, my mother discovered another type of dried apricot in the store. They were in a clear plastic container. They were more expensive. They paled, literally and figuratively, in comparison to everything I knew an apricot to be. They were more expensive, so my mother would get the regular, good apricots most of the time and then these awful, moist, neither chewy nor tart things as a treat. This may have been my first introduction to the idea that paying more does not necessarily get more. In my opinion, it got less.

As the years passed, it became more and more difficult for me to find what I considered a proper apricot. Occasionally I would find something close, usually in the 1$ boxes at the pharmacy. These weren’t perfect but at least put the dry in dried. I started describing the apricot of my childhood to people. They suggested stores with bulk bins. I found all sorts of gourmet things claiming to be apricots. Someone finally figured out that the apricots of my childhood were California apricots, while the apricots ubiquitous in my adulthood were Mediterranean apricots. Now all I had do was find California apricots. Which I couldn’t. I kept finding more and more fancy Mediterranean apricots instead. I began to wonder if apricots still grew in California and whether it was a botanical difference or a processing difference. Another few years passed.

Then suddenly one day a friend offered me an apricot and it was an apricot of my childhood. They were apparently now being sold at the grocery store that had not sold them when I had last looked, two weeks before.

And they are every bit as deep orange, sweet, tart and chewy as I remembered.

The Bobbsey Twins go. . . with me everywhere

When I was six, my grandmother got the box of Bobbsey Twins books out of storage. My mother had read the series through, once, I suppose. My grandmother sat me down next to her on the bench and read me the first chapter of the first book. She then put the book aside, pleased she had introduced me to these books, and went on to do something else, planning to read me some more later. I picked the book up and read the next chapter. And the rest of the book. And then I reached into the box and read the next one.

For the next three years or so, the Bobbsey Twins were constant companions. I read the series over. And over. I read at the table. I read in bed, under the covers, with a flashlight. I read in the car, holding the book up to the streetlights when it got dark. It was probably a Bobbsey Twins book I was rereading in the car when I threw a fit because I didn’t want to get out of the car to see a lock in operation. There we sat in the parking lot, my parents marveling over the lock, and me sitting in the car, rereading.

I read other books. But I kept coming back to the Bobbsey Twins. Why, I cannot say. Maybe because there were so many of them. Maybe because I learned so many things from reading them repeatedly. For years, when I came out with some factoid or other and my parents asked how I knew it, I would say, “oh I read it in The Bobbsey Twins go to “ wherever. The thing is, I can generally tell you how I know things. And I generally associate the thing with the learning of it. I don’t know how common this is. But it’s a big thing for me, and it happens with both fiction and non-fiction. And the Bobbsey Twins were a treasure trove of things to know, both because they were always going places and learning things, and just because there was a lot for me to learn from books written in the 19-teens.

I was bothered by the fact that the characters didn’t age. But characters didn’t age in most of the child series books I read. I was bothered by the things the children did that children really should not have been doing unsupervised. I’m not sure how much I registered on the racism.

I read them and read them and read them, and then around nine I moved on to reading the Laura Ingalls Wilder books, and then around 12 it was the Baby Sitter’s Club and then I got into adult murder mysteries. At some point, the books moved off my shelves. I’m not sure when. At some point, visiting as an adult, I went looking for something to read on my childhood shelves and found other old friends but no Bobbsey Twins.

And then, this winter, my mother and I were in the attic and there they were. And now they are here, with me, and I am rereading them once again. Some of the titles are completely unfamiliar. I am more bothered by the lack of continuity, particularly for a series that spends an entire chapter reviewing the series to date. Danny Rugg is a bully, and then a friend, and then a bully again. The lumber yard is a short walk away, and then a trolley ride. Bert and Charley (or Charlie) Mason build a bobsled, and then in another book they build a bobsled, and then a few books later, talk about how they wished they had a bobsled. The ages are never quite clear, and then they stop aging all together. There’s certainly a lot of racism, although I don’t know that it’s realistic to expect otherwise from books written in the 19-teens. The coincidences they use to solve mysteries strain credibility, but seems in line with other children’s books of the era as well.

So I am rereading them. I’m not sure if I’m doing it to revisit the books themselves, or just to relive three years of my childhood over the course of a month or so, or if it matters.

In pursuit of the perfect soft chocolate cookie

About 20 years ago, I fell upon the recipe for the perfect chocolate cake. It was in a cookbook I already owned. I had tried other chocolate cake recipes from that and other cookbooks. I have not made chocolate cake from any other recipe since. It used all purpose flour, rather than cake flour. It called for an equal number of egg yolks and whites (although it did require separating them, a tiny point against it), it contained honey which gave a bit of extra flavor, and it unmolded from the pan cleanly. This last was vital at the time, because I was decorating rather more cakes at the time.

Then I set out in search of the perfect chocolate cookie. I was looking for a chocolate-chocolate chip cookie that was soft, almost gooey in the middle. I had eaten such cookies, mostly in shopping malls. They seemed like a popular cookie. Surely a recipe wouldn’t be that hard to find.

I started with cookbooks, then took suggestions, and eventually turned to the internet where I could google “soft.” I found soft chocolate cookies that were basically brownies and soft chocolate cookies that were cakey, and they all made excellent eating. I even found no-bake (or Amish Boiled) cookies that are really fudge and are quite good, but not what I was looking for.

And then one day about 2 years ago, I was watching a cooking show on TV and there they were. They were chocolate cookies with white chocolate chips, but that was easily changed. The recipe made 24, but I found that it really could make 36, or half a recipe make 18, while still being sufficiently large and almost gooey.

The search was not all-consuming, because I don’t bake cookies all that often, and sometimes make Peanut Butter Chocolate Chip Miracle Cookies, brownies, almond-apricot bites or other sorts when I do. But it was there. I’m looking for the perfect chocolate cookie. The apricot search seemed over when I found the apricots. But the chocolate cookie search feels different. I feel the need to search for, or perfect, some other food item. Only I’m not sure what. Pad Thai has emerged as the most likely candidate. Actually, I’ve been working to perfect my Pad Thai recipe for years. It’s a little different in that I’m experimenting myself, not trying out prefabricated recipes, and that attempts seem to be coming closer and closer. The asymptotic Pad Thai, if you will.

