Is the disability rights movement different from other civil-rights movements in a critical way?

I've seen quite a few comparisons of the disabilities rights movement to other civil-rights-related movements, such as those on behalf of minority communities or women or LGBTQ folk. The one distinction I see between those movements and the disability rights movement is this: The outgroup allies in those other movements are, as a whole, not the parents of the direct actors. Women working on behalf of women's rights didn't first go through a childhood of their parents working in a defined population on behalf of their rights. African-Americans didn't go through a childhood of, say, white parents and future allies arguing with schools or government institutions on their behalf. In those movements, the allies start on the sidelines. The investment is different, the motivation is different. In the disability rights movement, parents fight on behalf of someone who is (often), quite literally, a part of themselves. Their starting point is not the sidelines, but the center.

In other words, involved parents in the disability community have a different sort of investment from these other allies for these other movements. That investment makes it more difficult to draw clear lines between the parents and the direct actors. Rather than being a part of the community out of choice, out of interest in righting a wrong--although surely that is part of it--they are a part of this community because they are literally part of its family. In the disability community, before a child can ever speak for himself or herself, that child's parents speak on his or her behalf. Parents spend years advocating on behalf of their children--disabled or not. If the child has a special need or disability, that advocacy is often a pitched battle with society and its institutions and expectations as the foe.

So, unlike those other outgroup allies who join in civil rights movements because they've seen something wrong, parents are directly, legally, vocally, and (often) genetically responsible for the people who will someday be the adult voices of that movement. That's a different dynamic completely and may explain in part why the best-intended parents feel so cut out or defensive when the direct advocates in the community view them as allies rather than as direct actors, as well. Unlike, say, a white ally of a minority civil rights movement or a male feminist, parents in the disability community have (often) been invested in specific members of the group since their birth and have (often) been fighting, sometimes tooth and nail and with much anguish, for the rights of that specific member specifically because of the special need or disability.

But wait, you say. What about the LGBTQ community? They had parents who often fought on their behalf. And I say, sure, and the PFLAG model is a good one. But here's the thing: Sexuality isn't something one manifests at birth. It's rarely something we solidify before puberty, if even then. Yes, parents who become aware of their child's sexuality can engage society and institutions on their children's behalf, just as parents of autistic children can, but that fight for autism parents begins much, much earlier, indeed often before their child can speak, read, or write for themselves. For many autism parents, it begins in their child's toddlerhood. It's been an investment in that child's entire life on behalf of that child's well being. In evolutionary terms, investment is a big word, something that takes energy and resources and is not to be taken lightly. This kind of investment isn't human-invented narcissism. Instead, forces drive it that parents often don't even know exist, forces derived from genetics and hormones and what we humans would call love.

It's hard and always will be for any parent to let go, although all parents must do so someday in some way or another. I think that after all that parents invest in their fight on behalf of a child with special needs, it may be all the more difficult to stand back when asked so that the first-person voices of the movement--the people directly-directly affected--speak first, loudest, and freely. The child whose voice you hear or read isn't an unrelated member of the human family, someone whose rights have been crushed, someone whose argument for society to do the right thing is one you support out of your own sense of right and wrong. That person is, rather, literally your child. You are the parent who has been there from the beginning, involved not just because of right or wrong but because that child--no matter how old, no matter how able or disabled, no matter how independent--will always be your child.

From that perspective, it's not difficult (for me, at least) to see why some parents feel pain when they are told that they are allies, on the sidelines. In most civil rights movements, the second-person people whose rights aren't directly involved start on the sidelines. But a parent? A parent starts at the beginning, at the core of the family unit that consists of the parents and the child. For years, they are the source of everything that child is and has. For right or for wrong, for mistakes they make and things they've done well, the well-intended parents do it for the love of their child. As with any parent-child relationship involving a loving, well-intended parent, stepping away from that, sidelining yourself as the parent, is probably one of the most difficult volitional decisions you'll ever have to make. It takes a lot more than fighting off the tears as you leave a child's dorm room on the first day of college. It takes making yourself silent for the first time in your life, on behalf of your child, so that your child, now an adult, can speak with the voice of a movement.

Listening to autistic people, no kid gloves, no muzzle

On a great blog post that was really talking about listening to autistic people, I misunderstood and posted this comment (for which I apologized to the blog owner about because it was off her real point and threatened to derail the on-point discussion).

In that comment, I was too obscure in making the following points, and I didn't want to elaborate further in that venue because I'd already put my foot in it as it was. So, I elaborate here:

1. I think that because of the efforts of autistic activists combined with our efforts as his parents, our autistic son will grow up in a world that's different from the one those who came before him had to deal with. Different in better ways, we hope.

