Monday, September 30, 2013

Monday Morning Masculinity: Wiping Bottoms

When my son was born, I processed the words "Down syndrome" in part by starting to write. First it was Livejournal, then Facebook, then a few op-eds, and now my current combination of Facebook, Twitter, published Op-Eds, and periodic re-posts to other sites. I decided to make "Lollardfish," a name I used on early online spaces, a public name associated with "David Perry." But I also made a vow as I became a "baby-blogger."

I would not write about poop.

I have mostly kept that vow.

Last week, among other outrages, a "real housewife" published a book called Love: Italian Style that seems to feature every stereotype about gender, marriage, and Italians that one could invent. I have not read the book, but because of my interest in marital and parenting norms, I did follow the reviews. Here's Gawker.

The amount of sexism, gender essentialism, and caveman logic within its pages is so appalling that it's difficult to believe that her book is anything but a cry for help.
The worst passages are on marital rape, followed by a whole host of other abusive passages. But I focused on this one.

Joe, the housewife's husband, says: "I don't feed babies, or change the diapers. My father never wiped my ass, and I don't wipe my babies' either."
I feel sorry for men who have this attitude towards caregiving. While the other egregious excerpts from this book are not, I hope, typical, I think this one is.

It's true that I didn't especially like changing diapers and feeding was often messy and a chore, but caring for my son, first, and then my daughter, changed me as a person. When you are responsible for all the basic bodily needs of an infant, this intensifies the bonding between the two of you. I've never forgotten those early weeks and months of learning to read the signals coming from my children, assessing their input and output carefully, trying to predict and meet their needs. It changed my relationship with my wife, too, as caregiving became a new aspect of our partnership.

I was very hesitant, at first. I loved kids, but had not spent a lot of time around babies, and used to have quite the weak stomach when it came to diapers. Even the smell from someone else's kid would make me leave the room, and I was nervous about failing this test when Nico was born.

I think his diagnosis played a role, here, as the words "Down syndrome" shifted us into a new world and made new demands on us. We met those demands, I think, with as much grace and love as we could, because we had no real choice. There was a baby. We loved him. He had needs. We tried to meet them. And we changed.

By the time my daughter was born, caregiving was just a normal part of being a father; of being a man. I'm grateful to my children for the depths they have helped me discover.

My son is six and a half and mostly potty trained, though he still has accidents. Still, he doesn't really know how to wipe his own bottom, so he gets off the potty and calls for help. I lean down to clean him and he leans in to me with his head, holding still, waiting, close. These are not my favorite moments with my son, but they are part of whole package of fatherhood. I'm looking forward to the day when he can do it himself, but I never mind. I'm glad he lets me help him. I'm glad he trusts me. I'm glad I'm his dad.

Sunday, September 29, 2013

Ricky Gervais and the Angel/Retard Dialectic

Apparently there's a new show on Netflix called Derek. I haven't watched it. Who has time to watch that sort of thing in between parenting, working, writing, cooking, cleaning, gardening, sports, cooking shows, and all the other things that fill up my life.

Apparently, though, it features a lead character who is unbelievably good and presumably has a disability. It falls into the "angel" side of what I like to call the "Angel/Retard Dialectic" (discussed in this CNN essay). I'm very interested in the way that positive stereotypes, as nice as they can feel, are just as limiting as negative stereotypes.

Here's a review, then I'll offer a few comments at the end:

Derek, played by Ricky Gervais, is an incredibly nice person who may or may not have a disability. 
Derek is what his friends and co-workers euphemistically refer to as “different”: He walks with a shuffling gait, he has a chronic underbite, and he is unable to maintain eye contact with others. His physicality has led the show’s minor characters (and its audience) to infer that he is mentally disabled (Gervais, who created the character in 2001, insists that he is not). Whether or not he is, however, is secondary to the fact that he is clearly differently abled in some way, a distinction that the show’s creators conflate with kinder, better, and more generous than the lion’s share of humanity. [my emphasis]
The author continues:

