Neurodiversity’s gatekeepers

I read this yesterday, and I want to link it here because it’s so good and so important: Dr. Simon Baron-Cohen Does Not Understand the Neurodiversity Paradigm

Here’s a quote from the article:

“The Neurodiversity Paradigm says that all brains are good brains and no one is disordered or in need of a cure or treatments that work to the detriment of their personhood.” – Max Sparrow

I passionately agree with this interpretation of the neurodiversity paradigm. Unfortunately, Dr. Baron-Cohen is not the only one who espouses the view that if a condition affects one’s functioning beyond a certain point (defined by whom?), it is no longer a “difference” or part of the person’s identity, but a “disorder” to be cured by any means. I hope that the people who see it this way are in a minority, but I don’t know that they are.

Here’s another example of this type of thinking:

“Autism is a natural form of human neurodiversity. Labeling it as a “mental disorder” or a “disease” has no scientific basis, has no benefit for Autistic people or their families, and leads inevitably to stigmatization, shame, and marginalization. Blind people, Deaf people, and many other disabled people get the services and accommodations they need without being labeled as having mental disorders. We don’t have to call autism a disorder or a disease to acknowledge that Autistic people are disabled and can require accommodations. Stop worrying about the latest changes to the DSM’s diagnostic criteria, and just remove autism from the DSM entirely, just like homosexuality was rightly removed years ago.” – Nick Walker (emphasis added)

Ohhh, OK, I get it. Having autism is fine, because it’s not a mental disorder. Better take it out of the DSM so that the stigma from all those mentally disordered people doesn’t rub off on us! And if an autistic person has a comorbid mental illness, we’ll just stigmatize them for that, not for the autism.

To sum it up another way:

Blind = “Hey can you teach me to read Braille?”

Deaf = “I really admire your culture!”

Physically disabled = “Thanks for the curb cuts!”

Autism = “Natural form of human neurodiversity.”

Mentally ill = “AHHHHH HELP THERE’S A CRAZY PERSON SHARING A DIAGNOSTIC MANUAL WITH ME GET ME OUT OF HERE!!!!!!”

I think of people who think this way as Neurodiversity Snobs. They are the self-appointed gatekeepers of the neurodiversity movement. They stand at the gate, checking everyone’s credentials:

“Ah, I see you have a job and you’re married? Quirky but brilliant? Go right in.”

“Wait a minute, wait … this says you’re psychotic and frequently homeless? I’m sorry but you can’t go in. You make a bad impression and … you’re just not really our type.”

“Hi there. Looks like those accommodations in college really worked for you! Well, go in, they’re just serving the cocktails.”

“You’re intellectually disabled? Um … I’m not sure what happened but they shouldn’t have sent you here. That was a mistake. Yeah, just head over there to the Eugenics Division, they should help you out.”

Fuck that. Seriously, fuck it.

I reject any articulation of the neurodiversity paradigm that excludes certain people because they don’t have the “right kind” of neurodivergence.

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“Least restrictive”? Disabled spaces and reverse inclusion

This post is not about parking spaces (sorry to disappoint). It’s about education, and also adult social life.

Under IDEA, mainstreaming of disabled students in regular education classrooms is seen as the goal of special education. As much as possible, students are to be educated in the Least Restrictive Environment. (The least restrictive is a general education classroom, followed by a mixed or inclusion classroom, followed by a “self-contained” classroom in which all the students are disabled.) Similarly, organizations that work with disabled adults at least pay lip service to the notion of including them in community life as much as possible.

Regardless of practical shortcomings, the goal of inclusion is obviously a HUGE step forward from where we were only decades ago, when disabled people were placed in crappy institutions, often denied an education, and in other ways automatically segregated from mainstream life. And the risk of going back to that is frighteningly real. There is plenty of push-back right now from people who would like to see disabled students out of regular classrooms (for example this Alabama board of education member or our current attorney general); and cuts to Medicaid services like home nursing, which allow disabled people to live at home and in their communities, could potentially force many into institutions.

So before I go further, let’s get one thing straight: Inclusion in one’s nondisabled communities is a human and civil right for disabled people of all ages. PERIOD.

Now that that’s clear … I have some problems with inclusion as it’s currently conceptualized.

First of all, I don’t think the language of “restrictiveness” is a helpful or accurate way of looking at different educational placements. I understand where it came from historically, but I think we can do better. Instead of talking about a classroom of disabled students as a place where they are restricted or restrained, why not speak of it in terms of support and environmental modification?

The preschool Monkey attends is described on the district website as “the most restrictive” option for his age group. That’s because the majority of students who attend have IEPs. In Monkey’s class, there are slightly more kids with IEPs than typical peers. All the students are taught by a special education teacher and aide.

