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 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."
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