With his near-divine capacity for goodwill, Derek is exemplary of Hollywood’s tendency to canonize the differently abled. Like Forrest Gump or Chance the Gardener or the title character from I Am Sam before him, Derek is an MPDAP (Manic Pixie Differently Abled Person). MPDAPs don’t drink, smoke, or have any sexual desires; they exist solely to stand in contrast with the callousness and cynicism of the “mainstream” world ....The MPDAP change the lives of those around them by the force of his decency and goodness — and, perhaps, teach us audience members a valuable life lesson or two in the process.
Well, that all sounds charming, so what's the problem, you are undoubtedly asking. I'm glad you asked:
The problem is that, like most generalizations about marginalized groups, it perpetuates misconceptions about disabled people. Take, for instance, the stereotype that people who have Down’s Syndrome are more likely to be indiscriminately affectionate than those who don’t. While objectively speaking, there are far worse stereotypes for a marginalized group to be saddled with...such a trope dictates how other members of society see these groups, thus depriving them of their agency.
 The review then tracks the MPDAP, as they have called it, through other iterations: Corky (Life Goes On), Cousin Geri (Facts of Life), and even the literal appearance of people with Down Syndrome as Angels:

There’s 7th Heaven, where the Camdens habitually refer to characters with Down’s Syndrome as “angels” (a designation that was rendered literal by the show Touched By An Angel, featuring a performance by Burke as a “guardian of faith”). At no point do these MPDAPs exhibit any human emotion other than pure decency, neither anger nor frustration nor sexual desire. They might as well be inspirational posters or cardboard cutouts in a middle school guidance counselor’s office.
Really, you should just read the whole essay, which then turns to think about more complex portrayals recently - Glee's sassy cheerleader with a gun, The Secret Life of an American Teenager and its engagement with Down syndrome and sex drives, Family Guy, and even South Park. I decided I had to stop watching South Park at one point, but the author makes the argument that:
The characters of Timmy and Jimmy, while subject to the same level of scathing mockery as all other marginalized groups on the show, don’t exist as objects of pity or fetishization: they’re well-assimilated into their social circle, they’re capable of feeling emotions other than Derek’s brand of unconditional love and decency, and they pursue their interests while rebuffing anyone who attempts to valorize them for doing so.
 I'm not sure I can watch Timmy and Jimmy anymore, but it is true that they fall outside the "angel/retard dialectic."

I'm going to give Derek a pass - again, who has the time? But it's worth thinking about the "super-crip," the MPDAP (it refers to the Manic-Pixie Dream Girl TV trope), and all the complex forms of inspiration porn that shape disability and representation. In my original essay on the dialectic, I wrote:

Symbols, labels and representations -- in media, literature and our daily conversations -- shape reality. The words "retard" and "angel" represent images that dehumanize and disempower. Both words connote two-dimensional, simple or limited people. Neither angels nor retards can live in the world with the rest of us, except as pets, charity cases or abstract sources of inspiration.
I stand by that. The key is to represent people with disabilities as people - or better yet to let them represent themselves - so they can live in the real, complex, often inconsistent, real world with everyone else. That's the pathway to inclusion.

Weekly Roundup

Every Sunday, I offer a round-up of the links I posted this week. It's been a good week with lots of interesting comments, RTs, Facebook replies, and other interaction. I love comments!

New feature: Under-read post that I really like - Please read: How to Write an Opinion Essay in 63 Easy Steps. I just think it's funny, and I don't do funny that often.

Last week:
  • Sunday - Cardinal's Law: Thinking about the metonymy between "catholic" and "sex abuse" in internet comment sections. 
    • Speaking of comments, Popular Science shut down theirs, citing a study that polarizing comments can be bad for knowledge and accuracy. I believe it. But if you dig into the study and responses to the study, you'll see that the real conclusion is that a heavily moderated comment section is the best option. It's just not an option that big websites with tens of thousands of comments can afford to do. But I can! 
  • Monday - I linked to a friend's brilliant post on #JusticeForEthan and her reaction a bright yellow t-shirt that says: I have autism. Call 911. It's very troubling. My friend writes: "It is not an individual’s responsibility to wear or show evidence of his or her diagnosis in order to remain safe and retain their basic civil rights." I want us all to remember that.
  • Tuesday - provided the links to my latest piece on Pope Francis for context.
  • Wednesday turned to a bizarre story of a cap on bottle of Vitamin Water that read, "You Retard."
  • Thursday was my 100th blog post. I asked for good stores about police and people with disabilities. The response was minimal and my effort was a failure. I'm going with new strategies, as I think these stories could be very important.
  • Friday was my most-read piece of the week - Barilla and Bigotry (and a Down Syndrome diet). We're going to finish the boxes in my pantry then start trying new things. I'd really like the company to come out and issue a fulsome apology, a promise to try to be more inclusive in the future, and otherwise completely change their tone. The current non-apology apology doesn't cut it. Of course, if Nico can't shift textures, we will stick with Barilla. Nutrition trumps politics.
  • Saturday - Finally, I blogged about the latest piece on boys and gender from the great Soraya Chemaly. You should just read everything she writes.
So - disability, gender, popes, and noodles. A pretty typical week. Later, I'll post about Ricky Gervais and his new show Derek.