Tin diabeteversary

My tenth diabeteversary is this week. 10 years ago I was misdiagnosed, hospitalized, re-diagnosed, patched up and discharged. I Livejournaled the whole thing. And now here I am. I juggle carbohydrates, time, hunger, exercise and the Diabetes Fairy Factor.

Sometimes I don’t feel as though I have any better handle now than I did 10 years ago.

I have a whole lot less optimism that I can get a handle.

My dentist asked me if I watch my blood sugars and I told him I watch them go up and I watch them go down.

I have a continuous glucose sensor so I meant this literally.

A few weeks ago I was realizing I’ve had diabetes almost 10 years and that’s when I realized I was turning 40.

Or maybe I was remembering I was turning 40 and then remembered I was diagnosed with diabetes a week after my 30th birthday. Because I didn’t actually forget my age.

It’s 10 years, either way. 1/4 of my life, either way.

A long time, either way. Or not very long at all.

I’m trying to figure out what 40 means.

Someone called me young the other day.

I objected.

They say you are as young as you feel. I don’t feel young.

My 10 year plan involves walking and taking buses everywhere until 50 and then buying a self-driving car, unless by that point, people don’t really own cars at all because they are pretty much all self-driving.

10 years, my 10 year plan was surviving my medical education.

I plan to live to 80.

I’m halfway there.

I live in the past a lot. Maybe it’s having a good memory. Maybe it’s why I have a good memory. There are so many things I don’t even know if I remember, so much as I remember talking about them.

And then I think about the future.

And then I eat apricots and read the Bobbsey Twins and bake cookies.
Jun. 8th, 2016 08:49 pm

Healthwork

Healthwork

My patient needs medication. Well, they don’t “need” medication. I know better than to use such language. After a discussion of the potential risks and benefits of medication to treat ADHD symptoms, the child’s family and I made a joint decision to trial medication. Actually, this is the fourth medication we have trialed. We’re on the phone after the plan we made at the last visit was not successful and the medication is a controlled substance so I can’t call it in. I can mail them a prescription or they can come pick it up. When? Well I’ll print it out as soon as the phone call ends. I print out the prescription, sign it, add my ID number, photocopy it, put it into an envelope labeled with the child’s name, and file the photocopy. Then I document the phone call.

The prescription is picked up and taken to the pharmacy where it is submitted for insurance approval. It is denied. I knew it was going to be denied. In fact, I had brought that up during the phone call. This medication is hard to get approved, but we can usually get it approved after two other medications have failed. Of course, there’s no real way of knowing. There is no system where I can query the insurance company about coverage before writing the prescription, having it picked up, brought to the pharmacy, submitted to insurance and then denied. Oh, there are published formularies, but all they say is “prior authorization required.” They don’t tell you what is needed to meet the criteria for the authorization. Dutifully, my nurse fills out the prior authorization form. I see it as I walk past and help her out by telling her the prior medications tried and the reason they were stopped. I can’t give her the specific dates, though. She’ll have to go through the medical record for that. Of course, the insurance company already should have a record of the prior medications tried and the dates, because they approved (often grudgingly) those medications in the first place. But onto the form they go.

Sometimes the insurance company denies the medication unless I can tell them why the “preferred” medications are not appropriate, but neglects to send me a list of preferred medications. Sometimes I have to call the “peer to peer” line, or the “appeals” line to plead my case. Of course, the number provided is never the actual phone number I need. In one notable case the number on the denial letter reached a completely different state. Sometimes the “peer to peer” line gets me the medical director of the insurance company, which seems like overkill. Sometimes it gets me a clinical pharmacist, which seems like underkill. Often it seems that whoever is at the other end of the call has never met a child with ADHD or autism, or perhaps any child at all, ever, or perhaps a person. You have to call their line and leave a message stating when they can reach you to go over the appeal. One time, when the person called me back, they had no idea of the name or purpose of the test they were denying.

Meanwhile, my patient’s medication is finally approved for a month. No reason why it is approved for a month, rather than 6 months, or a year. The pharmacy calls the family to pick up the prescription. The child tries the medicine. Things get maybe a little better, not much. We decide to increase the dose, from 5mg to 10. Go ahead and try giving two capsules starting tomorrow. Call me in a week and let me know if things are better. Things are better? Great. I’ll put a prescription in the mail for 10mg capsules. The car breaks down but eventually they get a ride to bring the prescription to the pharmacy. The pharmacy submits it to insurance. The insurance denies it because it is too soon since the last prescription.

Healthwork

I am running low on continuous glucose sensor supplies. I thought I had another box (3 boxes in a shipment) but I apparently don’t. I’m on my last one which runs out Sunday. First thing Monday morning I e-mail my contact at the continuous glucose supply manufacturer. I remember to include a spreadsheet with my last 3 months of blood sugar numbers because my insurance company now requires it and if I forget, it’s another day and another e-mail. Tuesday I get an e-mail from someone else at the continuous glucose supply manufacturer stating today is too soon but I can get supplies in 2 days and the good news is I have met my deductible so they are 100 covered and do I want them to ship them out in 2 days? Yes, please. I respond. Thank you.

Wednesday I get an e-mail. Sorry, our insurance doesn’t let you order supplies directly through us anymore. You have to go through this specific supply company. I will send them all your records such as your prescription. Here’s there number.

I call the specific supply company and am told they will not accept my prescription forwarded to them from the manufacturer. I need the prescription filled out on their specific form. I need to contact my doctor’s office about this form. Past attempts to reach a human at my doctor’s office have been disastrous. I saw a doctor there once, who then moved out of state, and then saw a PA once, who told me she would be on leave around the time of my next appointment. I have no idea if that means she is on leave now. I’m also not sure if she can write for supplies or if it has to be a “doctor” and if a doctor, I don’t know the name of the doctor because she probably just handed the form to the first one she saw and asked them to sign it.