I really have no idea what is “restrictive” about any of this. Class size is smaller than the equivalent Head Start classrooms, meaning it’s quieter and the kids get more one-on-one attention. The school facility is quite nice, with big outdoor and indoor play areas and lots of fun sensory toys. There’s a full-time nurse just down the hall with his medications on hand, and individual and group therapies taking place in the classroom or OT/PT gym. I don’t see any of this as restricting Monkey’s freedom or ability, but the opposite: it’s supporting those things. (He loves it, by the way.) So why don’t we call it “the most supportive environment” or “the most accommodating environment”? Does that not sound negative enough?

I’m not advocating for euphemisms here. I’m just wondering how, for example, self-contained classrooms might look different if we conceptualized them in terms of “most accommodating” instead of “most restrictive”. Providing the necessary amount of accommodation for an individual student – not restricting them in some way – is what a self-contained classroom should be for. It should be for students whose needs can’t be accommodated in regular classrooms. If a student can function and learn with accommodations in a regular classroom, then they should do that. They should learn in “the least accommodating environment”! Hahahaha. (Seriously, though, I went through mainstream public school and “least accommodating environment” is a pretty good way of describing it.)

Recently, I took Monkey to the “sensory-friendly” time at a children’s museum. He enjoyed it and I did as well. There weren’t many people, they did something to the lighting to make it less annoying and there were little soothing “sensory break rooms” you could creep off to. Monkey was able to borrow noise-reducing headphones, which helped with all the white noise from the exhibits and from people walking and talking in echoey hallways. (I seriously considered borrowing a pair myself. Next time.) And all the other families had autistic members or a related disability, so we didn’t get any weird looks or feel out of place at all. It was awesome.

(But maybe I should say “restrictive” instead of “awesome”? I mean, the whole environment was modified to accommodate disabled people and the people there were either disabled or supporting a disabled person, so really … restrictive.)

What I’m trying to get at is that there are often ableist assumptions in the way we talk about inclusion. Aside from the “restrictive” language, a situation can be created where a person thinks “Hurray! I’m almost normal. I get to be with normal people.” I suspect this is especially an issue when the disability is developmental, intellectual or psychiatric, as opposed to a physical disability. If you hang out with developmentally disabled people, you can see this internalized ableism in the way they compare themselves to other, “more disabled” people in their own class or group home or community center. The hierarchy of “less disabled”/”more normal”=better is imported into the disabled community.

But if we’re not allowed to have a disabled community, a positive disabled identity, then we’re stuck with – at best – the almost belonging of being the not-too-disabled person in a room full of typical people. Which is why, while exposure to and interaction with nondisabled peers is important (after all, there are more of them, and they’re always going to be around, and some of them are even pretty cool), I think we should also encourage the formation of disabled groups and spaces, where disabled children can feel a sense of safety, pride, ownership and unequivocal belonging, where they are not the odd ones out. Ideally this would include teens and adults with disabilities, as well as younger children. And then, once this space and this community is established, there is the potential for reverse inclusion: bringing nondisabled/neurotypical peers into the disabled setting.

I’ve been in reverse inclusion settings, where I’ve been in the “normal” minority. I toured a living history museum with a group of students from the local Deaf school. I’ve been to a dance that was for adults with Down Syndrome, cerebral palsy and related disabilities (most fun dance I’ve ever been to) and other similar events. In high school I sometimes would hang out with a friend of mine and her boyfriend who were both intellectually disabled; that was an informal instance of reverse inclusion. Let me tell you: your mindset shifts when you’re the minority; when you’re not the one including them, rather they are including you.

Imagine this: what if parents wanted their typical children to get a spot in their neighborhood school’s autism classroom because it was just so great? “It’s small, the teacher’s wonderfully patient, the students all get individual attention, they have lots of hands-on learning. Oh and you should see all the cool OT equipment! I sure hope Maria gets into the reverse inclusion program!” Wouldn’t that change the way we all think about special education and disability?

