I am reading (re-reading) a book written in 1952. The book opens in 1940 with the birth of the author’s daughter, and ends in 1952 when the daughter, Karen, is 12. It’s a true story, possibly one of the first books written by the parent of a child with a disability about that experience. My edition came out in 1983 and includes a forward by the author written that year.

I did not read the book in 1983, when I was seven. I was precocious and a voracious reader of books about disability, but not quite that precocious. I probably got my copy in 1988 or 89, when I was about 12 myself.

Karen – for that is the name of the book, as well as the name of the child, well, person, really – was not my first introduction to cerebral palsy, since it had come up in some of the books I had read on disability in the children’s section of the library. It was my first in-depth look, however. So I delved right in.

It was also an early look at historical factors in disability, in a lot of ways, more immediate than the books I’d read about Helen Keller or Louis Braille in many ways. At some point, I realized that Karen was about the age of my parents. At every point, I realized the forward was written in my lifetime.

Karen’s parents were advised to place her in an institution. I’m not sure I’d previously realized that was something still done in this century. Which is to say that century, now that it’s the next century. At one point, they were told that the solution for cerebral palsy was known in China, which was to leave such children on a mountain top. That was a solution for disability I’d previously only encountered in history class in a description of ancient Sparta. I’d push these all off as things in the past, but a co-worker with two preteen children told me of bringing her infant daughter to a new pediatrician. She mentioned her older child had autism, and the doctor asked if he lived at home. (Yes, there are children with disabilities who do not currently live at home. No, this was not common enough in 2000 to have made it an OK thing to ask.)

Karen was written, and Karen took place, and Karen lived before the civil rights laws were passed to protect people with disabilities. Children with disabilities did not have a legal right to an education. Accessibility wasn’t expected pretty much anywhere. Karen’s parents, the book author, Marie Killilea and her husband, founded the group which later became United Cerebral Palsy. It was years before I encountered this organization again, and years further before I made the connection.

The language is at once old and new. The term “handicapped” was used. I know it’s supposed to make me cringe, but I’ve always actually preferred it to the term “disabled.” Killilea also describes a family meeting held around 1943, where they decided to always describe their daughter as “not being afflicted with cerebral palsy, but affected by cerebral palsy.” That’s pretty progressive for 1943.

Some of what we know about cerebral palsy has changed. We now only term something CP if the causative injury occurred in a developing brain, generally before, during or shortly after birth. Their doctor used the term more loosely to describe motor impairment caused by brain damage, including accidents or injury to adults. The categories of CP have changed some. The treatment recommendations have changed more than some. As I learned contemporary medical theories, I have had to unlearn my historical ones.

I recognized myself in the book in only one spot. I still do. It’s not in the description of spastic muscles, which I don’t have. It’s in the description of overflow, where one body part starts moving involuntarily when other parts are active. I was about 12 when I realized I had this after reading about it.

Karen is a high school graduate by the end of the sequel and over 40 by the time the forward was written. I’m nearing 40 myself now. Karen and I were children together in the text and are middle-aged together in the forward. Only Karen Killilea, who I believe is still alive, is really in her 70s.

I’ll probably read it again in a few years.

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I am reading (re-reading) a book written in 1995. The book opens in 2058. It’s a cross between science fiction, mystery and romance. (I skim over the romance sections just enough to make sure I’m not missing any plot.)

I did not read the book when it first came out. I probably got my copy in 1998 or 1999. But it was written in 1995. I have to keep remembering that.

I’d describe the book – the series, really – as low to mid sci fi. It has regular trips to the moon but no aliens. The main character is a NY police detective who ends up marrying the richest man in the world. That’s a spoiler for the first book, but since the book was written in 1995 and there are now dozens in the series, I think it’s OK.

Their past is our future. There’s a made up Urban War. 9-11 never happened. Guns have been outlawed, which doesn’t stop people from killing each other, often more than once per book. Prostitution is legalized and regulated. Food is mostly vegetarian and there are shortages of chocolate, coffee, real meat. Some of the slang is exactly the same, and some is ours with the labels rubbed off. Hospitals are called “health centers,” which I suppose meant my former employer was forward thinking when it rebranded itself a Health System instead of a Hospital System. Or it may have been past thinking, since we don’t know when, between 1995 and 2058, this shift occurred.

The technology is at once strange and familiar. The protagnonist’s car flies, albeit not very well. It can drive itself, although it generally doesn’t. Self-driving cars were much less a possibility in 1995. I’m planning to own one now within a decade. I’m not sure cars will be person-drivable by 2058. I also don’t think they’ll fly. Androids supply some security and other functions. I’m not holding my breath for that one.

All phones are video phones. I believe that technology was rarely available in 1995. I thought then, and I think now, that enabling video as a default setting is simply absurd. No one should have to quickly say “video off” before answering a call from your boss while you are in your pajamas or birthday suit. Many people have mobile phones, called “links,” certainly many more than had them in 1995, but they aren’t as ubiquitous and functional as most cell phones are today. People still have to call multiple numbers to reach people. The police can’t easily trace mobile links to locate someone.

Texting hasn’t been invented yet. Or blogs. The police computer can calculate probabilities but it’s search engine can’t unearth nearly as much as Google. E-mail is a thing in 2058 (it was in1995, too) but computers are overall more independent than they are today. People have to constantly send each other information – or put it on discs – that today would be on a cloud drive of some sort. A police officer can’t just log in to access lab or ME reports but has to wait for them to be sent up.

There’s some serious tech handwaving. Police officers can apply “seal-it” to prevent leaving trace evidence at a crime site. There’s a drug, “Sober-Up” that does what it says. It’s not quite clear how Eve’s “weapon” works, except that it’s not a gun.

I’m not sure what I now expect from 2058. Regular trips to the moon? Anti-cancer shots? We’re talking about 40 years into the future. This series started about 20 years into our past, so it projects about 60 years. Things which seemed plausible to me then are laughable now. Or they’ve happened already. The plot takes a backseat to the worldbuilding.

I'm trying to read/re-read the whole series.

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I re-read books. I always have. At one point in my own past, I stated that any book worth reading is worth re-reading. I don’t quite follow that anymore, but I do frequently revisit old friends.

I read quickly, which helps. I re-read both these books within about a week of each other. Of course, re-reading is probably faster than reading.

Yes, I reread murder mysteries. Sometimes I remember whodunit and sometimes I don’t, but I don’t particularly care either way. Regardless, I read mysteries to enjoy watching the protagonist figure it out, not to figure out what they figure out.

I notice new and different things each time. Sometimes I notice special little gems of phrasing I’d not caught before. Sometimes I notice continuity errors.

I change over time. What struck me in a book at 12 or 14, perhaps identifying with a child character, is different than my perspective nearing 40, identifying more with a parent character. Or perhaps I still see myself in that child, but as a “was” rather than an “is.” I know more over time. Consider what I know now about cerebral palsy, reading Karen, when once most of what I knew about cerebral palsy was from Karen.

Often, when I re-read, I remember my previous thoughts and life circumstances. There are books I never revisit without hearing in my head the music I sang in chorus that semester. There are books which bring me back immediately to 8, or 18, or 28.

And time changes over time, too. In my past week of rereading, in 2015, I’ve gone from 1940 to 1953, to 1983, to 1988, to 1995, to 2058. Reading about the past in the present, remembering reading about the past in the past. Reading about the future in the present, remembering reading about the future in the past.

So I’m left with platitudes. Past is prologue. Those who do not study history are doomed to repeat it.

Or maybe I’m just left with a good book to read. (Re-read)
A few weeks ago, I walked a bicycle into a bicycle sales, supply and repair shop. As I told the people there, I had a bicycle that had not been ridden for at least five, and possibly ten years. I, myself, have not been on a bicycle for at least five, and probably closer to ten years. I wanted to know if the bicycle had a future, after which I would be able to determine whether the notion of my riding the bicycle had a future.

Amazingly, no one at the bicycle shop laughed at me in front of me while in the shop. This is probably because I was already laughing at myself.

A week later, the bicycle had new tires, new lubrication and newly wrapped handlebars. After a 10 minute engineering session with a collection of bungee cords, I put on a helmet, rode across the strip mall parking lot, didn’t die, and rode the bicycle the half a mile home. En route, I stopped at the grocery store and had another battle of the bungee. The trip was otherwise uneventful although there is something wrong with my garage door opener. It used to open my apartment garage doors. It no longer does. I would have to take the bicycle down stairs or into an elevator to return it to the garage, so I instead walked it up the front ramp, down the hallway and it is now sitting in my apartment. I put a paper plate under the kickstand to keep it from scratching the floor.

So the bicycle appears to have a future, and more so now that I have acquired a bag to attach to the rear rack. I may buy a second bag but I’m going to try one for now. I was pleased to find one at a non-bike store for much less than that being asked at the bike store, and that seems to serve my purposes better. Without a reliable way to transport stuff, the bicycle is anti-useful. If it is going to be used to run errands, it needs to be able to transport the fruits of my errands, be they fruits, or vegetables, or library books. It also needs to transport a means to pay for said errands. And then it needs to transport a number of health-maintenance items. And no, a backpack is not an option.

What remains to be seen is what sort of future I have as a bicycle rider. The level of competing access needs cannot be overstated. Only that’s not even the right term. The disability community really needs a term to describe the phenomenon where needs related to one disability or condition directly impact one’s ability to care for another disability or condition. I am open to suggestions.

First, and really least, there’s my asthma. I have exercise-induced asthma. Or at least, I used to have exercise-induced asthma. I’m not sure I do any longer. I used to have symptoms when dancing unless I took medication beforehand. A couple of years ago, I had to switch medications because the one I had been using and loving was taken off the market. My new medication is supposed to be taken at least 2 hours before exercise. Last year, I forgot to bring a dose to work with me and went dancing without it. I had no problems. I then skipped it on purpose the following week and again, danced symptom-free. I haven’t taken it since. It may turn out to be needed again, when I try dancing again in winter, further north than I used to dance in winter, or it may not. I suspect it will not be needed before the level of bicycling I intend to attempt. But regardless, I never travel without my rescue inhaler so onto the bike it goes.

Then there’s diabetes. I haven’t been on a bike since diabetes. Exercise is supposed to be really good for diabetes. And I mean, it is. In the long term, regular exercise can lead to less insulin resistance, better cardiovascular health, all sorts of things. And then there’s the short term. Exercise makes my blood sugar drop. Often, it makes my blood sugar drop fast and far. This isn’t always predictable, and often occurs somewhat after the exercise in question. But that means that any form of exercise must be accompanied by a means to measure blood sugar and a way to treat it if it drops too low. So onto the bike goes a blood sugar meter, glucose tablets and crackers. And also onto the bike goes spare supplies in case my insulin pump needs attention on route.

The one that is going to trip up most people, though, is mobility. I would really like to have access to my cane when I get where I am going. The juxtaposition of the ability to ride a bicycle and the use of a cane tends to figuratively break people’s brains. And I mean, I don’t know. I haven’t ridden a going-places bicycle since I started having hip problems. I have ridden a stationary bicycle, successfully, as part of my physical therapy to try to improve said hip problems. Every week I muttered that by the time I’ve ridden a bicycle for 20 minutes, I should have reached the next town over, not be in the same room where I started.
But let’s assume that riding a bicycle will not make my hips worse. I don’t plan to ride at any great speed, any significant distances or up any steep hills. I am hoping for a 2ish mile range to the library and the better grocery stores, which is slightly farther than my comfortable walking range, and the ability to cart somewhat more stuff than I can easily do on foot.

So onto the bike goes the cane. Have you ever tried to fasten a cane to a bicycle? I thought it might go along horizontally/diagonally along the frame, but there seemed to be brake wires everywhere. Finally I bungeed the thing to the back rack in an upright position. It’s. . . there. It’s my spare cane, one I don’t mind getting banged up, so it’s been there since the bicycle came home. It remains to be seen if I can ever again get it into the same position or if there are better positions. I suppose at some point I can look into those gadgets to fasten a cane to a table and see if one of those could be more permanently affixed to the bicycle. I suppose at some point I could consider a folding cane.

I suppose at some point I could try to track down the person I believe I encountered online, perhaps several years ago, who I believe bicycles with crutches, and see if they included a how-to guide. It was probably remembering that persons’ posts or comments or whatever it was that kept the thought in my mind that biking on three legs might possibly have a future.

I’ve started to make the informal observation that the people with disabilities who seem the most successful are the ones that draw from a variety of strategies depending on the circumstance. The ones who walk unaided, sometimes, and use a walker, sometimes, and use a scooter, sometimes. The ones who use Braille, sometimes, and a screen reader, sometimes, and a magnifier, sometimes. The ones who talk, sometimes, and use sign language, sometimes, and type, sometimes. Certainly, there are a lot of people with disabilities who only have the ability to use one or a few methods, but I think there are vastly more people who believe, or have been taught to believe in only one. I’d love to see an actual study on this, sometime, although it would have to be done by someone who could operationalize “successful” in ways that are actually meaningful and helpful to people with disabilities, which is a pretty big IF.

But I am already a person who walks with a typical gait, sometimes, and toe-walks, sometimes, and with a cane, sometimes, and with a luggage rack, sometimes, and takes the bus, sometimes. I dance, sometimes, also, and hop, skip, jump and crawl. I like having options. I like being able to select the best option, defining best as best for me at a given point in time given the circumstances. I refuse to be hobbled by binarism. Part of the art of disability is the ability to distinguish between actual and imposed limits related to impairment.

So we’re going to see if I’m also a person who bicycles, sometimes, and start determining what sometimeses those sometimes might be. And I’m going to start by bungee-cording half a pharmacy to the back of the bicycle, followed by my purse, and topped off with a bag of bungee-cords.

Did I mention the motor skills and visual planning skills needed to pack all these things in a way that will allow them, and me, to arrive at our destination intact and access items when necessary en route? Yeah, OK, let's not.

*Fastens, helmet, swings leg over, adjusts skirt (yes, I bicycle in a skirt), releases kickstand and waves*

Hmm. Maybe I should attach a flag to the top of my cane sticking up in the back. . .
One working definition of adulthood, for me, is that no one can make me watch fireworks for the Fourth of July anymore.

No one can make me go to a cookout, either, for that matter.

Yes, I said “make.”

I know that fireworks and cookouts are supposed to be fun.

And they are. Except when they aren’t. Fun is only fun if it’s fun.

I’ve been thinking about this a lot lately in my adventures in autismland.

I’ve been reading a new – newish? model for assessing and educating autistic children. And it’s not horrible. I realize “not horrible” is not exactly a ringing endorsement, but honestly in this field, “not horrible” is actually pretty rare. I can’t think of another system that is better overall and I can certainly name worse ones. It recognizes sensory needs. It incorporates visual supports and augmentative and alternative communication methods. It recognizes that in times of stress, adults adding more words to the situation can cause more harm than good. It includes the idea that children should be taught to request breaks and given supports to do so and have the request respected. These shouldn’t be revolutionary ideas in education or therapy settings, but they pretty much are.

But it is not without problems, and one of those problems is the way that it privileges certain types of play over other types. It also privileges spontaneous spoken communication (even though one of the creators has done research on the function of echolalia and found, unsurprisingly, that echolalia has functions) and eye contact and interaction with non-disabled children over solo pursuits.)

Play is what I want to talk about, though. Play and fun.

