Global Crisis

My son and I went for a walk in our little suburb. It's a beautiful day. These are un-retouched photos. There's a little comment at the end about parenting and disability.

We threw sticks in the water from a bridge. (Image: Boy in minion sweatshirt throwing something off a bridge).


Then we hiked down to the water's edge and threw more sticks. (Image: Same boy, throwing something from the shore).



Then we saw a deer, just a few feet away. (Image: Deer in the woods, watching us)

In fact, it was a whole family (Image: four deer, watching us).

The boy’s father came to pick him up for regular visitation but when he got there, no one came to the door. And that wasn’t typical.
The sheriff described how the father said those routine visits normally started.
“When he comes to visit, the kid comes to the door and is excited to see him,” Sheriff Tony Wooten said.
Feeling that something was wrong, the father called 911. But once inside, deputies found a devastating scene.

The headline reads: Dawsonville mother shoots disabled son, self in possible mercy killing. On the video, it reads, "Police: Mom kills disabled son, then herself." One DEK (a subheadline) read - "Murder-suicide or mercy killing?" Such rhetoric suggests that if she did it to spare the boy suffering, it's not murder.

Hey journalists - when a disabled person is murdered, the word you use is murdered. Not "mercy killing."

— David M. Perry (@Lollardfish) November 9, 2015

Yesterday I published a brief post on Flowers v. Gopal, in which some rich California folks are trying to declare a neighboring autistic child a public nuisance. I'll have more to say about the case, including answering the, "but but he wasn't a nice kid!" comments I'm getting (short version: If he didn't have autism and they wanted to sue, they'd use personal injury law or something, not public nuisance. Public nuisance law presupposed it's uncontrollable. Anyway).

Yesterday I announced that I am writing a book about the criminalization of disability in American society. Disability is not a crime, but it's treated like a crime throughout our society. I'm going to talk about policing, but also the way this mentality emerges in other aspects of society.

Here's one: Parenting while disabled.

Disabled parents are often discriminated against in all kinds of formal (i.e. state attacks on their rights) and informal (attitudes) ways. Here's a National Council on Disability report on parenting while disabled, with lots more information.

Sometimes, though, it's more useful to look at a single story. Imagine being in a custody battle, and your partner claims, in court, that your disability makes you unfit to be a parent. That's happening to Mike. Here's his IndieGoGo fundraiser, and it's been vouched for by people I trust. I don't know the details of his marriage, of course, but I do know that his fitness as a parent is not predicated on not having a disability. It's a kind of language we need to fight. 

As the case now goes to trial it is becoming clear that Mike's former partner will be using his disability against him in an effort to prevent him from gaining access and any custody. A number of her court filings contain factual inaccuracies and gross misrepresentations, including her statement that Mike is too disabled to parent his son without full-time assistance, and that his disability limits his son's life.

Parenting while disabled is not a crime.

No.

No no no no no.

Also no.

According to a piece in The Telegraph (a right-wing British newspaper. Do Not Link used here), here's how to fight body image issues among girls:  A doctor and author says teachers should ask boys to tell girls what boys find attractive. Then girls will realize that boys like girls with some fat, because of evolution and child breeding. And all the girls who fit within those new standards of beauty will feel great.

1. It is true that people find many body types attractive and that the single-type of female beauty betrayed [Edit - I meant portrayal. I'm leaving this Freudian slip in] is not the sum total of "what is attractive."

2. This is a terrible idea.

Here's the key quote:

To fight a “neurosis” amongst school girls on body fat, teachers should get boys to tell girls what they find attractive, including other qualities beyond pure looks, said Aric Sigman, author of “The Body Wars: why body dissatisfaction is at epidemic proportions”.

He said it was important that teachers picked boys from an older year group because girls look up to them and they are not direct peers so it would be easier to talk about body image issues.

“It would be helpful for them to explain that what they find attractive is not just physical qualities but also qualities like caring, the sound of a girl’s voice and her body language.

Science stuff follows.

This is fine in a way, except that it reinforces the patriarchal notion that what girls should be concerned about is to what extent they are or are not attractive to boys. Attractiveness remains the key arbiter of personal worth.

Instead, the way to fight body image issues is to de-legitimize the male gaze as the arbiter of what is and is not "good."