I have more thoughts on this subject but I’d better stop for now. I’ll end with a quote from Ian Brown’s beautiful book The Boy in the Moon. Brown’s son, Walker, had CFC with very significant intellectual disability. The first half (roughly) of the book is memoir. The second half is really a philosophical exploration of disability, especially developmental and intellectual disability. In his attempt to understand Walker and to get inside his world, as well as to find the best residential placement for him, Brown went to France to stay in a community for disabled people called L’Arche. He also visited a similar community in Canada. Towards the end of the book, he writes:

“These days, I have a fantasy of my own. In my fantasy, Walker and people like him live in a L’Arche-like community with the help of assistants. It’s a beautiful place, in a beautiful spot, with a view of the sea of the mountains, because for once, in this place, it isn’t just those who can afford them who have access to the best views, but people who might need beauty even more, because they live with so much less. In my fantasy, this village is owned and inhabited by the disabled, on their schedule, at their pace, according to their standards of what is successful […]. In my fantasy, it is the rest of us, the normals, who have to be ‘integrated’ into their society, who have to adapt to their pace and their place.” (271)

I share that fantasy.

Why Johnny Doesn’t Flap: a problematic parody

I came across this book in the children’s section of the library last week. It’s called “Why Johnny Doesn’t Flap: NT is OK!” The authors, Clay and Gail Morton, have a son with autism and are self-described members of the neurodiversity movement.

My first reaction to this book was delight. It’s a pretty clever parody of books that attempt to get neurotypical/abled children to be accepting of those who are different (a worthwhile goal but usually condescending in its execution). It’s refreshing and funny. It takes the point of view of the autistic child, a welcome perspective shift that needs to happen a lot more. Here are a couple snippets so you get the idea:

“Johnny has problems with communication. He will say that a math test was ‘a piece of cake’ when he really means that it was easy.”

“Johnny watches the same television shows that I do, but he never recites the opening credits word for word. In fact, I’m not even sure he has them memorized. He sure picks funny things to focus on, but that’s OK.”

There is also an entertaining “Note for Parents” at the end, which informs the reader that “According to the Centers for Disease Control and Prevention, as many as 67 in 68 children may be neurotypical.”

Despite my giggling, something niggled at me. I wondered if it would be possible to write a parody that similarly shifted perspective, but took the point of view of an individual who (for example) uses an AAC device to communicate and needs assistance to use the bathroom. I got particularly stuck on this line, when the narrator laments his friend’s lack of interest in hydraulic forklifts:

“He might never be a real expert on anything, but he’s a good person, so that’s OK.”

I thought a lot about why this line bothered me and finally determined that it’s because it attempts to subvert the ableist paradigm while still accepting it. There’s an implication that the autistic character’s value is shown by his expertise in a technical subject. Intelligence justifies his divergent neurology. Where does that leave autistic individuals who are intellectually disabled?

There are definitely connections between various forms of neurodivergence and certain strains of intelligence and creativity. This is part of the beauty of neurodiversity – of the wonderfully intricate, fragile human brain in all its variation. At the same time, these connections do not appear in every individual. Not every person with schizophrenia is a math genius. Not every person with autism is a programmer. Not every person with bipolar disorder is an artist.

The individuals who have divergent neurology without associated gifts are part of the pattern in the human race that produces those gifts, produces science, poetry, etc. But that is not the substance of their worth as human beings. For that matter, it’s not the substance of worth even for people who do have those gifts. It took me a while to learn this, because for a long time I thought that my literary abilities justified my mental illness, that my value as a person depended on how smart or gifted I was to balance out my impairment. Once I realized that that wasn’t true – that I have as much value as the Nobel Prize winning novelist, and also as much value as the homeless man who recites his poems in coffee shops, and as much value as the nonverbal intellectually disabled woman who’s never written anything at all, because each of them has the same damn value – I was able to enjoy writing for the first time in years.

But back to the book. I was curious what exactly the authors’ take on neurodiversity was, so I googled and found this interview , in which they are quoted as saying: “Why do people with high-functioning autism have a disorder while non-autistic people are ‘normal?'”

Note the deliberate exclusion of “low-functioning” autistic individuals from arguable “normalcy”.

In my opinion, this is the major issue that the neurodiversity movement needs to tackle right now. There are advocates who say “The neurodiversity paradigm is for everyone, no matter how affected and impaired; it’s for those on disability benefits, it’s for those with aides, it’s for those who communicate by nonverbal means”; and there are others like Clay and Gail Morton who say, “Neurodiversity means that mildly affected individuals should be fully accepted because they don’t really have a disorder.” Those are very, very, VERY different stances.

I have major problems with the second approach. It’s actually deeply ableist (I explained why in this post). It’s exclusionary. It’s also, I think, a teensy bit delusional. (If you really can’t figure out what you have in common with those “low functioning” autistic people, then maybe stop describing yourself as autistic?)

A neurodiversity movement that excludes those who are most impaired by their neurology is just another form of elitist garbage, and I don’t have time for that.