I hang up the phone and burst into tears.

I’m between patients at work and have had a no-show. I have some lunch. Then I call my doctor’s office. I pick the option that seems most likely to lead to a human, the one for a “medical secretary.” I’ve never heard this term used before in any medical practice I have studied, worked or sought care. They want to transfer me to a nurse. I ask for the direct number for the nurse because in my prior experience, no one ever answers the phone there and I don’t want to leave a voice mail to get returned at work and play tag. On my fourth try I get a nurse. They are endocrinology. I need diabetes. I get transferred to the nurse in diabetes.

He understood the problem immediately. Actually he thought I was someone else who had had the same problem yesterday. He knows someone at the supply company. He can get that person to send him the form and he can get the PA to sign it and send it back. He asks for my phone number. I tell him I have patients and can he e-mail instead. He reads me back my e-mail from my medical record and says he will e-mail me. 6 PM and no e-mail.

Healthwork

I learned this term from http://shehasathree.livejournal.com/, who is, I believe, doing research on the subject.

It appears to be referenced in a very few journal articles.

I have never heard the term discussed among medical professionals. I have very rarely heard the general topic discussed, for example, in that patients are more likely to “comply” with medications taken once daily than thrice daily. I think I did attend a pediatrics lecture once that addressed the amount of time treatment for cystic fibrosis can take if a patient follows all medical advice.

Mostly, if health care professionals talk about healthwork, it’s to complain about patients who don’t do it.

I once sat in a disability social justice group where we went around the circle discussing our weeks. One person had been on hold with her insurance company. The next couldn’t find a mental health provider. The third had been chastised by a specialist for seeking care from their specialty, after having been specially referred there for a long-awaited appointment. I brought up the term “healthwork.” It resonated immediately.

What is healthwork?

It is all the things done to improve or maintain one’s health. It includes everything about going to the doctor, including making the appointment, filling out paperwork, getting the referral from the other doctor, getting prior records together, arranging transportation to the doctor, and actually having the appointment. It includes all of the same for a mental health counselor, or physical therapist. It includes doing all the things at home that they advised you to do. It includes time on the phone with your insurance company. It includes time spend pressing 13 numbers in the phone tree. It includes going to the pharmacy, waiting at the pharmacy, going back to the pharmacy. It includes taking your medications. It includes shopping for the foods you need, preparing them, weighing them.

One advantage to giving it a name is that it can then be measured, quantified, legitimized.

It is work.

It takes, time, energy, effort.

By definition, pretty much, a lot of it is done by sick people, who are not known for having unlimited time, energy and effort. In pediatrics it is often done by parents. Of course, “parent” and “sick person” are not mutually exclusive and many of the parents of my patients have healthwork needs of their own.

It takes knowledge about how the system works

Judging from my experience today, knowledge doesn’t actually help as much as one might think it would.

Much of it has to be done by telephone, which is a problem for people who cannot communicate effectively on the telephone.

I can’t help think that universal health care would make a difference. Sure, there would still be regulations and denials and appeals processes. But there would only be one process. One formulary. One phone number. They could automatically have all the prescriptions on file. One wouldn’t have to worry about which doctors are credentialed with which company. Changing jobs wouldn’t have such profound impact.

Our hospital offers care coordination services for the patients with the highest level of need, the most complexity. They can’t work miracles. They can’t make people come to appointments and they can only remind people to come if they can reach those people in the first place. They can’t make insurance companies do anything, either. But they can do a fair amount of healthwork by proxy, requesting records, cohorting appointments with multiple providers onto the same day, making the necessary phone calls to complete a form that has to be either filled out by hand or on the computer, but can’t be saved on the computer, and that needs a copy of the child’s school calendar and the date of the child’s last seizure and the number of diaper changes needed daily.

My patient is still awaiting his medication, and I am still in limbo over my supplies. All that work and none of us are healthier yet. But after all, stress and a rushed lunch spent on the phone are definitely recommended diabetes management strategies.
My prior Blogging Against Disablism Day posts are (2006), (2007) (2008) , (2009), (2010), (2011), (2012), (2013), (2014) and (2015)


The local branch of the Autistic Self-Advocacy Network threw a party this afternoon. It was officially billed as a Celebration of Autistic Community. Autistic children, adults, families, professionals and other allies were invited. We displayed books by autistic authors and others that are autistic-respectful. We had a wide array of fidget items, sensory and stim toys, some of which were our own dollar-store variety and some of which were specialty items on kind loan. We had some information on local and national resources, although it was not a typical "resource fair." Hunks of the afternoon were spent with children and adults alike hanging around together stimming.

We ended up getting space for the event where I work, a place that provides a variety of professional services for autistic children, from educational to therapeutic to medical. This was going to be something different, though. When I asked to reserve the space, I was asked the entirely sensible question of how many people were expected. I had no idea. 5? 50? The final count was around 30.

But all in the plan and the lead up, we had no idea. Would parents want to bring their children to a space run by autistic adults, where being autism was ok? Could professionals even conceptualize a space where autistic people were in charge? Where no one mentioned cause or cure or treatment? Where the point was to have fun being autistic, in typically autistic ways, together?

What if you threw a party and no one came?

A few months earlier, some of the same advocates, and others in the local disability community, planned a vigil to honor the lives of people with disabilities who had been killed by their caregivers. This International Disability Day of Mourning started with a single vigil in 2012, hosted by an autistic women who kept reading articles expressing pity for the person who had murdered her autistic child living nearby. The vigil in my area the year before had been attended by about 6 people. Someone bought 100 candles and still has 94 candles on a shelf somewhere. This year, with more networking and preparation, we got about 30. We couldn't get the press to come, which may have been just as well. The last time the local press covered the murder of a person with a disability, they sympathized with the murder as well, as the murdered person had been "suffering."

What if you held a vigil and no one came?