The notion that a girls' body exists to be attractive starts very young, the minute we call a girl baby pretty and put a pink hat on her (while the strong boy gets a blue one). I wrote about this issue when she was in pre-school, almost two years ago, on the occasion of her winning a "best dressed" award.

The other day, then, I arrived at after-school to find my daughter in a big loose school t-shirt because her pants were a little saggy. The teacher said that she "didn't want Ellie to fell uncomfortable." I guarantee you that Ellie didn't feel uncomfortable until the teacher told her that having too much of her body showing was something to feel uncomfortable about. My daughter is five. She does need to learn about privacy, but making her feel ashamed of part of her body being visible is not the way (in this case, the issue is two-fold: She doesn't have enough of a butt to hold up pants, and the tie had become snagged and wasn't re-tying).

I asked them, very politely, to let me know if there was a problem with her clothes and not to intervene directly in that way again, and discussed body shaming. And you know what, her feminist teachers were probably very upset, because they don't see the way they replicate patriarchal culture through these kinds of little micro-aggressions.

And we, of course, went out to buy more pants with better elastic waistbands.

Micro-aggressions matter. They build up over time, in tiny ways. I find the particular stresses of raising a girl in our culture to be very tiring, but I try to push back against the grain and hope it helps.

Open a new browser window and do an image search for boys. Here's what I got.




All but two images in the first four rows are, in fact, boys (there are two adult male actors in row three).

Now do the same thing for the word "girls."


It's breasts and butts and lace and sexualized poses. Around image 40 or 50 you start to get the occasional actual child (from girl clothing ads), but as far as I scroll down, it continues to be mostly sexualized images of adult women.

Now there are plenty of other issues here in terms of race and body type and so forth, but right now I just to focus on the gender and age issue. 

I spend a lot of time writing and being concerned by the constant sexualization of girls throughout their whole lives, in fact even before they are born. I call it cradle-to-grave sexism.  Every time someone makes a "better get a shotgun" to an expectant father of a girl, it reinforces the idea that the whole job of the father is to control his daughter's sexuality. Every flirty doll intended for children. Every shirt about dating or getting money from daddy or otherwise linking sexist perceptions of adult behavior to children. Every "sexy" Halloween costume for girls. It's endless. here's the word "girls" itself. There are no girls. There's no room for a girl to just be a child.

And here we see that even the word "girl" has been locked within this sexualized framework. Even the word!

And unlike when there's some sexist product we can fight or boycott or protest, I have no idea what to do here. This is not Google's fault, but rather the aggregation of use and links and imagery flung up on the page. I have no solutions today.

[Note: This post was inspired by a friend, J., who was talking about gender pronouns with her daughters, and thought Google might help. Google instead showed this].

I've been meaning to write about the story of Leo Forrest for a few days now.

The gist of the story ACCORDING TO THE FATHER is that his father (Samuel) got media attention based on the claim that Leo's mother (Ruzan) demanded Samuel choose between Leo and her. Leo has Down syndrome. Ruzan, according to the father, told Samuel that Leo would have to go to an institution - as is typical in Armenia - or she would divorce him. Instead, he is taking/has taken Leo to New Zealand, where Samuel is from. Ruzan served him divorce papers. Samuel has now raised about half a million dollars from Go Fund Me (no link provided. Google it if you want to).

Here's the dad's story, heartbreakingly written - Dad refuses to give up newborn son with Down syndrome!

Anne Grunsted wrote, quite quickly, a fantastic piece about the ways in which the internet loves a good "bad mother" story. If this was a father abandoning a child, she argued, it would get little media attention. I think she's right. Good mom and bad father stories are perceived as common, so they get little play. There's a fundamental misogyny at work in the viral condemnation of the mother.

Speaking of Ruzan, she disagrees. Her statement characterizes the choices in very different ways and casts Samuel as simply deciding, without consultation.

[Update - Also there's this story, which is that Samuel has ANOTHER family, four kids, one with Down syndrome. He divorced and then was excommunicated from his church and forbidden from seeing them (which is fine as a matter of church law, but I'm guessing not civil law?).]

So here's one conclusion: the internet is a thoroughly lousy place to figure out the intricacies of a relationship, especially one in crisis, from halfway around the world.

We are biased, flawed, creatures, too prone to leap to the heart-rending story and, in many cases, to lay our money down based on partial information.