The neurodiversity movement that I embrace, that I want to be reshaped by, that I want to tell others about, is expressed by autistic activists like Amy Sequenzia (who is nonspeaking) and Lydia Brown. Instead of seeking inclusion as neurodivergent people within the dominant, able-bodied, neurotypical paradigm, they simply reject it. They refuse to be defined by it. Anything less than that, no matter how clever or well intentioned it may be, falls short.

The neurodiversity movement: it’s not what you think

Neurodiversity is short for “neurological diversity.” Basically, it’s the undeniable reality that there are variations in the way that human brains work. These variations can have a strong genetic component, as in the case of schizophrenia, or they can be the result of a traumatic brain injury, stroke, or other event. Some, like Rett Syndrome, result from a de novo genetic mutation.

You will note that all the conditions I just mentioned tend to be disabling – indeed, can be very very disabling. This leads me to the neurodiversity movement and what it does and doesn’t say.

I have, personally, never seen neurodiversity proponents argue that neurological variations don’t bring significant challenges, that they never interfere with activities of daily living, or that all treatment should be eschewed. I consider myself a proponent of neurodiversity, and I would never argue any of those things. These arguments generally show up as straw men being machine-gunned down by neurotypical people who are against the neurodiversity movement. Certainly, any neurodiversity movement that ignores severely affected individuals in favor of quirky geniuses is not worthy of the name; but this appears to me to be the image painted of the movement by outsiders, rather than its reality.

Too often, the positions attributed to neurodiversity advocates by critics betray the critics’ own ableism. For instance, the notion that folks with [the now defunct diagnosis of] Asperger’s Syndrome may be able to justify their social impairments (and thus existence) by being gifted with computers is often presented as the essence of neurodiversity. The critic then moves on to say that there are many autistic people who self-injure and need assistance with toileting,  and who aren’t gifted with computers to make up for that, therefore neurodiversity is bunk. Q.E.D.

That is ableism at its finest.

If you don’t see why it’s ableist, let me break it down. This argument makes the following assumptions:

  • Only people who are mildly impaired, or not at all impaired, by their neurological differences are worthwhile human beings.
  • Any impairment MUST be compensated for by some sort of extraordinary talent, in order for the impaired individual to be a worthwhile human being.
  • It is impossible to accept and embrace neurological differences that interfere with speech or with toileting and other activities of daily living, or which cause meltdowns, rages, self-injury, delusions, and other behaviors that may cause harm or make others uncomfortable.
  • The neurodiversity movement can’t possibly represent the people just described, because their form of neurological difference is clearly unacceptable.

Accepting a reality does not mean sanitizing or romanticizing it. In fact, if you have to sanitize something in order to accept it, then you’re not really accepting it.

I have chronic, recurrent, severe depression. I will be the first to tell you that depression sucks. Depression hurts and can kill. I don’t take psych meds for fun. On the other hand, I used to think that there was nothing good about depression, that it was basically pure evil; ironically, this intensified my sense of doom and self-hatred. I was terrified of the next depressive episode. (Hypomania, though it can be annoying, is much easier to make a case for than depression. Unfortunately for me, I only get hypomanic maybe once a year?)

Now, having lived with this condition for well over a decade, I have more or less accepted that it’s here to stay; that I will get depressed again, and that I will recover; that there will be days I can’t get out of bed, days I can’t talk on the phone, days I can’t see the point of living; that meds help, but don’t eradicate the symptoms; and that it is ultimately impossible to disentangle the depressive aspect of my brain from the rest of it. I like my brain, overall, and it’s quite probable that if I didn’t have a mood disorder, I would be a very different person. I don’t know what the trade-offs would be, and I’m OK with not knowing.

The human brain and mind is very complex. It affects thought, perception, interpretation of reality, sense, emotion, the things that most feel like one’s “self”. This is why people are particularly afraid of mental or neurological differences and disorders – because it seems to strike at the actual self – and also why many neurodivergent folks cannot separate out the things that they like about themselves from their actual disorder. It’s all deeply intertwined. One can want to mitigate certain symptoms without wanting to completely rewire one’s brain and be a different person. One can acknowledge the real challenges – even the accompanying suffering – of a neurological difference without demonizing one’s neurology. And by the way, “disorder” and “disability” are not dirty words on one side of the room, with “neurodiversity” and “rainbows” on the other.

Critics say that the neurodiversity movement wants you to think of Asperger’s Syndrome or mild autism as a positive variation instead of a disorder. Actually, the neurodiversity movement is asking something much more radical – so radical that these critics apparently can’t process it. It’s asking for a world in which AAC is just as valid as verbal speech; in which one can need toileting assistance and still have a right to privacy; in which one can have screaming self-injuring meltdowns and still have valid opinions; in which a schizophrenic homeless person can accept or refuse medication and be housed either way; in which it’s socially acceptable to talk to your voices in a coffee shop; in which it’s socially acceptable to rock and flap in class; in which neurotypical people’s need for you to appear “normal” doesn’t constantly take precedence over everything else; in which functioning without help is not the price of human dignity.

