Is It Ableism? Part 6: Accommodation

As always, names of people are changed (except in the case of Richard Lavoie).

Links to previous installments in this series:

Part 1: Revisiting the Dark Ages

Part 2: Obvious Definitions of Ableism

Part 3: Defining Disability

Part 4: Internalized Ableism

Part 5: Is "Overcoming" Worth It?

In a seminar from the 1980s, special educator Richard Lavoie discusses the concept of fairness and what accommodation means in the context of education, something barely understood until pretty recently. In a clip that has stuck in my mind ever since I first saw this video in the late 1990s, Lavoie says:

As I speak to parents and teachers all over this country, I see classrooms and families being run... based on a child's concept of fairness... Fairness does not mean that everyone gets the same. Fairness actually means that everyone gets what he or she* needs...

...I'll say to a teacher, "Jody's gonna be in your class next semester, Teacher. She's a wonderful kid, very bright kid; she's gonna do very well in your math class. But she's got a learning disability. It's called a far-point copying problem, and she can't copy off the blackboard. So here's what I'd like you to do: when you put problems on the blackboard for everyone to copy, I'd like you to write up an extra set for Jody, and give that to Jody..." Invariably, the teacher will say, "I can't do that." And I say, "Why not?" There's a lot of answers I'll accept. I'll accept "Because I don't know how," I'll accept "Because I don't have time," I'll accept "Because I don't believe in mainstreaming," I'll accept "Because I don't like Jody." I'll go to the mat with a teacher and I will discuss any one of those answers with a teacher. The one answer I will not discuss, the one answer that I think is beneath contempt and beneath discussing is the answer I hear most often, and that is, "I can't do that for Jody..." Why? 

In unison, a few of the participants state the answer that Lavoie was looking for: "It's not fair to the others." Lavoie comments, "It's got nothing to do with the others. Jody needs it; the others don't. It has nothing to do with the others." To illustrate the absurdity of this logic, he provides a hypothetical example in which one of his seminar participants, Carolyn, goes into cardiac arrest. Although he knows CPR and can save her life, he refuses to help Carolyn, saying, "Hey, Carolyn, I'd like to help you; I really would. But, heck, we've got thirty people here. I don't have time to give CPR to everybody, and it wouldn't be fair to only give it to you."**

Lavoie wraps up the section by saying, "We're not going to be able to work successfully... with a learning-disabled child in a mainstream classroom until teachers and parents begin to understand that in order to be fair, we've got to treat them differently."

I feel that this more-enlightened concept of fairness is now far better understood-- at least in the context of a kid with an academic learning disability. We still have a long way to go when it comes to applying it with autistic people, and when I was a kid "a long way to go" wasn't even a qualifier: in the 1980s and 1990s, a more ignorant time before the term "autism spectrum" was part of mainstream discourse, we weren't even "on the way". 

As I discussed in previous installments of this series, my parents, as well as many teachers, camp counselors, and employers regularly treated me with the absurd concept of fairness that Lavoie describes. Phrases that I heard over and over included, "You can't expect people to understand [X] about you, and you need to learn... bla bla bla." Intentional or not, the implication is, "You don't see everyone else expecting the kinds of accommodations you do, and it's not fair for you to expect 'special' treatment." The things that I needed people to understand and accommodate were my chronic anxiety, my meltdowns and my need for direct communication. 

My need for direct communication has always been the most important and, especially when I was a kid, it has played a critical role in curbing my anxiety and preventing meltdowns. Like many of us on the spectrum, I don't do "hints." I can't. It's not that I don't know when somebody might be dropping a hint, but the ambiguity of this communication is very disconcerting to me. I started to be able to detect possible "hints" in my teenage years. What was really frustrating was that if I went to my parents about hints I thought I might be getting, they told me I was reading too deeply into things. On the other hand, if I decided to put aside my fears and go with the assumption that something wasn't a hint, I often ended up getting in trouble and then told, "You need to learn to take hints." Sometimes hints were being dropped, sometimes they weren't. This frustration with ambiguous communication has followed me well into adulthood.

