These are the latest two of these stories to make national news. There have been dozens more just in the last few years, and surely hundreds more that never caught the attention of the media.

Last year, while Stephanie Rochester was on trial for the murder of her 6-month old son Rylan because she “suspected he might be autistic,” (Rochester was later found not guilty by reason of insanity) I wrote about the context in which that murder took place:

• Disabled lives are assigned less value than non-disabled lives, and those who kill people with disabilities are routinely exonerated, excused in the court of public opinion, or assigned more lenient sentences than other killers.

• The birth, or anticipated birth, of a child with a disability is more often described as a source of fear and shame than of joy.

• Disability is framed as a tragic anomaly, a mistake, or a stroke of bad luck; rather than a natural part of human diversity.

• Many states have “death with dignity” assisted suicide legislation for people with disabilities or chronic illness, even though we fight to save the able-bodied from suicide.

• People with disabilities are systematically excluded from society so that most people don’t have to see them, empathize with them, be inconvenienced by their “special needs,” or even remember that they exist.

• The dominant narrative about children with a disabilities is that they are a tragic, marriage-destroying burden to their families.

In a culture in which disabled lives have so little value and society as a whole sympathizes with the killers, disabled children are killed by their parents, elderly people with chronic illnesses are killed by their children or caregivers, and fetuses suspected of genetic anomalies are routinely aborted — even by people who otherwise oppose abortion or desperately want children. Unlike other hate crimes, in which the perpetrators are up-front about their hatred for the victims, these crimes are often committed in the name of “mercy,” or even “love.” “I couldn’t stand to see him suffer.” “Bringing a child like that into the world wouldn’t have been fair to my other children.” “He’s happier now that he’s out of his misery.”

All of these statements are based on notoriously faulty assumptions about quality of life. People without disabilities routinely underestimate the quality of life of people with disabilities. When we try to assess the quality of somebody else’s life, our assessment is informed by a lifetime of internalized ableism. And even if we could accurately measure someone else’s quality of life, it is not our place to end it. When we intervene, provide treatment for, and fight to save most people from suicide, but encourage or even facilitate it for people with disabilities, we expose some very ugly biases about which lives are worth living.

Many people, including many among my own friends and family, believe they support “Death with Dignity” legislation. I thought I supported it myself until just a year ago, because I didn’t understand what was wrong with it. I always heard it framed as a way to offer choices to people with terminal illness. Who isn’t in favor of choices? As Harriet McBryde Johnson explains so eloquently in Unspeakable Conversations, “choices are structured by oppression.” Choices are made in context, and it’s a context that many people, even politically progressive people who are generally educated about other issues, don’t understand. Until we can agree, as a society, to provide the support that all people need to live in dignity—to provide support for living independently, support for getting out of bed in the morning, for being included in the community—we have no business facilitating “death with dignity.”

Also among my friends and family are people who told me they requested every available prenatal genetic test, and who didn’t tell parents or friends about their pregnancy until all the results were back, who worried often and at high volume about having a “healthy” baby. We’ve never discussed exactly what all that means — none of them ever came right out and said they would abort a baby with a disability, but the implication seems clear. There’s nothing wrong with wishing for a healthy baby — all parents wish for a happy life for our children, and there’s no denying that disabilities and chronic health issues make life more difficult. But being born Jewish or queer or dark-skinned or poor also makes life measurably more difficult, yet it’s no longer considered socially acceptable to propose the routine sterilization of Jews or people of color. Using genetic testing as a litmus test for continuing a pregnancy is eugenics.

When I wrote about the murder of Rylan Rochester last year, I focused on one tiny part of the cultural climate that led to that crime: the writing by parents and caregivers about the “burden” of caring for a child with a disability. This is the narrative that is given wide exposure in the media, which is repeatedly cited to exonerate the killers. It’s one tiny piece of the picture, but as a parent of a child with a disability who writes about my life on the Internet, it’s a part that seems particularly relevant to me.

There is a lot of really horrifying writing out there in the “autism parent” blogs, in which parents claim that autism has destroyed their lives, wrecked their marriages, or driven them to abuse or violence. I can’t possibly describe how much this writing angers, saddens, and disgusts me. Becoming a parent is a choice. In the moment you made that choice, you signed up for a lifetime of caring for another person. You don’t get to decide who that person is, or at what age that person learns to use the toilet, or whether or not that person might inconveniently need your care when you’d rather go out for a drink with friends.

A recent, truly appalling example of this kind of writing is Hannah Brown’s piece for the Huffington Post, 10 Things to Do After an Autism Diagnosis, published Monday in the name of “Autism Awareness.” Huffington Post Autism coverage is notoriously awful, but this one sinks to a new low for hateful, bitter, self-centered tripe. Brown advises parents to first “Ask (their) doctor for some Valium,” and then to shore up their assets since the marriage is inevitably headed for divorce. She cites, repeatedly, the urban legend that 80% of “autism parents” get divorced. Not only have these statistics been proven false by a study released (and widely publicized) two years ago, but Brown herself admits that she is aware the statistics are false in another piece published the same day on the Today Show Blog. (Thanks to Landon Bryce for the link to this story).

Let me repeat that in case it didn’t sink in: Hannah Brown knowingly and deliberately publicized hateful, damaging lies about autism divorce statistics as a way to get a story published and to gain exposure for her new novel, which is about, wait for it: women whose marriages were wrecked by their autistic children. Brown chose to spread lies about autism divorce statistics because she was rewarded for it: with money, publicity, and sympathy from a culture that believes that children with disabilities are a burden.

Congratulations, Hannah. You just made the world a little bit safer for killers like Stephanie Rochester, Elizabeth Hodgins, and Patricia Corby. You made it a little bit easier for someone to justify killing people like your son, like my son, like me. But the best part is this: 19% of all Americans have some kind of disability. If you live long enough, there’s a good chance you could be one of them. I sincerely hope that your future caregiver treats you with the dignity and respect that is absent in your writing about your own son.

Addendum: A surely incomplete list of recent killings of disabled children by their caregivers.

(Thanks to Kassiane and probably some others for the research)

DANIEL CORBY, 4 years old, drowned by his mother, 2012

TRACY LATIMER, 12 years old, gassed by her father, 1993

SCARLETT CHEN, 4 years old, drowned by her mother, July 2004

KATIE MCCARRON, 3 years old, suffocated by her mother, May 2006

FRANCECCA HARDWICK, 18, locked in a burning car with her mother, October 2007

NAOMI HILL, 4, drowned by her mother, November 2007

TOM INGLIS, 22, died after his mother administered an overdose of heroin to him, November 2008

JEREMY FRASER, 9 years old, died of recurrent leukemia after his mother withheld the medication that would have saved his life. March 2009

PETER EITZEN, 16, stabbed by his mother, July 2009

JEREMY BOSTICK, 11, gassed by his father. September 2009

TONY KHOR, 15, strangled by his mother, October 2009

BETTY ANNE GAGNON, 48, tortured to death by her sister and brother-in-law, November 2009

WALTER KNOX HILDEBRAND JR., 20 years old, died of a seizure induced by his brother’s physical abuse. November 2009

LAURA CUMMINGS, 23, tortured to death by her mother and brother, January 2010

AJIT SINGH, 12, forced to drink bleach by his mother. February 2010

GERREN ISGRIGG, 6 years old, died of exposure after his grandmother abandoned him in a remote area. April 2010

LEOSHA BARNETT, 17, starved to death by her mother and sister, May 2010

GLEN FREANEY, 11, strangled by his mother. May 2010

PAYTON ETTINGER, 4, starved by his mother, May 2010

CHRISTOPHER MELTON, 18, gassed by his mother, June 2010

RYLAN ROCHESTER, 6 months old, suffocated by his mother because she believed him to be autistic. June 2010

KENNETH HOLMES, 12, shot by his mother, July 2010

ZAIN AKHTER, 5, and FARYAAL AKHTER, 2. Strangled by their mother, July 2010

ROHIT SINGH, 7, beaten to death by his father, September 2010

ZAHRA BAKER, 10, murdered and dismembered by her stepmother and perhaps her father. October 2010

CHASE OGDEN, 13, shot by his mother along with his sister Olivia. October 2010

KYLE SNYDER, 9, shot by grandmother. October 2010

KARANDEEP ARORA, 18, suffocated by his parents, October 2010

JULIE CIRELLA, 8, poisoned by her mother, July 2011

NOE MEDINA JR., 7 months, thrown 4 stories by his mother, August 2011

BENJAMIN BARNHARD, 13, shot by his mother. August 2011

JORI LIRETTE, 7, decapitated by his father, August 2011

GEORGE HODGINS, 22, shot by his mother. March 2012

TIFFANY PINCKNEY, 23, starved by her sister. 2005

CALISTA SPRINGER, 16, smoke inhalation-chained to her bed by her father & stepmother, February 2008

CHRISTOPHER DEGROOT, 19, locked in apartment set on fire by his parents, May 2006

Almost every time I walk into my office with my bike and my raingear, somebody makes a well-intentioned comment along the lines of “I really admire you for doing that,” or “It takes real dedication to ride in this weather.” And I am always tempted to clarify that I am not that kind of biker, and that really, I ride my bike not because of some great political or environmental conviction, but because I can’t drive and I have no other way to get to work.