One thing that strikes me again and again are the ableist things I encountered from the medical field. It's not that people think ableist things and say ableist things. It's that so many people think ableist things that no one notices. It is OK to sort people in studies under "good" or "poor" outcomes. It's OK to describe people with certain conditions as having poor quality of life without ever asking them. It’s OK to do studies where typically developing children are rewarded for rewarding autistic children for playing with them, and describing your success as improving social interactions. It’s OK to say that children with certain disabilities don’t really “play” because they don’t use toys in typical ways.

No one notices these things as problems. They report them in their own research. They quote them in rounds. They listen to people say them in classes and lectures.

And it’s the same in media articles written about disability. Typically the author has an ableist slant. Often, people with disabilities show up in the comments to complain. And they are shouted down by other ableist people telling them they couldn’t possibly understand.

That’s really the problem. Not that people have these ableist ideas. The fact that the ideas continue to gather such a big audience. The fact that people don’t criticize them. They don’t walk out on them. They don’t refuse to publish them. They keep showing up to hear them again and again.

What if someone proposed something ableist and no one came?

What if the people saying and doing ableist things had to worry as much about getting others to listen as the advocates do now?

What if?
I have recently become secretary for a group on which board of directors I serve. I’d say I don’t quite know how it happened but I know exactly how it happened. The board leadership changed at the start of the year. For the January meeting, the outgoing secretary continued to take minutes as there were not enough board members present to hold elections. The February meeting, there was a general group meeting before the board meeting, and the outgoing secretary was not present. The president asked if someone would take minutes until the board had a chance to meet. Since I already had an e-mail open to take notes, I offered. What happened next was inevitable. The board met, the president asked for nominations for secretary, someone nominated me, I said I didn’t have time but neither did anyone else so sure, and I was elected by acclamation.

What cracks me up is that I was able to be secretary at all.

For years, whenever I was in a situation where someone was asked to take notes for a group, I couldn’t. There was no way. I couldn’t (can’t) write on a blackboard. I could barely write on a whiteboard. I can marginally write on an overhead projector. My legibility limit with pen on paper is five sentences, with effort.

I have a handwriting disability and taking notes required handwriting.

I couldn’t possibly be the one to take notes.

My group meets by telephone monthly and in person/telelink annually. I always have a computer with me. I can take notes in an e-mail and mail it to myself. Then I can transfer them to a word processing document, tidy them up and e-mail them to other people.

I am ideally suited to be the one to take notes.

How I went from being unable to do something to being an excellent candidate to do the same thing is yet another classic demonstration of the social model of disability.

When people typically think about disability, they frame it around the thing the person can’t do. And the obvious problem is that the person can’t do the thing. And the best solution would be for the person to be able to do the thing, through medication or therapy or surgery. If those solutions don’t work, the person continues to have a disability.

Disability scholars call that the medical model of disability. Most medical people, who have never heard of the medical model, call it reality.

Under the medical model, my ability to take notes or not take notes relates directly to my hand strength and motor control, which hasn’t changed appreciably in years. The things I couldn’t do when first assessed at age 9, I still can’t do 30 years later.

But disability isn’t as simple as not being able to do things. All people have things they can’t do. Not everyone can play professional basketball, but no one calls that inability a “disability.” The society in which I was a sixth grader does expect sixth graders to be able to dribble and throw a basketball and to understand some of the basic principles of the game.

Sometimes, in a snarky mood, I define disability as the inability to do something society generally expects people to be able to do. And further clarify that inability includes not just outright inability, but also the inability to do the thing as well, or as reliably, or as quickly, or as frequently as expected.

Disability relates to context. In a society where no one reads, or only a few people read, the inability to read is not a disability. In a society where children are expected to be reading words by age six, inability to read is a big disability. It has a name, dys-lexia, which means inability to read.

Deafness is not disabling in a society where everyone uses sign language. A minor mobility impairment may become disability in a society where people are expected to walk long distances. A significant mobility impairment may not be a disability at all in the future that includes flying hoverchairs.

And so, by changing technologies and changing expectations, and not at all by changing my hands, I now have the skill set to serve as secretary for a motley band of health care professionals, some of us disabled ourselves, who are trying to change the way disability is taught to health care trainees.

Which is why I advocate for teaching the social model of disability as a major way to effect that change.
One of my side hobbies in my practice of medicine is cultural competency.

Well, it isn’t actually a side hobby, but it seems that way, considering my actual job description and title and the thing people think I do is provide medical care for children with developmental disabilities. (And I do plenty of that.) So when I start talking about cultural competency, it’s treated as something nice that I’ve gotten myself into, something maybe I should give a talk about sometime, but not really a majorly relevant thing compared to ADHD and autism and all that.

But it really, really is.

Cultural competency is the idea that health care professionals need to comfortable with – and competent at – caring for patients from a variety of cultures, including cultures that differ from their own.

The obvious ways this is often taught center around things commonly thought of as cultures. Race, religion and national origin feature prominently.

Cultural competency, when done well, which is by no means always, emphasizes that providing culturally competent care does not mean memorizing lists of things about individual cultures. For one thing, this can lead dangerously into stereotyping. For another thing, it’s impossible. So largely, practitioners are encouraged to ask questions and to recognize there can be a wide array of answers. Knowledge about traits common to individual’s in a particular culture can be a useful starting point, but should never be an ending point.

For example, I have a young patient whose parents are from China and came to the United States as adults. Dairy does not feature prominently in Chinese cuisine. My patient has a dairy sensitivity.

Knowing that fact, I could assume that my patient and family do not eat a lot of dairy.
Or, knowing that fact, I could ask what sorts of food my patient likes to eat.
It turns out my patient loves pizza.

Having said that, it can help to be somewhat familiar with aspects of groups common in your area that are relevant to your field of practice. If you are a feeding specialist and commonly see families from Cambodia, it would probably be helpful to know something about common Cambodian feeding practices. How long do babies typically nurse? What are the first foods typically given to babies? How old are children when they are expected to feed themselves. (Tip – if children in a culture are not typically expected to self-feed, a child who isn’t self-feeding at the age typical for American children is not, in fact, delayed in that area.) Similarly, if you are doing autism assessments and care for a lot of children whose families recently came to the US from Mexico, it would probably be helpful to know something about cultural expectations for eye contact in Mexico. (Hint, it’s less expected than in the US, which means that eye contact probably isn’t as necessary as we’ve been told for effective communication.)