Because I have been hurt deeply by so many people (including my ex-best friend of fifteen years), I don't have the emotional energy to deal with the possibility that somebody might be "dropping hints" or otherwise not telling me something and expecting me to read their mind. When I find myself starting to become friends with somebody, I make it very clear that I expect them to be direct when talking to me or it's not going to work. Oh, what's that you say? Many people are uncomfortable being direct? Well, tough shit. Think how uncomfortable it is for me having to guess all the time. I can't be the only one making accommodations. If I am doing something that is bothering somebody, the only way I will stop and adjust my behavior is if the person tells me directly. I also need people to be direct with me when it comes to remote communication (texting, etc.) or I at least need them to explain what their habits are in how they handle remote communication. I recently had a discussion about this sort of thing with someone I reconnected with at the beginning of the pandemic.

About a year and a half ago, completely on a whim, I messaged Chuck, a counselor from my 1997 group trip to Israel. We had been on Facebook together for years but never really communicated. We talked for a little bit, and then I asked him if he wanted to video chat. I honestly didn't expect that we would be talking for more than ten minutes when we finally connected about a week later, but I just thought it might be interesting to talk to him after all these years. To my surprise, we hit it off right away, and ended up talking for an hour and a half. Chuck and I have since had ten more video calls. 

In our calls, sure, we talk about the funny things that happened during the summer that we were in Israel together. A couple times, we also laughed about how back then I had a huge crush on him and chased him around like I was Pepe LePew and was a real pain in the ass to him (my words, not his). But most often, we talk about current events, politics, religion, and science (we're both very interested in brain science). I briefly met his wife on one of the video calls, and she seems pretty cool. Chuck and his family live nearby and we're going to get together sometime after his eleven-year-old daughter is able to get vaccinated. 

There was, however, something that bothered me a little: Lately, when I've sent out invites for our video chats, I have had to follow up once or twice before Chuck responds "yes" or "no". I have been taught repeatedly, often learning the hard way, that this is the kind of hint I need to watch out for in which the other person is losing interest (and sadly, I've also been taught many times that I'm the kind of person people lose interest in). I found this confusing because Chuck has always been very direct. This was true in 1997, and it's true now. So in our last video call I asked Chuck straight out if he was trying to tell me something. I said if he was he needed to tell me directly. I told him, "I feel like a little kid who is asking her cool older cousin, 'Will you play a game with me? Please? Please?' until he finally throws up his hands and says, 'Fine! You win!'" and that it's ultimately the other person throwing the kid a bone, not playing a game with her because he actually wants to. I told Chuck that it made me feel like I was being invasive, pushy, and so forth, and I didn't want to do that. I told him that I understand that things come up, people get busy, etc., but what I really didn't understand was why taking thirty seconds to say "yes" or "no" was so difficult unless he was trying to drop a hint. 

Chuck assured me that he wasn't trying to drop hints, and that if he didn't want to talk to me anymore he'd tell me straight out. He explained that he is simply bad at following up with people, and even reaching out to them, and that lately he has been especially busy. He also said that he would try to be more respectful of my need for a concrete answer and would try to get better at giving me one, though he couldn't promise anything; he finds that when things are too busy, he's not even thinking about giving someone a simple "yes" or "no". Chuck even told me that if he doesn't respond to an invite that it's fine if I keep following up until he does, saying that he doesn't find it pushy. He said, "Look, you and I go back a long way. We have a history. We didn't start out as friends, but now we've become friends." I smiled and said, "I was a pain in your ass." We laughed about that. Chuck also said, "I love talking to you. I get a lot out of our talks, and I feel like I've learned a lot from you." He then surprised me by saying, "I've actually been giving you more of my time than most of my friends, but I'm not 'throwing you a bone.' It's out of empathy. I know that these chats are important to you and I also realize that we're in the middle of a pandemic and you live alone." I certainly don't expect him to give me more of his time than most of his other friends, but I appreciate him for caring enough to do so.

This is an example of what accommodation looks like. Chuck seems to understand how I operate and knows that I need people to be direct with me. While he admitted that he might not get better at following up to my invites, he responded to my concerns in very direct and concrete terms. He told me how he viewed our friendship and what the boundaries were. I admitted that I had been worried that Chuck was treating me differently than his other friends-- not in the understanding and accommodating way that I just described, but in the infantilizing, patronizing, alienating way that many people in my life have felt that they had to over the years. What feeds this fear in me is that it's been drilled into my head that certain people-- older and married, specifically-- are off-limits to me, that they're in this exclusive club and that any interaction I have with them will be invasive by definition. This, of course, is a chronic insecurity that I am trying very hard to undo. 