I stopped driving 12 years ago. I understand now that there are names for the reasons I can’t drive, like Dyspraxia and Vestibular System Disturbance and Visual-Spatial Agnosia. But back then, I only knew that driving made me very anxious and unhappy. I still have driving nightmares pretty regularly, more than a decade after I sold my car.

Tangent: I was halfway through writing this post when this awful New York Times article was published, in which the author bemoans the coming of age of a generation of autistic kids who have somehow acquired (gasp!) driver’s licenses. The article makes a variety of unsubstantiated generalizations about autistic drivers, which mostly boil down to “autistics can’t drive because driving is a social activity and autistic people can’t grok social interaction.” As many others have pointed out, lots of autistics drive just fine, and have been doing so for years. Those of us who don’t drive choose not to almost universally because of issues with motor planning, visual processing, spatial reasoning, and anxiety—it has absolutely nothing to do with the social aspects of driving. Because of this asinine article I suppose I should point out that my own reasons for not driving are not universal to all autistic people, and that I did successfully obtain a driver’s license as a teenager and I owned and drove a car without incident for nearly 10 years.

At the time I quit driving, I lived in a very transit-friendly neighborhood. It was easy to walk or take the bus anywhere I needed to go. Then I moved, and years of successive funding cuts left the bus line closest to my house with only one trip per hour during off-peak times, and no service at all on the weekends.

This is when I was forced to start riding to work. When transit service is intermittent and undependable, leaving my house five minutes late could mean arriving at work an hour late. If I ride my bike and leave my house five minutes late, I get to work five minutes late.

All those reasons I don’t drive make biking a huge challenge. I am spectacularly uncoordinated. I have terrible balance, severely impaired visual processing, and no sense of direction. I can’t accurately gauge the speed or location of moving objects. Honestly, I think I’d probably be safer not riding a bike, but I have to get to work somehow.

I did learn to ride as a child (badly, and years later than everybody else I knew), but between the ages of 9 and 30, I didn’t touch a bicycle. I know it’s a big cliché that you can’t forget how to ride a bike, because it’s part of your muscle memory or whatever. Not surprisingly, this did not apply to me. I had to learn all over again at 30, and it was just as slow and painful as it was the first time around. But I did it, and I have been riding to work for most of the last 10 years, except for the years I was pregnant.

I ride exactly the same route every day. It is less than 2 miles long, there are no hills, there are only 7 turns, and almost the entire route is along low-traffic residential streets. Before I rode it the first time, I Google-mapped the route and wrote down all the turns in ball-point pen on the back of my left hand, like a high school kid planning to cheat on a math test. I used the cheat sheet for the first week or so until I had the turns memorized.

If road construction requires me to change my route, or if my mind wanders and I miss one of the 7 memorized turns, I usually have to get off my bike and walk back to my “safe” route, because I can’t spontaneously navigate on a bike, even in a neighborhood I know very well. Too much of my brain is focused on Not Falling Off and Not Being Hit By A Car, and there’s nothing left over for figuring out which way to turn (which is a lot of work for me even when I’m just walking).

At two points on the way to work, I have to cross a busy street. For the first year I rode this route, I got off and waited for traffic to clear before walking the bike across. “All clear” for me is significantly different from “all clear” for most bikers or drivers — it means I can’t see any cars coming in either direction, no matter how far away or how slow those cars might be moving. Depending on the time of day, it can take up to seven minutes for me to find an acceptable opening in traffic to cross an unmarked intersection. After a year on the same route, I felt comfortable enough to stay on the bike and wait my seven minutes, and then ride across the street. I still get off and walk at the last intersection before work, even though it’s marked with a crosswalk and a light.

I don’t ride my bike anywhere else but home to work, and work to home. Navigating a new route would involve a huge amount of preparation, anxiety, and practice. I can’t ride up hills, I can’t ride on busy streets, I can’t ride over bridges, and I can’t carry groceries or kids with me when I bike. So I don’t use it for spontaneous trips to the store or a friend’s house.

I have never shifted gears, because that would require me to remove one of my hands from the handgrips, which I can’t do without losing my balance. This drives my husband crazy because he sees it as an inefficient use of the technology, and he frequently suggests that I get a different kind of gear-shift-thingy installed so that I could shift without moving my hands. But there are no hills on my route, so it doesn’t seem that important to me.

For the same reason, I can’t make hand signals to indicate a turn. I don’t pass a lot of cars or people on the way to work, so this rarely matters. If there is anybody else around, I come to a complete stop and wait for them to pass, and then make my turn without signaling.

I am frequently passed by other bikers — real bikers, who ride faster than 4 mph and remove their hands from the handgrips to signal and wear yellow spandex racing unitards to show they are Serious About The Sport and ride something made out of titanium that costs more than your car — and they often give me a sort of nod, like, “Hey there, fellow bicycle lifestyle enthusiast, I tip my hat to you in solidarity.” Probably they’re not really thinking exactly that, but it always seems that way to me. I usually think about shouting after them that I’m not a real biker, I’m just a fraud who can barely get from home to work without getting lost, and usually by the time I’ve completed that thought I’ve missed one of my turns and have to get off the bike and walk back to my route.

Bike culture in Portland confuses me. There are parts of it that I find appealing—the parts that represent opposition to American driving culture and capitalism and corporatism and Big Oil—but an awful lot of it really repels me. Bikes are a Big Deal in Portland in a way that might be difficult to grasp if you don’t live here. We have bike policy wonks, bike bands, bike-themed beers, custom bike-design companies, bike PACs, and thousands of artsy representations of bicycles on clothing and accessories and infant onesies. We have Critical Mass, Kidical Mass, the ZooBomb, the Bridge Pedal, Portland Sunday Parkways, naked bike rides, bike jousting, tall bikes, and the infamous Yellow Bike Project. The “car-free lifestyle” is very popular – entire families ride cargo bikes around town, or to the Oregon coast, 50 miles and one mountain range away. I regularly see parents with a 5-year-old on a tagalong, a 3-year-old in a trailer, and a 1-year-old in a seat up front.

There is nothing wrong with any of this, of course, except for the self-congratulatory evangelism that often accompanies it. Policymakers muse endlessly in public forums about “How we can get more people to get off their asses and bike.” The biking lifestyle, according to most of its devotees, is all about choosing righteousness over convenience. People in Portland love to hate convenience. We sneer at anything packaged, processed, or quick and easy; and we equate inconvenience with virtue and moral superiority. The assumption is that those who take the “easy way out” by driving or eating fast food have consciously chosen convenience over righteousness, health, and the greater good.

Of course, if you believe this you must also assume that everybody has those same choices to make, and that the consequences for those choices are the same for everyone. Missing completely is an acknowledgment that “convenience” is relative to ability and class. A three-hour round trip on public transit was an inconvenience when I was a childless 20-something living in a transit-friendly neighborhood. It’s another story entirely now that the 3-hour trip ends with a ½-mile hike uphill with two screaming kids in diapers and 35 pounds of groceries in my backpack. There is a difference between inconvenient and inaccessible, and bike enthusiasts never seem to make this distinction.

Biking requires a baseline level of physical ability. I am just barely strong enough/coordinated enough to propel my own body the 2 (flat) miles between my house and my office. The full biking lifestyle, which would involve riding up hills with groceries and kids in a trailer, is out of the question for me. And for people with more significant physical disabilities, biking at all is out of the question.