Stephanie Hall Meredith, moreover, writes that our focus on fixing individual cases rather than structural norms, is a real problem. First she details all the structural work that she and others in various organizations are doing to help children with Down syndrome in Russia. Then she says:

Methodically shifting social paradigms with hard work is not as sexy as one gripping story, but it’s the most effective way to improve conditions internationally — by working collaboratively with individuals within these nations and empowering families there.

Alas, that's not really how our psyches work. We want to help just the one tangible case, we want to help Leo, and so that's where the attention flows, not to the slow fights for better understanding.

Leo's case, then, functions as "charity porn." We see a single family, we give them money, we feel better about ourselves, and we move on with life without examining the structural issues beneath the single case, whatever happened between Samuel and Ruzan.

So I was going to write a post about another killing, but I'm tired. My son was up much of the night (he has a cold so his breathing isn't great so he's restless and wakeful). I have a lot of work to do today despite the exhaustion. So here's something great.

My daughter got some new action figures and asked me if she could make a movie. She's read a few starter-comics, but hasn't seen the cartoons (she's never really liked the superhero cartoons) and CERTAINLY not the movie (they are not kids' movies, people).

Yesterday I had a piece in the Motherlode blog of the New York Times. I talk about the ways that parents of kids with disabilities are shamed when their children act in atypical ways. And I argue that this shame matters - that it drives parents to isolate and works against my goal of an inclusive society.

When Nico was born, I was worried about bullying and teasing from other children. I was worried about the “r-word” and other cruelties. I find, though, the real problems are the constant, subtle acts of judgment from adults. They make me feel as if we don’t belong in public spaces. Nico doesn’t feel bullied. I do.
We’re not alone. All parents of children with disabilities experience these kinds of subtle aggressions. They cause us shame and embarrassment, and lead to self-isolation.

Here are some follow-up thoughts.

One of my primary assumptions is that there are bad parents out there, but that no bad parent ever improved because of public shame. Public shaming, therefore, has no effect except to make you feel superior. So don't do it.

Asking for inclusion does not mean abandoning all norms. If you are in a symphony or say dining at French Laundry, it's reasonable to expect parents not to bring children who simply cannot function within the norms of that space. More relevant, if a child comes up and hits you or knocks over your shopping cart or otherwise causes you harm, it's reasonable to expect a parent to engage in some way. And it's certainly reasonable and appropriate for YOU to engage in some way. Believe me, though, in the case of parenting a child with disability, the parent is mortified and likely feeling helpless. Be compassionate. (Be compassionate anyway, in my opinion, but that's a separate conversation).

But those things are not what I'm talking about. I'm really talking about the kinds of episodes I relate in the piece - where my child is acting in an atypical way, is not in fact making your life any worse, but pings a need to scorn the parent who you deem is a failure, too lax, spoiling their children, etc. It happens a lot.

There are gender distinctions in the types of criticism fathers and mothers face, but I'm not sure anyone benefits from these distinctions, which is unusual. I think it's because of the nature of caregiving.

Generally, I assume that patriarchy will make life easier on men, because generally it does. In this specific instance of parenting a child with special needs, though, I'm not sure that applies. Patriarchy forces men to conform to certain kinds of norms. Caregiving is not one of those norms.

There are, though, differences. Here's my hunch on how it works. Fathers get criticized through a lens of presumed incompetence, especially when things seem to be going haywire. Our incompetence both shields us from a certain kind of judgment and means we're more likely to be interfered with by others, especially women, when they think we're doing it wrong. Bad child behavior is chalked up to our inability to function as parents. This is infuriating, of course, especially if like me you've been the primary parent for years (as an academic I have much more flexibility in my schedule than my corporate-scientist wife), as I think I'm a pretty good caregiver. But it also shields me from "bad parent" value judgments.

Mothers, on the other hand, are presumed to be natural caregivers (see again patriarchy, worse on women). This means that when their children act in an atypical fashion, they are judged as having personally failed their gender's calling. Comments about dads are - Oh, he's so overwhelmed and just doesn't know what to do! Comments about moms are - Look at that lazy mother gabbing on her phone and ignoring her spoiled brats (I literally just saw this comment on a facebook thread).