One of the most important aspects of cultural competency work is recognizing, though, that culture is not about the minority “them” who are distinct from the majority “us.” For people who have largely majority experiences, this can be a really tough concept. I’m reminded of the wedding cake toppers that came, for many years after people should have known better, in “white” and “ethnic.”

This is where privilege comes in.

(Yes, this is really a post about autism for World Autism Day)

Privilege is the ability to not recognize that your experiences are just as cultural as other people’s. When you have largely majority experiences, it’s very easy to feel as though your way is not just informed by your culture, but is in fact the one way, the true way, the normal way and just the way the world works, really.

The fish doesn’t recognize water because it’s always been there and will always be there and what else is there in the world, really?

When you have largely majority experiences, most of the people around you tend to also have mostly majority experiences. Most of your teachers share these majority experiences. Most of the books you read are about people with majority experiences. And when you do read a book about someone with a minority experience, it’s often written for you, to see how different this person is. It’s almost never a book where someone who shares that minority experience may see themselves.

Most doctors come from largely majority experiences.

In addition, medicine is a culture. Western bio-medicine, as experienced in the United States, is absolutely a culture. It’s a culture that is heavily informed by the mainstream American culture, with some additional cultural traits incorporated. It’s close enough to mainstream American culture that when most people begin their indoctrination into the western biomedical culture, which the indoctrinators would call “Medical School,” they don’t notice they are being indoctrinated into anything. Their beliefs and values are largely validated, not challenged.

(Here’s where the autism comes in.)

When future health care providers learn about autism, they learn about it from people who see autism, and other disabilities, as medical pathology. And nothing in their prior experience contradicts that approach, because most of what is in the general US cultural conversation about disabilities has been influenced by the medical pathology model.

There are medical aspects to autism (and to most other disabilities.) There are medical conditions for which autistic people are at markedly higher risk, such as seizures. There are some genetic conditions that are associated with autism, which are also associated with a higher risk of heart problems or thyroid tumors, so some screening procedures seem reasonable, and treatment if these health conditions are identified. There is a high rate of ADHD among autistic individuals, and some people benefit from medical treatment for this. There is a high rate of anxiety as well, whether as an innate part of autism, or as a predictable response to growing up autistic in an autism-unfriendly world, or likely both, and some people benefit from medical treatment for this.

And I am a medical doctor and I provide medical care for autistic children, and children with other developmental disabilities, and I address all of the above. And I think this is an appropriate thing to do.

But I don’t see autism as a medical pathology.

And I don’t treat it that way.

This puts me, immediately, enormously, profoundly, at odds against the medical culture in which I work.

I treat autism, overall, as a culture.

There’s the complication that many of my patients do not know of autism as a culture, and largely live in families that see autism as a medical pathology, and have minimal access to any other ideas about autism.

This is rather different from caring for a Burmese child of Burmese parents who is being raised in the United States but with the experience of being of Burmese heritage and with the understanding that Burmese culture is a thing.

So I am in the interesting position of treating autism as a cultural issue, under the guise of treating it as a medical issue (and I do, in fact, address medical aspects) so that I can help the child access autistic culture by proxy.

This plays out in interesting ways.

It plays out in even more interesting ways when I consider how many of these parents are part of autism culture, which is not autistic culture.

(The autism community are those parents and professionals who give you understanding looks when your kid melts down in the grocery store.)

(The autistic community are the autistic people who flap understandingly at your kid who is melting down in the grocery store. And who may have solutions about how to avoid the meltdown. These may not be acceptable solutions from a neurotypical culture standpoint, because they may include things such as not taking your kid to the store. They can share their own strategies, such as shopping at 2 AM or having groceries delivered.)

I am assumed to be part of the autism community. The autism community is the autism subset of the mainstream medical and general community. The idea that I could be part of the autistic community doesn’t fit into anything that anyone in that community knows or believes about autism.

It’s always interesting to pass as a member of a majority group, isn’t it?

I talk about what autistic adults say about eye contact and also point out the one study we finally have showing that autistic children have more difficulty focusing if also required to make eye contact. I print out copies of “Eyeballs.”

I talk about what autistic adults have said about the dangers of repressing stimming, and arguing against it as a therapeutic goal. I print out copies of “Quiet Hands.”

I talk about nurturing strengths and interests and not dismissing them as splinter skills. I talk to children seriously about their abilities and interests. I talk to teenagers seriously about how they can use their strengths and interests towards an eventual career.

I talk about autistics who type to communicate.

I offer books written by autistic authors who are not Temple Grandin.

I tell worried parents who are graduate students in the field of computer science that some number of their colleagues are almost definitely autistic, whether or not they are diagnosed and whether or not they are open about their diagnoses.

Sometimes I talk about the cultural norms of Autreat, where people could wear noise cancelling earphones if they wanted to, and fluorescent lights were replaced with incandescent bulbs and “flappause” was the quiet way to demonstrate appreciation. I explain color communication badges, which make clear the revolutionary idea that people should be permitted to have time to themselves, if that is what they want. I talk about the whole idea of an autism event run by and for autistic people.

I encourage families to talk about autism, not just as a thing that makes things harder, but as a thing that is OK and even sometimes wonderful. I encourage families to help their child meet other people like them, both other children and adults.

I talk about autistic adults as people, with a wide range of challenges and abilities, and as people who can be happy and also autistic.

And this is why cultural competency is not any sort of side hobby in my practice of medicine.
I’m still on the e-mailing list for my high school, from which I graduated 22 years ago this spring. It’s a combination of habit and lingering interest. I’m following the technical theatre program, which is about to get its own dedicated performance space for the first time in the school’s 39 year history. It has been sharing with the cafeteria for over a decade and with both the cafeteria and gymnasium for decades before that. And I’m following the science fair program, as a former award winning sciencefair-ian and sometimes judge. And I enjoy the news about some of the faculty, my favorite of whom now teaches Shakespeare night classes to adult. Typically I skim through the e-mails pretty quickly.