I am sick of reading self-righteous forum posts declaring that people who don’t bike are lazy, selfish, supporting American oil dependency, etc. — and that people who do bike are virtuous, healthy, more socially conscious, building a stronger community, care more about teaching their children about personal environmental impact, and on and on and on. I don’t hate most individual bikers, I just hate Portland bike culture in general. I ride a bike because it is my only viable transportation option. And I don’t bike more because I can’t.

The report cards are essentially a middle-school version of the personality tests corporations use to pre-screen potential hires (and to effectively exclude autistics, introverts, pessimists, authority-questioners, union organizers, and other neurodivergent “undesirables” from the interview process). Assessing an employee’s social communication style may be relevant when choosing candidates for a sales or customer service position, but there is no evidence that personality tests effectively predict an applicant’s qualification for, say, an engineering or data entry job. Yet approximately 30% of American companies use personality tests, in a wide variety of industries.¹

I see a lot of problems with KIPP’s attempt to assign a numeric value to children’s social intelligence. I don’t believe social intelligence can be accurately or objectively quantified, and I am particularly concerned about the way this evaluation will unfairly penalize kids with autism and other disabilities affecting social communication.

Is social intelligence measurable?

I owe most of the ideas in this section, as well as the title of this essay, to Amanda Forest Vivian’s brilliant Social skills don’t exist series (summarized in the final post: Social model of social failure). Amanda argues that social “skills” depends on context (and don’t exist outside the context of a specific interaction). Social success (or failure) is nothing more than the match or mismatch of the temperaments, interests, values, moods, and goals of the interacting individuals.

People who are routinely rejected, excluded, and bullied are often described has having “poor social skills.” Every social interaction they attempt seems to go wrong, so it must be their fault. We say “the common denominator is you,” or “If you meet one asshole, you’ve met an asshole. If you meet 10 assholes, maybe you’re the asshole.”

But as Emily at Mosaic of Minds explains (in her post Why Social Success is not a “Skill”), there is no way to separate out and measure each individual’s contribution to a social interaction. And maybe the real common denominator for people perceived as “social failures” is our society’s acceptance and promotion of bullying.

We assign the “poor social skills” label to the people who are excluded and rejected; the bullies and bystanders are inevitably the kids labeled “socially successful.” This system neatly blames the victims and justifies the bullying: socially isolated people deserve to be alone because they have bad social skills.

The KIPP report cards use three “indicators” to measure social intelligence, all of which ignore power imbalances inherent in social relationships and rely on teachers’ ability to observe and interpret other people’s behavior:

Able to find solutions during conflicts with others: Kids who are always on the losing side of the power balance are simply not in a position to negotiate the kind of solutions that I suspect teachers are looking for here. My childhood “solution” to conflict with others was to avoid others whenever possible.

Knows when and how to include others: How do you assess this for a kid who is systematically excluded by peers? You have to have something to offer: a conversation, a party, a game — something that is appealing to other people — and then you can invite others to join you. Without that, “including others” is meaningless.

Demonstrates respect for feelings of others: This one depends on teachers’ ability to guess at the intent behind behavior and body language (what counts as a successful “demonstration”?), and is subject to misinterpretation and abuse. Neurotypical teachers will inevitably misinterpret autistic behavior more frequently than the behavior of NT kids, because they are less likely to understand it.

When middle school teachers assign social intelligence scores, they are not using laboratory observation to quantify thousands of individual social interactions. They will most likely assign high scores to the kids with a lot of friends; the ones who appear likeable, popular, and charismatic; the ones whose temperaments and social communication styles mesh best with the style of the teachers doing the evaluating.

Teachers, like everyone else in the world, come to the table with some amount of unexamined racism, sexism, classism, and ableism. Many are completely ignorant about neurological differences that affect social communication. The best we can hope for is that teachers work to become aware of and acknowledge their biases. But I don’t see any evidence that that’s happening in a systematic way in the schools implementing character education programs.

Even if we could objectively measure social intelligence (or any other “character trait”), should we?

KIPP school administrators’ justification for the character education program is that “character” is a good predictor of which kids will finish college. KIPP schools in New York serve low-income kids; the student body is 95% African American or Latino. These kids face significant barriers to college entrance and completion, and some research shows that students with high grit, optimism, and social intelligence scores are more likely to get a college degree.

I have no doubt that this is true. The kids who are likely to be assessed as “socially intelligent” are the ones at the top of the pecking order (within this group of low-income students of color). This is inherent in the way “social intelligence” is defined. The kids with poor social intelligence grades are at the bottom. They might be fat, or queer, or disabled, or ambiguously gendered; they might speak English with an accent or show other evidence of imperfect cultural assimilation; they might have physical or behavioral peculiarities that mark them as outcasts. At school, they are bullied by classmates and teachers. Outside of school, they are bullied by cops, health care and social service gatekeepers, random people on the street, and often their own parents.

These kids are less likely than their peers to complete college, not because they have poorer “social intelligence” or some kind of character flaw, but because they are victims of additional layers of institutional oppression, beyond the race and class oppression they share with their classmates.

Character report cards contribute to a feedback loop: kids who are incorrectly labeled as having “poor social intelligence” are already struggling. They are then further penalized when the report card is passed on to college admissions departments or potential employers. Codifying and assigning a grade to these traits just reinforces existing discrimination.

What might character assessment look like in practice?

As a high school student, I was never diagnosed with anything other than Bad Attitude (or Emotional Problems, if people were feeling generous). But my perpetual flat affect, poor eye contact, social isolation, and notable lack of school spirit would have guaranteed me a failing grade on the KIPP character assessment.

Although I’m mostly concerned with the “social intelligence” part of the assessment, I also scored my middle school / high school self on a few other KIPP character traits:

Zest (“Actively participates, shows enthusiasm.” This one seems to be code for “extroversion”): Fail. I slouched, sat in the back row, spoke in a barely audible monotone, and avoided participating whenever possible.

Curiosity (“Asks and answers questions to deepen understanding”): Fail. I never asked questions in class, because I am introverted, have a high level of social anxiety, and am rarely able to find an opening in the conversation. None of this has anything to do with my level of curiosity.

Optimism (“Believes that effort will improve his or her future”): Fail. While I agree that effort matters, even my 13-year-old self knew that it mattered much less than everybody pretended it did. Grading kids on their belief in the “bootstraps” myth of American class mobility is another way to say that anyone who fails just didn’t try hard enough.

If you fail an employer’s personality test, you don’t get hired. Students who score poorly on a character report card still have to go to school every day. But now they are subjected to a specific curriculum that aims to improve their “character flaws.”

Many of these “indicators of poor character” are hard-wired aspects of personality (introversion, pessimism, social anxiety) or coping mechanisms (my tendency to hide in the back row, my aversion to pep rallies and team projects) developed over a lifetime of social rejection.

No amount of “turn that frown upside down” will make an introvert into an extrovert. Threats of job loss or academic failure may inspire some people to fake optimism and enthusiasm, but they do nothing to fundamentally “improve” someone’s character. On the contrary, these threats hurt kids’ self-esteem and spark long-simmering resentment of authority. Anyone forced to fake it finds ways to rebel beneath the radar.

For people like me, “social intelligence” report cards are a bad idea. They reinforce existing power imbalances and load an extra layer of discrimination on kids already at the bottom of the pack.

Who benefits from character education?

The two schools compared in the New York Times Magazine story present very different justifications for their character education programs. KIPP schools serve poor students of color, and KIPP administrators believe that character education will help these kids complete college.

The other school implementing the program is Riverdale, a private prep school for the very rich (pre-K tuition starts at $38,500 a year). The title of the article (What if the secret to success is failure?) refers to the Riverdale headmaster’s concern that rich kids have too few opportunities to fail. Their success is preordained by their race and class privilege, but they lack a sense of accomplishment and the ability to recover from setbacks.

Character education, the theory goes, might help rich kids learn “grit” by introducing some contrived obstacles (such as receiving a less-than-perfect score on a character report card). The headmaster believes that learning to bounce back from failure is a more important skill for lifelong happiness than anything in Riverdale’s elite academic curriculum.