 

Further reading:

A typical critique: https://psmag.com/im-high-functioning-autistic-here-s-what-the-neurodiversity-movement-gets-wrong-b07bca1e2c86#.gjbr2qvwc  (The author describes herself as a “high functioning autistic” but clearly thinks that “low functioning autistics” and people with mental illnesses like schizophrenia are just soooo messed up, and she will tell you why, while attributing her own stigmatizing attitudes to the neurodiversity movement she’s criticizing.)

Refreshing rebuttal to the article linked above: https://autisticacademic.com/2016/05/26/im-a-pro-neurodiversity-advocate-heres-what-our-critics-never-get-right-but-dont-bother-to-correct-either/

A couple pro-neurodiversity parental perspectives: http://www.thinkingautismguide.com/2013/01/why-did-amy-sf-lutz-attack.html and https://adiaryofamom.com/2014/09/04/what-neurodiversity-isnt/

Expectations of conformity

They start young.

Monkey is roughly two and a half right now. In the past two months he’s been through multiple medical procedures and surgeries, in and out of hospitals, which has really raised his anxiety level. His behavior in public can be … different. Sometimes it’s a problem, such as when he decides to bolt out of the building into the street while Mommy is trying to complete necessary paperwork. Other times, it’s not really a problem, it’s just different, and I realize I’m the one who needs to adjust my expectations.

Unfortunately, getting other adults to adjust their expectations is beyond my power. He’s gotten some nasty looks recently, even one deliberately nasty comment. What more commonly happens is that an adult isn’t being outright nasty, but … clearly they could use some expectation adjustment.

For example, this morning I took Monkey to his library story-time. It was the first actual outing I’ve taken him on since his surgery last week (I’m not counting urgent care as an outing). When we got there, they’d just started, so there were a lot of other kids and some noise. Monkey freaked out and didn’t want to go in; I knew I had to respect that. He’s been forced into lots of painful medical things lately, he’s still in pain (even with two medicines) and his anxiety is high. Not the time to push an experience that may be overstimulating for him. Besides, we were there to have FUN. So when he said he didn’t want to go in, I said, “OK, you don’t have to.”

Instead, he decided to sit at one of the craft tables just outside the door for story time – the door was open, so we could still hear – and color. There were supplies to make a paper turkey. DS took one of the pieces and started coloring on it.

Then one of the adult volunteers came over and told him he couldn’t color on the pieces because “Those are for children who go to story time, and you should go to story time.”

In fairness, she didn’t say it in a mean way, and she did get him another piece of paper to color on. But my head was quietly exploding. WHAT?!? My medically complex, socially delayed, possibly autistic two year old who’s been sobbing in pain the last few nights doesn’t get to color this particular piece of paper or do a craft with his mother, because … why? He wasn’t in the right room? He didn’t prove that he could sit with a crowd of loud toddlers and preschoolers and not melt down?

What this volunteer obviously didn’t understand was that Monkey was attending story time. He was just doing it from a greater distance, and with less direct participation, than the other kids. And you know what? There’s absolutely nothing wrong with that. It didn’t hurt anyone for him to attend and participate in his own way.

I let it go, because Monkey was content to color a different sheet of paper. But I wish there had been a way – simple, brief – to help the volunteer understand how wrong her perception of the situation was. How limited and superficial it was. She saw the outside of the situation, but totally failed to perceive its inner reality.

Conformity is an outward thing. It’s inorganic. It’s not the same as harmony – sometimes it’s the opposite. I want Monkey to be able to relate to his environment, and to other people, in an organic and harmonious way. But I’m afraid that other people just want him to conform, to make their own world feel simpler. And I don’t know how to change that.

Why can’t electrodes be cute? Thoughts on “This Lovely Life”

I just finished reading the book This Lovely Life by Vicki Forman, subtitled “A memoir of premature motherhood.” I’ve wanted to read it for a while, but kept putting it off because, honestly, I was afraid. I decided to read it now because a friend’s new baby and some newly emerging medical problems of Monkey’s, along with a recent procedure and a bunch of repeat tests, have triggered some things for me. I wanted some company and some catharsis.