I have just provided an example of what treating someone differently through accommodation and understanding looks like. But what about treating someone differently through infantilization? It's a very fine line and will be the subject of the next post in this series.

*Yes, I realize that this language isn't inclusive to non-binary people. Remember that this video was made in the 1980s. 

**I actually think there's a better example that illustrates the absurdity of the concept of fairness that teachers and parents were operating under back then: In my discussion in Part 3 about the ubiquity and eventuality of some level of visual impairment for nearly everybody, I talked about how this "disability" was readily accommodated with glasses. Imagine a teacher telling a near-sighted student, "You can't wear glasses in class. It's not fair for you to wear them when nobody else is."

 

 

Is It Ableism? Part 2: Obvious Definitions of Ableism

In last week's post, I introduced the concept of ableism via a personal anecdote. Then, I acknowledged that it's not easily defined, and defining it requires a lot of nuance. According to Wikipedia, ableism is defined as "discrimination and social prejudice against people with disabilities and/or people who are perceived to be disabled." This is the definition at its simplest, but there's still a lot to unpack. So let's start with a very simple example that damn near everybody would agree is ableism:

In Nazi Germany and its eugenics program, people with physical and cognitive disabilities were deemed inferior and executed. However, it is pretty naïve to think that ableism is limited to such extreme and obvious examples. Just as society is becoming increasingly aware of racism being a structural issue-- as opposed to something simple and obvious like "He's a racist because he's a KKK member"-- it's important to realize that structural ableism is a problem. Often, structural ableism is the result of lack of awareness and understanding rather than intentional maliciousness. A simple example is not providing a ramp for a wheelchair user to enter a building. Or, in the case of an invisible disability, such as dyslexia, not giving a student extra help or some other accommodation. While not as insidious as Nazi eugenics, failing to make accommodations for disabled people is a genuine problem.

Structural ableism is difficult to address, but part of addressing the issue involves being aware of cultural ableism. Wikipedia defines cultural ableism as "behavioural, cultural, attitudinal and social patterns that may discriminate against dignity of disability symptoms, deny, invisibilise, dismiss special needs or may make disability rights and accessibility unattainable." This is definitely a major issue for all forms of disabilities, and I would wager probably more so for invisible disabilities.

When I was a kid in the 1980s and 1990s, the only invisible disabilities that were well understood-- to my knowledge, anyway-- were dyslexia and intellectual disability (people with the latter, of course, used to be slapped with the cringe-worthy label "retarded"). Special education classes and accommodations were increasingly available for people with these disabilities. But as for the invisible disabilities that have been a part of my life like autism, prosopagnosia, and auditory processing disorder? Forget it. Sink or swim. Missed that social cue and made a faux pas? "You refuse to take advice and you refuse to learn from your mistakes. You're not trying." Can't differentiate between two teachers with similar mustaches? "You weren't paying attention." Didn't hear the directions because there was too much background noise? Tough shit. "These other kids all heard the directions, so why didn't you? I don't want to hear any excuses." When parents and teachers said things like this to me, they were denying and dismissing my disabilities. There was just one problem that prevents me from automatically slapping on the "ableist" judgment: practically nobody was aware of autism, prosopagnosia, and auditory processing disorder back then. Of the three, auditory processing disorder was the only condition that I was diagnosed with as a kid.

While the above scenarios are definitely ableist, I strongly believe that applying this label is contingent upon whether the person passing these judgments is aware of the existence of these invisible disabilities. A teacher today would most certainly be educated on them, and if they still displayed the same attitude, it would be appropriate to call their attitudes ableist. Teachers in the '80s and '90s? Ignorant perhaps (in a "I don't know anything about astrophysics" kind of way, not in a Donald Trump kind of way). And in some cases, assholes, because on what planet is it okay to tell a child that they aren't trying?

I let my parents and teachers off the hook somewhat because the issue was largely that my disabilities were unknown and unidentified. As I noted, auditory processing disorder was the exception to this. I was diagnosed at age eight, and every year before school started, my mother told all my teachers that I needed to sit in front of the room so that I could more easily process the directions. Usually my teachers cooperated, but practically every year there was a teacher who failed to let me do that; whether because they "just forgot" or because they dismissed it as "special treatment", who the hell knows? If it was the latter, that is definitely an ableist attitude. And invariably I would get in trouble with said teacher for "not listening," which possibly reflected an ableist attitude.