But I couldn’t get past the second paragraph of this one. They are apparently holding an auction with a 50s theme.

“Tickets will be on sale soon and this brings up that very important question -- What do I wear?? Dressing in character for the event is totally optional, of course, but if a poodle skirt is the first thing that comes to mind...don't be nervous. It's not the only 50s couture!

We found these do-it-yourself saddle shoes that are so easy to make.”

And that’s where I had to stop.

Because I have other associations with saddle shoes at that school.

Because I wore saddle shoes to school for about two years.

And they weren’t treated as something fun and exciting and a throwback to the past. They were treated as an object of ridicule. All my shoes were. Everything I said and did was. I was.

In seventh grade I still wore Mary Janes. And cardigan sweaters and plaid pleated skirts. I had been at school for about a week when a teacher called my mother with an array of social concerns. “Why can’t you get your daughter to dress more like the other girls?” she was asked.

She, and many adults, were operating under the impression that adolescent ridicule had gradations. Little steps could enable one to better approximate normal and thus fit in. I have come to the conclusion that most adolescent ridicule is binary. You are either an object of ridicule or you aren’t. If you are, then little factors don’t matter. If you aren’t, you can get away with all sorts of things.

But in eighth or ninth grade I wore saddle shoes. I had outgrown Mary Janes and it was becoming impossible to find shoes with Velcro in my size. A friend who lived in another state had a pair and I liked how they looked. I then discovered I liked how they felt. I prefer hard shoes and have never tolerated sneakers. So many of my sartorial choices come down to sensory considerations. I don’t know as I’ve ever used “sartorial” before in a sentence. So there I was in saddle shoes that were inconsistently polished and generally untied, because I couldn’t tie a bow until I was 16. But I loved them.

Nobody else did. Day after day I climbed the stairs in my saddle shoes. I walked and climbed stairs pretty well at the time, but my progress was hampered by a 30 lb school bag. I weighted under 90 lbs at the time. This was of course before scientists discovered children should not carry more than 15% of their body weight. I wrote a whole poem once about how I didn’t mind doing my homework but objected to carrying it home. I wonder how many subjects would have fit in under 13.5 lbs. No one ever suggested a separate set of books for home or a rolling bag or the use of an elevator. Of course, the fact that I dragged my bag across the floor and lifted it up the steps one at a time did wonders for my social standing, as did the fact that I couldn’t wear a backpack even if it was of sensible weight. So some days, students walking past me up or down would ask me why I didn’t have a backpack or found other things to criticize. Often, though, it was the saddle shoes.

Why don’t you take those back to the bowling alley?

Of course they weren’t bowling shoes. Those shoes were multi-colored but didn’t particularly look like saddle shoes. The soles were smoother, anyway. And I wasn’t about to steal. None of these were helpful answers.

Mostly I wanted to know why they cared.

I never cared what shoes they were wearing. Mostly I never noticed what shoes they were wearing.

If an adult ever heard, they never addressed it. They probably never heard. They didn’t hang out on the stairwells, as a rule. They probably should have.

But they seldom addressed other, similar situations.

Often, they joined in.

Why don’t you want your driver’s license? Why don’t you want to date? You should come to the school dance? How do you know you won’t like it?

(Why can’t you get your daughter to dress like the other girls?)

I never once had an adult say,

“Nightengale can wear whatever she wants so long as it meets the dress code”
“Nightengale doesn’t have to drive now or ever.”
“Not everyone dates”
“School dances aren’t for everyone and no one even has to try one.”
“Stop laughing at Nightengale for wearing her seatbelt.”
“Leave her alone”

Is it any wonder I came home and turned on Mister Rogers, who, every day on television, told children that people could like them exactly the way they were? Of course, watching Mister Rogers was a problem too, or at least, stating out loud that one did.

I had some teachers who appreciated me the way I was and didn’t engage in ridicule themselves, but only once I can recall a teacher standing up for me specifically to other students. Of course, he was hardly a teacher, the head of our technical theatre program, and not much of a conformist himself. But when they started in on me for lugging in a manual typewriter to document set changes, he put an end to it with, “think of it as a laptop you don’t plug in.”

Saddle shoes are neutral. Either you like the way they feel or you don’t. You like the way they look or you don’t. They fit you or they don’t. There is nothing inherently good, or bad, or fashionable or comfortable or brave or evil about saddle shoes.

It’s all in the context.

(See the social model of disability parallel here?)

Saddle shoes were popular in the 50s.

They apparently made a brief resurgence in some locations in the early 90s.

They were an object of ridicule where I lived in the early 90s.

They are retro now, so retro that there are online instructions how to decorate a pair of sneakers to resemble saddle shoes. The fact that I would never have tolerated these soft ersatz saddle shoes just irritates me more.

So no, I can’t find any lighthearted retro joy in making a pair of fake saddle shoes for a 50s theme at that school.

Not what I remember what saddle shoes meant then.

And I hope that, if there is now at that school, a little girl, or any student, really, who wears saddle shoes, or other shoes they can’t tie, or cardigan sweaters, or who doesn’t want to date, or go to dances, or sits on their knees, or all of those things and more

Or does anything else that makes them an object of ridicule, because it isn’t the specific thing, the things are neutral.

But whatever the specifics,

I hope that the same adults who are planning the fundraiser with such glee

Might notice the student and the ridicule

And say something.

Because that might be the only time anyone ever does.
In 2013 an autistic woman wrote an essay called “You Should Tell Your Kids That They’re Autistic. It’s a good piece. I’ve shared it with my department and printed out a copy to hand to some parents of patients. I linked to it awhile back in my piece, “Label your kids – and your cans.”

In it, she outlines the reasons why autistic children should be told about their autism. She points out that many autistic children sense difference early and that we owe these children a name for their difference. She talks about the benefit of community. She appeals to the right of people to know information about themselves. She notes that she has met multiple autistic people who were diagnosed as children but did not find out until much later, and who resented having this information withheld from them.