This may be true, but the possibility that Riverdale students may lack some sort of self-actualization despite their near guaranteed academic, financial, and social success does not strike me as the most compelling problem of our time. I can’t support an educational experiment that marginally increases the happiness of a tiny group of elite prep school students while heaping additional discrimination on neurodivergent kids of every color and class. And yes, I’m aware that I just lost some zest points for that attitude.

1. The Autistic Self Advocacy Network is investigating employers’ use of personality tests to screen job applicants as part of applications for employment and the broader hiring process. If you live in the United States and have recently been turned down for a job that used personality tests as part of the application process, please share your story here.

A lot of the writing on this theme is blatantly offensive and inexcusable (people with disabilities are a burden, are ruining my life, are keeping me from living the life I was supposed to have, etc.) A less hateful version includes the writing about how painful it is to watch the suffering of someone you love.

Writing about a difficult, isolating experience can help other people feel less alone. I did a lot of this kind of writing when I started this blog. Many people find catharsis and community in writing about their struggles as a parent.

But I am not interested in catharsis or community for one group at the expense of another whole community’s safety, and I have come to believe that a lot of the caregiver angst writing contributes to an unsafe environment for people with disabilities. There’s always a way to write about your life without reinforcing damaging ableist attitudes — as long as you (1) think through the ways in which ableism informs your experience as a caregiver, and (2) take the time to put your experience in context when you write about it. Unfortunately, most of the writing I’m talking about (including much of my own writing from a year ago) does neither.

s.e. smith’s recent essay on Pity Porn and Social Responsibility helped me understand why the lack of context to most caregiver angst bothers me so much: it reframes societal problems as individual problems.

smith uses the example of a newspaper’s charity fund appeal for a “family in need.” The story includes photos of sad hungry children, and at the end it asks readers for a donation for food or Christmas gifts. But it does not examine the societal problems that lead to food insecurity—hunger is framed as an individual problem with an individual solution. Give some cash, and then disengage.

Most parenting blogs are not fundraising appeals or advocacy writing. But they are full of personal narrative—lots of story, very little context. Most of them are not in the business of social analysis, proposing solutions, or issuing calls to action. It’s a different writing style, and it has a different formula and different goals.

There is nothing inherently wrong with personal stories, of course. But the cumulative impact of all these stories without social context is to reinforce the dominant narrative about what it’s like to care for someone with a disability.

Context is the difference between saying “I’m exhausted,” and ”I’m exhausted because our HMO offers no services for pediatric mental health, but forced me to fill out reams of paperwork and wait months to get appointments with a dozen gatekeepers, each of whom is 90 minutes away from me on public transit, just so they could tell me they actually don’t provide those services anyway.”

The first statement (“I’m exhausted”) describes an individual problem. It ignores the role that institutional structures play: a health care system driven by profit; an educational system designed for the able-bodied and typically-wired; an economic system that assigns zero value to the work of raising children and requires parents to work for pay to survive; the segregation, exclusion, and resulting invisibility of people with disabilities, which frames disability as a rare and tragic stroke of bad luck rather than a normal part of human diversity; the American belief that everyone “deserves” a life free from the “burden” of caring for another person.

These are collective problems, societal problems, and my exhaustion would not exist, or would at least be very different, without them. When I write about exhaustion without acknowledging that context, I reinforce a particular set of beliefs about people with disabilities—ideas that are damaging, dehumanizing, and already way over-represented in the media. It’s the set of beliefs used to justify the abortion of babies with Down syndrome and the abuse and even murder of children with disabilities, because it is widely perceived to be “so hard, so painful, such a burden” to care for them.

I am not placing the blame for Stephanie Rochester’s murder of her son on negative writing about autism on parent blogs. It’s much more complicated than that, of course (more here and here). Stephanie Rochester was struggling with mental illness, and untreated postpartum depression likely played the biggest role. But the context surrounding the murder includes all the societal problems I described above, and caregiver writing that does not examine that context contributes to the problem.

And so, back to #youmightbeanautismparentif on Twitter—the ultimate no-context medium.

Not every tweet was offensive. Some parents had positive, goofy, sweet, or proud things to say about their kids. But a very unscientific random sample over the course of just a few hours also included these:

• #youmightbeanautismparentif you worry about the toll caring for your child 24hrs a day FOREVER will have on your marriage
• #youmightbeanautismparentif you say TGIM instrad of TGIF
• #youmightbeanautismparentif Ur child is non verbal, and when you hear other autistic kids speak, u wonder if you drew a short straw :/
• #youmightbeanautismparentif you cracked a front tooth when you clenched your teeth to avoid yelling at your kid who was on your last nerve
• #youmightbeanautismparentif You never think you’ll be partnered again because no man will want to take on the extra responsibilities of Autism
• #youmightbeanautismparentif you’ve given up hope of a full night’s sleep
• #youmightbeanautismparentif you’ve stopped buying things for your house because you know whatever it is will be wrecked within an hour
• #youmightbeanautismparentif watching your 3 1/2 year old flap breaks your heart

This last one, in particular, desperately needs some context. There is a big difference between saying “It breaks my heart that my child is autistic” and “It breaks my heart that my child—who is perfect exactly the way he is—will grow up in a world that sees him as less than human; that will define him by his “deficits,” rather than his strengths; that will bully and shame him into modifying his behavior; and that will force him to internalize judgments made against him until he loses his sense of self.” But without context, this tweet will almost certainly be read as “I’m sad that my son is autistic, because that’s an inherently sad state of affairs.”

I know lots of parents felt a great sense of community from the Twitter exchange. The positive tweets probably outnumbered the negative ones; I didn’t have the stomach to read and count them all. But I don’t feel a sense of community from a group of people venting about how awful it is to have a kid like my son, about how autism has ruined their lives. It makes me sad, angry, alienated, and confused about whether there’s a place for me in that community at all.

The solution is not to gloss over, sanitize, or stop writing about difficult times. Everybody has bad days, and we all have the right to describe our experience. But I have come to deeply regret my own past failures to examine the context behind those bad days.

What I’ve learned from my mistakes is that I’m no longer interested in reading or writing about exhaustion, stress, and grief without also addressing the context that gives rise to these feelings. Context places blame for our struggles squarely where it belongs, and eliminates the possibility that it will be mistakenly assigned to our children.

The medical model felt counterintuitive at first; I had always thought of mental illness as a reaction to life experience. When I was depressed, I believed it was because I was poor, because I didn’t have a boyfriend, because something bad was happening in my life. I had to consciously train myself to remember that really, I was depressed and anxious because my brain was wired wrong.

Years of cognitive behavioral therapy drilled the medical model into me. A string of therapists criticized “I’m depressed because of x event in my life” as a cognitive distortion. The “right” way to think about it was in terms of neurotransmitter levels—depression was a disease of the brain. My sister and I share many symptoms, which helped me accept that our mental health issues were the result of genetic brain wiring.

But the reductive medical model—the idea that neurological differences are exactly like physical illnesses and should be treated as “brain diseases”—is really a little bit of science and a whole lot of metaphor. Nobody understands brain chemistry well enough to completely explain human emotions and behavior. Theories about the causes of mental illness are products of culture, and they shift over time even within the same culture.

Today, mental health practitioners generally agree that biology plays some role, but so do life circumstances such as trauma, abuse, poverty, and physical illness. Yet our primary metaphor for describing, understanding, and treating psychological distress is the medical model. Our vocabulary (pain, suffering, symptoms, pathology, illness, diagnosis, treatment, recovery) is drawn directly from our understanding of physical illness.

NAMI touts the medical model as a way to destigmatize mental illness. NAMI’s mission statement reads, in part, “mental illnesses are no-fault, biologically based, treatable, and may eventually be curable.” They got the “no-fault” part right, but arguing that mental illness is no-fault because it is biologically based is an unnecessary leap. Wouldn’t mental illness still be “no-fault” if it were entirely the result of trauma? Wouldn’t psychological distress and neurological difference be “no-fault” even if we didn’t frame them as illness?

In America we stigmatize all illness: Diabetes? Your fault for eating so much junk food. Cancer? Quit smoking, already! The word disease connotes contagion, rot, uncleanliness, and moral inferiority. The stigma associated with mental illness is even more insidious, because it’s bound up with personality and identity. People with mental illness are “just not trying hard enough;” they’re “overreacting;” they need to “buck up.” This stigma discourages sufferers from seeking support, informs public debate about funding services, and marginalizes and dehumanizes people with neurological differences.