The makers of this model are not the only people to consider certain types of play as better than other types. And they are pretty consistent in their judgement.

Spinning car wheels is bad play. Flicking doll eyes open and closed is bad play. Closely watching boxes fall off a table is bad play. Lining up blocks is bad play. Sorting dinosaurs by color, or size, or diet is bad play. Working math problems at recess is bad play. Looking for rocks on the playground is bad play.

Running cars on the table and making “vroom vroom” noises is good play. Feeding dolls and putting them to bed is good play. Pretending a box is a hat and wearing it is good play. Building castles out of blocks is good play, unless it’s the same castle over and over, of course. Having carnivore dinosaurs eat herbivores is good play. Monopoly with classmates is good play. Soccer on the playground is good play.

Actually, a lot of times, activities in the first category aren’t even called “bad play” or “wrong play.” They often aren’t considered “play” at all. “He doesn’t really play,” says a parent or therapist, which makes me wonder what the child was doing for the past fifteen minutes when touching and licking toys with a big grin.

Maybe I got the definition of “play” wrong.

(Stops. Consults google.)

“engage in activity for enjoyment and recreation rather than a serious or practical purpose.”

No, I got the definition right.

I checked “fun” too, while I was at it.

“enjoyment, amusement, or lighthearted pleasure.”

That’s what I thought.

What has happened is that many people, including teachers and therapists and researchers, but also actually most people, have reworked “play” and “fun” to refer to things that the majority of people consider play or find fun. This reworking is so deeply engrained as to go unnoticed as a reworking. That’s privilege for you.

“I hate to travel,” I say.

“But traveling is FUN” says a coworker.

No, travel is fun for my coworker because it’s fun for her. It’s not fun for me because it isn’t. It’s a privilege to be able to assume that fun for you and fun for most is fun for all.

Now, none of this is to say that life should be all fun, all the time. Children and adults have to do all sorts of things they don’t find enjoyable, usually on a daily basis. Some necessary things that are frequently considered not-fun include taking medicine, getting vaccinations, stopping a great video game to have a family dinner, washing dishes, attending 7AM work meetings, drawing up a budget. . . the list goes on.

I’m not even saying that children shouldn’t ever have to do things they don’t find fun that most people find fun. The way schools currently work, many children have to play at least some soccer in order to get credit for PE class in order to graduate from high school. Maybe schools should work this way and maybe they shouldn’t, but many of them currently do. But even if it’s OK to make kids play soccer, we should at least respect these kids by letting them know we understand it isn’t fun for them. If you tell a soccer-hater that soccer is fun, that probably isn’t going to improve how they feel about soccer. It may, however, negatively impact how the child feels about you. It may possibly even impact how they feel about trying other activities billed as “fun” in the future. This is really really hard for a lot of people with reasonably conventional ideas of “fun” to understand. This includes a lot of teachers and therapists and parents.

And there are also times when people may choose to do things they don’t particularly enjoy, for various reasons. Take that kid who hates soccer. He wants to play with the other kids at recess, and those kids like to spend recess playing soccer. The kid may choose to play soccer anyway, at least sometimes, because the enjoyment of the group activity outweighs the dislike of the activity. That’s a valid choice. The kid may also choose to do something else, alone, or to suggest another group activity and see if anyone wants to join in. Those are valid choices too.

I made spaghetti and meatballs for my father this year for Father’s Day. It’s his favorite dish. I hate meatballs. I have never liked meatballs and probably never will. But I made them and I ate them. That was a choice, one I’m glad I made and would make again under similar circumstances. What isn’t OK is to tell me that meatballs are objectively good, or tasty. Because they aren’t. Meatballs taste great, if they taste great. They don’t if they don’t. That’s the same for all foods. And all activities, really. Someone may start to like something they previously disliked, or start to find an activity fun over time, but simply calling something good, or tasty or fun doesn’t actually make it so.

When I hear that a child plays alone at recess, I do my best to find out why. I typically ask the child what they tend to do at recess and what they most like to do, or would most like to do. This is how I found out about the kid who liked to work math problems, and the kid who liked to look for rocks, whose parents and teachers were expressing concern, respectively. When I see goals for children to interact more at recess, I question those goals. If the kid wants to join group play but doesn’t know how, those are great goals, to teach and support those skills, and recess is a great time to do it. And there are certain goals I support teaching even for children who prefer to be alone, such as sharing materials and not interrupting other people. Those are useful skills for the classroom which can become useful skills for the workplace. However, I question the rationale for teaching those goals at recess. Recess is supposed to be a time for fun, for play, for free time, for down-time.

Instead it’s turned into a time to teach hard things.

All children, all people, need down-time. There’s reasonable evidence to suggest that most autistic people need more down-time, not less. Time spent communicating with words and non-verbal signals is difficult. Time spent around sensory input is tiring. Time spent thinking through everything you are about to do and say is exhausting.

The least we can do is refrain from filling up “play time” and “fun time” and “down time” with more things that are difficult and exhausting. Oh and also, we can not lie to people and tell them they are having fun if they aren’t.

Here’s a list of some things I find fun and enjoyable. Note that some of these fit more with popular conceptions of fun than others. Cooking. Scottish Country Dance. Reading Harry Potter. Watching ER. Reading cookbooks to better understand the science or history of food. Discussing the use of language in Harry Potter. Jigsaw puzzles. Crossword puzzles. Watching Broadway musicals. Writing parodies to songs from Broadway musicals. Discussing continuity errors in ER episodes. Reading blogs written by autistic people. Taking trains.

Here’s a list of things I don’t find fun or enjoyable. Note that some of these also fit more with popular conceptions of fun than others. Washing dishes. Discussing romantic relationships in ER episodes. Traveling. Watching fireworks. Going to early meetings at work. Going to crowded places. Playing or watching sports. Driving a car.

Not liking popular things is irritating, because popular things are everywhere. But disliking popular things brings an additional level of difficult, because popular things aren’t just everywhere for the convenience of those who like them, but everywhere for the assumed convenience of everyone. So conversations about what should be a matter of taste become situations where one has to defend one’s right to an opinion and appeal to the very definition of fun.

“How can you not like –“ hamburgers? To travel? Going to parties to get drunk? Watching football? They’re good! It’s fun!

Well, no. Play is play if you are enjoying yourself playing. Fun is fun so long as it’s fun.

And if you enjoy fireworks and cookouts, I can pull up in my mind the wonderful fun feeling I have staying home and cooking salmon and trying a new recipe for strawberry shortcake. (Did you know that salmon and potatoes are a very traditional Fourth of July meal?) And I can assume that fun for you feels like fun for me, no matter how different the specifics.

Wouldn’t it be great if everyone could substitute that feeling of fun for the imposition of conventional fun? Wouldn’t we all have a lot more fun?
Over the past year or so, my family has been making some difficult medical decisions. My mother has been doing much of the deciding, on behalf of an elderly relative who has had decreasing ability to participate in making informed decisions.

Sometimes my mother remembers to use me as a medical consultant, which has led to a few amusing moments, such as her attempt to explain to me why a nebulizer machine is easier to use than an inhaler. Or when she asked me how I knew the relative merits and drawbacks to canes, regular walkers, rollators and scooters. I had to ask her what she thought I did for a living.

And sometimes she calls me for moral support, which I suppose I can provide whether or not I went to school for it, but sometimes school helps. At one point we were discussing a surgery which had been suggested, the potential risks, the potential benefits, all of which we had discussed before, with no clear answer and would discuss again as circumstances shifted slightly.

And finally I said, "If there was one definite right decision, we would have made it already."
Which was another way of saying something I've been saying about the practice of medicine and medical education for awhile now.

Most medical situations involve multiple right answers.

There are wrong answers in medicine. Then there are a variety of right answers. Some of the answers may be more right than others, but even a less right answer is more right than a wrong one.

And there’s a difference, a big difference, between a less-right answer and a wrong one.

There are days I think that this is the most important thing we can teach our medical students and residents.

In some ways, I think it is even more important than teaching them to "listen to patients." Of course I think that listening to patients is vitally important. But simply telling students this accomplishes nothing. Those who already respect their patients continue to do so, generally by instinct. Those who don't are given few concrete strategies that do not sound like lines recited from a script.

But learning to recognize the difference between an alternate right answer and a wrong answer, if done well, incorporates the need to listen to patients and operationalizes this need.

And sadly, I think we need to operationalize it, because current teaching methods are not sufficient. As far as listening to patients goes, typically medical students get a series of lectures and demonstrations about how to listen to patients. They are taught about asking open-ended questions and not interrupting. They are taught about using sensitive language, and silence, and touch. They are taught about empathizing, telling patients they (the student/doctors) realize how hard it is for them (the patients). Sometimes, students have the privilege of seeing patients interviewed by master clinicians, sensitive physicians who practice what they preach.

And then the students get turned loose in the hospital and clinics for another few years. In these settings, the only available role models are not demonstrating any of these techniques and often brush them off as touchy-feeling uselessness. Quickly, students learn they are reinforced for being fast and smart, not thoughtful and kind. Then they grow up to be the same kind of teacher. Medical generations are very fast – third year medical students can become junior faculty in just 4 years - so the cycle continues.
But multiple right answers theory? It’s teachable in the classroom and can be reinforced on the wards. It’s arguably measurable. And in addition to leading to more caring doctors, it leads to more cognitively flexible ones as well. Which leads to better diagnosis, better treatment, better everything.

You start with case discussions. Paper cases. It’s a tried-and-true way to teach medical students, and it’s not a bad one. The way it goes is a student or group of students read the first part of a case and then generate a list of further questions they would ask. They are given more of the case. Over time, they develop a list of tests they would run and then a differential diagnosis, or list of things they think could be wrong with the patient. Often, senior physicians are involved in the teaching process, which ends with a final unveiling of the correct diagnosis and some teaching points about it.

So instead of treating paper cases as a maze with multiple dead-ends and one correct diagnosis point, start exploring them more like maps. What test would you run? Why? OK, here’s the result. What do you do now? What conclusions do you draw? Meanwhile, your classmate would order a different test. What diagnosis does that suggest is more or less likely? Let’s look at the list of differential diagnosis not as a set of radio buttons but rather as a list of possibilities to be ranked in order from most to least likely. Or from most to least serious if missed.

Paper cases often focus on diagnosis to the exclusion of treatment. So do presentation of real cases for teaching purposes. Most residency programs run a “morning report” where interesting cases are discussed in similar manner. Often the end teaching point is an unusual diagnosis or unusual presentation of a more common condition. Over time, this means that junior doctors talk and learn a lot more about diagnosing things than treating them, and a lot more about patients with new, acute conditions. I tried to buck this trend by presenting patients who came to us pre-diagnosed, often with a chronic condition, and challenging us to figure out what to do about it.

So after making the list of conditions, and picking one or a few likely contenders, the next step would be to help the students make a plan of action. And for each step of the plan, to discuss multiple treatment options. Antibiotics or watchful waiting for the child with an ear infection? Medication or pacemaker treatment for the adult with an arrhythmia? Radiation followed by surgery, or surgery followed by radiation for this tumor? Increase the dose of the stimulant or add a second medication? Admit the patient or send them home?

Students should be taught there are options in almost all medical situations. They should be taught to read and evaluate the literature comparing and contrasting these options. They should be exposed to multiple senior physicians in any given field who disagree about treatment options and can express their opinions with at least marginal civility. Hearing two senior cardiologists discuss medication strategies for congestive heart failure is instructive. Calling one endocrinologist, only to have her belittle and countermand the advice you got last week from the other endocrinologist, is not so much. Likewise, "the evidence shows" is a better teaching strategy than "we do it this way."

Students should have a chance to see a more aggressive and more conservative approach across a variety of fields. Some doctors order lots of tests. Some doctors tend not to order very many tests at all. There are probably some doctors who order too many and some who order too few, with the truth lying mostly somewhere in between. Some primary care doctors refer out a lot and some treat more things themselves. Some specialists use a lot of medications while some use few. Students need to be exposed to multiple viewpoints so they can develop their own styles.

And students equally need to be exposed to multiple viewpoints so they can start to recognize when their mentors DO all recommend the same tactic. There are wrong answers in medicine, and students need to see a variety of teachers avoid those wrong answers. If five neonatologists recommend ampicillin and gentamycin for newborns with suspected infections, there’s probably some good evidence behind the plan.

And here’s where the “listening to patients” part comes in.

As part of the discussion of possible diagnostic tests and treatment options, students need to be taught to take patient and family preference into account. One medication may have a higher chance of working, in a test tube, but it has to be taken three times a day and the family is more likely to remember all the doses of one that only has to be taken twice daily. Surgery may be able to repair the heart valve, but there may be many reasons why the patient doesn’t want surgery. One family may want a stimulant for ADHD while another wants to try “everything else” first. The right answer for a patient who lives in the city may not be the right answer for one who lives 2 hours from the nearest children’s hospital.

So part of evaluating the student has to be in their ability to discuss options with a patient or family, answer their questions and support their decision. Like everything else in medicine, students should see this modeled first, before turned loose in the hospital to try it themselves. And students should be coached ahead of time on the pros and cons of the options under discussion and encouraged to read articles about each strategy.

If multiple right answer theory becomes standard teaching practice, it can go onto those little checklists used to evaluate them every so often. “Listens to patients” is often assessed but can’t be measured. “Discussed two treatment options and helped a patient make a decision between them, taking patient preference into account,” is. . . still touchy-feely to be sure, but considerably less so.

Tests could be re-written as well. So many medical exams ask students to choose the “best test” to order in a given situation. Typically, there are a couple of red herrings mixed in with a couple of good choices. In a real emergency situation, I would order several tests at once and get them in the order they can be performed. It would make exams harder to grade, of course, but I would be in favor of having students rank tests in order, or give a reason to order or not order each test on the list. Or let them choose two to order and two to avoid. Or anything that reflect real life medical practice and avoids reinforcing the idea of one true way. Since “will this be on the exam” is a common sentiment expressed by medical students and their teachers alike, changing the exam could force a vital shift in teaching, learning and thinking.

The current buzz-words are “patient centered care,” “family centered care,” and “shared decision-making.”

They are definitely buzz-words.

They also work.

I use multiple right answer theory all the time when talking with patients. I give them information. If there are multiple treatment options, including the option to “do nothing” for now, I outline them. If there are options I think are poor choices for the situation – wrong answers – I explain them as much or as little as needed. Typically I bring up two or three right answers. Sometimes, one right answer seems more right, and I may tell families why I recommend it more strongly than other options. But I try to present pros and cons, risks and benefits. I answer questions, sometimes a lot of question. Sometimes we make a decision together on the spot, and sometimes the family wants to go home, read more, think more, talk with other family members first. Eventually we make a choice and see it through, and I generally find that, even if it turns out we chose wrong, that our plan didn’t work, we didn’t make a wrong choice. We made an informed right choice that turned out to be not right after all.

And so we try again. Together.

Don’t you want your future doctor to understand the difference between a wrong answer and an alternate right one?
My prior Blogging Against Disablism Day posts are (2006), (2007) (2008) , (2009), (2010), (2011), (2012), (2013) and (2014)

Happy 10th Anniversary to Blogging Against Ablism! I'm proud to be participating for my 10h consecutive year. And sad that we need to at all.

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My father used to talk about his high school Latin teacher, who only supplied his students with one sheet of paper for exams. When students asked for a second sheet of paper, the teacher would refuse, stating, “If you erase all the wrong stuff you’ll have plenty of room.”