Saturday, September 28, 2013

Boys in Crisis? Try empathy.

My first widely-read essay was last May, for CNN, on my daughter's "best-dressed" award. I argued:

Our culture constantly projects the message that only appearances matter, and this message is aimed squarely at our children. We can fight this only by working against the grain, resisting gendered language and emphasizing the internal over the external.
I received many comments, some hilarious (accusing me of being parts of the gay, Jewish, sharia, communist conspiracy to destroy America), some inspiring, and some very thoughtful. Among the last, many people asked me to write about how sex stereotypes hurt boys.

My relationship with boy-culture is complicated by my son's Down Syndrome, but it's been on my radar, and something I'll turn to in time. In the meantime, though, Soraya Chemaly has been doing great writing about the ways in which our patriarchal culture hurts boys. Last May she wrote, "The Problem with Boys will be Boys," for HuffPo,  and this week Salon published a new essay: The Real Boy Crisis. Chemaly writes:

The ability to feel what others feel has many well-documented benefits, including, for empathetic people, greater psychological and physical health. The real and socially significant positive impact of empathy, however, is the ways in which it affects behavior toward others. People who are empathetic are less aggressive and prone to denigrate others; they are predisposed to act with care and compassion; they have increased egalitarian beliefs and act with less prejudice and stereotype-based hatred. Empathetic behaviors, however, are associated with being female. And weak.
The stereotypes that plague our lives teach that the characteristics of empathetic understanding are feminine: listening, sensitivity, quiet consideration and gentleness.  Empathy is feminized and boys learn quickly that what is feminized is, in a man, the source of disgust. While parents, teachers, coaches, grandparents and others whose ideas shape children aren’t sitting around telling boys, “Don’t be empathetic!” they are saying, in daily micro-aggressive ways, “Don’t be like girls!”  The process of “becoming a man” still often means rejecting almost any activity or preference that smacks of cross-gender expression or sympathy.
She then lists five clear ways in which boys are taught not to be empathetic. She concludes:

And restrictive boy codes turn into restrictive man codes. Forcing boys to reject all “feminine” aspects of themselves means not teaching them to be fully human. It reduces their ability to be flexible, adaptable and nimble when encountering new situations. It reduces their opportunities for happiness.

Empathy is essential to changing this. Boys with sisters in households where gender roles are stereotypical are far more likely to grow up to be conservative men with a similar reliance on stereotypes. They end up, often, as benevolent sexists out of sync with the reality of women’s lives, but, worse, actively involved in making sure they are not successful in the workplace.  One of the things that challenges their beliefs as adults, interestingly, is having daughters, something researchers call a “warming effect.”

People who claim to have egalitarian ideals while wringing their hands about a boy crisis in education are all the while advocating the exact course of action that limits boys in the first place: a greater emphasis on sex segregation and debunked, essentialist ideas about brains, gender and roles in life.  The boy crisis we should be focusing on is how “boys will be boys” ideas and sexist media leave boys ill-equipped to function in diverse societies.  School aren’t emasculating boys, American masculinity is dehumanizing them.
She's writing this in the context of the constant worry about a "crisis" in education for boys. And it is a problem. Fewer and fewer boys are doing well in school say some of the data, and Men's Rights Activists blame feminism (Chemaly has actually written widely on this). Chemaly is saying the problem is patriarchy.

I largely agree with Chemaly. Most of the time, when men are complaining about a problem that we face as a gender, the solution to the problem, I argue, is more feminism. More feminism leads to an expansion of the possibilities of masculine expression. More feminism enabled boys to function in different environments. More feminism leads to more room for fathers to be involved in the emotional life of their children.

And empathy is vital. In my post on bullying, I aligned myself with Chemaly, writing about the crucial task of parents to teach empathy to their children. Gender norms stand in our way, and that's a crisis.

Friday, September 27, 2013

Barilla and Bigotry (and a Down Syndrome Diet)

Here is a complete list of the foods my son eats:
Preferred foods: Pretzels, Cottage Cheese, , Craisins, Fig newtons and similar cookies, noodles (penne and rotini), blueberries (his favorite thing!), cheerios (honey nut), applesauce, oatmeal, yogurt
Emerging foods: Saltines, Graham crackers, cereal bars, melon.
Of those, only oatmeal and noodles are "hot" foods. And only noodles are what anyone else would call a "main dish." He eats them plain, without cheese or butter. He eats them every day for lunch. He eats a lot of them. And he only eats Barilla. Oh, sure, we've managed occasionally to convince him that other brands are edible, but he's very picky about texture. Deviate too far off texture, and you end up with a bowl of noodles in the garbage (or eating a lot of noodles yourself).