So decreasing stigma is a noble goal. But this fascinating New York Times article (The Americanization of Mental Illness, via Amanda Baggs) presents evidence that the medical model actually increases stigma. The author cites a study in which subjects were more willing to administer electrical shocks to people said to be suffering from “brain diseases” than to people who suffered from a mental illness because of “things that happened in [their] childhood.” This is a very powerful argument against referring to neurological differences as “diseases.” When metaphors have a measurable effect on the way people are perceived and treated, we ought to choose them carefully.

The medical metaphor often fails on a practical level. Observation of psychological distress in another person is not like a bacterial culture or an X-ray. Diagnosis is highly subjective, is affected by the practitioner’s cultural background and biases, and depends on the patient’s ability to communicate verbally. Much of psychiatric diagnosis is a description of observed behavior, which begs questions about who does the observation, how the norm is defined, and who decides which behavior is non-normative.

In America, mental health treatment usually involves medication. But the metaphor breaks down here too. Antidepressants and anti-psychotics are not like antibiotics. Psychiatric medications work differently on different people in different circumstances, and culture determines their use and perceived effectiveness. Choosing the correct drug and dosage usually requires trial and error for each individual. When medication relieves suffering, it is useful and welcome treatment. But psychiatric medication is also used to suppress non-normative behavior. In this case it is not medical treatment; it’s a tool of social control.

I don’t believe in spirit possession. But the New York Times article argues that in cultures in which this belief is widespread, people who experience mental illness are treated with more dignity and humanity, are more likely to stay with their family and community, and have better long-term outcomes than people whose treatment follows Western medical protocol. The relative stigma attached to the two metaphors is part of the explanation: spirit possession is temporary, and “brain diseases” are perceived as permanent.

When my son’s panic attacks began, my first instinct was to look for an environmental cause. I spent several days convinced he was afraid of the beach, because the first attack happened while we were on vacation. When we returned home and the panic continued, I remembered — oh yeah, I’m doing it wrong again. I should be thinking about brain wiring. Thus began an exhausting trek through our HMO’s mental health service delivery system. At the end of it were several psychiatrists offering anti-anxiety pills.

After some consideration (I’m not opposed to medication on principle, and have seen it work effectively for anxiety in other family members), I decided against it. My son, at the time, was three years old and weighed less than 35 pounds. I couldn’t find any long-term studies on safety or effectiveness of anti-anxiety drugs in kids his age, much less any thoughtful dosage recommendations. By the time we clawed our way far enough into the bureaucracy to see an actual doctor, the attacks were less frequent and more manageable, so it didn’t seem worth the risk.

Each doctor we saw offered a different diagnosis. The most ridiculous was “disruptive behavior disorder,” proposed because my son’s response to his anxiety often involves verbal and physical aggression. The doctor who suggested it seemed shockingly uncurious about the underlying psychological distress that drives the behavior. Defining suffering strictly in terms of the way it inconveniences other people is callous, unimaginative, and not very useful. “Disruptive behavior” implies a willfulness, an agency, that I just didn’t see in the involuntary thrashing of a frightened three-year-old.

The panic attacks recurred daily for a month, then tapered to a few a week, and then disappeared. Neurological difference may be hard-wired, but symptoms are transient. In the same person, over time, they can range from completely disabling to nonexistent. Partly because of their transience, the panic attacks remind me of a weather system; a storm that came through and then moved on. We have some understanding about what causes extreme weather — but we can’t prevent it, or even predict it with much accuracy. And like most psychological suffering, our ability to predict and control it is less important than how we cope with it.

Ultimately, I realized that understanding the cause and finding the right name for the “illness” didn’t matter. What’s most important is how we respond in the moment of distress. What worked in my son’s situation was not a pill or magic “cure,” but helping him find ways to soothe himself — to acknowledge and accommodate the anxiety rather than try to suppress it. The next time a storm comes through, we will both be better prepared.

Free to Be… You and Me is all about being comfortable with your identity, as long as your identity is entirely defined by your place on a one-dimensional gender continuum: it’s OK to be a boy who cries or a girl who plays sports and doesn’t marry. It has nothing at all to say about being OK with your sexuality, race, class, ethnicity, ability/disability, or neurology. And it’s hard to read or sing it to my kids now without thinking about all the things it leaves out.

“Mommies can be almost anything they wanna be. (They can’t be grandpas, or daddies).” 

I suppose an acknowledgment that transgendered people exist is too much to ask of a children’s book published during the Nixon administration. But each time I sing this song to the kids while reading along in the book, my son asks why I skip the line (They can’t be grandpas, or daddies), and I fumble through an explanation about some people being called boys but they don’t really feel like boys on the inside… and usually end up just drifting off awkwardly before skipping to the next verse. My kids are 2 and almost 4, and their understanding of the interplay between sex, gender, and gender identity is limited to occasional questions about whether or not ______ (insert name of person, snack food, or home appliance) has a buh-gina.

Of course, I can’t depend on a children’s book to cover all of this. And I am grateful for the parts that Free to Be… You and Me got right. My kids have never even heard anyone say “dolls are for girls” or “boys don’t cry” outside of this book, and I know I have second-wave feminists to thank for that. Our culture has changed in the last 40 years — not because of the book, but because of the social movement that created it. The magnitude of that cultural shift is apparent when I notice how tame and outdated much of the content in Free to Be… You and Me sounds today, no matter how radical it may have seemed in 1972.

The Neurodiversity movement is just gathering steam, and has a long road ahead of it before it produces a Free to Be… You and Me of its own. Autistic activists are still fighting for some pretty basic things (such as universal recognition of their humanity and right to live in dignity), and they’re starting in a much deeper hole than the white middle class women who were the primary beneficiaries of the relaxation of gender role enforcement of the 1960s.

November 1 is the second annual Autistics Speaking Day. The event is both catalyst and distribution channel for a new body of writing about what it’s like to be autistic. The participating writers and activists are building a civil rights movement, and they’re also stockpiling cultural capital in the form of blog posts, books, interviews, art, videos, music, and comics. Some of them will, without question, write the Free to Be… You and Me of the Neurodiversity movement one day. But most of them have bigger things on their plates right now, like fighting for the right to self-determination; or advocating for access to employment and housing and medical care and education.

Like every other movement for civil rights, the Neurodiversity movement will make progress over time. One of the best things that I got out of the Parent/Self-Advocate Dialogues hosted last month by the Thinking Person’s Guide to Autism was a list of concrete things that neurotypical parents can do to be allies to that movement and make sure that progress happens sooner:

• Make it our job to learn about autism. Avoid assumptions. Ask questions.
• Remember that behavior is communication. It is just as important for us to learn our children’s language as it is to teach them ours. When neurotypical people engage in conversation with someone with a communication disorder; the burden should be on us to meet them more than halfway to make communication work.
• After we listen to and absorb what autistic people have to say, boost the signal. Demand a seat at the table for autistic adults when we participate in disability rights organizations. Don’t sit back and allow parent voices to dominate.
• Correct misinformation and stereotypes about autism and autistic people every time we have the opportunity.
• Identify and work consciously to eliminate ableist thought patterns and language.
• Question autism therapies for our children, and reject any that prioritize modifying our children’s behavior only to increase the comfort of neurotypical people.

For those whose primary source of autism information is the mainstream media, a lot of today’s writing by autistic activists will seem radical, or even shocking—because it challenges the dominant narrative about autism so profoundly. But by the time my kids are my age, I hope the writing that seems radical today will sound as quaint and outdated as Free to Be… You and Me does in 2011. Non-autistic allies can help that cultural shift happen by listening, advocating, and speaking out.

Some of my favorite posts by autistic writers (writing not connected to Autistics Speaking Day)

• The Self-Advocate/Parent Dialogues, Day 8 by Amanda Forest Vivian
• Why I Dislike Person First Language by Jim Sinclair
• Neurodiversity, Self-Determination, and the Magic Pill by Rachel Cohen-Rottenberg
• Don’t Mourn For Us by Jim Sinclair
• Am I More Than My Autism? I Refuse to Answer the Question by Rachel Cohen-Rottenberg
• Dear “Autism Parents” by Julia Bascom
• Quiet Hands by Julia Bascom

Some of my favorite writing from last year’s Autistics Speaking Day. I’ll update this list with new posts after November 1.