It’s a good piece, worth reading. But that’s not what I want to talk about today.

The piece was linked on a website yesterday, one read mainly by non-autistic parents of autistic children, but with a relatively large autistic readership compared to some such sites. And it’s received comments. A lot of comments. The comments fall into predictable patterns.

That’s what I want to talk about.

Overall, the comments fall into 3 main categories.

1) Comments from autistic people agreeing with the author

2) Comments from non-autistic people disagreeing with the author. (More on this group later.)

3) Comments from people stating that they are “children with autism,” rather than “autistic.” (More on this group later too.)

A thing I hear a bunch in the autistic community is that autistic people have good pattern recognition. This is. . . probably an oversimplification. Some autistic people are exquisitely attuned to pick up on subtle patterns. Some are probably better at noticing visual patterns, some verbal, some mathematical, and there are probably a good number of autistics who aren’t terribly pattern-oriented at all. And there are likely a lot of autistic people who resort to pattern analysis to figure out aspects of the world that are not intuitive.

But the comments on this article definitely resonated with me as fitting into a very common pattern of interaction between autistic and otherwise disabled advocates and non-disabled parents of children with disabilities. It’s a pattern. It’s not all autistics. It’s not all parents. But it happens a lot.

Note that the author, while stating her own opinions, is not just describing her experience. In her piece she notes the perspectives of multiple other autistics. And there are multiple comments from other autistic people agreeing with her that the piece reflects their experiences, their desires, their perspectives.

The people posting disagreeing with the author have presumably read the article. Perhaps they just responded to the title. But let’s presume they read the article. Then they read the comments from multiple autistics agreeing with the article in light of their childhood selves. And they disagree.

My child is too young to understand.

I don’t want my child to use it as an excuse.

My child doesn’t recognize he’s different.

My child is too disabled to understand.

Maybe if he asks when he’s older.

I tried and my child hates the fact he’s autistic and doesn’t want to talk about it. (To this I ask, has he been exposed to any explanation or portrayal of autism that is not negative? Has he been exposed to the notion of autistic community or met any older children, teens or adults who are autistic and proud? Did you sit him down for The Talk as though you were disclosing something secret and scary and awful? If not than you haven’t given your kid a chance to have an honest opinion about autism.)

The pattern that interests me here is that none of these responses seem to consider that the responders in the first group were likely similar as children to the children who supposedly can’t understand, would use it as an excuse and don’t recognize their differences. Those first responders who are saying, I recognized a difference, I wanted the words to describe it, and if one is truly unable to do something due to disability, it’s not an excuse.

Then there are the commenters who take exception to the self-descriptor “autistic.”

“They are children with autism”

“I don’t want my child to identify as autistic”

“They are so much more than autism.”

“My professional training program taught me to say Person With so that’s the respectful thing to say.”

Again, one of the first patterns I notice is that these commenters are talking about “they” and completely ignoring the fact that the author is talking about “I.” In some cases, there is no concept of the idea that “autistic” might be a carefully chosen descriptor, not an ignorant mistake. In others, it is repeatedly argued that it is more respectful to adhere to professional guidelines written by non-autistic people than to use the term preferred by the individual.

(Sidenote for those who don’t know the history: Person First [or Person With Disability] did come from the disability community. Many PWD – people with disabilities – advocated for its use as an improvement over “the Downs kid” or “the crippled woman.” There are many people with disabilities who prefer it, particularly people with intellectual disabilities. There are people who autism who prefer “person with autism,” also. But there are many autistics who understand all about Person First and have rejected it for themselves. There are a lot of reasons, including "Autism Is Not An Accessory" and Ari Ne’eman's assertion that the airline may lose his luggage but he doesn’t arrive "without my autism." There are also a growing number of non-autistic disabled people who have rejected it.)

Some choose to argue that autism doesn’t define people, in general, and certainly not their child, in particular. A common counter argument is that we don’t have that concern with descriptors considered more neutral. We don’t worry that describing someone as “brown eyed” will cause them to define themselves solely with their eye color. We recognize that people can be many things and some of those things can be adjectives.

And so I see the argument and the counter argument, and it again fascinates me. Autistic people saying, “I’m autistic for reasons” and often “I’m Autistic and Proud for reasons” and then people presumably reading this and then proceeding to explain all the reasons why Person With Autism is the only respectful way to talk about their child, the adult to whom they are speaking, and any other person.

But it’s not about this post and its comments. It’s about the pattern.

A few weeks ago, someone posted something on a disability-related site about meltdowns, making it into a Bingo Game. The someone posting was actually an autistic parent posting about her autistic child. Many many many autistic and otherwise disabled people wrote in protest about the piece, how it centered the person watching the meltdown over the feelings of the person having the meltdown. Many many many non-disabled parents of autistic children commented about how much the piece spoke to them and how horrible meltdowns are for the person watching them.

It made the Washington Post. But no matter if you blinked and missed it. It happened the week before, and the week after. It’s been happening for years.

A parent posts a piece about a disabled child, sharing all sorts of details. Disabled people bring up concerns about violation of privacy. Parents respond that their child is too disabled to understand privacy, and they need support and for people to understand how hard it is.

Who remembers Ashley? Ashley X was a girl with a significant disability who was given treatment to stop her growth. In 2007 her doctors wrote an article advocating more widespread use of the Ashley Treatment. It hit the press. Disabled people wrote in, horrified. Non-disabled parents of disabled children wrote in about how no one understands what it’s like. To be the parent. They said the disabled people weren’t disabled enough to understand what it was like to be the child.

It’s a pattern. Over and over. Disabled adults talking about their past as disabled children, describing, clearly, what helped them and what harmed them. Parents of similarly disabled children asserting the reasons they continue to do the things described as harmful or refuse to do the things described as helpful. Parents of similarly disabled children unable to recognize the similarities between the disabled adults and their disabled children.

The autistic community has a name for it, Not Like My Child, and has started a blog detailing the ways We Are Like Your Child.