This has always struck me as a misguided policy for Latin exams. Some students may choose to translate passages using more words than others, and of course, handwriting size can vary widely.

But lately I’ve been thinking about this phrase in my work to change the way health care providers are taught to think about disability.

In 2003 I entered medical school with several chronic conditions and disabilities of my own and a plan to specialize in the care of children with developmental disabilities. Therefore I kept my ears perked for any mention of disability dropped in lecture.

References were simultaneously plentiful and alarmingly few.

I still remember the lecture on geriatrics where the presenter mentioned that many of the principles she was about to discuss might apply to patients who were not elderly, such as a child with cerebral palsy. And she was right, they did. I also remember the gentleman who was brought in to speak to us about blindness, and the doctor who had been introducing his talk for years but struggled to find appropriate language to describe disability.

There was also a fair amount of curricular content centered on what I call the cause-cure-prevention perspective of disability. We indeed learned a fair bit about the causes of various conditions, along with information to help people not have those conditions anymore, or to have as few symptoms from those conditions as possible, or to not have had the condition in the first place. For example, we learned a lot about symptoms from having a spinal cord injured at various levels. We learned about emergency room treatment for people with spinal cord injuries to preserve as much nerve function as possible. We learned about various ways that retinas can develop problems leading to blindness. We learned about genetic conditions which are associated with intellectual disability, ranging from Down Syndrome to Fragile X syndrome to PKU.

There’s nothing inherently wrong about teaching these things to medical students, of course, although I believe that conceptual teaching about disability is ultimately more useful than teaching specific facts about specific disabilities. Consider the student who can parrot symptoms from a spinal cord injury at C8, but knows nothing about prevention of pressure ulcers in people who use wheelchairs for a variety of reasons, or how to order a wheelchair for a patient or even how to set the brakes on a wheelchair, who furthermore has never been taught anything about the cultural or civil rights aspects of disability. Which student is going to be of more use to more future patients? Specific, factual details can be looked up later as needed, whereas broader concepts and principles need to be taught and modeled repeatedly. Of course, they need to be taught and modeled by people who have already learned and internalized them, and such people are in short supply in medicine.

But what I remember most vividly were the moments of unchecked ableism, tiny little comments made by lecturers and heard by lecturees that went unnoticed as problems and sometimes unnoticed altogether. The term “imbecile” was used in a textbook revised weeks before our class began, and did
I mention that I entered medical school in 2003, not 1933? The term “miraculous” was used to describe cochlear implants 5 times in one year (every time the cochlea was mentioned) without any mention of their controversy in the Deaf community or in fact any mention of the existence of the Deaf community. A patient history noted that “the poor guy was confined to a wheelchair” and children with spina bifida were “an expensive and tragic health hazard.” Cerebral palsy, in turn, was “absolutely devastating.” Multiple times we were told, casually, that people with a certain degree of vision loss couldn’t “function.” We were exhorted not to memorize lists of medication as we were not “autistic children who were idiot savants.”

I complained. I complained politely to individual lecturers, in person or via e-mail. Occasionally, my concerns were heard by someone who took them to heart. More often I was told that I was being overly sensitive. I complained politely, then vehemently, to people in charge of curriculum, who also thought that I was taking these remarks too personally. I tried to advocate for improved education about disabilities and was told there simply wasn’t time in the curriculum.

Years passed. A decade. I have completed my training as a pediatrician specializing in the care of children with developmental disabilities. I’m still disabled, myself. I find some other health care professionals, some disabled and some not, who believe that health care trainees should be better taught about disability.

Over and over, they describe approaching administration, curriculum committees, colleagues, asking that disability be included. They point out, as I often do, that disability affects approximately 20% of people, so education on disability will be relevant to a minimum of 20% of patients in any branch of medicine, before factoring in any medical needs related to disability, of which there might be a few. We frame it as a cultural competency issue, a communication issue, a professionalism issue, a health-care disparity issue.

And over and over, they receive the same response: there isn’t time.

We have to cover all of anatomy, they are told. And all of pharmacology. And all of pathology. We cover disabilities in there, anyway, right? Like in pathology of the eye we talk about people becoming blind if we can’t stop it, and I know we cover Down Syndrome in genetics and schizophrenia in psych? We have to cover communication and professionalism, and these other groups are insisting we cover women’s health, and health care disparities for racial minority groups and then we just got a memo that we have to cover health for LGBT people. There isn’t time.

We offer suggestions. Perhaps, disability can be included in small ways in the curriculum you have already. If you are discussing communication with patients who do not speak English, include information on communication with Deaf patients. If you are giving your students a case to discuss about gallstones, give the hypothetical patient bipolar disorder instead of having “no previous medical history.” Include wheelchair-users in your group of “standardized patients” on whom your students practice interview and exam skills.

As I said earlier, teaching conceptually may be a helpful option. Instead of teaching about specific conditions as they relate to concepts in genetics or pathology or organ systems, consider reducing the amount of zebras (rare conditions) students are asked to commit to memory in favor of workshops clustered on a theme. I actually have a dream of a medical school unit on “conditions managed in part or whole by dietary interventions.” Students could learn about diabetes in the context of counting carbohydrates, celiac disease in the context of gluten-free and intestinal pathology, coronary heart disease in the context of the Mediterranean diet, Crohns in the context of a low-fiber diet and intractable seizure disorders in the context of the ketogenic diet. Actual patients could do some of the teaching.

Of course, conceptual teaching about disability is only possible if the teachers know how to teach it. They know a lot about eye pathology already. They would have to be taught about the accuracy or lack thereof of statements they may make about blindness. Students tend to believe what they’re told, so they can easily internalize negative attitudes about disability that are taught to them with the same conviction as the stages in fetal brain development.

Perhaps we should start by teaching the teachers what NOT to say. Fighting ablism isn’t only, or even mostly about a list of words to avoid, but it could be a quick way to prevent medical students from being exposed to them in their lectures. Nuances can come later, perhaps when this generation of medical students become the teachers in a few years.

And if all the negatives, the myths, the misconceptions taught about disability were simply removed? Just imagine how much space would miraculously open up in the curriculum. Why a minute here and a minute there might free up several precious hours!

Or, as my father’s Latin teacher was famous for saying, “If you erase all the wrong stuff, you’ll have plenty of room.”
Darmok and the Developmental Pediatrician at Tenagra

Quick, what am I talking about here?

Trekies, hold on.

Non-Trekies, Darmok was an episode of Star Trek, The Next Generation. Briefly, our ever-diplomatic Captain Picard finds himself on a dangerous planet with a Tamarian, a species they had never met before. Due to a lovely (plot) device, the Universal Translator, the Captain can understand the words used by his companion. However, translating statements such as “Darmok and Jalad at Tenagra” and “Shaka, when the walls fell,” gave little hint to meaning. Eventually, the smart people and androids on the ship did some 24th century googling and realized these lines referenced myths well known to Tamarians.

“If I were to say to you, ‘Juliet on her balcony.’. . .”If I didn’t know who Juliet was or what she was doing on that balcony, the image alone wouldn’t have any meaning.”

Even more eventually, our amateur archeologist captain found a way to connect by telling the story of Gilgamesh. Then bad things happened, because, see dangerous planet, but the connection was forged and we made first contact with the Tamarians and can now tell the story of Picard and Dathon at El-Adrel.

I’ve always had mixed feelings about the episode, and in particular one plot hole large enough to drive a starship through: one cannot communicate solely in mythological and historical references without having first developed a way to communicate those myths and history to one another. But overall I find the story compelling.

So why has Darmok been on my mind of late?

Darmok sprung to mind recently as a response to the description of echolalia as “non-functional.”

Echolalia is the practice of repeating other people’s words, phrases or sentences. It is associated with autism. Some non-autistic people use echolalia. Most children go through an echoing phase early in language development. And there are autistic people who don’t use echolalia. But the association with autism is real.

And, like so many things associated with autism, it is generally described and depicted as a bad thing by non-autistic professionals in autismland.

I received a note once from a teacher about a patient, amid a laundry list of frustrations “X’s speech is entirely echolalic.”

A) Actually, it wasn’t. I knew this from seeing the child twice a year. He didn’t know this from interacting with the child for 6 hours a day?
B) So what if it was?

I do my best work when angry and the recurrent, unquestioned description of echolalia as “non-functional” makes me angry. So I started making a list of possible “functions” for echolalia, a non-exhaustive list as I am wont to say.

1) I like the way this word sounds.
2) Saying something over and over is really calming
3) I associate this word/these words with a time that I felt good, and I want to remember that feeling now
4) I know you want me to say some words now but I don’t understand the question
5) I understand the question but I don’t know the answer
6) I might be able to answer that question with enough time but you clearly want a word answer now.
7) I associate these words with a particular situation or feeling so I am using it as shorthand. The association is clear in my mind but possibly not in yours. That’s when I started thinking about Darmok. Instead of saying, “I’m scared,” someone might quote a line from a TV episode where their favorite character was scared. The line may or may not immediately be recognizable as being about fear at all.
8) I’m anxious/stressed/sensory overloaded and so I am falling back on memorized words because I can access them quickly from my mental rolodex of phrases. I’m so good at picking out words so you might not recognize they are directly from a song lyric or something my boyfriend said yesterday when we discussed this situation.
9) I’m not sure how to read this social situation, but I heard someone else answer this question earlier and their answer seemed acceptable. So I am going to repeat their answer and hope it’s acceptable for me too.

Note that some of these “functions” have communicative intent and some don’t. Note also that these situations span a spectrum of situations, and I use the word “spectrum” here deliberately. Note that one or another function could apply to the same person at different times, even if the words being used are exactly the same. Also note that many of these functions can and are used by people who ALSO speak without echolalia some of the time.

As someone who does not dismiss echolalia as non-functional badness, I have had the pleasure also of watching some children use echolalia as an atypical mode of developing spontaneous spoken language.

Typical children generally learn single words first, often nouns: Mama. Ball. Milk.
Then they learn some other single words: Up. Go. More.
Then they start combining the words into phrases. Daddy, up. More cookie. Bye bye plane.
Then they start developing novel sentences, meaning that the person can build a grammatical sentence to convey meaning without having heard that exact sentence before. “I want soda” may be spoken by an individual who know what “I want” means and just learned the word “soda.”

Some autistic people also develop spoken language this way, either at a typical or later age.

Other autistic people develop language in the reverse order. Instead of building up sentences from single words, they learn whole sentences first and use them, intact. These may be things spoken at home or heard in favorite movies.
Over time, they start swapping out elements. They may put in their own name in place of that of a character. They may change tense. They may change pronouns. Gradually, they break learnt phrases and sentences down into smaller and smaller components and learn to recombine them.

Eventually, much of this spoken language may not be recognizable as echolalia.

Which. . . doesn’t make it better.

Most people find spontaneous speech easier and faster than any other method of communication, including typing, using a communication device or repeating learnt phrases. I think of this sort of how most people find walking the easiest and fastest method to get from one point to another nearby point. Spontaneous speech can come in handy in situations where there is no memorized response at hand or when the only available conversation partners wouldn’t understand a memorized statement. I don’t see any harm in helping people develop more language, including non-echoed language, as a tool to use when able, just as I don’t see any harm in helping people develop more walking skills, as a tool to use when able. That doesn’t mean I think we should hold non-echoed speech (or non-wheelchair travel) up as “better” than the alternative, particularly for people who do not find them easier or faster.

And we certainly shouldn’t throw disparaging terms at people who are communicating in the way that comes most naturally to them. We especially shouldn’t throw disparaging terms at people who would prefer to communicate in the most comfortable way with frequent communication partners, such as family and teachers.

After all, was the problem at El-Adrel that Dathon could only communicate in mythological references? Or that Picard had never learned to communicate this way? Or that we need to tie the Universal Translator in with the Interplanetary Folklore Database?

But the episode gives me some hope. In the 24th Century, no one on the Enterprise called Dathon’s dialogue, “non-functional”
I’ve been thinking a lot about autism and about acceptance, lately. In April, the neurodiversity activist’s fancy lightly turns to thoughts of acceptance. Sorry, Tennyson. And with “acceptance,” I’ve free-associated into a place I don’t usually go, a prayer. It’s commonly associated with AA and attributed to Reinhold Niebuhr.

“God, grant me the serenity to accept the things I cannot change
The courage to change the things I can
And the wisdom to know the difference.”

My workplace is having a dress down day tomorrow, where we are encourage to wear blue. For World Autism Day and Autism Awareness. My workplace. Where I have been an employee for less than a day.

I have some choices. (I often tell my families, there are always choices, and sometimes it helps to list them, even the bad choices, when it seems there is only one option.)

I can wear blue. I can wear pink or green or yellow and stay out of it entirely. I can wear red, in honor of Walk In Red, an Autistic response to Light It Up Blue. I can wear whatever I’m going to wear and not say anything else. I can bring in my Tone It Down Taupe ribbon and tape it up in my office. I can bring a print out explaining the Walk In Red campaign and the Tone It Down Taupe campaign and tape them up in my office. I can explain my choices and these posters if asked about them. I can write a letter to my boss of less than 24 hours telling him all the problems with Light It Up Blue. I can go into the office of the person who suggested we all wear blue with a handful of Walk In Red flyers. I can hand out taupe ribbon and googly eyes to everyone I see all day. I can out myself as Autistic. I can continue to be openly disabled and a neurodiversity proponent without openly declaring my neurotype.

I cannot change my workplace tomorrow. I cannot make my department head stop recommending dietary interventions for the immune dysfunction he is finding when he runs lab tests on his autistic patients tomorrow. I cannot make the school down the hall stop using ABA tomorrow. I cannot change the dress-down day wardrobe theme between now and tomorrow.

And I accept that.

Over the almost-4 years I worked at my last job, I was not able to get anyone to stop recommending ABA therapy or stop using functioning labels. I did get some people to reconsider some of their language choices. I did get some people to remember that people with disabilities are often part of the conversation when we are having professional conversations about people with disabilities. I did get some people to recommend some books written by autistics and some books that were written by neurotypicals but are respectful of autistics. People starting using the term “typical” more and “normal” less.

And that was a job where I was in a training program, at the bottom of the hierarchy, for 3 of the almost-4 years. There are things I can change. Slowly.

“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it’s the only thing that ever has.” That’s Margaret Mead.

I’ve said it before, here and elsewhere, that I know I'm a moderate because the establishment sees me as a flaming radical, while the radicals view me as an establishment apologist.

The radical thing to do would be to go in tomorrow and try to shake up the establishment. Wisdom would tell me that many things might change as a result, but the establishment wouldn’t be one of them.

When I accepted (that word again) this job, it was in the hopes I was in it for the long haul. Because it seemed like a place that would let me practice developmental pediatrics with my neurodiversity approach. Even though they are practicing biomedicine to one side of me and ABA to the other.

So I am going to try to change the things I can. Slowly. I am wearing red tomorrow. I am posting a Walk In Red flier and a Tone It Down Taupe ribbon in my office. I will explain my perspective if anyone asks, that the Autistic community rejects Light It Up Blue because it comes from a parent and professional cure-based model, and in support of the Autistic community I am publicizing alternatives. I will point out that those of us who work with children with any condition or disability owe it to our patients and their families to know the perspectives of adults with the same condition or disability, especially when these perspectives differ from the parent/professional party line. And over the next few months, I will donate copies of Loud Hands and other autistic-authored books to the hospital library which is open to families. This time next year, I hope to be in a position to suggest we not support Light It Up Blue.