• Speaking My Mind and Heart by Rachel Cohen-Rottenberg
• Autistics Speak Day by Kassiane Sibley
• Autistics Speaking Day Post by Amanda Forest Vivian
• Autistics Speaking Day 2010 by Elesia Aschkenasy
• Reflections on Autistics Speaking Day by Ari Ne’eman
• ASD: Autistics Speaking Day by Melody Latimer
• 25 Things I know as an Autistic Person by Corina Lynn Becker

A quick summary of the way-too-long post that follows: If the word’s power to hurt, shock, or amuse stems from its association with an oppressed group of people, then when you use it, you are announcing to the world that you are an asshole. This is true regardless of whether the meaning of the word has been generalized over time, or if you “don’t mean it that way” when you use it.

Every time you use lame to mean disappointing, ineffective, uncool, or unoriginal, you are being an asshole. A disturbing number of people still think it’s totally fine to use the word r*tard in both its noun and adjective forms, and I’ve heard fucktard and even lactard (a person with lactose intolerance) from people who Ought To Know Better. And people who would never use the R-word throw around moron, idiot and cretin without acknowledging that they come from the same place: they are pejoratives tied to developmental and intellectual disabilities.

My own biggest struggle in this area is with the words stupid and crazy and all their thousands of synonyms.

Stupid: R*tarded has never been part of my vocabulary, because my mother was a Special Ed teacher and my sisters and I were lectured about it at a very early age. But until about a year ago, I couldn’t get through a day without calling somebody a dimwit or a dumbshit*, or suggesting that they were not the sharpest tool in the shed / the brightest light on the tree. Every insult carries a value judgment inside. When we call someone selfish, we announce that we value generosity. When we call someone a lazy bastard, we extol the virtues of hard work (and of people who happen to be the product of a monogamous, heterosexual union that has, before consummation, been officially sanctioned by both the appropriate municipal authorities and the Pope). When I call someone a dimwit, I announce to the world that I think people who are not intelligent are less deserving of respect and dignity than those who are. Or, in other words, that I am an asshole.

*Dumb, of course, was originally a synonym for mute, and is therefore in the same category as moron and idiot as a former diagnosis for a disability or medical condition that has been generalized as an insult.

The idea of intelligence needs a little unpacking. First, there’s the problem of constructing intelligence as monolithic, binary, and objectively measurable — a score on an IQ test or the SAT. I believe these tests are as much a measure of how closely the test-taker’s race, class, and culture correlate with those of the test-designer’s (or a measure of a child’s ability to sit quietly and concentrate while coloring in bubbles with a #2 pencil, or a measure of the ability to follow instructions or defer to authority, etc.) as they are of any objective capacity for learning.

People who dismiss IQ tests are generally more comfortable with the theory of multiple intelligences (Spatial, Linguistic, Logical-mathematical, Bodily-kinesthetic, Musical, Interpersonal, Intrapersonal, Naturalistic), which allows more people to be defined as intelligent because it makes the tent bigger. I agree that there are lots of ways intelligence can manifest. But the fact is, there are people in the world who are of below average intelligence in every objectively measurable way. There is just no way to squeeze everybody into the tent, no matter how we stretch or tweak the definition.

The reason we go to such lengths to stretch and tweak is that a lot of People Who Are Not Assholes are uncomfortable with the idea of calling anybody unintelligent. We are uncomfortable with it is because of the very pervasive, fundamental belief in our society that people who aren’t smart aren’t fully human. When we try to squeeze everyone into the intelligence tent, we reinforce this idea—people who are not smart are worthless, but I don’t think you’re worthless, so I have to find a way to say you’re just a different kind of smart. It’s so unacceptable to be unintelligent that we don’t even have a polite, non-loaded word for it—other than Cognitively Disabled, which is rarely used outside of a clinical setting. Instead, we use stupid and its many linguistic cousins to dehumanize people for reasons totally unrelated to their intelligence.

Crazy is in the same category. It’s so widely used that most people completely miss the value judgment we reinforce every time we use it. Most people aren’t thinking about mental illness or developmental disabilities when they call someone nuts or loony-tunes or insane or batshit crazy or cuckoo, but every one of these words fails the asshole test. Insane gets its power from the correlation of sanity with goodness and rightness and logic and worthy-of-being-treated-like-a-human-ness.

Crazy in particular gets thrown around in politics a lot. Jon Stewart organized the ”March to Restore Sanity” in 2010, and he recently did a sketch on The Daily Show titled something like Sarah Palin… or Crazy Person? that got me started on this way-too-long rant to begin with. In political debates, the word crazy is used to discredit people we disagree with — to marginalize and dismiss them, to argue that they are incapable of participation in a rational conversation.

So… what can you say when you just really need to snark about somebody, and all your go-to words have been ruined by humorless self-righteous PC language enforcers?

One option is to just start being more precise. Rather than call Sarah Palin a stupid, crazy bitch; why not say she is incompetent, ignorant, short-sighted, intolerant, greedy, bigoted, selfish, and mean-spirited? Maybe it’s not as immediately satisfying, but it does have the perk of not exposing you as a sexist, ableist asshole.

But what about those times when you just don’t have the time or energy or processing speed to find the precise set of words to say what you mean — when you really need a generic insult? That’s when words like asshole do the trick nicely. Assholes have no gender; nor are they tied to race or ethnicity or sexuality or disability or any other oppressed group that I’m aware of. Everybody has one. And if you choose your words carefully, you can avoid being one yourself.

• Dialogues Day One: Zoe
• Dialogues Day Two: Robert Rummel-Hudson
• Dialogues Day Three: Ari Ne’eman
• Dialogues Day Four: Zoe
• Dialogues Day Five: Robert Rummel-Hudson

I have wanted to comment many times, but have been held back by many things: the extremely limited amount of time I have outside of work and parenting and dealing with various family medical crises to even finish reading the posts and their many comments, much less write a response; my own inability to process quickly and think on my feet; and my inability to express myself concisely enough to respond in a comment without derailing the conversation in a way that feels self-indulgent.

But I have a lot on my mind, so this seems like the place to write some of it down:

To Shannon, who maintains that TPGA is hosting the dialogue neutrally: I do not doubt for a second your intention to provide a neutral forum for this conversation. I have nothing but respect for the initiative you took to make the conversation happen, for the work you have invested in creating the forum to begin with, and for your own personal position in this debate, which you outlined in a post that is eloquent, powerful, and refreshingly humble. (“Refreshingly” in the context of the debate in general, and as opposed to some of the entrenched self-righteousness I have seen coming from other parents; I have never found your writing anything but humble).

But. TPGA is not a neutral forum in the context of a dialogue between parents and self-advocates, despite anyone’s best intentions to make it so. It is not neutral because in a list of 111 contributors to the site, there are 13 “Special Needs Professionals,” 83 parents of children with autism or other special needs, and 17 autistic adults. It is not neutral because it was founded by parents of children with special needs, and because the topics presented are chosen primarily to appeal to these parents. I cannot extrapolate with absolute certainty the demographics of TPGA’s audience based on the demographics of its contributors and commenters, but I think it is a safe bet that TPGA is read by a whole lot of parents and by a much smaller number of autistic adults. TPGA does feature writing by autistic adults (in an approximate 1:5 ratio with writing by parents), but that writing appears in a context in which it serves primarily to educate parents who are interested in better understanding their children’s needs. It is not neutral because the medium itself (writing, in a relatively fast-paced online conversation) is simply not accessible to many people with autism in the same way it is accessible to people without any communication challenges.

TPGA is an outstanding resource for parents of children with autism. That it includes the voices of autistic adults at all, sadly, makes it an anomaly among other parent resources, and in my opinion that difference alone launches it head and shoulders above the others. So I don’t say this to detract from the value of the information presented here, the community you have helped build, or the positive steps you have taken to provide a forum for this dialogue. The fact is, the dialogue is happening here, in its current form it is not happening anywhere else, and it is reaching parents who really need to hear and think about this stuff in a a way that it might not if it were published somewhere else. My point is not that you haven’t done enough to make this a neutral forum, my point is that there is no neutral forum for this conversation.