I guess it worked in that respect, because I cried on and off (mostly on) through the first 84 pages. There was a lot I could recognize from my own experience and relate to in the book. The helplessness of the NICU, where parents are given little information and have little say in their child’s care, jarringly followed by the enormous demands on parents in the PICU/GPU when the same child is re-hospitalized. The sudden parade of therapists, nurses and social workers through your home after discharge. Amazingly insensitive nurses, doctors who don’t know what’s going on, contrasted with the unbelievable wonderfulness of finding a specialist who’s both compassionate and competent. Waking up all night to false alarms from a monitor. Developing strong preferences for medical tape. The desire to thoroughly understand the details of what the doctors are discussing. The anger. The isolation.

My son was not as premature as Vicki’s, stayed in the NICU for weeks rather than months, was not a twin whose sibling died, and is not blind. He was also my first child, and I’m not sure if that makes it easier or harder or simply different. I didn’t have an older “perfect” child (Forman’s word, not mine) to compare him to. Unlike Vicki Forman, I never had the luxury of a “normal” life to lose. She was traumatized by Evan’s and Ellie’s births. I was traumatized in early childhood and retraumatized when my son was born. She lost her sense of belonging in regular social circles. I’ve never had that sense of belonging, ever.

I make these comparisons, not because I want to suggest that one of us suffered more, but because Vicki herself makes such comparisons throughout the book. She is constantly looking at other children and their parents, including children in the NICU, and saying, “That person has it so much easier than me. My son is the most disabled child here.” And I get it. I do it too. When I read about a preemie born earlier than Monkey who was only on oxygen for a few weeks, or a child with Monkey’s type of malformation who didn’t need treatments, or whose treatments were uncomplicated or made it disappear, I feel an angry twinge of “Why?” followed by a sense of pride: “We’ve been through more than you have and survived.” These reactions are human, if not admirable.

But I was struck by the juxtaposition of Vicki’s twins’ dire situation and the privilege that had characterized her life up to that point. Although she mentions that privilege early on (“Like many privileged members of the middle class, I grew up in a family where normal was nothing short of perfect”), I wonder if she truly grasps that there are other people whose lives are marked, from childhood, by the kind of trauma and grief she never experienced until her thirties. People who can’t imagine a life free from poverty, discrimination, illness, or abuse. People for whom her “imperfect abnormal” is simply life.

Throughout the book various people, mostly doctors, keep suggesting to Vicki that she seek psychological counseling, but there is never any indication that she even takes the suggestion seriously – despite stating that she experienced posttraumatic stress and took an antidepressant (a real pet peeve of mine – it’s just wrong to prescribe an antidepressant with no therapy follow-up to someone like Vicki whose depression is entirely situational; happens all the time though). As someone with a non-situational psychiatric condition who relies on drugs and therapy, I found her dismissive attitude towards mental health care troubling.

I was also troubled and surprised by how little there was of her son Evan in the book. Yes, she mentions his smile and his laugh a couple of times, and one funny moment where he stuck his finger in his ear because another baby was crying; other than that, almost every mention of him is of how sick he is, how disabled he is, all the things he isn’t and the things he can’t do. There’s never really anything that normalizes his life and her experience of parenting him. In fact, she explicitly resists this (more on that later).

Vicki Forman is able to describe a night where she left Evan to sleep in another room, aware and perhaps willing that he might die of seizures: “I left my son’s side knowing I also left him to his fate. […] Whatever might come along to relieve me of this burden I would accept.” (195) And yet, she is unable to describe a moment of peaceful normality, to give us glimpses of Evan integrated into the family’s life, of the family adjusted to Evan. I’m not at all suggesting that she shouldn’t have written about the ugly, the socially unacceptable feelings. But what’s missing is the moments that balance those feelings out. And those moments do exist.

My son’s problems are not as severe as Evan’s, but I was a caregiver for a young woman (let’s call her Maya) who was similarly disabled – in some ways more so. While of course my experience was not and could never be the same as a parent’s, I spent 12 and 14 hour days with her, often alone with her. I tried to advocate for her. I took her to the appointment that found cancer, I performed hospice care for her, and I witnessed her death. She remains a presence in my dreams and an important person in my life.

If I were writing a memoir, I would try to describe the mornings I spent with Maya, sitting at the table in the early light, me with a cup of tea, her with a straw-sippy cup of Miralax-laced juice. Maya was freshly showered and dressed in purple. I’d carefully brushed and French-braided her hair even though I knew it would be a halo of escaping wisps by noon. The mess of breakfast was cleaned up, her roommates had gone to their dayhab center, and we were alone; the house was quiet. I read her Disney sound book and she pushed one button over and over to make the noise. She banged her cup on the table. When we’d finished our drinks, I wheeled her over to the living room carpet, spread a blanket on the floor, and laid her down on it to do her leg exercises. In the background would be music or PBS or an animated film. Maya usually looked at the floor or at her hands, but sometimes she would stare at me with her huge brown eyes. Her gaze was profound. I loved those quiet mornings with her, the rainy afternoons.