To me, that means it's more likely that dads will get certain types of interventions (like the lady in the produce section telling me to wipe my son's nose, as if I didn't know) and that moms will get judged as failures to Motherhood!

I'm not really interested in which is harder/easier, but I do think noting the distinctions is important.

What do you think?

The boy came down the hall just as I was arriving at preschool with my daughter, Ellie. In a voice filled with excitement, she said, "Michael [not his real name], come look at my new backpack! It's the Avengers!" Indeed it was, or at least the four male heroes. Thor, Iron Man, Captain America and the Hulk, in vivid color, charging forward to fight evildoers.
Michael responded with far too much skepticism for a 5-year-old boy. "You mean, you like Avengers? Or is that your brother's backpack?"
Ellie completely missed it. "No," she said, "My brother got Minions. I got Avengers!" Then she raised her arms in the air, blasting laser beams out of her hands at the bad guys, and ran off to her classroom. Evil doers, beware.

In the essay, I talk about parenting against the grain. It's not enough, I argue, to just provide choice, because all of society is telling children that they must conform, conform, conform. The process of gender norming accelerates once they start school. There is no free choice. Instead, we push gently against that dominant message, hoping to create enough space for Ellie to choose whatever she likes.

The clever reader will have noticed, "My brother got Minions." I've been repeatedly asked - what about boys? Do you push Nico towards Hello Kitty or whatever? Do you push boys against the grain too?

Off to school, backpacks rampant!

These are good questions. I, like my questioners, have the sense that a lot of people push girls towards boy stuff and push boys towards boy stuff too. Boy stuff is powerful! Girls wearing boy clothes are powerful! Boys wearing girl clothes ...?

The lack of balance reflects and intensifies the patriarchal nature of our society, rather than fighting it. On the other hand, I could never advise a parent to push a boy into a dress, because that's not a gentle parenting against the grain. That's trying to smash the barriers. The problem is that a girl in "boy clothes" is pretty standard. A boy in a dress is a target. How far should we go?

I have two thoughts.

First - "Against the grain" is about gentle pushing, not creating targets for bullying. For boys, I think, the key is to focus on behaviors. Soraya Chemaly, one of my favorite writers, writes about these issues a lot, such as in "the problem with boys will be boys." We need to enable our sons, we need to push our sons, to exhibit behaviors not typically associated with masculinity. When they cry, we need to comfort and love, not say, "boys don't cry." I think that's what parenting a boy against the grain looks like.

Second - I have no idea what parenting a boy against the grain looks like, because Nico has Down syndrome.

People with Down syndrome are by no means immune to gender norming, but Nico has very limited verbal skills. He's not getting the kind of language replication of gender norms that our daughter has been showing for years now. "Pink is a girl's color," she says. Nico is as likely to pick a pink, blue, purple, or orange bowl. Moreover, when he picks a bowl, our goal is to get him to say a two-word sentence like "purple bowl," rather than focusing on gender issues.

Moreover, our primary goal with Nico is to find things that stimulate him, and then push push push for reaction, speech, enjoyment, development, engagement. So whatever it is that grabs him, that's what we go for. We have played with baby dolls. We have played with trucks. Right now, though, it's a pretty equal balance between Frozen and Minions. You should see him stand in the middle of the room, swooping his arms around, singing to "Let it Go." I think the gender issues are going fine there.

Would I send my son to school in a Hello Kitty backpack? Absolutely. But I confess I'd be very nervous about it. Nico is already so marked as "other" by his disability and we - teachers, parents, Nico, his friends, his sister - work very hard to make sure that otherness doesn't become too pronounced. If he had picked one with Elsa, he'd be wearing it today.

But right now, Nico really likes minions.

At about 9:30 AM yesterday I got a series of texts from my babysitter. She had been tidying toys with my daughter in one of the rooms, and suddenly Nico, my son, was gone. She and Ellie searched the house, looked outside, and gradually panicked. They called the cops. They ran around. They shouted. They found Nico sitting inside the back door with dirty feet. The police showed up and everything was fine.

I did three things. I reassured my babysitter that it was ok, that it had happened to me, and that I would take steps. I called a handyman to install door chains so we can better secure our home .

Later, I called the police to talk about registering my son with them. I need to send them a picture, some ideas about where he might go if he were lost, ways of interacting with him, and so forth. I felt re-assured.