Happy Autism Wisdom Month.
A couple of years ago, I presented an article for our department Journal Club about social skills training for autistic adults. It was a reasonable article and study, as these things go, full of the usual neurotypical centrism such as expecting social skills training to change parent/caregiver measures of autistic traits. It did include some self-report measures and the curriculum described in the study wasn’t bad, as these things go.

One phrase has stuck in my mind as being especially insightful. Part of the curriculum included instructing the caregivers in coaching/assisting their adult children “while promoting or maintaining their social independence. Caregivers learned that managing this balance partially involves addressing the anxious behaviors, characterized by low novelty- and reward-seeking and high harm avoidance that many adults with ASD possess.”(Gantman, 2012)

“Low Novelty-seeking”

Every so often in my reading, I find myself staring at my own autobiography. Low novelty-seeking indeed.

Chiam Potok starts off his novel, In the Beginning with “all beginnings are hard,” which is I believe in turn a quote from the Talmud.

I identify with that one as well.

Here, then, are some highlights and low-lights of my beginning in Pittsburgh, in no particular order.

The ending in South Carolina ended with staying up until 2 AM packing, followed by a few hours sleep before getting up to beat the movers last Thursday. Before Thursday, I had been told my furniture would arrive sometime between Friday and Tuesday. On Thursday I was told they would deliver Friday.

I woke at 6 on Friday to make my flight to Pittsburgh. I called between flights to learn my furniture had been delayed due to a delayed rendez-vous with a truck from Florida. It would arrive Saturday. I left it that they would be in touch.

The movers called at 6:45 AM Saturday to say they were there with my furniture. I wasn’t there. It was a lovely 7AM walk from the hotel.

I spent most of Sunday sleeping. Also Tuesday.

I have unpacked my kitchen and opened a lot of non-kitchen boxes to find specific items contained where-in, but have not unpacked or organized anything else. That will start tomorrow.

It took me approximately 15 minutes to figure out how to open my washer/drier. The drier had directions inside it about use. The washer did not. I’m still not convinced I am using it correctly but the clothes seem clean and there is no water dripping anywhere.

It took me a few days to use my stove. I still haven’t tried the oven. I am less afraid of the oven because it appears to be a reasonably regular oven. The stove is one of those ceramic flat-top things. First I didn’t have anything to cook on it. Then I bought eggs but no butter or oil. Then I bought butter but the thing wouldn’t turn on. Fortunately I have two microwaves and a crock-pot. Finally I found the stove’s circuits were off in the circuit box and turned them on. I had edible, if uninspired, quesadillas last night.

I have walked a minimum of 1.5 miles a day since my arrival, with the exception of Tuesday. My insulin requirement is going way down due to the substantial increase in exercise. I have been turning my pump down to compensate. My insulin dose is going way up as I take extra insulin to compensate for the over-compensation.

My foot/feet hurt. I say foot/feet because it’s mostly the left but it’s enough both that I don’t think I fractured anything. I suspect its tendinitis, or some other repetitive stress itis. I think it’s the same thing that caused me foot pain my sophomore year of college, that I attributed at the time to the shoes I was wearing. Usually if I suddenly increase my amount of walking or dancing, I get more shin pain so who knows. It’s been better since I gave it rest and NSAIDs on Tuesday.

On Monday I was fingerprinted for the FBI at a UPS store. The line for fingerprinting had more people in it than the line for packing and shipping. This is my third time fingerprinted. I can’t start work until the results come back, which may take 3-4 weeks. I didn’t find out about the fingerprinting requirement until March 12 and couldn’t do anything about it outside of PA.

On Tuesday I had a health screening for work where the doctor cared more about back pain (which I don’t have) and back surgery (which I have never had) than any part of my body that has actual pain or functional limitations. He did say that sitting on my knees would lead the need for replacement but ignored the actual hip problems I currently have. I don’t need hip replacements, either, but actual joint problems should trump theoretical ones when assessing fitness to work. He also gave me some advice for my diabetes which may have been possibly worth considering for someone with Type 2 diabetes but was completely ill-advised for an underweight Type 1 who has tested negative for Celiac. All he knew about my diabetes was that I have an insulin pump, not anything about my related health status or control.

I think I had titers drawn for chicken pox, which may present a problem. (http://nightengalesknd.livejournal.com/2006/01/05/) Hopefully, re-vaccination will be a sufficient solution. Hopefully they won’t hold off letting me start work until I get re-vaccinated and re-titred. I also had a blood test for TB, which may hopefully mean not needing a PPD. I actually enrolled in a study in 2007 to see if blood tests were as good or better than PPDs, and I thought I was told the study had not shown the blood test to be effective. I was disappointed as I appear to be mildly allergic to the PPDs and don’t relish annual ones for the next 42 years.

I definitely can’t start work until my drug test comes back. I think it generally takes less time than the fingerprinting. This is my fourth time being drug tested and I seem to be getting somewhat better at it. However I would like very much not to ever need drug testing again, thank you.

On scheduling the health screen I was told there would be lifting testing, which sent me back to my contact at work to ask what the lifting requirements were in the essential job function for a developmental pediatrician (hint, it SHOULD be NONE) and was told it was less than 10lbs. Then at the screening I didn’t have to lift anything. Apparently they don’t know until the day-of who has to lift and who doesn’t, so they tell everyone they do. Because that couldn’t possibly create any problems for someone.

My internet got hooked up yesterday. The first ISP I contacted wouldn’t give me service unless I gave them two telephone numbers. This was the first I heard that internet providers required emergency contact information. They promised not to call the second number. I said they should then put in their own number. My current ISP did a reasonable job arranging and setting up service. They also called me at least 6 unnecessary times related to this. Call #5, I asked them to stop calling me. Call #6 was an automated survey about an hour after Call #5.

I have a landline again. (The irony being I NOW have two telephone numbers.) After a 4 year experiment with only cell-phone service, I’m going to try to move my cell-phone back into the realm of something to use when out. This way I can give my landline number to stores and companies and not be bothered by calls on my cell-phone during the work day. Also, as much as I hate talking on the phone, I hate talking on a cell-phone more.

I took my board exam today. I maybe should have studied more. We aren’t supposed to discuss content so I won’t except to say that Freud has no clinical relevance in my practice. I took the bus out yesterday to make sure I knew how to find the exam. I’m glad I did because it took a little finding. So in the past two days I have made two hour-plus bus forays to the suburbs where my cousins live. Next time I’m out there, I want to see them.

I locked myself out of my apartment at 7:30 this AM on the way to the board exam. As forgetful as I am and as often as I am always walking off without stuff, this is actually the first time in over a decade I have done that.

Of the disadvantages that had occurred to me about not having carpeting in the living room, I didn’t consider that my ottoman would slide across the floor every time I put my feet on it. First intervention will be to weight it down. Second intervention will be to try to fashion some sort of breaking mechanism.

The only way I have figured out so far to drain my bathtub is to put a comb in the drainer. It doesn’t appear to stay open on its own using methods used on prior bathtub drains, and I can’t identify any other household object that is the right size and waterproof.

So far, within reasonable walking distance from home I have found a Target, Trader Joe’s, Staples, US Post Office, bicycle store and CVS, in addition to the bank and Giant Eagle I had already located. So far, within reasonable walking distance from work I have found a public library branch and approximately 14 bagel shops.

The walk from from work to home is about 15-20 minutes, mostly downhill, which will be simply lovely in good weather. The walk from home to work is closer to 20 minutes, mostly uphill, and slightly less lovely but still quite do-able. The bus ride is <5 minutes, and the buses are infrequent enough to make walking the faster option in many cases.

I have attended an ASAN meeting. I told the other attendees I had just moved to Pittsburgh two days before but needed something scheduled and structured. They understood. This was apparently the second meeting of the local chapter. The gender breakdown of the attendees, while not surprising to me, was not what would have been predicted given the published epidemiology for autism. There are going to be limits of what I can do, given my professional position, such as publicly picket organizations I would dearly like to publicly picket. However I am going to do what I can, which may be largely ghostwriting. An early order of business is to address a local school district which has an info page on autism, stating, “Autism is a word that strikes fear into the hearts of all parents.”

That. . .wasn’t quite the interplay between autism and anxiety I had in mind.
“Label your cans, not your kids.”

I hear this a bunch, generally from parents. They don’t want to “label” their child. They don’t want school to “label” their child. They don’t want school to see the label and pigeonhole their child into classes, programs, expectations based on the label. They don’t want the child using his or her label as an excuse for laziness.

And some of these worries are founded. There are studies showing that teachers treat students labeled “high achieving” and “low achieving” differently, in ways that become self-fulfilling prophecies. Expectations matter, and we should always be cautious not to place artificially low (or high) expectations on a student based on prior knowledge or labels such as “ADHD” or “gifted” or “dyslexic” or “behavior problem.”

But it can be enormously useful for a teacher to know that a specific student has difficulty with organization, or strong math skills, or can’t read the third grade textbook you are about to hand him, or struggles with emotional regulation and should be permitted a break if she asks for one. We can, and should, provide this information on an individual basis, with the specifics relevant to each child.

But that doesn’t make the larger diagnostic or descriptive categories meaningless.

Why do we label cans, anyway?

So people know what’s inside before opening them.

So maybe diagnostic labels aren’t exactly like can labels. Maybe they are more like the signs on the aisles that point you in a particular direction. Canned vegetables here. Canned and dried fruit there. Produce on one end, frozen food on the other. If you are looking for canned, diced, stewed tomatoes, these signs can help you find the right shelf. Once there, you can treat the Del Monte canned, diced, stewed tomatoes like the individual they are.

We all wear multiple labels, and society has labeled some of them as negative. Some labels are objectively defined, some are subjectively applied from without and some arise only after long introspection from within. Tall is a label. Female is a label. Female-identified-assigned-male-at-birth is also a label. Aromantic asexual. Secular Jew. Asian-American. Extrovert. Feminist. Parent. Millennial. No person is defined by any one of their labels or even by all their labels collectively. A can of tomatoes isn’t defined by its label. The label merely describes what’s in the can.

Consider what our Del Monte canned, diced, stewed tomatoes have in common with the Publix brand of canned, diced stewed tomatoes. What are their similarities with and differences from Del Monte canned, whole, stewed tomatoes? Are they more like salsa, which is generally jarred, not canned, but in which the tomatoes are generally diced? What about fresh tomatoes? What is their relationship with the broader category of botanical fruits that are culinary treated as vegetables? Does our canned, diced tomato have more in common with canned, diced peaches which are also fruits, than with the canned, diced mushrooms which are on the same shelf?

That’s the intersectionality portion of the program, folks.

But let’s go back to children with diagnosable disabilities. And let’s not get them evaluated for diagnostic labels, or let’s get them evaluated but not tell their teachers, or not tell the children themselves. And let’s tell ourselves we’re doing this to avoid labeling them.

The problem with this method is that it does not leave children unlabeled. They get labels and plenty of them. “Lazy,” say their teachers. “Attention-seeking.” “Doesn’t get along with her peers.” “Doesn’t work to his potential.” They get labeled “bad” and “behavior problems,” and nothing about the process of applying these labels helps them to be “good” or to exhibit less disruptive behavior. Meanwhile their classmates, those folks labeled “peers,” apply some labels of their own. Children are labeled “weird” and “stupid” and “retarded” and “spaz” and “slow” and “mean” and “sped.” Nothing about this process helps children learn to read or make friends or get left alone, if that is what they desire, or get better at keeping their hands to themselves during circle time.

But children hear these labels and internalize them. And since no one gives them any information to the contrary, they assume that they are “bad” and “stupid” and all the rest. And they know they aren’t “normal” because if they were they would be able to read and sit still and no one will tell them any differently about themselves, so they learn not to trust the adults at home, at school, at therapy.

Adults like to believe that lack of formal diagnostic labels is somehow protective against teasing and bullying. I am admittedly an N of 1, but it sure didn’t help me any.

“Why do you type?”
“Because I can’t write”
“Why can’t you write?”
“I don’t know.”

“Why do you sit on your knees?”
“Because I can’t sit cross-legged”
“Why not?”
“Because I topple over backwards.”
“Why?”
“I don’t know.”

An answer of “cerebral palsy” might not have staved off the list of questions, but it would have given me a place beyond a shrug from which to formulate an answer. I am convinced that the 80’s mantra of “not labeling children” is what kept me from an accurate diagnosis at a sensible age.

I have read narratives of children with disabilities who grow up assuming they will die, because they never met any adults like them and assumed that was because children like them died before adulthood. Or were institutionalized. Mel Baggs and Julia Bascom , among others, have written about the damage this can cause.

“I don’t want him using it as an excuse – ‘Oh I can’t do this, I’m autistic’” a parent tells me. I don’t either. Unless, of course, it is something he truly can’t do, in which case the student gets an A for Advocacy. And if it is something he can do, but it’s hard or he just doesn’t want to, he’s going to use something as a reason, something probably less accurate and descriptive, and there’s going to be a consequence, or there isn’t. A kid who is going to try to get out of things isn’t going to NOT try this because he hasn’t got a diagnosis, or only try it because he does. All we’ve done by withholding the label is denying him the language used to describe his inability, or difficulty, or difference.

I think I’ve written before about the two types of limits related to disability: actual and imposed. Actual limitations are the actual functional impairments created by disability. Part of self-advocacy is recognizing these, and applying some combination of work-arounds, adaptations, accommodations and acceptances. It’s easier to do this with an accurate label. One can understand the physical or psychological mechanism, or one’s parents and teachers and therapists can. One can find others who have traveled a similar (never the same) road before, and learn from their experiences, and find community.

Imposed limitations are those created in response to disability. Some take the form, “if you can’t X than you can’t Y.” People with disabilities need not apply. Children with autism aren’t eligible for this gifted program. If the child with ADHD forgets his homework, he has to stay in at recess because that’s our policy, even though he needs to run around to regulate. And yes, some are created ourselves, and some might call these excuses. Imposed limitations are a problem, but the solution is not to throw diagnoses out with the bathwater.

The solution is to label these imposed limitations for what they are – ableism – and to confront them accordingly. It’s a lot easier to confront mis-conceptions and prejudices related to disability when you have a concept of disability – your own, or that of your child, student, patient or client – in the first place.

Chavisory wrote this great piece for Autistic Speaking Day a few years back, You should tell your kids that they’re autistic. I’ve printed it out for a few families. Hopefully they at least read it and considered her words.

So yes, let’s label our children, if labels apply. Let’s use the labels descriptively, not proscriptively. Let’s teach them about themselves, about their own strengths and challenges, using language that is both accurate and accessible to them. Let’s encourage them, and those adults who support them, to use labels as a starting point rather than an ending point.

Now that I know it’s a can of tomatoes, I can make some amazing chili. Imagine if it just sat on the shelf, trying and forever failing to be a can of peas?
I am moving in approximately 7 weeks.

No, I don't have a specific date. No, I don't have a specific plan. No, I don't know what I am doing with my car, and right now I don't want to talk about any of that. Any question asked along those lines has already been answered with "I don't know" and no further answer will be forthcoming until I do know, and I'll let you know when that is.

I want to talk about my kitchen.