With Monkey, I can’t say much positive about the early days, I was in such a haze of shock and depression. But I could write about the later days. I could write about how he chewed on his cannula when he started teething; how at his baptism, my husband held the baby and I held the oxygen tank and the priest nearly tripped over the cord when he tried to walk between us. I could write about how his hair stuck straight up for a while, or how he used to sleep with his butt in the air, or how he used to grab our feet and try to lick them. I could write about hiking with him asleep in a carrier, the oxygen tank slung over the carrier’s straps; we’d had to check the altitude with his doctors, and I’d made sure I knew where the closest ER was, but some time after his first birthday we made it to the mountains. He crawled happily around our cabin, the pulse-ox cable trailing from his sock.

I could write about the big, fluffy dog that visited him in the pediatric unit, or the man playing show tunes on the piano in the hospital cafeteria, or the Child Life specialists who brought him toys when he was quarantined. Or the time he ran around the Child Life room pulling everything out of bins and off shelves, and I was mortified because I knew they’d have to disinfect everything he touched. I could write about rain on the hospital windows, sunrises over the city seen from my cot in his sixth floor room as I lay awake worrying.

I could write about his sleep studies, how they sent him home before dawn looking like a porcupine at a punk rock club, his hair stiff with paste, stubs of wires stuck all over his face and chest. After the hour drive home, it was all I could do to wash off the leads and the paste and give him his medicines before passing out with him in bed; somewhere in there, though, I managed to get a photo of him with wires all over his face.

“I held my son’s hand and thought about how off the definition of cute had become in our world. Cute was a smile, a laugh, a funny burp. Cute was not a bandaged head with EEG probes emerging from it.” (180)

Why the hell not? Why can’t a baby with electrodes all over his head be cute? Does she think that if she accepts the “new normal,” that if she takes a picture of her baby before his EEG because she thinks he’s cute, that she will have officially departed from respectable humanity? Why does she cling with such ferocity to her old conceptions of reality?

Why can’t there be beauty – loveliness – even in the midst of trauma? I think Forman wanted to say, in her book, that there is. She tries to say it, but she doesn’t show it. In all her eight years with Evan, was there no scene of family life or mother and son interaction she could give us that would show us beauty, humor, love, acceptance? She says that she knows now that lives like Evan’s are worthwhile; she doesn’t illustrate, for the disbelieving, that they are.

This is of course a criticism of the book, not of Vicki Forman as a person or as a mother. Sometimes the things we most want to say never actually make it onto the page.

I suppose I would recommend this book to others, with a caveat. It’s beautifully written, unflinchingly honest, powerful. The depiction of hospitals, medical bureaucracies, and the limits and contradictions of modern medicine are masterful and will be recognizable to anyone who’s spent significant time in that world. Forman has impressive retrospective insights into her own fear and denial which I didn’t really relate to, but I’m sure that many other people out there would.

The caveat is that this is not a complete depiction of mothering a disabled child, and it is not in any way a depiction of a life lived with profound disabilities. It’s really a depiction of one person’s attempt to accept that she has a disabled child. There’s a difference between grieving and struggling to accept something. Everyone who sees their child suffer and is unable to fix it experiences grief, often ongoing grief. Not everyone will have the same preconceptions and difficulty accepting a disabled child into their lives that this author had.

I actually thought, before reading this book, that the title referred to the life – or lives – of the twins. Lives both brief and marked by suffering, seemingly pointless perhaps, and yet lovely. Actually, Forman and her friend, who has a disabled daughter, interpret the phrase (which is from a poem) as referring to their own lives, their own suffering as mothers. The clearest meaning Forman is able to articulate for Evan’s life is that it taught her something, that it made her a better person.

But people like Evan, or Maya, do not exist to teach other people lessons. They just exist. They live, they laugh, they suffer, they die all in their own right. And that, to me, is what the book fails to convey.

Gender nonconformity and the social model of disability

I just finished reading the book Raising My Rainbow, which I found to be a quick and enjoyable diversion from preparing for Monkey’s latest surgery/sclerotherapy. The author, Lori Duron, has a very popular blog. Her younger son, C.J., is gender nonconforming: from an early age (before 3 years old) he has shown preferences for toys, clothing, and activities that our society generally considers to be “for girls.”

At one point in the book, a friend asks Duron if she ever feels like she’s parenting a special needs child, and she says that she does but she “feels bad saying it” (p. 128).