There is no neutral forum for a conversation about disability that includes people with and without disabilities, because there is an inherent power imbalance that informs every exchange, regardless of where or how that exchange takes place. This is not an excuse for not having the conversation — it has to happen anyway. And I respect and applaud the TPGA editors, and Shannon in particular, for making that conversation happen. But when we fail to acknowledge that power imbalance, we normalize and contribute to it.

I feel the same way about Caitlin’s comment on Tuesday that she doesn’t have racist friends. I believe what she meant is that she chooses not to spend time with people who don’t make an effort to educate themselves about the ways their own privilege informs their thinking and behavior, who don’t understand or acknowledge institutional racism and the way it permeates every human interaction in our culture, who are the cartoon personification of North American white racists. I understand this choice, and for the most part I do the same — I rarely choose to spend time around people who I know will say ugly, hurtful things.

But I would never say I don’t have racist friends. Because I am a white person who grew up in the United States, and most of my friends are white. And no matter how aware we are of our privilege, and no matter how careful and thoughtful we are in our personal expression and individual relationships, and no matter if our life’s work is fighting for social justice, and no matter how far we distance ourselves from Archie Bunker and the KKK and the correctional system that executed Troy Davis, we are all products of the same racist society in one way or another.

I suspect that Caitlin understands this better than many non-disabled people involved in the discussion, and I say this not to call her out for her word choice in a fast-moving dialogue (which was, in fact, so fast moving that I was unable to participate at all in real time, and so I have a great deal of respect for Caitlin for jumping in, usually eloquently and almost always saying what I wish I were quick enough or brave enough to say). I bring it up because I think it’s relevant to the conversation and her comment happend to provide the opportunity to say it.

To Zoe and Ari: You are both brilliant, passionate writers and advocates, and I can think of nothing I want more for my son than to grow up to join the movement you are building.

To the parents with the enormous chip on their shoulder about being told how to parent: I have that chip too. In fact, six months ago I wrote an entire post on unsolicited parenting advice, and the reasons I am unable to accept it gracefully. Here’s the thing, though: I have looked and looked, and I just don’t see that happening in this particular dialogue. Where, in this conversation over the last five days, has anybody told anybody else how to be a parent? Am I missing something?

Yes, I have seen unfortunate assumptions made by both parents and self-advocates, from Rob’s much-remarked-upon assumption that Zoe lived independently to Landon’s assumption that Rob wrote his entire Friday post without reading Zoe or Ari’s responses. Landon, I thought your first response to Rob was well written and very powerful. I understand that you feel this one was a bit more generous than necessary, and I don’t expect you to bend over backwards to meet anybody in a discussion. There is nothing wrong with just saying what you think, and you generally do that directly and very clearly. But honestly, I think you’re reading way too much into the Twitter exchange you posted here. Is it unreasonable to begin writing something three days before it is due? Why do you assume that he wrote the entire piece that day?

I agree with your analysis of Rob’s Friday post: as many other people have pointed out, it does not directly address any of the issues raised on Wednesday or Thursday. This is disappointing, and feels like a retreat to vague appeals to hope rather than a genuine engagement in a difficult debate. But it is one thing to say it does not address the previous posts; it is another to claim that it was written, in its entirety, without reading them. I don’t think the evidence you’re presenting proves that theory. I don’t think it is treating Rob like a “delicate flower” to assume he tried and failed instead of assuming he cynically disengaged without trying — I think it is giving him the respect we all deserve as participants in this conversation. You may see this as my bias as a parent, and if it is, I own up to that bias.

Returning to the parents who complain of being told how to raise their kids: I think that as parents doing an incredibly difficult, draining job, many of us are so exhausted and defensive that we scream before we’re hit; we invent attackers where there are none. And unfortunately, that position of defensive self-righteousness serves us very poorly in a difficult, nuanced conversation. It’s a huge cop-out to reduce everything to “Well, you just don’t know what it’s like to be me.” You’re right: Nobody knows what it’s like to be you. You don’t know what it’s like to be your child. Non-parents don’t know what it’s like to be a parent. White people don’t know what it’s like to live in a racist world as a person of color. People without disabilities don’t know what it’s like to live in an ablist world without the tools or skills or body parts or neurology required for full access. That’s why we’re having this conversation: to learn a little more about where each participant is coming from.

Nothing we learn from each other will ever bridge this gap completely. The best outcome we can hope for is to learn enough to acknowledge our own biases, to recognize that there are many things we will never understand about people whose life experience does not match ours, and to commit to continuing to engage with them anyway, however imperfectly. Because it is our responsibility to engage; because it makes us wiser, more compassionate people; and because although we as neurotypical parents can choose to walk away from this discussion, our children will not have that choice.

Sometimes he would try for “do-overs,” by replaying the actions that led up to the catastrophe: “You want to go back in the living room and come into the kitchen again!” Often he would flail his arms, sweeping other objects off the table and escalating the meltdown. His whole body would shake until his teeth chattered. Sometimes he would hit himself in the face.

We would try to reassure him that it was just an accident, that we could refill the water glass, clean up the spill, tape up the torn page in the book. We tried to stay calm, to comfort him. But we were worried by what seemed like a huge struggle to cope with small surprises or setbacks. My sister joked that “toddler screams ‘clean it!’” was my top Google search in 2009.

After the diagnosis, we were advised by some therapist or EI teacher to try to minimize these incidents by not drawing attention to them — ignore the reaction; quietly clean up without too much talking or fuss. Sometimes it worked; sometimes it didn’t. After learning more about autism, I began to understand the panic as a response to a combination of things: a loud noise, a disruption in routine, an unexpected and confusing display of emotion from an adult (spills at our house are often followed by “goddammit!” or “motherfucker!”), and, on some level, the uncomfortable recognition that we are not always in control of what happens — that there is disorder in the world.

For about a year, my husband and I would freeze in our seats, prepared to leap into full combat mode if there was a minor spill at the dinner table. Eventually this kind of meltdown became less frequent, but I still get a rush of adrenaline every time I drop or break something in front of my son.

One of the worst incidents happened more than a year ago, when I dropped a glass bottle full of ricemilk as we were walking upstairs. M stared at the broken pieces in terror, sobbing “Is it still a bottle? It’s not a bottle anymore! Could you still drink it? You could go back downstairs and come up again and then it would still be a bottle!” I cleaned up the mess, filled a new bottle, and tried to calm him down, but he stayed hysterical for nearly an hour.

I thought of this day when I saw the HBO special on Temple Grandin. Temple asks her aunt how she will know which room is hers, and they agree to tape a sign to the door that says “Temple’s Room.” Later, a draft blows the sign off the door, and we watch Temple panic as she takes in this change. The film makes it clear that the room has become unfamiliar and sinister now that the sign is gone — it is no longer her room, and this is confusing and frightening.

It occurred to me that M’s panic over spills and small accidents could be less about the loud noise or the surprise, and more about the horrifying idea that an object can cease to exist. If he does not recognize the broken pieces as “still a bottle,” then when a bottle breaks, it just disappears. Honestly, it seems like a pretty reasonable thing to panic about. This is, after all, the root of all human religious thought — our discomfort with the idea that people can simply cease to exist. We create elaborate fairy tales about the afterlife and divine intervention because death is terrifying, and there are no do-overs — time moves in only one direction.

I don’t actually think my three-year-old’s tantrums are all about existential despair, or evidence of his recognition that there is no God. But I do think there is more to it than just shock at a loud noise. And ignoring the reaction might not be the best way to handle it. The idea that an object can just disappear out of the fabric of space-time is upsetting, and his response doesn’t seem so surprising or unreasonable when I look at it that way.

M has come a long way in the last year. More often than not, he takes spills in stride — with no reaction other than a typical preschooler’s desire to play in the mess. Last week, his brother dropped a plate off his highchair tray, and it broke in three pieces. M’s eyes got huge, and he started to cry, “Is it still a plate? It’s not a plate! It’s not a plate anymore!”

I started to clean up, and I said, “Yes, it’s still a plate. It’s just broken in pieces. Just like your eggs — they’re cut up in pieces, but they’re still eggs.”