I am looking at a kitchen at once full of food and seemingly devoid of anything to make for dinner or pack as lunch. The kitchen is rooted in the past, food previously purchased, and looking towards the future, when I have to close it and clean it and survive on peanut butter and cheese and crackers and eating out until I can move and open a kitchen again.

I have to go shopping to buy food to eat this week, and next week, and the week after until the kitchen is closed. I don't know what to buy. I don't know how much to buy.

At the one end are the rapidly consumed items. A half-gallon of milk lasts approximately a week, so I can, must buy milk. A large box of Cheerios lasts about 2 weeks, so there will be more purchases of Cheerios. Aside from those items, I have never paid attention to the frequency at which I need to purchase specific foods. I will buy more cheese, as I eat a lot of cheese, but probably only one type of cheese rather than the several I like to have lying around. I will need produce, of course. I may need another dozen eggs.

At the other end are the pantry staples. I may end up packing a box of non-perishables, not a bad way to seed my new kitchen, since I will not have a car for an initial bulk buying trip. There is no reason that some beans, and barley and flour in a canister, some dried fruit and even some uneaten crackers can't make the trip. If I am packing canisters anyway, the innermost ones might as well travel full.

I'm good with extremes.

In the middle lies everything else. I have most of a bottle of olive oil, and not much of a bottle of canola oil, but at this point it doesn't make sense to buy more canola oil. I need to do meal planning around what I have. I should eat tuna, which would use up tuna. I should make chili, which would use some beans and canned tomatoes. I predict a lot of oatmeal in my immediate future. The freezer is full of homemade broth I should use in some fashion. Can I finish the soy sauce? Can I finish the jam? I may need more rice to finish the soy sauce. I may need more bread to finish the jam. I will not buy more soy sauce for the more rice, or more bread for the more jam.

I may give some things to friends, the sort of friends to whom one can offer half a jar of apple butter or an opened bottle of mustard. I'm not sure who I know locally who would like half a jar of chutney or hoisin sauce. There is talk of throwing me a good-bye potluck and I may bring previously owned condiments, free to a good home.

What to pack for lunch tomorrow? What to make for dinner? What to buy at the store besides milk and Cheerios and apples?

I am re-re-re-reading one of my favorite cookbooks, Arthur Schwartz' "What to cook when you think there's nothing in the house to eat?" I suspect I will be cooking from it a lot in the coming weeks. I wish the author would write a sequel, "What to buy when you are cooking with nothing in the house to eat?"


Some might call it indecision paralysis. I might be one of those some.

My initial plan for apartment hunting was to go to a group of apartments near to each other and to see a bunch, then go to another group, and another. There seemed to be three distinct clusters, one south of my soon-to-be workplace, one north and one northwest, with some outliers. I started to call places to see what they had available for March, thinking to narrow down the list to a visitable level, only to find they could only show me apartments by appointment. This had not been my experience in the past when looking at apartment buildings/complexes. So I scaled down, way down, because I had to figure out time and space.

I've seen 3, one of which I've ruled out, and have 1 or 2 more to see on Monday. (I have an appointment with one, and I THINK the guy at the one across the street said I could walk in, but I'm not convinced that he or I understood a word the other was saying.) Unless something Monday blows me away, I plan to go with one of the two I saw yesterday. And of course my brain is a mass of pros and cons, complicated by the fact that one is, on paper, the better choice and I am strongly leaning towards the other.

Things I want include not having to climb stairs, access to laundry without leaving the floor (in apt is better), a good kitchen, closet space and a way to get my medical supplies delivered. They shouldn't need a signature according to the senders but sometimes FedEx/UPS get a bee in their bonnets they need one.

Location is identical. They are on the same block, about 0.8 mile north of my soon-to-be workplace. They are 2 blocks north of a bus I can take to work. They are 3 blocks south of a grocery store and a bank with Saturday hours, and there is a Target just beyond those.

Apartment A is in a glitzier building. It is handsome on the outside. It is decorated on the inside. It has a doorman. It has a garageman. You enter the building and there is a lobby area and a flight of 6 steps leading up to the first floor. The doorman is there. He signs for packages if they arrive needing signatures. There is an elevator from the first floor to the floors with the apartment. The elevator goes to the basement where there is an exercise room and a personal trainer and a community room. And the elevator goes to the garage. To get out of the garage without a car, one can let onself out of the garage door. To get into the garage with a car, one gets a garage remote opener button. To get into the garage without a car, one goes to the garage and rings a bell and the garageman lets one in. One can't get a garage remote opener button without a car. The idea of having to be let into my own building to walk in without stairs (while car people and people who don't need to avoid stairs do NOT need to be let in) rankles.

Apartment B is in a less glitzy building but it is new and well kept. There are both stairs and a ramp to the front door, although the ramp did have some snow on it. There is a front door with an intercom system. If a package arrives that doesn't need a signature, the office can open the door remotely so the package can be left inside. This doesn't help with packages requiring signatures. There is no lobby, just an entryway and a hall to the rest of the building and a mailroom in the basement. There is no one managing the building on site. The management company is family owned. There is an elevator that goes to all the floors including the garage floor.

Apartment A is larger. The bedrooms are carpeted although the living room is not. There is a kitchen in a room. It is large. It doesn't have a ton of counter space but there is room to bring in a table or other auxiliary counter equivalent. It is a closed kitchen, meaning there are walls between the kitchen and the rest of the living/dining area except where the door is. It doesn't have a garbage disposal. There are no washers or dryers in the apartment but there are some on each floor. There is a fair amount of closet space. Heat is included and can be controlled.

Apartment B is a little smaller. It has the same number of rooms but they are slightly smaller. It is a little less bright. None of the rooms are carpeted. The kitchen has an open design with an island. I like open kitchens because I live alone and cook while listening to TV. There is a lot of counter space and cabinet space. It has a garbage disposal. It has a washer/dryer in the apartment. There is less closet space but there is enough room by the washer/dryer to put in shelves and enough room in one of the bathrooms to use as storage too. Heat is under electricity and can be controlled.

Apartment B is more expensive but both are within my budget.

Pro con pro con pro con pro con pro con

Lately it seems that newer and shinier things are less accessible to me than their older counterparts. There are limits, of course. Computers are more accessible than manual typewriters or fountain pens. My dishwasher is more accessible than a stream and a rock and soaproot. But I'm thinking about things that I used to be able to use and now can't.

The proliferation of wheeled chairs is one of them. Not wheelchairs, which are still as financially out of reach for most people as ever and which I don't currently need. Besides, wheelchairs have brakes. No, I'm talking about chairs in conference rooms that have wheels on the bottom without brakes. Some rooms have a reserve of wheel-less chairs away from the table and I can manifest a switch. Others don't, and I am stuck with a choice of sitting on the floor, standing or spending more of my effort maintaining my balance than I am participating in the topic at hand. While I did famously fall from a doctor wheelie stool during med school, I don't recall the problem outside of clinical areas even 5 years ago. In fact, it seems the more recently a space has been renovated, the harder it is to find a wheel-less chair.

Forgetting about all my other issues with driving, there are now fewer and fewer cars I can drive. Or rather, there are fewer and fewer cars I can shift out of park. I used to do well with cars where the gearshift is on the steering column. Now most cars have a gearshift between the seats where you have to push a button and pull the lever at the same time. Exerting pressure in two directions at once is pretty much the biggest thing I can't do. I had to get an adaptive do-hickey for my current car. While I am happy that I am soon going to de-car-ify my life for my daily needs, it would be nice to be able to rent a car on occasion, such as when traveling. But the rental car place, while it can guarantee a car of a specific size, which is immaterial to me, cannot guarantee a particular make or model where I can work the gearshift. And my adaptive do-hickey may or may not fit other cars.

The biggest problem of all is the advent of the touch screen. They are everywhere. The last time I went to vote, there were touchscreens. I have been voting independently for years. The lever method, the push button method and even the hugely archaic stylus hanging chad method were accessible to me. This time I managed to vote for my chosen candidates but needed assistance to vote on the ballot measures. We did try the accessibility feature on the machine, which did activate a button, but that turned out to disable the written ballot and would have required me to use an audio ballot, something I was not prepared to do on the spot. I understand they are more accessible to many people, but I wish there were still options, such as enabling the button without turning off the written ballot.

I can tap, on a limited basis, if I can anchor most of my hand on a non-screen surface. This is how I program my GPS. I can just about manage to pay for my wares in the grocery store or pharmacy and work an ATM. It's certainly slower than any keyboard, mouse or trackpad navigation method, but it is functional. But I can't hit targets in the middle of a screen, I can't scroll, I can't flick and swish or whatever needs to be done to embiggen items, and I can't use any pen or stylus device that I have yet tried. It took me 20 minutes to produce an electronic signature for my current job. Vertical surfaces are even worse than horizontal ones. It comes down to the motion/exerting pressure in 2 directions at once thing again. I can use a trackpad because I am either moving or tapping, never both at once. This is causing problems at my pharmacy, at the CVS minute clinic, and at airport check-in kiosks, all of which were, by the way, put into place after the Americans with Disabilities Act that guarantees me access to goods and services.

And it's about to start causing problems at work.

My new work is going to issue me a smartphone. I am going to need to. . . well I don't know exactly what I am going to need to be able to do on it, but I assume that answering it and making calls from it would be a bare minimum. Looking up numbers, I'm sure. Manipulating e-mail, possibly. Text messaging, perhaps? (My current phone, and I, do not text.) They seem open to issuing me something I can actually use, but I haven't yet talked with anyone in IT about what's on offer, and I'm not even tech savvy enough to ask. I am trying to set up a meeting for next week.

So. . . what's out there? The two options which seem possibilities are finding a phone with a small built in keyboard, which I am told do exist in the universe, or getting a regular phone and then acquiring a portable wireless keyboard to make it go. I know there are folding keyboards out there but don't know if they can talk to the current phones. I actually think the best case scenario would be a combination of these two features, one for making the phone go on a basic level and one for more prolonged interactions. That's about what I did with my PDA's onscreen keyboard and folding keyboard. I would be happy to buy a separate keyboard myself if needed.

I'm probably more concerned answering the phone than anything else, because all around me I see people unlocking their phones by swiping on the screen across a batch of numbers and. . . I don't think I can do that. So I would likely need something that can be unlocked answered with a button that is on the phone, even if I use a larger keyboard to do most navigating and text-based communications.

Voice navigation is likely to be offered but I'm skeptical of it as a solution. Voice recognition software doesn't seem to like me much when I have to work phone trees. Frankly, the feeling is mutual. I used to type out a script before I went to dictate my discharge summaries. Also, if the phone is for work, it would be harder to maintain patient privacy if I have to talk to my phone to get it to tell me anything.

People understand needing wheelchair access. They may not provide it, but they generally understand the things that are going to be a barrier, like steps. People don't seem to understand phone access or the idea that not everyone has and can use a smartphone. And I am going to have to navigate this before I even get started at the actual job that I actually can do, with people who don't know me. And I don't even know enough about the technology involved to offer suggestions or ask the right questions.

So. . . what is out there? What do I ask for? What buzzwords do I need? So far I can say "smart phone," "touch screen," "keyboard," "wireless" "stylus" and "no, my hands aren't going to do that."
I’ve loved spreadsheets for nearly 30 years. We got our first computer in 1986, when I was nine. It had a monochrome monitor for word processing and spreadsheets, and a color monitor for games and painting programs. It also had 2 floppy disk drives (one for the program disk, one for the data disk) and a dot matrix printer. Word processing was for homework, and it was a lifesaver. Everything else was (for me) for fun. I loved Paint and Print Shop. I dabbled in games but did poorly at most of them. I watched my father shoot space invaders and he introduced me to spreadsheets. Mostly, at that age, I dabbled in the spreadsheet program, Lotus 1-2-3. I watched it add up or multiply columns of numbers. I watched it sort. I liked the idea that I could type 1 into a box, and type =(box above)+1 and the program would make a list of consecutive numbers for me. I can’t remember if I used it for anything purposeful in elementary school, or even anything worth saving. It was more of a game, and a more immediately satisfying one than being killed by space invaders.

In middle and high school, I learned to put spreadsheets to use crunching numbers for my science fair projects. I learned about means and standard deviations, although I needed to write a BASIC program to calculate t-test scores. I thought it was pretty nifty the way the program would graph for me. My senior year, the printer on my old faithful computer stopped working and I had to learn to use a new spreadsheet program on a new computer the week before the science fair. I think it was called Quattro. Whatever it was, I don’t think I’ve used it since.

But by then, in addition to appreciating the number crunching capabilities of the software, I’d also discovered the amazing text sorting capacity. And I’ve always been a word girl more than a numbers girl. I had two main spreadsheets in that era, one for fun and one for the future. The fun one was an ongoing project I would do at my father’s office. I would walk over there after school and stay until he was ready to leave for the day. Sometimes I read. I answered his phone if he had a meeting elsewhere. And I built my spreadsheet. Slowly over time I created the students of a fictional elementary school. I had their names and ages and addresses and teachers, creating families with different numbers of children and enrolling them. I think I had birthdays and parent names also. I don’t recall anything I actually DID with the information, such as creating stories about the people, although at the time I was always creating characters and stories.

The other major spreadsheet of high school was my college decision spreadsheet. I started with one of those books of all the colleges and made a list of schools in my desired geographical range. I added data that mattered to me, including the percent of out-of-state applicants, class size, common majors, percent of students in fraternities and sororities and average entrance SAT scores. I sorted the list a few different ways, removed some schools, and wrote to a number asking for course catalogs. I added more columns based on the responses, and over time, sorted and culled again. I toured a number of schools and repeated the process, finally settling on a few to interview. The decision to apply Early Decision to Bryn Mawr was made less scientifically, but it was the spreadsheet system that got and kept it on the list to reach that point.

By college I was on Excel, which is the spreadsheet program I continue to use today. Most of the spreadsheets from that era were fun ones. I made one to see if there was a relationship between the dorm a student lived in and their geographic origin. And I made one to organize my May Day gifts and their intended recipients. I’m sure there were more. A year or so after college I made a spreadsheet of all the songs I knew. (First I had to decide how to operationally define “knowing” a song.) I’m sorry I’ve lost that one. I’ve also lost the spreadsheet of ER episodes I have on video tape. I still have the videotapes but not a functional VCR.

When I was teaching, I had a spreadsheet of medical schools. When I was in medical school, I had a spreadsheet of residency programs. In residency, I had a spreadsheet of fellowships. I would study by spreadsheet. Pharmacology in particular lent well to this approach, since I could sort the list by medication name or class, depending. I also ran a spreadsheet in medical school looking for a correlation between how much I liked or disliked a professor and what medical school that professor had attended. Spreadsheets can be quite therapeutic.

I used a spreadsheet to gather data from my fellowship research. I worked with two different statisticians. The first one told me that a spreadsheet was the best way to get my data to her. We met once, and she showed me that you can name the multiple pages in an Excel workbook, rather than leaving them names Sheet 1, Sheet 2 and Sheet 3. She also showed me that you can create additional sheets. I had been using Excel, I thought wisely, for 20 years without discovering this feature. The second statistician told me that spreadsheets were not a good way to submit data and that I should ask the statistician beforehand next time. More spreadsheets for the rest of us, I suppose.