Fortunately, Barilla has made good products for us - protein enriched, extra fiber, infused with veggies, whole wheat. He's getting great nutrition from them.

We used to work very hard to push new foods on him, but: 1) it didn't work 2) he would rather cry himself sick than eat something he doesn't want 3) he's more willing to go without food than we are willing to let him starve, and 4) most importantly, we decided it wasn't one of the battles we needed to fight.

You see, parenting a child with special needs requires, in a way more acute than other parenting, deciding which things you want to work on. You can't work on everything all the time. Nico could have in 5 different private therapists, but even if we had the money, we don't have the time, and Nico needs time to be a kid anyway. So we pick (in consultation) the things that are most important. When he was 4, we decided food variety wasn't one of those things. The exact quote was, "If he eats cheerios four times a day, so long as he takes a vitamin, so be it."

With this new mantra in mind, our lives improved. Mealtimes relaxed, and gradually his foods moved back from about 4 things to the current list. Also, our stress level went down. Stress is bad for you. Parenting is stressful. Parenting kids with special needs is more stressful. Stress levels for primary caregivers of children with autism has been compared to deployed soldiers (it's a different kind of stress, but the levels are comparable). If you can find a way to de-escalate and keep doing the important things, I'm all for it. That's what happened to us with food.

If you've been following the news on noodles, you know where this going next.

Gay rights activists in Italy have launched a boycott of the world's leading pasta maker after its chairman said he would only portray the "classic family" in his advertisements and, if people objected to that, they should feel free to eat a different kind of pasta.
Guido Barilla, who controls the fourth-generation Barilla Group family business with his two brothers, sparked outrage among activists, consumers and some politicians when he said he would not consider using a gay family to advertise Barilla pasta.
"For us the concept of the sacred family remains one of the basic values of the company," he told Italian radio on Wednesday evening. "I would not do it but not out of a lack of respect for homosexuals who have the right to do what they want without bothering others … [but] I don't see things like they do and I think the family that we speak to is a classic family."
Asked what effect he thought his attitude would have on gay consumers of pasta, Barilla said: "Well, if they like our pasta and our message they will eat it; if they don't like it and they don't like what we say they will … eat another."
It gets worse:

He added: “Everyone has the right to do what they want without disturbing those around them”. But then the pasta magnate upped the ante by attacking gay adoption. “I have no respect for adoption by gay families because this concerns a person who is not able to choose," he said.
So now we have moved from casual bigotry and the decision not to depict a homosexual family in advertisements, which doesn't bother me as much, to advocating against gay adoption. This takes it from a semi-passive bigotry (not hiring) to active.

Of course, he offered an apology. The first version said the following:

“Regarding my comments at the radio program La Zanzara, I [apologize] if my words generated misunderstandings or controversy or if they hurt some people’s feelings. In the interview I just wanted to underline the centrality of the woman’s role in the family. To be clear, I just want to specify that I do have great respect of every person, without any kind of distinction. I do respect gay people and everybody’s freedom of expression. I also said I do respect gay marriage. Barilla in its advertising has always chosen to represent the family because this is the symbol of hospitality and affection for everyone.”
"Highlight the centrality of the woman's role in the family."

Oddly enough, that sentence has been cut from the version currently on their Facebook page, because perhaps someone realized that leaping from homophobia to sexism wasn't the way out of this mess, but the damage has been done.

And as my friend Fred quotes: "Apologies offered too glibly … can be a sly way of asserting one’s own moral superiority while reifying the victim status of the group to whom apologies are offered. This is especially so if the structures of that victimization remain in place." (From James Carroll, Toward a New Catholic Church: The Promise of Reform). It seems to me that's pretty much what we're seeing here.


I cannot purchase products from a company that endorses bigotry. I am an active supporter of equality of all kinds - gender, race, orientation, ability, religion - you name it. The ways to support equality, especially when rights seem to conflict, are not always clear. But I try. This path, though, is clear. No more Barilla.

Here are five pasta brands sold in the U.S. that (I am told) do well on gay rights. It includes Target's brand. Target does not, I think, make veggie enriched noodles, but I think I'll write them a letter and talk about eating into Barilla's market share (which is very high, a quarter of the US market and half of Europe's).