As the parent of a “special needs child”, I had a mixed response to this. On the one hand, there are many parallels between my experience of parenting Monkey and Duron’s experience parenting C.J. She’s certainly not imagining that; it’s part of why I enjoyed the book so much. On the other hand, her attempt to explain why she feels that way felt – to me – off base:

“Special needs kids are often defined by what they cannot do. My son cannot blend in. He cannot wear boring socks. He cannot resist having his nails painted. He cannot stop dancing when music comes on. He cannot resist the urge to strike a pose for the camera. …” (129)

She goes on in this manner. This part really rubbed me the wrong way. There is no comparison between the things Duron lists here and what my son goes through, or other children I know with medical needs. There’s no comparison between having your nails painted, and being repeatedly injected with caustic chemicals or chemo drugs under general anesthesia; between feeling compelled to dance, and being hospitalized because you can’t breathe. The actual medical aspects of disability – physical pain, medical trauma, frequent or invasive tests, dependency on specialized equipment for survival – are not part of C.J.’s or his mother’s lives.

Duron’s explanation of what C.J. and kids like my son have in common is off, but she’s right that they do have something in common – not what they can or can’t do, but the way they’re viewed and treated by society for falling outside the acceptable norm.

There are two main “models” of disability: medical and social. While some people see these as opposed, I see them as complimentary. The medical aspects of disability are real, important, and undeniable. The social aspects that follow from these medical aspects essentially create what we call disability. Most disabled people experience aspects of both these models and it’s not always easy to sort out which is which.

What Lori Duron is experiencing with C.J. is basically the social model of disability. Like parents of children with medical problems and/or visible anomalies, she has to advocate hard for her child with doctors, teachers and school officials; she has to explain her child to others; she sees people feeling uncomfortable because of her child; she loses friends; she worries (with good reason) about her child being teased and bullied.

When she talked about “superficial friends” asking questions like “Is he still into dolls? […] When do you think he’ll be more ‘boy’?” (126) it made me think of all the times that relatives (who mean well but should know better) ask me, “Will this be his last procedure? When will he be done with all the medical stuff?” In both cases the real, underlying question is: “When is your child going to be normal, according to my idea of what’s normal?” And the answer is: Probably never. C.J. will probably continue to express his gender in atypical ways, although the specifics may shift over time. Monkey will continue to have an atypical anatomy throughout his life, although it may look different than it does now and the treatments should get farther apart. They are not going to wake up one morning and suddenly be acceptable to you; you’re the one that needs to change.

This passage really resonated with me:

“[C.J.]’s taught us that you don’t always get what you expect when you are expecting. You assume that your male child will want to be male, that he’ll like traditionally male things, and that he’ll be physically and emotionally attracted to women when he grows up. Sometimes that doesn’t happen. There is comfort found in expectations, but when they are squashed when your child is three, four, or five years old, you start to question why they exist at all. You attempt to move on without expectations and try not to be jaded when people around you hold tight to the old, comfortable ones.” (251)

This is essentially the same process of expectation, disappointment, grief, and adjustment that parents of children with Down Syndrome or other genetic syndromes go through, or parents of children with autism or cerebral palsy or so many other physical and neurological differences.

The problem begins in those comforting expectations. It begins in social constructs: in the assumption that people are supposed to be a certain way. People are supposed to have a certain number of chromosomes, a certain number of fingers and toes; they are supposed to have genitals that clearly fit one sex or the other; they are supposed to identify with the gender that matches their genitalia and to like certain things based on that gender; they are supposed to get around with their legs, not with crutches or a walker or wheelchair; they are supposed to speak with their lips and vocal cords, not with sign language or an AAC device; their brains are supposed to regulate their moods, emotions, sensations, and perceptions of reality in a particular way; they are supposed to reach certain developmental stages at certain times.

But people don’t. Many of them “fail” one or more of these expectations. Based on which expectation(s) they fail, they will be labeled disabled, mentally ill, intersex, and/or a sexual deviant, and will find themselves at a continual disadvantage socially as they try to navigate a world that would really rather not acknowledge their existence. The denial of human variation is so strong that when parents like Duron and myself and others I know both acknowledge and accept our child’s differences, we are accused by others of wanting our child to be gay or transgender, or wanting him to be disabled. No parent wants extra suffering for their child.

Based on her book and blog, I think Duron is an awesome mother to both her sons and an awesome advocate for the youngest members of the LGBTQ community. At their most basic, both disability rights activists and LGBTQ activists are saying: Your idea of what it is to be human is too narrow. Broaden your idea and let us in.