More recently, running a spreadsheet has been a reasonable indicator of the importance of a thing. Not always, as I have had a few spreadsheets devoted to the results of various games in and one tallying up items of clothing to better direct an upcoming shopping spree. I also have one for a few mystery series I read, noting which books I own and which I still need to get to complete the set. I don’t yet have one of books I own, in toto, although I probably should.

I keep an annual blood sugar spreadsheet, noting blood glucose levels, amount of insulin taken, carbohydrates consumed and other factors such as exercise. It has additional pages where I note pump setting changes and calculate carbohydrates in a given dish. This year I added a page for menu planning. In one column I listed the foods I frequently cook (or infrequently cook because I keep forgetting to cook them) to inspire me. In the next I list the meals I plan to eat the next week, duplicating entries if I plan to have left-overs. I have space to note dishes that I need to prepare and also a carbohydrate tally for any composite dishes like cookies or macaroni and cheese.

I run a workbook at work for various questionnaires I need to score frequently. In addition to generating a total score, each generates several sub-scores based on the answers to various combinations of questions, and this can be tedious work when done by hand. So now I enter all the answers into the spreadsheet and it calculates the individual sub-scores for me. I’m still struggling with one of them, where the answer circled is not the actual score for that item. A circled 4 could correspond to a score of 0, 1, 2 or 3, depending on the item. I think a series of IF-THEN statements is going to help me there.

Then there’s my travel workbook. When I am planning a trip, I use the second page to enter possible flights with their departure and arrival times, layover airports and layover time. When I choose a flight, I move its information to the front page, along with other relevant information such as hotel address, phone number and reservation number, phone numbers of anyone I plan to see on the trip, and addresses and directions to any place I plan to visit.

I’ve started an apartment workbook. So far I have columns for address, number of bedrooms, price, and particulars about laundry and dishwashing. I’ll update it with notes on places after I have seen them. And I have a PA document worksheet, with a running list of all the papers I need for my PA medical license and my credentialing packet. The last time I moved, I had a spreadsheet of boxes and their general contents, and will probably do the same for my upcoming move.

At work right now is my transition spreadsheet. I have listed my patients, and for each note birthdates, relevant diagnosis, whether I prescribe medication for them and when their next visit should be. It took a while to get Excel to calculate ages from birthdates but I figured it out. Over the next few weeks I am filling in the transition column to assign each to another provider. A side effect of using a spreadsheet for this is that I can sort the list any number of ways. By sorting by medication status, I can estimate how many patients need visits every 3 months for med checks versus every 6-12 months, and give more accurate data to my office manager.

This brings me to a particularly high spreadsheet count at the moment, and all of them serious. Clearly something had to be done. So over the past few days I have gone back through my live journal and catalogued all 368 entries. You see, several times lately I have gone looking for a particular entry to link to someone or print out for someone else but could not remember when I wrote it, and LJ’s search feature is not helpful here. I’ve had to poke around and click on any title that looked promising. So I now have a searchable database, listing, title, date and either a sentence summary or any other keywords I might use which do not appear in the title. It should be short work to add subsequent entries to it as they are written.

Spreadsheets appeal to the way my mind works, liking things in linear format with information attached to each item. I like how they can categorize and re-categorize the same information by different criteria. Add information in random order, then sort by date and presto, chronological lists! Or alphabetical lists! Or a count of people, places or things that share a specific trait, just by creating a new column and tagging it Y/N for each entry. How many patients do I have over 10? Just sort. Which apartments are on Shady Lane? Just sort. Add the search feature and. . . well I could go on and on, but spreadsheet lovers already know, and no one else will ever quite understand.

There’s one thing, though, a favor I have to ask of you. Please stop me if I ever propose making a spreadsheet to catalogue spreadsheets.
It had the makings of a horrible day. There I was in an unfamiliar city. The week before, I had flown to visit my family for Thanksgiving. The week before that, I had flown to an only slightly familiar city for a job interview. In between these travels I had been seeing patients.

So I was neither at my physical nor mental best. I dragged a little, literally. I relied more on keeping my knees bent backwards to maintain balance, which is necessary but not ergonomically advisable. Remaining upright in a chair was starting to take conscious attention. I was starting to alternate between speed-talking and gaps for word-finding. The airport where I changed planes has accessibility carts which keep people from being run over by sporting both flashing lights and beeping sounds. I had to move to a wall, stop still and close my eyes whenever I started to see the blinking, to prevent disorientation. I finally resorted to Advil for the sensory overload headache and was glad I had worn a necklace to keep my hands busy. The best I can say about my diabetes control is that I was still alive.

And so it was that I arrived for the annual meeting of a group which means a great deal to me, one of the few reasons I even considered getting on a plane for a third week in a row. I’ve described the group facetiously as the 30 other people in the country who care as much as I do about how health care students are taught to think about disability, and there’s a more formal mission statement but not necessarily a more accurate one. This was my third annual meeting. I’ve also participated in telephone meetings, both of the group at large, and of a smaller task force, over the past few years. And there have been e-mails and e-mails and e-mails. But while not a group of strangers, this wasn’t exactly a group of familiar folks.

And yet, I felt safe. And I knew from prior experience that I would be able to feel safe. And when I got home and slept and put things together, I realized a major reason why I had felt so safe.

No one offered me any help.

There’s more to it than that, of course, and underpinning the more is probably the reason why no one offered help. While not a disability-exclusive group, or even a disability-majority group, it is, for lack of a better term, a disability-parity group, and a group with multiple participants with disabilities.

Note that the salient factor is NOT that it is a group dedicated to a disability-related cause. I find having a disability mission, in and of itself, does not make a meeting a safe one in which to be disabled and often is precisely the opposite. I work in a disability field, after all, and I go to conferences and meetings talking about people with disabilities all the time. And I find them necessary for my professional purposes, but always exhausting and frequently alienating. Over and over I hear about the “us” taking care of the “them,” no matter how “them”-like I may be. Buried amidst the hours of negative language and attitudes, used casually and knowingly are the nuggets I need to keep up my clinical knowledge.

I have had to carry plates of food up and down stairs at a professional meeting related to disability purposes. (I had not thought to request accommodations because I did not expect stairs in a hotel conference room between the tables and the food.) I have been knocked down at a professional meeting related to disability purposes when an acquaintance grabbed my arm in greeting. I learned that the stage to the main auditorium in our medical center is not accessible, three days before I was scheduled to give a talk from it, on a disability topic at a conference addressing disability issues. People running workshops at disability conferences want participants to write things down on paper, right then and there, and never make it explicit whether these papers need to be handed in. And of course, any attempt of mine to sit on the floor is met with instant angst as people rush to tell me that there are, in fact, chairs available.

But one of the missions of this group is to teach people respect for people with disabilities, not just to take care of them. And that’s a start. Even when discussing care of people with significant cognitive and communication impairments, we have written as a curricular goal for health care students that they should talk directly to the patient, adapt interview styles as needed and learn about alternative communication methods. We have also written, explicitly, that while input from family or professional caregivers is often needed, quality of life can only be fully understood from the patient’s point of view and with their input. That’s powerful stuff, right there.

Having multiple active members with disabilities helps a lot, too. It eliminates tokenization. People with disabilities are able to share their perspectives and experiences and even share differing opinions, because none of us feel compelled to speak for all people with disabilities, all people with our own disability or the entire disability community. Meetings are held at a location that has accessible transportation from an airport, with accessible hotel rooms available, with accessible transportation options from the hotel to the meeting location. These things are discussed, not as irritating special accommodations but as absolute criteria when choosing a city. (Other criteria include cheap hotel rooms and a free university meeting space where people who cannot attend in person can call or internet in.)

And so I was not the only person with a disability in the room. At highest count, when some faculty of the hosting university joined us for lunch, there were 3 people with visible disabilities and at least one with an invisible disability in a room of maybe 25 folks. At least one person participating by phone also has a disability.

That alone doesn’t explain it, though. I actually have a number of colleagues who have chronic physical or mental health conditions that could well classify as disabilities under at least some circumstances, and who are open about having these conditions. None of them really identify as Disabled, though. They don’t think about disability conceptually, culturally or politically the way I do, either about their own conditions or about disability in general. And I am definitely the most visibly disabled person, and the one who has tales of requesting accommodations or coming face to face with inaccessibility and ableism. There’s a reason I was the one asked to give our department talk on disability advocacy this week, and a reason that I talked about things that a room full of disability professionals, many of whom have many years of experience on me working with children with disabilities, had never heard before.

So it’s probably a combination of membership and mission, but it works. And so for the duration of the dinner the night before, the meeting itself, and a dinner following the meeting, no one offered me any help. I heard one person being offered help, once, who accepted. I grabbed a door for a person, once, because I was also grabbing it for myself lest we both got locked out when it closed. Mostly people were left to their own devices. It was divine.

And I was a mess, particularly by the dinner after the meeting. I was walking more slowly than usual (not that they knew my baseline). I jumped every time a flash photograph was taken in the restaurant where other diners were celebrating birthdays. By the end of dinner, I was pretty much zoned out from the ambient music, on top of the day, on top of the month. I fingered my necklace and rocked for a good part of dinner. Someone looked at me once as though she was going to ask if I was OK, and then didn’t. I was grateful not to have had to try to answer the question.

I asked for, and was found a chair without wheels to sit at during the meeting. It seems that wheelie chairs have proliferated exponentially in meeting spaces over the past few years, yet another example of progress leading to less accessibility rather than more. I have reason to distrust any chair with wheels that does not also have brakes. If a wheelless chair had not been available, I would have sat on the floor during the meeting itself. At one point, after the actual meeting when some of us were observing a medical student workshop on disability, I did sit on the floor. No one offered me a chair. No one asked if I were all right. No one tried to help me up. People continued to talk to me from their standing or chair-seated positions. It was like they recognized that I knew what chairs were and could access one if needed without their intervention. I have trained my coworkers to the same level of nonchalance, but it’s taken years. These were virtual strangers.

I was asked for help a few times. Someone needed a document e-mailed to people at the meeting but could not do it from her mobile device and asked if I could do so with my computer. I did, although I needed someone to provide me a few of the e-mail addresses. Someone asked if anyone had any Advil, which I did. And I volunteered to provide a typed transcription of the meeting for a participant with a hearing impairment who was going to join via internet link. He ended up not participating. I was sort of disappointed not to be able to use my disability typing superpower.

People who offer help mean it kindly. They want to be, well, helpful. As someone in a “helping profession” I understand the instinct. So of course one needs to recognize this and be kind back. But it’s tiring. Even if they only offer once, someone else is sure to offer later, and needs the same polite refusal, as does the next person and the next and the one after that. It’s a lot of extra social interaction for someone who wasn’t necessarily looking for extra social interaction, part of the social tax for having a visible disability. And they typically don’t offer once. They offer, you refuse, they offer again, ask if you’re sure, tell you it’s no problem. And of course, it’s 100 times better that they offer than that they insist.

Often, when I am doing things visibly differently, the “disabled way” is when I need help the least. The problem is usually solved at that point, if it could even be described as a problem in the first place. The last thing I need is for someone to grab I door I am currently opening or a suitcase I am currently holding. I look laden down with my luggage rack full of stuff, but I am using the luggage rack precisely so I can manage my stuff independently. It’s not a matter of “pride” or “wanting to be independent,” but just doing things myself because I can and why waste valuable help on things I don’t need? I more often need help with fine motor things than with gross motor ones, anyway. The cane confuses people because my hands have always been more significantly disabled than my legs, so I mostly need the same help I used to need before I had any visible disability markers at all, and I still have to convince people my hands won’t do what is expected of them.

In fact, the times when I actually do need help, I generally don’t appear to be struggling or even often doing anything at all. If I need help opening something, the chances are pretty good that I’m not sitting there struggling with it because I’ve already tried all the independent options and moved on to the phase where am deciding who and how to ask for assistance. Pushing my hands leads to loss of function for a sustained period of time, so I don’t generally bother. So when I do need help, it is by presenting the problem very specifically to a target person, and asking them to perform a very specific motor task. Until I ask, observers generally don’t even realize it’s a task I need done. These days, it seems that I need more help with touch screens than with anything else. I don’t look as though I am struggling with touch screens. Rather I am going up to people, telling them I can’t use their touch screens and asking them to provide alternative access to the service that is only available to those with the magic touch. (Another example of progress inaccessibiling me out. . . ) These increasingly frequent conversations don’t tend to go well, which is ironic when they occur at an airport, where people would eagerly “help” me with a wheelchair I don’t need, or at a pharmacy where customer assistance should be in the job description.

Star Ford wrote a great piece about the sort of help autistic people tend to need, and noted that it is often articulated very specifically:
“a ride to downtown, fixing my internet connection, a piece of fabric with 2 inch yellow stripes, someone to go with me to an office on Tuesday morning, a weighted vest, a quiet room. Notice these things we need are highly specific and individualized. That’s one thing I’ve learned from just listening: autistic people very often articulate in detail the exact thing they need at that time.”

I find that tends to be true of people with disabilities as a whole. We generally know what we need, and it’s very seldom what non-disabled people offer us. I recall the narrative I read, years ago, of a blind man who asked a passing pedestrian simply to tell him the name of the intersection at which he was located. They wanted to know where he was trying to go and kept trying to give him directions. It is distressingly common for wheelchair users to have others try to push them places they didn’t necessarily want to go. Just today I read an article written by a college student who tried using a wheelchair for a week to assess campus accessibility. (We’re going to table the discussion about all the problems with disability simulations for a minute.) He made the comment that “no one offered to help that first day.” Addressing the problem with disability simulations , a wheelchair-using blogger noted that “This gentleman’s fellow students were doing exactly as they should have been doing — presuming competence.” before outlining the usual consequences of unintended help ()

The best help I was ever offered in a professional setting, by the way, occurred during my first emergency medicine rotation during residency. Emergency medicine was undeniably a challenging area for me, given my specific impairments with manual skills and handwriting, especially at speed. Emergency medicine doctors are not terribly well known for their patience. In my prior experience, I had either been expected to do everything, or not expected to be able to do anything, neither of which were accurate assessments of my abilities nor leading to good care for the patients. One attending, who I learned months later has a close relative with a disability, said, “you'll have to tell me what you can and can't do.” She then listened to the answer, thus enabling me to do the things I could. By making the offer once, she opened the door for me to approach her as needed later.

My disability education group is important to me for so many reasons. We are doing work that matters to me, as I feel my patients with disabilities need me to teach their future health care providers about disability just as badly as they need me to provide direct clinical care. It’s a group that has used my strengths in teaching and writing to good effect. It is a group which speaks about people with disabilities, specifically and generally, individually and collectively with respect.

And it’s a model space for me, one where it is safe to have a disability without being a space exclusively of and for people with disabilities, a reminder I sorely need that such spaces exist. I generally only experience that feeling in disability spaces, or in spaces where I know people well. How rare was this space where competence is presumed as default, so I had the freedom to do things the disability way without comment or concern.

I was so worn out by the cumulative effect of a month of travel that by the end of dinner, I was surprised I hadn’t toppled over and could still put together a grammatical sentence. I suspect the main reason was that I only had to focus on my own needs, social interaction and the actual business of the meeting. I didn’t have to put any additional bandwidth into being Disabled Around People.

That’s a day I will get on an airplane for, every year.
While some of the following is written in dance jargon and will be incomprehensible to non-folk Dancers, some of it is just plain wordplay that should be comprehensible to most wordplayers. Suffice to say, we had a time in dance this week.