Now what about less obvious cases of ableism? Well, part of that involves acknowledging that even a disability isn't always easy to define. We'll unpack that next week. Stay tuned.

Frustration, Anxiety, and Tension Part 1: You're Not Trying

On YouTube I found an illuminating interview with special-needs educator Richard Lavoie. He recalls a time in the 1970s in which he was working as a teacher at a boarding school where he also tutored a fourteen-year-old boy named Craig who had severe learning disabilities involving reading and writing. One day, Lavoie asked Craig to write a story about his dog for a homework assignment. Craig turned in the essay the next day, and the day after he showed up early to his class to wait for Lavoie. He had worked so hard, spending the evening meticulously proofreading his work while his classmates were out playing basketball, that he was sure it was “perfect” and that his teacher’s feedback would reflect that. 

But Craig’s essay was so rife with spelling and grammatical errors that there was more of Lavoie’s writing—in red pencil—than Craig’s. 

I can completely relate to the unbelievable pain, disappointment, and frustration that Craig must have felt when Lavoie handed the essay back to him. Not because of any verbal learning difficulty I had—teachers often were impressed with my writing abilities—but because of the sheer agony I often felt when I worked hard to overcome an issue that was related to then-undiagnosed autism. Often, parents, teachers, and peers would identify a social faux pas that I continually exhibited. I would work on it, feel immensely proud of myself when I thought that I had overcome it, and then find out that something I did had pissed off everybody in the room. Sometimes what I had done was related to whatever issue I had been working on. Sometimes it was something completely different that would never have occurred to me would be seen as problematic. I felt like that no matter what I did, no matter how hard I tried, it was not good enough, that there was always something I was missing—and that I had nobody to blame but myself. 

Fortunately, Craig’s learning disability was well-understood by some educators in the 1970s; at the very least, Lavoie was one of them, and he knew better than to tell Craig, “You’re not trying” and realized that Craig’s struggles were largely beyond his control. Unfortunately, in the 1980s, 1990s, and well into the 2000s, autism—and the social disabilities that come with it—were not understood at all. Autism as a “spectrum” was largely unknown in those days and not something one would dream of diagnosing an honors student—let alone a female honors student—with. Any social faux pas that I committed was potentially seen as intentional, indicative of poor upbringing, my resistance to learn from mistakes, and sometimes even that I was a bad person.

Often, it was my own parents who told me “You’re not trying.” This is not reflective of them being ignorant about “invisible” disabilities in general but rather the prevailing ignorance about social disabilities—autism—throughout the era I grew up in. I struggled with math, and almost every night my father had to help me with my homework. Dad never would have dreamed of telling me, “I don’t see you trying” in that context. He and Mom, however, sometimes said that exact same thing when I made a social mistake. If I told them I was trying, they said, “You need to try harder.”

They had no idea how hard I was trying. 

One time, during my senior year of high school, Dad even said, “You’re not done” in relation to my efforts to improve myself, further cementing my perception that no matter what I did I would miss the mark. Additionally, I felt that missing the mark was the result of not just a failing on my part, but a moral failing. There were many times in my life where I hated myself, where I felt I was a horrible person who violated other people in egregious ways, rather than that I was just socially awkward. 

Lavoie’s experience with Craig inspired him to do a workshop for teachers, using techniques that convincingly simulated the learning disabled-experience for them. In 1988, at the time that it was made, there were still teachers accusing kids of not trying and telling them to “try harder.” There was even the ignorant perception that these kids were deliberately making the teachers’ lives difficult, just like many people in my life thought I was deliberately making their lives difficult. I can only imagine what kids with severe academic learning disabilities thought of themselves if they grew up in an era in which their needs were not understood. 

I will say this though—never ever tell someone, kid or adult, that they are “not trying.” Just listen. And while you’re listening, don’t tell them that you know exactly how they feel unless you truly have had a comparable experience. Lavoie told Craig, “I know exactly how you feel” after Craig cried over his failed essay—and he admitted it was the stupidest thing he could have said to him. I also realize that I might be guilty of doing the same thing when I compare my feelings of inadequacy to Craig’s. I want to clarify by saying that I relate in terms of that the emotions are similar. But just like I’ll never truly understand what it’s like to have severe writing problems, Craig will probably never truly understand what it’s like to be autistic. 

Neither did a particular teacher I had in high school. Stay tuned.