There's some irony here. I've been writing for a year about police violence and disability, usually in tones highly critical of police actions. In the meantime, I'm relying on the police to help take care of my son in case he wanders.

And that's the point. I write about police violence and disability BECAUSE my son is vulnerable to all kinds of dangers, and I need them to be there for him. 

Those are the stakes.

It was a very good writing week for me. I pitched four columns, landed three, one of which came out immediately. I also wrote a first-draft treatment of a book (more on this later once it's ready). Most fun, I did an interview and part of  a call-in show with an Australian radio program! You can listen to it here.

I actually really like Pink!

These are proto-thoughts, very rough. What do you think?

When I talk about raising girls and avoiding gender stereotyping, I often get the pushback - what if she really honestly just likes pink (or barbies, bratz, princesses, or whatever)?

It's a fair question.

My answer, again still in progress, is this. You have to be the one who works against the grain. Society is going to push "pink," using pink as a metonymy for many things, on girls. There is no honest way to just like a color/toy set divorced from it social context. Ellie, in the middle of last year, came home and demanded the pink bowl because pink was a girl's color. We talked about liking all colors and the sentiment seems to have faded, but it was a shot across the bow. It's my job, with my daughter, to work against the grain, to push back. I don't have to be balanced because society is not balanced.

Moreover, don't buy pink for any other girl. Trust that someone else is going to do it. We had Ellie's birthday party a couple weeks ago. The Barbie and Disney princess bags went to the garbage, not the re-use drawer. I apologize for nothing (my wife actually threw out the Barbie one)!

Don't buy pink for girls. Not your girl. Not any other girl.

The next question is whether we /should/ buy pink for boys if we want to work against the grain. There I am less sure. A girl without pink is not an outsider. A boy in pink is an outsider. It's about exerting modest counter-pressure versus societal, not creating kids who cannot fit in (if they want to). Which is to say that a boy who came to me and wanted pink, or a skirt, or makeup, or whatever - I say yes. But I'm not going to try to force them against the current. A girl who comes to me and asks for a princess - I say yes (you know, assuming it's gift season or whatever). But I'm not going to buy her one unless she explicitly asks.

So, how am I doing so far? What are your thoughts? Help me refine this in time, oh, Black Friday after Thanksgiving.

In my Chronicle piece on being a father, I wrote:

No one has ever questioned my work ethic to my face because I’m a father. In fact, one day I was so tired from caring for my two children—at the time a 2-year-old boy and a 3-month-old baby girl with colic—that I simply lost my ability to speak coherently in front of my colleagues. I stood up to talk at a very important meeting and nothing came out. I invoked my exhausted state, apologized, and went home. There were no consequences. If anything, my role as a working dad raised my profile within my institution, even before I started writing about those issues for CNN.

Thinking some more, I wrote the following:

In today's @chronicle piece I talk about losing my ability to speak at a faculty meeting, too tired from colicky baby & toddler. (1 of 3).
— David M. Perry (@Lollardfish) May 19, 2014

I want you to imagine how that would go over had a female faculty member lost her coherence, then blamed childcare duties. (2 of 3)
— David M. Perry (@Lollardfish) May 19, 2014

For me, the response seems to have been, "Awww, what a good father." And this is a good response. But it's definitely gendered. #workingdad
— David M. Perry (@Lollardfish) May 19, 2014

First of all, I chatted with my dean this morning about various things. He does not remember this and I'm not surprised. I also believe, very strongly, that my institution is such that if a mother had a similar moment, she would be treated very well. But we are an institution founded by nuns and infused with their culture even as their numbers decline; I'm very lucky to be in this special place.

I've been talking about academic parenting for a long time now and have heard hundreds of stories. My sense is that few feel their institutions would be so supportive; moreover, few women would have felt safe enough to say such a thing.  Likely, our hypothetical tired mother would have just sat silently, knowing herself to be exhausted, unable to risk speaking, and so her voice would be silenced.

This is male privilege - to escape consequence even after you screw up. Awww, what a good father, they say. And you know what? I try really hard to be a good father. What a good father is the right answer! The question is how do we create space so that reaction tracks across genders.

The point isn't that I got away with something; I was doing my best. It was a moment of failed work/life integration, but one of my lessons about work/life issues is that it's ok to let a ball drop sometimes.