But let's end on a lighter note. Bertolli, a competitor for sauces and other products (but not dried pasta), has put out this add.

Buon Appetito!

Thursday, September 26, 2013

Wanted: Good Stories about Police and Disability

This is my 100th blog post. Thank you for reading and all your comments and ideas and criticisms.

Today, I need your help. I want some good news.

I am looking for stories about interactions between law enforcement and people with disabilities that go well.

They are hard to find, because such stories, by definition, don't make the news. But we need these stories as antidotes to the abuses, the brutality, and the deaths. We need to see what it looks like when police do well, extract lessons from these events, publicize them, and pressure the abusers and the ignorant to learn.

PLEASE SHARE THIS POST. I don't usually ask you to share (although I always like it!), but I'm trying to get this request into disability and law enforcement communities around the country.

More context below.


I'm a little resigned about the chances of getting an impartial and thorough investigation leading to #JusticeForEthan. I'm assuming that most people who read this post will know about the case, but here's one of my articles about it.

Since I wrote, the Saylors delivered 340,000 signatures to Governor O'Malley, he's agreed to call for a commission to study police-disability interaction (or, as he puts it, "Effective Community Inclusion of Individuals with Intellectual and Development Disabilities"), but has said that he is not inclined to call for a new investigation. He wants to look "forward."

I can't really explain why. O'Malley isn't answering questions, but is communicating through statements (watch his staff help him dodge a local news team). Mark Leach writes that the Governor has alluded to a conversation with the pathologist which, if made public, would give Saylors closure (anyone have a source on this?). So maybe he just doesn't believe the police did anything wrong. He's not alone.

He's also wrong.

I've been spending a lot of time over the last two weeks looking at police training. I've interviewed trainers. I've interviewed Maryland police officials. I think I have a good grasp of how the police were trained, why they responded the way that they did to Ethan, and that they were following procedure as they understood it.

It's just that the procedure was wrong. Moreover, patience and common sense should not require extra training. More on this in coming days, weeks, and even months (I'm taking a long view here).

My basic thesis is this: You cannot fix a problem you do not understand. I am not convinced that anyone really understands what happened that night with Ethan Saylor. Therefore, the commission and new training is unlikely to fix it until that changes. In the absence of a true impartial investigation, how do we get there?

My current approach is to find the good stories, stories in which police demonstrated awareness, patience and common sense when interacting with a person with an intellectual disability. Stories in which there's no news because everything went smoothly. These are hard to find, much as it's hard to hear the dog that doesn't bark. So I am asking for your help.

Yes, I have calls in to various professionals and have some leads, but I'd really like to harness the power of social media to find stories.

Therefore, dear Readers: Please send me any positive stories about police interactions with people with disabilities, especially (but not exclusively) developmental disabilities.

Send them to, message me with them on Facebook, post them here, tag me on twitter, anything. If there is a news story, send a link. If not, please get whatever contact information you have so I can talk to both people with disabilities (and their caregivers) and, ideally, police. I bet I can get police on the record to talk about good stories.

Please share this post. Share is on twitter, on facebook groups, on mailing lists, in your communities.

We need to provide positive models to hold up against Ethan's death, against the Antonio Martinez beating, against the constant cases of taser abuse against the deaf, autistic, or mentally ill.

Thank you.

Wednesday, September 25, 2013

Coke cap to teenage girl: "You retard"

In Canada, a few weeks ago, a girl opened a bottle of Vitamin Water (owned by Coca-Cola). The cap had two words on it, reading: "You Retard."

She took a picture of it and showed to her father, who immediately contacted the media and wrote to the company. The girl has two younger sisters (age 11), both disabled, one of whom has Cerebral Palsey and is significantly delayed in a number of ways.

I read the story when it first came through and was thoroughly baffled. How could any company possibly think this is ok? An explanation has now emerged:
The messages were part of a Coke promotion in Canada that randomly paired English and French words that together were supposed to make up funny gibberish phrases. But the words were only vetted in French, not English.

“Retard” in French means “late.” But Doug Loates, who does not speak French, didn’t see the humor.
Is what we have here an example of the problems of randomized computer-generated promotions Is this another example of failure related to the exclusion of the human element? Would a real human scanning the list have caught it? Coke's answer is not clear.