2. Parenting is a world you can't grasp unless you're in it. And once you're in it, every comment or question that seems to hold some sort of judgment about your choices in that role becomes something that is very, very personal. These comments range from "you willfully endangered your child by having him at home" to "vaccinating your child is child abuse" to even the mildest of suggestions ("Have you tried vitamin B?" and "Did you know that Goldfish have trans fats?" (they didn't)). It doesn't really matter what the source is--we're parents, and we're touchy. It's the most invested you can ever be in another human being, in an infinity of ways. I'm not arguing that it's harder than other ways of being, just that it makes people really, really defensive.

3. About half of the rest of the world is female. Yet, I have very, very little in common with many of them. I'll listen to what they have to say about the female condition, but as my own identity is fairly complex, sometimes, what women suggest doesn't apply to me. I also get advice about what it means to be raising boys. Guess what? Some of that just doesn't apply to my sons, and I know that because I am their parent. And finally, but not least, I've received advice from autistic people about what might be going on with my oldest, autistic son,often advice I've asked for, sometimes advice I've not. The odd thing is, that's always the most welcome advice to me, of all the advice or insight I receive. I am *least* defensive about information from autistic people relative to my son than I probably am about any other inputs about parenting. And it's been so, so useful for us, and I've promised my son that autistic adults are out there, able to look back and explain a little about what he's experiencing now. Not all of that information is directly relevant to my son any more than all the suggestions I have received about my role as a woman are directly relevant to me, but it's all been enormously useful.

4. Finally, I don't have an attitude that just because someone is autistic, I need to behave in a totally different way with them than I would with non-autistic people--although in the end, I sort of do. In fact, I've found that I'm often at my most comfortable around autistic people, so I've rarely felt the need to watch my behavior or my words around people with autism, to turn on my social algorithms and "do the socially appropriate thing." In other words, I've never felt the need to put on kid gloves around autistic people. Around different sorts, say soccer moms, that's a whole different feeling for me. I don't put on kid gloves in such milieus as much as I put on a muzzle.

My observation about conflict and bringing it? I was thinking at the time what I blogged yesterday: open, candid discussion helps unravel differences and lead us to better understanding. As I've noted, I'm not so sure about that now. There are very, very bad things happening to real people because of these open discussions, and I'm starting to think that this brave not-so-new world of the Internet is literally not a safe place to open up about anything, especially using your own name, especially if you have a family.

The bottom line is this: I welcome insights about my son or that might apply to my son from autistic people more than I welcome insights from just about any other group or tribe or whatever we want to call it. I welcome insights at any time from people who have something to teach me. That doesn't mean I'm going to agree with every little bit of it, and it doesn't mean that ultimately, I won't decide to do what simply seems the best for our children, autistic or not, based on our own lights. But, at the least, on the very rare occasions that I have disagreed with autistic people, I haven't feel the need to put on kid gloves--or a muzzle.

-----------------------------------------------

ETA: Please read this blog post, which contains a concise summary of the things people say and do that make autistic people feel unheard, ignored, and dismissed. It's just about the best precis I've seen, and I will *not* forget it. I'd suggest that anyone keep them in mind.

The importance of open discussion

I am a science editor over at The Thinking Person's Guide to Autism. My role is primarily to vet things that have a sciencey bent to them to make sure they're OK. I also have another role, that of a non-neurotypical parent of an autistic child, and I help to vet other submissions from that perspective.

TPGA has been running a series this last week of dialogues. The genesis of the series was a post by a parent whose child has special needs but not autism. This parent wrote a post that some in the autism community took issue with, and ultimately, the upshot was this series of posts, an exchange between this parent--who has no previous connection whatsoever to the autism community--and two autistic adults.

As the parent's turn to post approached, this parent tweeted in a way that I interpreted meant trepidation about how meaningful or useful his participation might be. As an editor at TPGA, I felt that I needed to give him a boost, to let him know that even though the people who take the time to comment may say things he finds painful, there are legions of silent readers he also reaches, that all open discussion should ultimately lead to an unraveling of conflict into greater understanding. As in all such cases of contention, there is a small group of people who comment and who are very vocal, and a much, much larger group of people who are the silent audience.

We then had the Twitter exchange you see posted here. My intent, my thinking, even my clearly written words in this exchange have been twisted and misinterpreted into something that my years of posting on this blog and elsewhere certainly belie. I invite anyone to click on any of the tags to the right, including autism, parenting, and TH, to really learn what my investment has been, what my attitude has been and continues to be about autism and autistic people, and who I am.