We barely had enough people for class. In fact, class would have been cancelled if our teacher thought there were only to be 5 of us including him. He had expected 5 for the first half and a sixth to arrive late and chose dances accordingly. The sixth never came.

He had been trying for a Halloween theme. Sometimes he picks dances that are on upcoming ball programs. Sometimes he picks a technique, such as dances with corner figures or dances to practice stepping up and down. Sometimes it just seems random. And we’ve done a few themes. Before he took a trip to Australia, we did Australian Ladies and Ian Powrie's Farewell to Auchterarder, Ian Powrie having left Auchterarder for Australia in 1966, and the dance circling in one direction at the outset and the other at the close, to symbolize the different hemispheres. Then there was the Valentine’s Day collection including Red House, Kiss Me Quick My Mither’s Coming, Catch the Wind (a courtship tale) and a few other dances in that line.

This week was to include De’il Amang the Tailors (De’il = Devil), Ferla Mor (a ghostly themed dance done to ghostly music, Howell at the Moon (apparently an anniversary dance dug out of some database or other due to its name) and this thing called Lady of the Lake.

We’ve adapted De’il Amang the Tailors for 2 couples before but none of us felt much like the athletics required. I find that modification incompatible with breathing. Ferla Mor really needs 3 couples. I know sometimes you can get away with one experienced dancer dancing with a ghost, but not in a dance that involves one partner haunting the other in a diagonal reel. Howell at the Moon seemed equally involved with the additional hiccup that none of us had ever done it before. Unless you count our teacher prepping on You Tube videos, none of us had ever even seen it before.

We did some step practice for the first time in a long time. Then the five of us looked at each other. A classmate who knows I tend to be quick on the dance name asked me what that dance was that was for five people. (Not five couples, five PEOPLE.)

I, having been de-brained at work, mustered up, “Pip. . . five. . . pip. . . dice? Five. . .Pip-pip. . . “ which prompted her to remember “Domino Five!” So we danced Domino Five, which I am convinced was devised one day in a dance class waiting for a sixth to arrive so they could dance. Designed with the five people arranged like the pips on a die, or domino, it simply combines basic figures and flows beautifully.

And then we attempted Lady of the Lake (also known as the Water Kelpie, although I kept thinking of the Arthurian Lady of the Lake who I believe to be a sorceress in many versions, and trying to fit it into the Halloween theme somehow. None of us had done this dance before and we refused to ever dance it again. It was awful. It involved the first couple crossing, and then the first man and second woman turning ¾ in 2 bars WHILE the first woman and second man turned 1 ¼ into a balance, and then reversing it. And we couldn’t do it. Practicing didn’t help. We all knew where to go, but none of us could get around the 1 ¼ fast enough, and trying to time the 1 ¼ with a ¾ just made it worse.

And the dance overall wasn’t fun enough to make up for it. Some dances are physically demanding but are what I consider worthy advisories. This dance just wasn’t fun. The first 16 bars were rotten, and the second 16, down the middle and up followed by an allemande were fine, but not enough of a reason to keep submitting ourselves to the first half. So we did 2 repetitions, got completely into trouble, our teacher stopped the music, and we all simply declined to try again. He then offered to try to modify the dance. He made the turns 4 bars instead of 2, removing some setting in the process. It became more danceable but wasn’t any more fun. We started offering names for this adaption. “Man of the Lake” morphed into “Man of the Pond” and then “Man of the Puddle.” We still didn’t want to do it.

Then our teacher got the idea to go from a figure of eight into the allemande. I loved it. I can’t think of any other dance I’ve ever done that has that has that transition. It flowed beautifully.

So we started to devise a brand new dance around this figure of eight/allemande business. We started it off with rights and lefts, which left 8 bars to go and the progression already sorted. I suggested a meanwhile figure and we began to experiment with what we could have people do. We hit on the people on the second diagonal turning 1 ½ times while the others chase halfway around the square, then those on the first diagonal turning while the others chase.

“That’s spiffy!” I said.

“That should be the name of the dance!” said a classmate, following herself up with “And we should call that figure, The Spiffin.”

Thus, joining the ranks of The Bourrel, The Espagnole, The Torbillon and The Spurtle, was The Spiffin born.

We’re still working out the details. I’m not completely convinced there isn’t already a figure that contains these movements, although I am pretty convinced there isn’t already a Spiffin. It comes out more like a corner pass and turn than anything else I can name. We tinkered around with it a good bit, working out which people should chase first, whether it should be a full 1 ½ turn, which shouldn’t be too hard to execute in 4 bars but seemed tight, or a “half turn and twirl”, a non-figure figure I dislike in Strathspey time and adamantly refuse to contemplate in quicktime. We also had to play around with the hands, trying right for the first turn and left for the second, before settling on two left turns.

“Left hand each time, a sinister figure,” I noted. “Fits the Halloween theme.”

What cracks me up the most is how quickly we began using the term as though it had meaning, even if we were continuing to redefine the meaning on the fly. “If the Spiffin comes after the rights and lefts, then it should start with the first man and second woman chasing, since that’s the way they end up facing,” sounded perfectly cromulent, although the Spiffin had begun with those couples turning a moment before. “When I use a word, it means just what I choose it to mean—neither more nor less,” I suppose applies to dance devison as well.

We tried changing the order of the figures around a bit, but the version I liked the best was:

Rights and Lefts
The Spiffin
Figure 8
Allemande

Or, as we said, simply a combination of four basic 8-bar figures. How spiffy!
In my ideal world, disability accommodations would be very uncommon. Note that this is not because disability itself would be uncommon. Rather, it would be due to a much more universally designed society, in terms of built environment, attitudes and policies.

Imagine a world where all but the most legitimately historic of buildings was accessible to those with mobility impairments, ramped, elevated and equipped with doors that most people could open. Fluorescent lighting, fragrances and other barriers to access would be removed. Braille materials would be available everywhere that print materials are, either pre-printed or sent electronically upon request to a user with a refreshable Braille device. Files could also be sent electronically for those who use large print or screen readers.

Part of it involves having more choices available to more people. If it were acceptable to sit, stand or lay down at conferences, more people would be able to attend. If airport kiosks and the CVS minute clinic would use keyboard entry and audio output/voice recognition software in addition to touchscreen technology, they would be usable by more people. (They would be usable by me, for example.) If doctors offices would allow people to make appointments or get messages to their doctors by phone, e-mail, text or a dedicated online program, a lot more communication would occur with a lot less frustration.

Star Ford calls this “Deep Accommodation” here in a post worth reading. The idea is to “systematically” accommodate more people more of the time. There is still a line where some people would need individual accommodations, but it would be much less than it is now. I would further posit that the systems by which individual accommodations are requested, negotiated and provided would be much improved if we had a culture where more people are accommodated as a matter of course.

I’ve been fortunate to work in relatively deeply accessible environments over the past few years. My accommodation needs during residency were addressed through a few informal conversations. I have not requested any formal accommodation during fellowship. One day I traded out my desk chair for another chair, already in the department that did not have wheels. (I distrust anything with wheels that does not also have brakes.) I did not need to order a “special” chair or a “different” chair or provide letters from a doctor outlining how I fall off wheely stools. (Some readers may recall when I needed a doctor’s note to sit on the floor during medical school lectures.) There were choices in chairs even though doctors desk chairs are typically of the wheely and spinny variety. When I was issued a new computer last year, they handed me a model that was too heavy for me to carry around. I brought up the issue and another computer was found in the computer array at IT central within 24 hours. It’s been very pleasant to be included, rather than accommodated.

However I’ve hit upon the disadvantage to being informally included and accommodated. Now that I am requesting an official accommodation, I lack the necessary paper trail.

In March I need to take an examination. I am not at all concerned about the content of this exam. Not to talk about grades in an unMawrterly way, but I scored quite highly on a similar exam given to trainees in my field, without studying. And in fact, the exam itself is quite accessible to me. It is computerized, administered by a large test administration company.

However, the check-in process for the exam is not accessible. They require examinees to present photo ID and to sign in. The last time I took an exam through this company, they informed me that my signature on their sign in sheet did not sufficiently match my signature on my driver’s license. They asked me to sign in again. I refused. There was no guarantee I’d be able to create a better match the second time, and writing my name slowly and carefully three, four or more times could trigger my dystonia to the point where the computer mouse was not accessible. Eventually they let me in. Disturbingly, the information provided prior to the exam mentioned bringing a photo ID, but not that examinees would be subjected to handwriting analysis. I had no way of knowing this situation was going to occur until the test start was minutes away, so I had no way to have addressed it beforehand.

I had requested a “personal item exemption” so that I could bring my insulin pump and glucose meter into the test room, and have access to glucose and food at any time, even if there is no “scheduled break.” The paperwork, e-mails and negotiation related to my diabetes before the exam, and the complaint I registered about the sign-in process after the exam totaled over 2 hours. I spent 90 minutes in the room actually taking the exam. That’s some pathetic math right there.
With this new exam looming, I contacted the test creators about the issue and they informed me that my only option was to request an accommodation. So I am filling out the accommodation paperwork.

The accommodation paperwork wants documentation of my disability, a list of all other medical training tests for which I received accommodations, and letters from my medical school and residency stating I received accommodations in those settings (if I did.) I did not keep the e-mails that documented my medical school accommodations, nor would I know who to contact there, 7 years after graduation, to certify they were given. My accommodations in residency were provided by verbal agreement only. To make things better, while my difficulty handwriting was first assessed in 1986, it was not diagnosed at that time and was mis-diagnosed in 1999. The only information I have from my 1999 assessment (which was performed solely so I could access a testing accommodation) states my (mis) diagnosis. It does not provide a comprehensive evaluation of any sort. Thankfully I have paperwork from 2004 with a correct diagnosis, although the adult provision of a diagnosis for a condition typically diagnosed in childhood is going to raise some eyebrows. Of course, all of these address handwriting stamina, as applied to essay exams and medical student documentation procedures, not handwriting reproducibility. I’ve not had an evaluation for this. I doubt I could get a neurologist to assess me for it specifically.

So far I’ve written a personal statement about how my disability affects me in life, filled out the form and scanned into my computer 20 pages of medical evaluations dating back over 20 years. All so I can sign into the test.

It’s worth noting that “sign in accommodations” are not one of the standard accommodations listed on the form, which include extended time, someone to record answers, “special physical accommodations at the site (special lighting, chair, etc), Zoom Text/screen magnifier, a reader or individual testing room. There is an “other” box, which permitted me 70 characters to state my case. And of course I am also requesting again a PIE so that I can bring my pancreas into the room, just like all the people whose pancreas’ are on the inside of their bodies. I’m not sure the system can cope with someone requesting an accommodation AND a PIE for two completely unrelated conditions.

I miss me some deep accommodation. How about sign-in procedures that could occur via fingerprint, voice print or retina scan? How about differentiating accommodations that change the actual nature of the exam (for example, extended time) with those which merely permit a person to access the exam room? How about. . . well I’m out of how-abouts but this can’t be the best or only way. The ADA does not mandate this level of scrutiny. The test does not say “people with disabilities need not apply” but it sure puts up a lot of access barriers for us.
I have reached the limits of empathy and theory of mind. I cannot put myself into these persons’ shoes, or brains. I’ve been trying. Pretty hard. It does not compute.

I know there are people who do not view the world as a series of problematic intersections and barely acceptable stretches of roadway. I interact with these people all the time. This describes many of my friends and all of my co-workers. I fully realize that these people are the majority.

So I close my eyes and try to figure out how they see the world – literally see the world. And what neurons spark in their brains when they hear something like “200 E McBee Avenue on Tuesday at 11 AM.” Or maybe it’s what neurons DON’T spark in their brains. And I just can’t do it.

I can drive. I am very fortunate that I can drive because it has opened up employment and enjoyment opportunities for me. I own a car and I can make it go. And there are barely acceptable stretches of roadway in which I am comfortable making it go, either all the time, or at least during daylight hours. Sometimes only in one direction. And there are intersections through which I can safely transition from one roadway to another. And going places in a car means planning out a series of roadways, connected at intersections, and then making the car follow that route without anyone getting hurt.

Contrary to popular opinion, my difficulties in unacceptable stretches of roadway and problematic intersections is not explained by anxiety. I have anxiety, yes, anxiety about driving places, but the anxiety is based on my inability, not the other way around. It’s like the difference between having test anxiety where you know the material but can’t access it under the pressure of being tested, and being anxious about a test because you don’t understand the material in the slightest. The first problem may be addressed with anxiety strategies. The best anxiety strategies in the world won’t help with the second problem, just leave you as a person who is blasé about failing the exam instead of anxious about it. The exam is still failed. If I wasn’t anxious about driving, I would be able to sit at a light not worrying about if I could make the left turn, but still unable to make the turn.

For me, it’s a combination of poor visual-spatial skills and poor visual-spatial skills. It takes a lot of work for me to maintain the appropriate distance between the vehicle in front of me, the vehicle behind me, the curb or lane marker to my right and the lane maker to my left. But it’s work I can do safely, which is why I continue to drive. If that’s all that driving was, I wouldn’t really have a problem. I’m happier doing this at 35 miles per hour than 55 miles per hour, but I’m even OK doing this at 65 miles per hour except that the cars behind and next to me always seem to want to be going 85 miles per hour.

But that’s not all you have to do when you drive. First you have to get onto that road, with either a left or right turn. The right turn is usually not a problem. I can wait for a break in traffic and take it. Occasionally cars will seem to stop and I can’t tell if they are stopping for me and I wish they wouldn’t do that. But overall, right turns are not a problem. Some left turns are OK too. My current road has a center turning lane. So I can assess two lanes of traffic, get into the center lane, and then assess one lane that I am going to merge into. Left turns at stoplights which have left turn arrows are also not a problem. It’s the left turns at lights with no arrows, and the left turns with no lights and no turning lane that I can’t do unless the roads are very not-busy. So I develop all sorts of alternative strategies. I turn right, first, and then I drive along the road until I reach a cross-street with an acceptable light and use the cross street to make the left turn. I turn right, first, and then I drive along the road until I find a store on the left that I can easily turn into, and use their parking lot to turn around. It’s effective, but it adds extra time and steps to the trip.

And then there’s merging from one lane to another, which you have to do if you drive on a highway that has exit and entrance ramps, and also have to do if you drive on any road with multiple lanes and want to make a turn from another lane, which turns out to be most turns. And also, you have to do that if the road decides to go from two lanes to one lane, or make a lane a turn-only lane and you don’t want to turn. And judging the speed and distance of my car, the cars in my current lane and the cars in my proposed lane is not something I do well. Or quickly. So there are routes I simply can’t consider because I can’t cross lanes fast enough to make the recommended turn. This makes my GPS grumpy.

So I have lived at my current address for three and a half years. There are three routes I can drive reliably. By “reliably” I mean that I was able to drive the route following my intended path from origin to destination on 9/10 consecutive trials. The three routes are: the 1.6 miles to my department’s main office, a 3.5 mile trip to Target which also includes my bank and a bookstore en route, and the 4.5 mile trip to my current office, which also includes a grocery store and 2 pharmacies en route.

Everything else, even the weekly drive to my dance class, which is very very very close to my department’s main office, is not a reliable route. I get into turning lanes too soon. I can’t merge in time to make the turn at the light and have to mobilize a Plan B. I have Plan Bs for every route, even my reliable ones. I have Plan C, D and Es too. Because I need them. Some of this is hereditary. Once my parents moved, and directions to their new house included directions to “turn around in the Creative Chicken parking lot if you miss the turn.”