The point is that the consequences track with privilege.

I have a new piece in the Chronicle today on being a "working dad," a phrase I intend to own and explicate a lot over the next year. It ends:

Academic dads operate with the privilege of separating their home life from their work life in ways unavailable to women. We get to be silent if we want to. We feel no need to attend sessions on the challenges of parenting—even though surely we encounter those same challenges—because they are perceived as "mommy issues." That perception is untrue yet remains a root cause of persistent gender discrimination. Female faculty members have been advocating for change for a long time; they still need more allies.

The discussion of caregiving must move beyond the discussion of motherhood. Fathers, too, need to advocate for paid parental leave, child-care assistance, flexible tenure clocks, and a culture that accepts the notion of male caregiving as normal. And they need to advocate loudly, using their privileged position as a lever to move the structures of our profession and lead the way in the broader culture.

I suggest we start by embracing the term "working dad."

I've been writing and speaking about these issues awhile now. Here's a post I wrote about the first day of the school year. It was a busy day, beginning with my wife leaving town at 4 AM and packed with so many details to work on before 8:30! At the end of the litany, I wrote:

This quotidian litany is in no way spectacular. But somehow we still live in a society in which men cleaning, parenting, cooking, etc. is not quite masculine. It's odd. I get a lot of praise for it, often couched in the terms of "my husband never ..." or "I wish my husband would ..."

This is what masculinity looks like. For me, anyway, on this Monday.

That post got the attention of the Northwestern Work/Life Office in HR and the Northwestern Women's Center, where I gave a talk. You can see a clip from it and some of my major themes at the link.

There's lots more work to do: First, to move parenting out of the conversation of motherhood. Then, to move caregiving out of the conversation on parenting. I want to be clear that this isn't a "not all men" or a "but what about men" post or theme. It's that patriarchs have to get involves to tear down patriarchy. One tiny incremental move at a time.

Anne and Bobby, used by permission

I love this phrase. I love the way it respond to the kinds of positive language that sure, it's much less hurtful than negative stereotypes, but that still flattens our kids into stereotypes. I want, I demand, that both my children have the opportunity to be whole people.


Anne writes:

When I hear, “you are a special mother,” “God bless you,” and “I don’t think I could do it,” I don’t scowl in anger or digress into the rant burning on my tongue. I mutter something about the wonderfulness of Bobby and hastily turn away, ending the awkward situation.
But don’t get me wrong, the anger is lurking.

Bobby, after all, is right there, listening to these platitudes. I give my son a constant stream of feedback: about how strong he is for having survived three heart surgeries, for how funny he is when he silly-dances, for how unthoughtful he is when he plops down in the middle of a store and refuses to walk. And most of all, how happy I feel when I am with him.

Then a stranger comes along. They only see the burden of Down syndrome and can’t imagine the abundance of what Bobby gives in our relationship. They never think that I have given up a career because I can’t bring myself to give up time with Bobby.

These comments mirror a lot of my own experiences as an active father of a boy with Down syndrome. Not the selfless part, because I haven't given up my career, but the praise of my fatherhood which reveals a sense that Nico must be an unspeakable burden. He's not. There are challenges. The challenges are different and in some ways more intense than the challenges we encounter with Ellie or people do with most neurotypical kids. Until reading Anne's essay, I hadn't quite fixated on why these remarks bothered me so much - it's not humility at being over-praised, but the image of Nico and parenting Nico that praise engenders.

Anne also links this back to her mother, pointing out that the "Selfless mother club" is a bigger issue than one might expect:

My own mother inducted herself into the Selfless Mother Hall of Fame. Eight children. Thousands of loads of laundry. Thousands more meals cooked, dishes washed. My head spins at the organization required, the creativity used in making do, the going without that both of my parents did. I respect it all, but I find it hard to ooze gratitude when my mother, over and over and over again, recounted her sacrifices to me and reinforced all the ways that I was not worthy of her gifts. She was so steeped in her pot of resentments that she could not give without demeaning me.

That sounds hard, but I think it's important to show how these issues we encounter with such sharpness in the disability community can be used to look at society more broadly.

Overall, this essay fits into the kind of writing and representation that I'd like to see more frequently.

Neither lachrymose nor saccharine, it demands that both Anne and Bobby get treated as whole people.