Below, I provide what my thought process was as I tweeted with this parent about posting his very first post in this dialogue, in a world that was new to him, to people who were new to him. My responses to him were not remotely informed by any of my experiences with the autistic people involved in either the dialogue or the comment but instead are based in my experiences with a completely different and far more virulent world: the antivaxers. I am not comparing autistic adults to antivaxers at all; instead, I was trying to draw on my experiences of coping with people who strongly disagreed with me and transfer my coping mechanisms to some of the personal pain he might be experiencing, as he had expressed. That was the experiential context in which I responded to this parent, and I list below what my entire thought process was throughout this exchange. For the record, I have not deleted one tweet from my Twitter feed and have no intention of doing so:

1. The parent in question tweeted something that made it seem as though he weren't sure about how worthwhile this discussion might be, that instead, it might just be something that would blow up all over him.
2. I tweeted to him to say the following: open discussion is worthwhile, even though no two people in such a discussion may ever fully understand one another. I further noted something to the effect that there are many, many people not commenting and he needs to remember the audience, not only the small vocal group actually posting comments. That applies to anything in the blogosphere and is something I often remind myself of in moments of internet contention.
3. He indicated further trepidation, based on how people had responded so far.
4. I tweeted some coping mechanisms I've learned in the course of many years of acrimonious discussions in the virtual world (never before related to contention with autistic adults), which include never forgetting what your real life is all about and never forget that in the end, that it's your closest relationships that matter the most, and that no matter what anyone says about you as a parent, only you can really know the reality of it. I have had people tell me I'm a horrible abusive parent because I had one of my children at home or because I vaccinate my children. From these experiences, I know that I have to remind myself that only I can truly know the reality, as these people do not live my life. I also noted something else I've learned from my vaccine activism: Sometimes, if it's just making your head explode, you've got to take a step away and let others haggle for awhile.
5. One of the autistic adults who was participating in the dialogue on TPGA stepped in at a later point to ask where anyone had attacked anyone's parenting.
6. I responded that no one had actually said that, but instead that someone--neither the parent in question nor I--had said "I don't know, it feels like anything a parent says is wrong," and that was an intangible that couldn't be cut-and-pasted as proof. Emotions always have to be taken at face value, as they consist of so much more than tangibles or words or evidence.

That's it. I began that exchange thinking, "Oh, as an editor at TPGA, I should encourage him to go for it, to get into it even though it may be painful, and here are some ways to deal with the pain that may ensue." Why? Because I believed until today that engaging in open dialogue, especially about potentially contentious issues, is the best way to eventually unravel the problem and reach a better understanding.

The end. That's really all I have to say. It's exactly what my thought processes were. I wasn't even thinking of autism or autistic people per se but of how to deal with what feels so personal in an impersonal place like the blogosphere.

Anyone is welcome to comment here on what I've said above, but I'll say right now that I will not be engaging in parsing tweet by tweet anything in that exchange, and I will not bother to counter someone else's interpretations of what I was thinking and feeling and intending when I entered into that exchange. As someone very wise said to me recently, that's the place to draw the line, and that's where I draw it.

---------------------------------

Edited to add: I have long been a proponent of open discussion. I have long had a belief in the ultimately beneficial outcomes of it. I am now much less sure about it, although that feeling may wane.

ETA, again: Please read this blog post, which contains a concise summary of the things people say and do that make autistic people feel unheard, ignored, and dismissed. It's just about the best precis I've seen, and I will *not* forget it. I'd suggest that anyone keep them in mind.

What do people say to you when you tell them your child has autism?

The question asks it all. I've gotten different responses, but they all fit within a short...spectrum...of response, most of them related to "I'm sorry" in various permutations. I'm sure people have a hard time knowing what to say. The way the news media present it, the experiences that some parents describe, the movies that have depicted it. What would you think of to say if someone told you their child had autism and your only "experience" with it is Rain Man? (Which, by the way, says more about the time in which Hoffman's character would have grown up than it does about autism).

I never feel that pity is in order, and my struggle becomes what to say in response to it, how to convey that TH is one of the lights of our lives, one of the best people we know. It's awkward, and I've already blogged about what I think I'd like to have as a response.

But a couple of weeks ago, I got the most unusual response I've ever gotten. We were on a rafting trip with a guide named Alex. As I always do, I extracted Alex's life story from him, basically interviewing him almost the entire time we were on the raft, except during some fairly thrilling class III soakings. He's majoring in social sciences, grew up on rivers, and rafted this one with a whipcord wiriness that made us all feel pretty damned safe.