What does it mean to vet them in French but not English? Was there an actual human who sat down with all the words and read them and just skipped over "retard" as "non-offensive?" Or did they run some kind of script to check for offensive words and "retard" passed? If an actual human was involved, were they just unaware of the double English/French meaning to "retard" or did they just not care?
The relevant Coke VP says:

“We have learned from this and it was a mistake,” he said. “At no point in time did we intend on offending anyone by any stretch and we have cancelled and moved on and have dealt with this as soon as possible.”
I believe him that no one meant any offense. But I wonder what, exactly, they have "learned." Have they learned to be careful with their tech? Have they learned something about offensive speech? Have they developed "awareness?"

Hopefully, they've learned just to pay a little closer attention to language, because you never know who is going to open your bottle and read the cap.

Tuesday, September 24, 2013

Sourcing Francis

I am an academic. When I write scholarship, I use footnotes. When I write op-eds, I use links. Links make me feel more confident as a writer as they leave my sources transparent. Sites like CNN use the links for fact-check, but then the editors often remove some or all of them. This is fine - the statements I am saying are accurate (to my knowledge) and the links are not exhaustive. In fact, they are often self-referential in an entirely non-reliable way: I link to my own writing as examples, so if I was wrong once, I just replicate my wrongness (I'm not wrong!).

So here are all the Francis links from my latest CNN piece.

The New Franciscan Revolution 

It's time to stop being surprised by Pope Francis. 

  • His tweets echo around the world.  
  • He eschews the fancy trappings of office favored by his predecessor, from the pope-mobile to the red shoes
  • He washed the feet of prisoners, including a Muslim woman, on Holy Thursday. 
  • He telephones ordinary people who write to him.
  • In Rome, he called for “revolutionaries” to leave the comforts of their home and bring the word into the streets. 
  • In Rio, he told the gathered youth to “make a mess” in the dioceses as they help the church shake off clericalism. 
  • He has sought to create a “culture of encounter” in which atheists and Catholics might come together. “Do good,” he said memorably, “we will meet each other there.”  
  • When he announced that he would canonize Pope John XXIII, the great reformer, on the same day as John-Paul II, he emphasized continuity among all Catholics, even those of different factions. 
  • When asked about gay priests, he replied, “Who am I to judge?” 
  • Most recently, he gave a long interviewin which he articulated a new vision of the church that does seem revolutionary.
  • As repeatedly stated by commentators and church officials, he has not changed anything.  
  • Traditionalist response to Francis has concentrated on his personal charisma while emphasizing the orthodoxy of his doctrinal positions (I could have linked Donohue here).
  • In a recent interview with the New Catholic Reporter, Cardinal Timothy Dolan of New York, talked about the new pope. He said that in the wake of Francis, he found himself, “examining my own conscience ... on style, on simplicity, on lots of things.” The Cardinal wondered whether his living arrangements, in the historical residence of the archbishops of New York, were appropriate. 
  • Pope Francis, on the other hand, might have a plan for an empty Archbishop’s residence if Cardinal Dolan wanted to downsize. After all, he did recently suggest that empty church property should be used to house refugees.

 Happy reading!

Monday, September 23, 2013

T-shirts and civil rights

Over the last week, news and reaction about the Ethan Saylor case continued to unfold. I want to use my Monday morning blog to highlight an especially important response from The author is also a parent of a child with Down syndrome and wrote in response to this story from Maryland.

In the story, we are shown a bright yellow t-shirt that says, "I have autism. If I am alone please call 911." I know the creator of the shirt wants to do the right thing here. She is trying to solve a problem.

Never mind the slippery slope argument that leads to institutionalization (a road we've been down before in this country). Never mind issues of agency and representation.

I just want to quote the blog author, Jisun:
It is not an individual’s responsibility to wear or show evidence of his or her diagnosis in order to remain safe and retain their basic civil rights.
Read the whole entry. Share that entry.

I'll weigh in with more thoughts as the week progresses. But that one sentence says enough for me.

The solution is to change the cult of compliance and to build inclusion into our society. Not to label in bright yellow.

Sunday, September 22, 2013

Cardinal's Law (A corollary of Godwin's Law) - The Church, Sex Abuse, and Online Discussion

Every time I write about Catholicism, a certain set of commentators immediately invoke the child sex abuse scandals regardless of the issue at hand. This is particularly true if you say something positive about any aspect of the church. Given Pope Francis' well-publicized and generally well-received comments, especially by people generally opposed to the church hierarchy, this has happened a lot to me lately. Just peruse the comments of any CNN thread on Pope Francis and you'll see it instantly.