My reliable route to my current office is under construction. It has been under construction for the past month and I have no idea how long the project will last. So my reliable, 12 minute drive has turned into an amalgam of posted detour signs, GPS recommendations and map suggestions. The options get broken down into a series of problematic intersections and barely acceptable stretches of road-way.

I will drive north on Main street north of town but not south, because if I don’t get off Main Street soon enough, I end up on the Busy Part Of Main Street where I don’t. I will drive on Washington Street but not turn left off of Washington Street onto Academy. I can turn left onto Washington Street onto Stone. I will drive south on Church Street but not north because if I miss my turn driving north, I end up on the interstate.

And so I have, after two weeks of map-reading and trial-and-error-ing, and asking trusted people questions like “Is the Washington Street that intersects with Laurens Avenue contiguous with the one that crosses Academy a block from here?” I have found a 20 minute drive to work and a 20 minute drive from work which contain only minimally-problematic intersections and acceptable stretches of roadway. Neither of them are reliable yet. In fact, I have only once successfully taken the Drive To Work via the intended route once without errors, and am still working out the best way to get onto Washington Street to leave work. The best way may well be to drive past it, turn around in a muffler shop, and come back towards it as a right turn rather than a left turn.

And I know that this is the reality of living life inside of my brain and my body in a place where I have to drive. And I know that it isn’t reality for most people. I mean, of course I know that. They tell me that all the time. I watch them drive places and observe this all the time. The people who design roads are people like that, and design the roads for other people like that.

And I just can’t imagine it.

The closest I can come is remembering what the world looked like to me when I lived in a Real City TM. I had to think about how to get places (which bus to take, where to transfer, schedules, should I walk 3 blocks at my end or 5 blocks at the destination) but it took so much less work. More time, sometimes. More planning, even, sometimes. But overall less work.

And then I start to think of things I find easy, like reading books or cooking dinner, and figure it must be like that. Just a thing people can do with their brains and bodies.

I mean, neurodiversity at its finest. And it really does fascinate me. When I’m not trying to figure out how to get to work during road construction, and the only people available to me who know the area can’t fathom the routes as a series of problematic intersections and barely acceptable stretches of roadway.
Also sparked by the Pajama Game:

The show included a duet sung between a man and a woman who were not romantically involved or interested in one another at any point during the show. One was romantically involved with a third character. In fact the entire song was about the woman trying to get the man to trust his girlfriend.

Well, I'm sure it's not the only show tune where this occurs, but I can't think of any others. I have a large but certainly not encyclopedic mental collection of musicals and I'm coming up blank.

So I'm putting it out here. Can anyone name a show tune duet sung by a male and female character who have no romantic interest or involvement with each other at any time? Clearly cross-generational or family songs don't count, so no "My Best Beau" here sung between Auntie Mame and Patrick Dennis, or "I don't need anything but you" between Annie and Daddy Warbucks. And I'm also excluding ensemble numbers where a man and woman each sing the only solo lines and then the chorus sings stuff. Actual duet.

As a teen I collected friendship songs, "I'm not in love/not going to fall in love" songs and optimism songs. Now I want to start a new collection.
I saw The Pajama Game this summer for the first time. Previously I had known three songs from the show, Hey There (You with the stars in your eyes) and Hernado’s Hideaway, from the radio, and 7 1/2 Cents, which I remembered from some PBS variety show special years ago. Possibly Junior High School years ago. 20+ years, easily. In the song, the characters add up all the things they would buy if they got the 7 1/2 cent an hour raise they wanted, including a pajama factory. They do out the math on stage, 40 hours every week, plus 2 and a quarter hours overtime, at time-and-a-half for overtime. . . I may or may not have needed to ask my mother what overtime meant. I definitely needed to have her explain time-and-a-half. How could time be measured that way? Time is time.

If I’d seen the Pajama Game in its entirety at that age, I would also have asked more questions about unions, and slow-downs. I already knew what a strike was, as my first act upon leaving the hospital as a 2-week old was crossing a picket line, and I had grown up hearing the story. So as an adult, I was free to focus on the music (Hernado’s Hideaway is a tango, but what actually makes a piece of music a tango, and distinguishes it from other non-tango forms of music?) and the dancing (apparently this was the first show choreographed by Bob Fosse and they included some of the original choreography) and the costumes (some of which I thought were not true to the 1950s period) and the scenery (were the brick walls molded or painted?) and acting (one character’s accent striking me more as affected Brooklyn than small-town Iowa) and staging (including some creative use of a rolling platform and crossover scenes) and characterization (such as the somewhat incongruous combination of a carnival knife-thrower and an efficiency expert.) I came home and looked up the show, and the lyrics, and the description of the book, 7 1/2 cents that the book is based on. This is how I watch a show now, and I hasten to add, an well-staged version of a show I enjoyed. But then, I’ve finished high school.

For many years, though, it seemed as though I was getting an awful lot of my history education from shows and show-tunes. Sometimes it seemed the musicals did it better. I recall skimming a textbook chapter on the expansion of the American West and summing up the entire thing with the lyrics of “The Farmer and the Cowman,” from Oklahoma! An similar chapter covering the advent of mail-order catalogues was succinctly supplied by the Music Man’s “The Wells Fargo Wagon.” I definitely learned more about the Depression from Annie than from school. Annie was the first show I saw on Broadway, at 6, and I appeared in a summer stock production myself at 12. It was where I first heard of F.D.R. and then proceeded to read children’s biographies of both Franklin and Eleanor Roosevelt. It was the first time I encountered the concept of the Cabinet. Frances Perkins sings. In the finale, the orphans sit reindeer style in front of the president for a song called “We’re Getting a New Deal for Christmas.” It’s not a terribly memorable song, otherwise, not destined for greatness like “Tomorrow,” but he drives them with a pretend whip and says “On Ickes and Wallces! Get along Cordell Hull!” I’m not sure I learned anything else about any of them beyond what I learned when my mother explained the song. I’m not sure I learned anything else about the New Deal, for that matter. I know I learned more about Herbert Hoover and Hoovervilles from the show than school as well. I studied World War 2 in school, but it was from South Pacific that I learned about “Tokyo Rose.” She probably got a mention in the text but not in class. 1776 is my notable exception. I definitely learned more in school about that era than was portrayed in the show, and I always felt the show cast my favorite John Dickinson rather unfairly as the villain of the piece.

I wouldn’t take The King And I as an authority on Thai culture of the 1800s, but it certainly did provide commentary on Euorpean colonialist attitudes. Annie Get Your Gun is arguably not an historically accurate commentary on anything about wild west shows in general or the life of Annie Oakley in particular, but from the show I did learn about moonshine and prohibition. (Guys and Dolls was a later lesson in prohibition.) Of course, listening to the soundtrack of Annie Get Your Gun young – early elementary school young – had its risks. It was years before I understood “Tom, Dick and Harry will build a house for Carrie when the preacher has made them one” meant that the preacher would MARRY Tom, Dick or Harry to Carrie, not build Tom, Dick or Harry a house first. I’m literal. But I listened.

I listened to a lot of record sound tracks as a kid, and listened to a lot of audio cassette tapes as an adolescent. And I saw a lot of shows. I was in Annie one summer and The King and I the next, and saw most of the other shows that reparatory company performed for both seasons. Later I ushered for a summer stock group of college students, seeing a show a week for free for two years ranging from the Mikado to On the Town. (They’re the same group that did the Pajama Game.) During those years, I did a lot of reading of the plays and books on which many of the shows were based. It wasn’t all historical. I read Green Grow the Lilacs, which was the inspiration for Oklahoma! I read Pygmalion in the school library and compared it to the dialogue of My Fair Lady. The summer I saw Camelot, right after my first year of college I read about 2000 pages of Arthurian Legend, about half of it in the Mists of Avalon. I tried to read Tales of the South Pacific, but even though I love Mitchner’s historical fiction novels, I don’t care much for his short stories. Or anyone else’s short stories. I tried some of Damon Runyon for Guys and Dolls but gave up there as well.

I wonder sometimes what a musical-based history class would be like. Students could watch a show and then delve into reading inspired by the era. There’s a whole lesson just in the lyrics of “Kansas City,” from Oklahoma! as they list one “newfangled” city experience after another. One could explore advances in construction “they went and built a skyscraper seven stories high!” or the advent of indoor plumbing, “you can walk to privies in the rain and never wet your feet!” This look at city development could be followed with the descriptions of New York City provided by Annie and On The Town a decade apart. Man of La Mancha could take one into all sorts of directions for the Spanish Inquisition. (NO ONE EXPECTS THE SPANISH INQUISITION!) (Yes, I know that’s not Man of La Mancha.) Mame could lead to exploration of educational theory in the early 1900s. The Pajama Game could spark a whole unit on the industrial revolution and unionization. Certainly it would have been a better unit on the topic than the one I had in 8th grade.

I liked history class, most of the time, but it often seemed to focus on wars and government, without as much attention given to the lives of people who were neither president, royalty or army generals. I’ve always been interested in the lives of people who were never president, royalty or army generals during the times that major wars were waged and governments were run. Shows seemed to pick up some of this slack. While it’s not strictly true that everything I needed to learn about history was included in some Broadway musical or other, the questions that shows raised and my quest for the answers undoubtedly increased my historical knowledge.

And of course, now as then, a show can always spark a quest into the show itself, and it’s place in musical history. What about the original Fosse choreography, and were those costumes really period, anyway?
About halfway through my second year of fellowship, in the middle of a series of disagreeing e-mails between me and one of my attendings, I realized the crux of the problem.

I was a lumper, in a department (really, in a field) full of splitters.

I learned the terms when I studied taxonomy in high school. The lumpers try to fit organisms into somewhat broader categories, deciding that slight differences might distinguish varieties or breeds or strains but keeping both under the same species. The splitters take these same differences as a sign that two organisms are in fact distinct species. (I know there are further definitions of species based on the ability to interbreed.) The two kingdoms split off into five, and later 6, based on further information showing fundamental differences.

In medicine, there are some clear cut diagnoses. Except there aren’t. An ear infection is an ear infection. But do you code separately if the child also has a fever or do you decide that a fever is part and parcel of the ear infection? I’d probably just code for the ear infection and save the fever code for a time when the kid has a fever without a clear cause. But then, I’m a lumper.

In my field, where diagnoses are less clear cut, it gets even trickier. Sometimes we end up labeling and listing symptoms, especially in younger children and those with more complex presentations. We might list ADHD, a speech and language disorder, an anxiety disorder and aggressive behaviors, all out separately and address each one Sometimes we don’t even have a diagnosis, so “developmental delay” and “temper tantrum” become diagnostic codes.

Sometimes we can find an Occum’s Razor that explains everything. The child has delays in language and adaptive skills, and flaps his hands and hyperactive behavior compared to other children his age, and we’re calling it autism. At least, I am calling it autism. Someone else might code for autism, and then code for a speech-language disorder or a communication disorder or developmental delays. Most developmental pediatricians wouldn’t code for hand-flapping separately, but a neurologist might comment on “motor stereotypies.” They’re the ones that also diagnose a child with both “epilepsy,” “partial complex seizures,” and an “abnormal EEG.”

When do we diagnose hyperactivity separately? Whenever the child is more active than others his age? Just if the child is so much more active that it is causing impairment (above and beyond impairment from the core traits of autism)? Only if we are prescribing medication? The DSM IV-TR did not permit the diagnosis of ADHD if symptoms could be explained by autism, but people diagnosed them together anyway. The DSM 5 has no such restrictions. So the kid could walk out of the office with a single diagnosis of autism, or three or four additional diagnoses that may or may not add additional information.

Some of it is personal style but some is due to the self-preservation instinct of many physicians who wish to earn a living. Insurance reimburses physicians based on a number of factors, including procedures performed, time spent with the patient and the degree of complexity presented by the patient. Complexity is partly calculated by the number of diagnostic codes. Insurance also requires a corresponding diagnosis before approving specific medications. So “hyperactive” may not lead to medication coverage but “ADHD” might. If I prescribe Zoloft using autism, rather than anxiety as my diagnosis, the medication may be denied. Some schools will only provide support for children labeled as having “dyslexia” rather than “learning disabilities” or “reading disorder.” Sometimes we just stack up diagnoses and forget to get rid of old ones. If the child has a “motor delay” at 9 months and then is later diagnosed with cerebral palsy at 2, we should go back through the problem list and take out the “motor delay” diagnosis. But we don’t always get around to doing that.

I’m finding my peace. If I have to split so that the child can get the medication or our department can get paid or the child can get services in school, I’ll split. (I’m not talking about making incorrect diagnoses for financial gain here, but more saying “developmental coordination disorder” for a child to get OT, instead of keeping it subsumed under the larger umbrella of “developmental delay.”) And I generally will split off a diagnosis for which I am making specific treatment recommendations. For example, if I am just giving general strategies to deal with anxiety I may not split it off, but if I recommend medication or counseling I will.

Just labeling it as a difference between lumping and splitting helped a lot, actually, and made me a lot more willing to split at times.

Now I am trying to sort through 20 years worth of accumulated papers. I’m a pack rat. I’m actually managing to get rid of some papers entirely, which is a BIG DEAL for me. I mean, I know I no longer need driving directions to a camp I worked at for one summer in 1998, but it’s hard to actually go through the folder of papers from camp and toss the directions into a box for recycling. And I’m also trying to reorganize the ones I’m keeping, and trying to develop a sustainable storage system for papers going into the next 20 or more years.

Currently I have a folder for each of my medical school rotations, which contains both didactic and clinical stuff. And then I have folders from residency that contain both didactic and clinical stuff. I’ve reached the realization that it would be more helpful for me to have papers clustered together by content than kept in separate spaces based on when I obtained them. For example, I have handouts on ADHD from med school, residency, fellowship and random conferences I’ve attended. I am likely to continue to acquire further papers on ADHD, being who I am and doing what I do and all. It would probably be more helpful for my future to have a single ADHD file than to have some of these handouts in a box marked “med school” and others in a folder labeled “community resources – WV” because I picked them up at a parent training I attended in WV. So I’m going to lump.

But I’m running up against subtle distinctions. Where do I put personal medical documentation that was generated solely to provide me with test accommodations? Do I put such letters in with my other medical paperwork? In with the test scores themselves? In some separate folder marked “accommodation paperwork”? My vaccination records are mainly used now when I apply for a job, not for my actual health needs, so should I keep them with my other medical records or employment information? Do I keep medical financial paperwork in with other financial information or in with other medical information? What about disability stuff that I obtained in medical education setting but use to help myself get accommodations. Would that fall under “rehab medicine” or “accessibility”? What about material from my college Disability Law class?

I can’t just lump everything in together in a box, because then I’ll never be able to find anything. And I can’t just split everything into little separate folders because I’ll forever trying to remember which folder I want and I’ll never be able to find anything. And right now, that I’m not working, may be the last time I have in years to really organize everything, so I don’t just want to shove things into folders to be done with it. Nor do I want to sit here with 7 file boxes of papers in my living rooms and piles of papers on every surface in a perpetual state of indecision paralysis.

There’s a place for lumping and a place for splitting and a time to know the difference. And there’s a living room full of papers I’m going to try to go back to lumping. . . or splitting. . . into some sense of order.
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