There was another couple on the boat who had two fifth graders, and as almost always happens in such situations, we got into discussions of schooling. Of course, we said we homeschooled our two oldest--who were there on the boat with us, as was our youngest boo--and Alex asked why. I turned to where he sat in the stern and said, quietly, that our oldest has Asperger's, a form of autism. I was about to elaborate on why, about how homeschooling had resolved any number of issues, going well beyond the academic, when I was stopped cold not by the chill of the Colorado River but by the unexpectedly chilled-out nature of his reply. His response? "Really? Cool."

I know that some autism parents don't see a damned thing about their children's struggles that is "cool." Alex had already spent about an hour around our sons. In fact, he'd deprived TH of his paddle because poor TH just didn't have the upper body strength (hypotonia!) to paddle effectively when that was required. Alex had picked up on various cues, but knew that we weren't representing as heartbroken or deeply anxious or concerned. And so, he said, "Cool," bless the man.

And I was pretty cool with that.

We've all got our Something

What does it mean to be neurotypical or not?

Someone told me via email that I seem to be "demand(ing) all the trappings of neurotypical privilege" in public while saying that I'm not neurotypical, and I'm wondering about many aspects of it. First, I'll establish that I am what I say I am. That means that I'm a scientist, writer, editor, mother, life partner, and friend. There are adjectives to describe me, as well, but that's a longer list, and I'll avoid both the embarrassment and the indulgence.

What I do know is that I've spent a lifetime being anything but neurotypical (I'm still not sure what that is), and I think I've made at least that much clear. As a woman--what the parsers of Victorian literature would probably call the "odd woman"--I have had my share of negative experiences related to how my brain works and my behavior, so it's odd to me that someone would describe me as "demanding" the "trappings of neurotypical privilege" in public. I've never demanded any such thing, nor, to my recollection, have I ever experienced them, whatever they are. In my mind, my experiences have been a long string of social learnings, beginning from when I was very young and continuing to today.

I didn't coalesce my feeling of oddity into an identifiable unit until I was in my 30s, but I was aware of not fitting in at least from first grade on, which was easy because my peers made me very aware of it. My social ineptitude and blindness led to considerable childhood misery that included suicidal ideation from a very young age and repeated sentimental listenings of Simon and Garfunkel's "I Am a Rock." As is common with people having my social incapacities, I found myself by junior high in a group of hooligans, struggling to fit in with them because the people who were more like me in other ways--grades, socioeconomics--would have nothing to do with me. The hooligans didn't like me much, either, and my greatest triumph from that experience is that I never ended up in juvy.

My parents, in a hyperreaction to get me away from the hooligans and the limited schooling options of my hometown, opted to send me to boarding school my freshman year, when I was 13. A very emotionally immature 13. My 13-year-old self was a mass of contradictions, like most 13-year-olds, but I was even more extreme, unable to read people, unable to tell when they were mocking me until it was too late, subject to some of the most extreme 24-7 bullying imaginable. I wandered alone in the wilds behind the school, read books I liked instead of doing my homework, and once again fell in with a group that could never be described as well behaved. And underwent systematic, methodically cruel mental and emotional torture from the girls around me. Dickens could have written my life in those 9 months and it wouldn't have been hyperbole, but the thrashings would have been mental, rather than physical.

That boarding school year sounds like a mistake, but in hindsight, I think it might have been the best thing for a girl like me. What better way for an inept to learn about social interactions among my peers than to be immersed in those interactions every hour of every day? Was I good at it? Nope. But I came out of those 9 months with an arsenal of information about how people my age thought and behaved, what drove their interactions with each other and with me, how to function among them. I'd learned that my way of association was to use social algorithms, the if-then constructs of small-talk social exchanges that I still use today. It has been immensely useful to me, and I still think of those girls in that school and how much they taught me, often by being mocking and cruel, but the lessons remain good ones.

Indeed, today, I'm so stuck in my algorithms that I'll proceed with one even if the other person's taken it off into a different algorithm. My most common error is to enter into the "How are you?" "I am fine, how are you?" exchange, assuming that the responder will provide that "how are you?" question in return. Even if they don't, I'll still respond, "Oh, I'm fine." I've never been able to tell if people notice it or find it odd, but I do this one all the time. I'm stuck in my ways now, and I can't seem to get a pause inserted into that one to make sure the question gets asked.

I still collect my algorithms, watching people exchange small talk, picking up tips and adding in bits and pieces to existing ones, but for some reason, that oldest of algorithms is one I can't modify for specific situations. If we're past small talk, I'm just genuinely Me, doing one of two things: listening sincerely and intently (which I do a lot) or talking too much, probably being overly loud or overly enthusiastic or swearing a lot. But those more superficial exchanges that come from a place of social niceties rather than being born from the gut? Algorithms.