So it’s a pattern.

I work with parents of disabled children. Oh, officially, I take care of disabled children. Children with disabilities. But a lot of this care involves working with their parents. I get a lot of the history from parents. I explain test results to parents. I give medical advice to parents. I include my patients as much as possible, but I have to work with parents.

And really, in a lot of ways, I like working with parents.

Maybe I like having the notion I can influence parents.

Mostly the parents of my patients do not know I’m disabled. They see me as Like Them. They don’t fathom all the ways I am more Like Their Child.

Sometimes I share bits of myself, about my difficulty with handwriting, about my loathing of vacation. More often I share bits more impersonally, from the disability community. I quote autistic and otherwise disabled adults. I recommend essays and books written by disabled adults. Please don’t force your kid to make eye contact, I say. Many autistic adults report it makes it harder for them to focus and some find it downright painful. Don’t make your kid stop flapping his hands. Lots of autistic people talk about all the benefits of stimming. Your behavioral therapist will disagree with me, I say. But I’m telling you what lots of people who were like your child as a kid wish their parents had known. Adults with CP often wish less of their childhood had been spent focused on walking, I say. And so on.

Pattern recognition being what it is, I know I will say it over and over.

It’s the only thing I can do to try to break the pattern.
As a (still) mostly closeted autistic, I didn’t participate in Autistic Speaking Day last year. The year before, I had written about why I was still in the shadows. And so last year, when the day came and went, I couldn’t think of anything to add.

I felt that way for much of this year as well. But then I thought about the ways I speak, and listen, as an autistic, for autistics, even when closeted.

Unusually (but not uniquely), for an autistic, my voice has long been my strength. I used words early and often. I wanted to know the name of everything. I puzzled over dogwood trees that didn’t bark (I barked at them) and a city called Braintree where there were no brains on the trees. I read and read and read. To this day, there are still words I know from reading which I have never heard spoken, which makes pronunciation a challenge if I ever do attempt to use them myself. I still read and read and read. I love that the words “read” past tense and “read” present tense are spelled the same but pronounced differently. I hear words spoken out loud in my head when I read or type. I cannot think in pictures without translating them into words first.

When older, I studied other languages. Latin, then French, then American Sign Language. Frustrated when my English teachers did not show us how to diagram sentences, I loved the structured way Latin grammar was taught. I loved my French 1 teacher’s insistence that French was not a code of English and the idea that languages were more than lists of words. I loved the grammatical markers of ASL, even though my visual processing challenges made and make them hard for me to see and master. I loved understanding English words with Latin roots and Greek roots and German roots and Arabic roots, and how that leads to multiple synonyms. I agree with Mark Twain, who is attributed to having said that the “The difference between the almost right word and the right word is the difference between a lightning bug and lightning.” Thinking about that quote makes me think about the way I learned the ASL for “lightening bug,” a story I cherish, and all the difference in nuance between “lightening bug” and “firefly” describing the same insect species.

I did not code-switch well as a child. Poorly armed with any other way to defend myself against the continuous bullying, I responded with the full extent of my vocabulary. “Speak English,” was the inevitable taunt. “I am,” was the only logical response. I refused to use curse words and popular slang. Over and over, I was goaded into saying “cool.” I would, using it carefully in a sentence to describe a day that was not warm and not cold. I couldn’t fathom using it to describe a person, place or event outside of temperature, even as I heard others apply it that way. I preferred “spectacles” for “glasses.” 30 years later, I still defend my right, then and now, to use large words and avoid slang at will.

But I have also learned the value of code-switching. I have carefully, purposely added some slang to my vocabulary. I picked up some useful Southern phrases when living in the South, which helped my communication with families and coworkers. I adapt my syntax and vocabulary to accommodate non-native speakers of English and individuals who might find my vocabulary intimidating and detracting from the message. After all, unlike many doctors who perform diagnostic procedures, my work depends greatly on my ability to communicate effectively. There is always a fine line between over-jargon and over-simplification, and the line varies from situation to situation.

Which brings me to my autistic ear. To choose the right words, I stay attuned to the words of others. How do parents describe their child? How does my co-worker describe a patient? This guides me to make an educated guess about their knowledge, background, beliefs. I may mirror their words, or I may decide their words are too dangerous to mirror. Either way, I use the information to guide my response.

In addition to an ear for vocabulary and syntax, I have an ear for tone and prosody. This is my salvation, since I do not have an eye for any but the most blatant of facial expressions or gestures. My ear tells me when families may be getting angry or frustrated. If an edge comes into their voice, I work the harder to remove any trace from my own.

I use my ear diagnostically, to figure out which children may join me in autismland. I listen for differences in pronoun use, phrases borrowed from TV or adult speakers and vocabulary which is unexpected for the child’s age. This helps me guide my referrals, even if I miss cues of eye contact or pointing. I joke about my ASDar, but it’s largely an ear.

Note that I did not say, “misuse of pronouns,” “echolalia” or “abnormal vocabulary.” Words matter. Respectful words matter. Even from the closet, I can model and insist on using words in useful ways. This means both avoiding language that serves to insult, and also that which serves to euphemize. This means choosing my words carefully for tact.

We are starting a new endeavor at work which has nothing to do with autism at all. But it is in an area of health care where language used to describe patients, by professionals and the general public, is often cruel. In addition to sorting out the medical knowledge I need to provide care for individuals in this group, I am trying to take a stand on language. I know that the language used by those in charge of a medical team has incredible potential to influence the language used by others. Language, in turn, affects attitudes, and attitudes can affect care. My stated goal is to use and encourage language that is both accurate and respectful, and to continually reiterate that these goals are not mutually exclusive.

That’s a mouthful, and not always the mouthful I will use at work. But I have to start in my head with the language that feels best to me. They may not know that I’m using my autistic ear and my autistic voice, but I’m using them none-the-less.

An autistic setting language models for others to use. Ooooh! I think I’ve found a new definition of irony!
Page generated Oct. 19th, 2017 10:36 am
Powered by Dreamwidth Studios