I see two ways of thinking about this:

First, there are people for whom Catholicism simply equals the pedophilia scandal. It's genuinely impossible for them to think about the word Catholic without thinking about child rape. This is a serious problem and an understandable one. These scandals are so horrific, the reactions of the hierarchy over the years so unacceptable (and often criminal), and the media coverage so widespread, that forming a metonymy between Catholicism and pedophilia in the public consciousness is natural. That said, the kind of positive publicity that Francis is generating threatens that metonymy, which brings us to the second mode of discourse.

Second, some people hate/fear organized religion in general or Catholicism in particular to such a degree that they want to derail any conversation that might lead in a positive direction. Saying, "child rape" is the nuclear option that ends any possibility of discussion. If you are trying to talk about Catholicism in all its complexity, and someone says - "they are child rapists" or "covering up for child rapists" or "it doesn't matter what Francis says, because child rape" or "every child rapist and everyone who covered for them must be in jail" or any iteration of this kind of thing - the conversation ends.

It thus functions in the spectrum of Godwin's Law, a well-known assessment of internet discussion in which people use comparisons to Hitler/Nazis to derail/end conversations.

In (dis)honor of Cardinal Bernard Law, I have decided to name this corollary Cardinal's Law:  Here's my proposed text: As an online discussion about Catholicism grows longer, the probability of the conversation becoming an argument about pedophilia and culpability grows larger.

Any friendly amendments/edits?


One manifestation of Cardinal's Law goes as follows: Maybe Francis has said good things about topic X, but he's done/said nothing about child rape, so it's all meaningless.

As a counter, here are some of the things that Francis has said/done about the sex abuse scandals. Is it enough? No. Can there ever be enough? Probably not. I'm not interested in defending the Church on this issue and I think Francis needs to do more. But until we agree on what he has done, what the facts are here, then we can't really know what needs to happen next.

(Reuters) Mueller is head of the Congregation for the Doctrine of the Faith, the Vatican department which includes the office of the "promoter of justice", or sex crimes prosecutor, which investigates cases of sexual abuse and decides if priests are to be defrocked
Francis said the department should continue to "act decisively as far as cases of sexual abuse are concerned, promoting, above all, measures to protect minors, help for those who have suffered such violence in the past (and) the necessary procedures against those who are guilty," a statement said.It said the pope wanted Catholic bishops around the world to promote and put into place "directives in this matter which is so important for the witness of the Church and its credibility".
A victims' group, the Survivors Network of those Abused by Priests (SNAP) said the statement did not go far enough and criticized it for saying that the Church's stance against sexual abuse was "a continuation" of the line wanted by Francis' predecessor, Pope Benedict.
"Action, not discussion, is needed," SNAP said in a statement.

  • 4/24/2013 - Criticism of the "transfer" policy (Christian Science Monitor)
    • This is actually from a series of writings published before he was pope, including from his authorized biography. He talked about the common practice of transferring priests accused of abuse, often putting new children at risk.
CLERGY ABUSE: Francis says punishing the priest is more important than protecting the church's image.
"We must never turn a blind eye. ... I do not believe in taking positions that uphold a certain corporate spirit to avoid damaging the image of the institution. That solution was proposed once in the United States: they proposed switching the priests to a different parish. It is a stupid idea; that way, the priest just takes the problem with him wherever he goes."
  • 7/28/2013 - Press Conference, Papal Flight 
    • Francis was asked about Monsignor Ricca's alleged history of consensual homosexual behavior in the past. Francis wanted to distinguish between consensual homosexuality and pedophilia. Given the link made between homosexuality and pedophilia (a major trope in Russian discourse on homosexuality is that it leads to child rape), this is a vital distinction.
    • It's a really important quotation in other ways, as I argued in The Atlantic, because he's saying the problem with the alleged "gay lobby" in the Vatican is not that they are gay, but that they are a lobby. I argued that  Francis has made strides in the normalization of homosexuality as something other than an intrinsic evil. 
Ilze Scamparini
I would like permission to ask a delicate question: another image that has been going around the world is that of Monsignor Ricca and the news about his private life.  I would like to know, Your Holiness, what you intend to do about this?  How are you confronting this issue and how does Your Holiness intend to confront the whole question of the gay lobby?
Pope Francis
About Monsignor Ricca:  I did what canon law calls for, that is a preliminary investigation.  And from this investigation, there was nothing of what had been alleged.  We did not find anything of that.  This is the response.  But I wish to add something else: I see that many times in the Church, over and above this case, but including this case, people search for “sins from youth”, for example, and then publish them.  They are not crimes, right?  Crimes are something different: the abuse of minors is a crime.  No, sins.  But if a person, whether it be a lay person, a priest or a religious sister, commits a sin and then converts, the Lord forgives, and when the Lord forgives, the Lord forgets and this is very important for our lives.  When we confess our sins and we truly say, “I have sinned in this”, the Lord forgets, and so we have no right not to forget, because otherwise we would run the risk of the Lord not forgetting our sins.  That is a danger.  This is important: a theology of sin.  Many times I think of Saint Peter.  He committed one of the worst sins, that is he denied Christ, and even with this sin they made him Pope.  We have to think a great deal about that.  But, returning to your question more concretely.  In this case, I conducted the preliminary investigation and we didn’t find anything.  This is the first question.  Then, you spoke about the gay lobby.  So much is written about the gay lobby.  I still haven’t found anyone with an identity card in the Vatican with “gay” on it.  They say there are some there.  I believe that when you are dealing with such a person, you must distinguish between the fact of a person being gay and the fact of someone forming a lobby, because not all lobbies are good.  This one is not good.  If someone is gay and is searching for the Lord and has good will, then who am I to judge him?  The Catechism of the Catholic Church explains this in a beautiful way, saying ... wait a moment, how does it say it ... it says: “no one should marginalize these people for this, they must be integrated into society”.  The problem is not having this tendency, no, we must be brothers and sisters to one another, and there is this one and there is that one.  The problem is in making a lobby of this tendency: a lobby of misers, a lobby of politicians, a lobby of masons, so many lobbies.  For me, this is the greater problem.  Thank you so much for asking this question.  Many thanks.
 So - What did I miss? 