Another problem for me is reading faces. I can remember faces better than just about anyone I know. If I haven't seen you for 20 years, I'll still probably recognize who you are and link your name and face. I can identify the most obscure actor in a movie and list that actor's previous film and television credits. But if I say something to you that's offensive, subtle facial expressions and body language--especially passive-aggressive behaviors--in response will go right over my head. I will not know I've offended unless you tell me. Then, I'll feel bad. Very bad. And I'll apologize. If a person laughs with gusto or expresses what they're thinking in honest words, I'm all good, but those subtle or passive-aggressive behaviors? I miss their implications entirely. My life history is littered with such overlooked passive messaging, and I sometimes laugh at my idiocy when I think about cues like these that I've missed. We're all dumb about something, aren't we?

People have commented to me about my behaviors throughout my life. I've got a decades-long reputation for being blunt. People say things like, "Why don't you tell us what you really think, Emily?" I've blurted out some honest observation at the wrong time and put my metaphorical foot in it. My friends and family know how I feel about hugs (and no, I don't think it's funny if someone knows that about me and then gives me a big, long bear hug. Not funny at all). And I've heard about my flat affect, including from total strangers who drive me up the wall by saying, "Smile! It can't be that bad!" when all I'm doing is walking through the mall. Which, by the way, is kind of that bad, but that's not why I'm not smiling. I won't even get started on my feelings about crowds, lights, noise, or Costco.

Then one day, shortly after I started my postdoc in my mid-30s, a resident who was doing research in the lab met me for the first time. I was in a state of high excitement because I'd just had a hilarious exchange with a postdoc from Brazil who was saying the word "urine" to me in Portuguese and somehow, I couldn't understand the cognate. So he and I were rather hysterical by the time she showed up, having finally understood each other. I tend to get sort of...edgy looking...when in the midst of high hilarity. She took one look at me and said, "Hmmm. There's something here, isn't there. You've got something. What is it? ADHD? Something." I must have had that look in my eye, that slightly manic laugh over the word "urina," and she picked up on it immediately. She, of course, must have had a "little something," too, as that was pretty much the first thing she said to me. But her comment was like the proverbial lightbulb in my mind and brought my lifetime of social experience into that light, experiences that now took shape as Something. I've never sought to have my Something named. It was simply useful and somewhat of a relief to know that it was there, recognizable for people paying attention.

In the end, we all have "a little something." Some of us have more Something than others. I don't know what the privileges are of someone who's less Something and more Neurotypical because I've never been that way. Thirty or even forty years ago, I might have benefited from having my "something" labeled, maybe, if people had understood the label and used it to understand me. We use our sons' labels to understand them and as shorthand for the world, and we advocate for them and their future in part on behalf of those labels. Labels are relevant to me but not as important as generalized perspective taking and embracing neurodiversity in all of its forms.

As for me today? The labels I use are the ones that fit my current roles: scientist, writer, editor, mother, life partner, and friend. Considering my past, considering my social struggles and my presentation as the Odd Woman, my ability to bear each of those labels is an enormous privilege to me. And that is something.

TH proposes a new holiday: Pine Tree Day

As TH is the one involved here, you have to know that somehow, plants are involved, too. His writing assignment today for homeschool was to create his own holiday, complete with symbols, how it's celebrated, and imagery. After debating over whether he should just create a holiday for himself, TH the Great, he instead opted for Pine Tree Day. As I said, if it's TH, plants will be involved.

I liked his proposal so much that I've decided to reproduce it here. Pine trees are central to our lives. I don't know what it is about them, but when I'm among them, I'm at my happiest and most relaxed. If I can see them, it's visual marijuana for me. TH shares this feeling (presumably minus the marijuana analogy), and when he was little, just diagnosed, and we lived in San Francisco, I actually included "love of pine cones" as a bonus qualification in my craigslist post seeking a nanny/therapist for him. This conifer love runs deep around here.

So, without further ado, Pine Tree Day, in TH's own words, spelling corrected:

My new holiday is called Pine Tree Day. It is on December 22, and I (T.H.) founded it. This is the representative symbol (see symbol on balloons in his picture, above). On Pine Tree Day, you can get free baby pine trees (like the one pictured). This is who celebrates it: Canada, Alaska, Wyoming, Montana, Colorado, North Dakota, and South Dakota. On Pine Tree Day, be Green. Recycle, don't litter, and most of all...don't SMOKE! Also, you can hide pine cones like Easter eggs!

Happy Pine Tree Day!