M was quiet for a while. I finished cleaning up, and we went back to eating our breakfast. I was keeping my eye on L to make sure he didn’t dump anything else off his tray.

Several minutes later, I turned around to look at M and realized he was still staring at his eggs, with a huge smile on his face. He was whispering to himself, “Still a plate. The eggs are still eggs. They’re just cut up.”

None of that sleep advice ever worked with M, and I read all the stupid books and spent hours searching online forums and tried everything everybody suggested, no matter how asinine it sounded (did you know you can spend a ton of money on these jiggly cylinders that you put under the legs of the crib so it will shake like a Magic Fingers bed massage in a cheap motel? I seriously considered this, even though we didn’t have a crib or a room to put a crib in).

Eventually, I realized that some—or maybe even most—kids with autism just have trouble sleeping, period. My son may grow out of it eventually, or he may have insomnia his whole life. There is very little I can do except what I know works, which is sleeping in his bed with him. Which is exactly what the advice books unanimously tell you not to do. For a thousand reasons, ranging from robbing your child of the ability to live independently as an adult to destroying your marriage. But I will continue to do it for the foreseeable future, because this is just not a battle worth fighting anymore.

And then I started to get angry. Who the fuck were these experts, with their “foolproof” advice? Why did I spend a year thinking I was a terrible parent because I just didn’t try hard enough to get my kid to take an afternoon nap [a failure which, the books tell me, will cause damage to my child's brain]? To sell their books, they have to convince us that they know something about raising kids that we don’t know. They construct their authority with a science-y sounding defense of their guaranteed five-step system, frequent references to a questionably-relevant graduate degree, and a jazzy brand name and website.

All of this should set off our bullshit detectors. But I kept reading the books anyway. Partly because I was desperate for a solution to my problem, which at the time was something like 700 consecutive nights without a complete three-hour sleep cycle. But the reasons that I looked to books and the Internet rather than trusting my instincts or talking to friends are more complicated.

It is very common for Americans to make it well into our mid-thirties — until we become parents ourselves — without ever having held a newborn or changed a diaper. You could easily go your whole life without holding a baby if you don’t have kids. Most people live far away from extended family, and are too busy to help care for the children of even close friends. At the time I was reading these books, I didn’t have any friends with babies — half of them had teenagers, and the other half started getting pregnant a year after my son was born. New parents have never done this before, so we’re naturally insecure about our ability to do it well. We are also told (often by the same people trying to sell us parenting advice) that guiding our children through their early years is the most important thing we will ever do. Every move we make, they say, will irreversibly affect our children’s brains. We hear about the “critical window of cognitive development,” which “slams shut” at age three, so by God you better pump some Baby Einstein up your kid’s ass while he’s still young, or else he will never catch up.

A lot of this talk about the “critical window” is nothing more than a cynical way to sell baby genius products. The science behind it has been in question for more than a decade. Our brains continue to develop throughout our lives. Convincing parents to panic about failing our kids during early childhood is not helping anybody.

The real issue here, though, is that not only do brains continue to develop past childhood, but that a lot of the ways they develop are completely out of our control. If your child is autistic, those sleep advice books were not written for you. Neither were the ones that equate meeting developmental milestones with “good” parenting. Or the ones that tell you how to ensure your child will succeed in school.

I loved Katha Pollit’s recent piece about child poverty in The Nation, in which she points out that if you are participating in the battle over parenting styles — if you have a “parenting style” at all — then it doesn’t really matter which style it is. Socioeconomic status is the best predictor of children’s academic success. Those of us who have the time and energy to think about “parenting” as an abstract idea are, by definition, in a different socioeconomic situation than those who do not:

Are you a tiger mother, a soccer mom, a helicopter parent, an attachment mom, a permissive free spirit who just wants your child to be herself? Congratulations. Your kids have a good chance of turning out reasonably well. Not because you are a parenting genius who has hit on the perfect method but because you have the time and energy and cultural capital to give your child what he needs to be successful in today’s world no matter what child-raising method you choose. You are probably not, for example, poor, homeless, functionally illiterate, socially isolated, an addict, in prison, living in substandard housing, working three low-paid jobs—or unemployed for life. You have books in your house, and probably a computer too. You know enough to help your child with homework—and if not, you have the money or networks to find a tutor. You feel comfortable volunteering at your child’s school, being in the PTA, calling the principal, going to parent-teacher conferences. You can afford to take your child to the doctor and the dentist for regular care. If your child should happen to get arrested, as quite a few do—if he’s caught with pot, say, or spray-paints graffiti, or jumps a turnstile—there’s a good chance that the charges can be made to go away, or at least not become part of his permanent record. Your ex may have run off with your best friend, your apartment may be too small, you may hate your job—but you are still a white-collar, college-educated, middle-class person. And that makes all the difference for your children.

I have written before about my frustration with the way we equate children’s academic achievement with “good” parenting. General intelligence is heritable. So are the myriad of cognitive and behavioral traits that affect a child’s ability to sit quietly and answer test questions. Yet parents pat themselves on the back when their kids score well on the SAT. They also brag about basic developmental milestones like walking, talking, sleeping “through the night,” and toilet training—as if their child’s achievement in these areas were evidence of superior parenting.

Genetics doesn’t decide everything, of course. The other pieces of this equation [at least for "success" at school] are the family environment and the peer environment. And Pollit’s point in this article is that economic class, more than anything else, determines what those environments are like, and whether they will encourage or impede academic achievement.

Defining educational achievement as the appropriate measure of successful parenting is a problem on lots of levels. Yes, educational achievement is infinitely more accessible for the white and the rich, but let’s not forget that it also helps to be able-bodied and typically-wired. Standardized tests are carefully designed to reward a particular kind of verbal intelligence, which leaves out anyone with atypical or nonverbal communication styles. They are also notoriously culturally biased. When I was a child, I failed to identify a picture of a man’s vest on an IQ test. My dad was a baker and wore a T-shirt to work — he didn’t own a suit. I’m sure a corporate lawyer’s kid would have had no trouble with that question, but that shouldn’t have any bearing on his or her IQ score.

The point here is that both genetics and socioeconomic class are pretty much out of our control. So could we please stop talking about test scores as measures of successful parenting? Or equating “turning out reasonably well” with “scoring well on standardized achievement tests”? (Sorry, Katha, I love you, but I’m talking to you here).

And while we’re at it, could we also acknowledge that the huge majority of parents are doing the best they can with whatever they have, and that even the most well-meaning advice is rarely as helpful as you think it might be, for the simple reason that you, the advice-giver, are not the parent of my child? Or in many cases, not a parent at all, or perhaps a parent who last had a three-year-old during the Nixon administration.

I find that even when I ask for advice, I am so defensive about the incredibly hard work I am doing at an unimaginably difficult job that I have a hard time accepting it gracefully. Because the advice invariably comes attached to a set of assumptions about what my child is like, about what I have tried or not tried, about what might or might not work, about what autism is or isn’t, about how much disposable income I have. And these assumptions are usually so far off-base, so far removed from my reality, that I can’t look past that to see the advice-dispenser’s genuine good intentions.

Special-needs parents get a lot of advice from therapists, teachers, and other professionals. There is a difference between advice about how to address a particular, narrowly defined problem (which is part of your job), and general parenting advice (which is not). And the difference matters. You may be an expert in your field. And your field may be child psychology, or speech pathology, or pediatrics, or early childhood education. And I may come to you for advice in the field in which you are qualified. But I’m no more interested in your opinions about being a parent than I am in my veterinarian’s opinion about mutual funds.

I will admit that I feel differently about advice from other parents of kids with disabilities, mental illness, or other special needs — and from adults with disabilities. I think these people often have useful advice to give, and if I need it, that’s where I’ll look for it. But I have also noticed that few of them are offering unsolicited advice. Probably because they’ve been on the receiving end of so much of it that, like me, they are very aware of how that kind of advice is usually received.

And so any advice I offer, even when asked (only when asked!), is immediately followed by a string of disclaimers: It worked for me, but who knows what will work for you. Try it if you think it will help, but every kid is different. And if it doesn’t work, it doesn’t mean you just aren’t trying hard enough. It might mean it was the wrong advice to begin with.

I’m never going to sell any parenting advice books with this kind of attitude, but I might at least avoid making another parent feel like a failure.