Sunday Roundup

This week I wrote blogs on parenting, disability, Miss America, police violence, pole-sitting (and Byzantine saints), and the secrets of my writing process. I also published an essay on Pope Francis for CNN and re-wrote a blog entry for the Good Men Project.

Thank you new readers, friends, twitter followers, and whoever else you are. Just the act of clicking "LIKE" on Facebook helps me feel more confident as a writer and activist. It's an act of faith that not only did I write something you found interesting, you think I might do it again someday. I'll try not to let you down.

Here's the weekly roundup.

  • Last Sunday - Gunshots in Times Square took a look at the police shooting in New York as more evidence of the failure of police to know how to respond to disability/different behavior.
  • Monday turned to Miss America, race, and gender.
  • Tuesday was an important blog entry to me, and not one that got as much reading as I would like (hint - please read and share on your networks if you like):  I talk about the issues of agency and representation in the story of an artist with Down syndrome giving a gift to the royal family (U.K.)
  • Wednesday: Deaf Boy Tasered for Being Deaf. The story ricocheted around DailyKOS and Twitter. Critics noted we don't know all the details, and that's right, but I have enough data to say this outrage is part of the pattern of the Cult of Compliance. I'm going to keep pushing that phrase in my writing in hopes it enters the public discourse as a problem. 
  • Thursday: Bullying to Prevent Bullying.
  • Friday, having written the most read entry of this blog's brief history, I turned to pole-sitting in the 1920s and Byzantine saints, just to keep you on your toes.
  • Saturday, while my son was watching Elmo, I offered you my writing secrets - 63 easy steps to Op-Ed writing.

Saturday, September 21, 2013

How to write an opinion essay in 63 easy steps

  1. Have opinion.
  2. See if anyone else has that opinion.
  3. Oh, someone does. 
  4. Go back to work.
  5. Have a different opinion.
  6. Test it on facebook.
  7. Realize it's an IMPORTANT opinion.
  8. Start drafting.
  9. Writing is hard. Go back to work.
  10. Realize that you also write for work
  11. Well, you could grade some papers.
  12. Or do committee work.
  13. Or maybe do that class prep.
  14. And isn't your conference paper due soon?
  15. Go back to drafting essay.
  16. Writing is still hard.
  17. Instead of writing essay, write a quick pitch and send it to an editor. 
  18. After all, no sense in writing the essay if there's nowhere to publish it
  19. Editor rejects. Already has enough on that topic.
  20. Feel crestfallen but relieved because writing is hard.
  21. Still have opinion.
  22. Send just one more pitch to a different editor.
  23. Repeat steps 19-22 until pitch accepted or you need a snack.
  24. Mmmm, snacks.
  25. Start writing essay based on approved pitch.
  26. Struggle to find lede.
  27. Mmmm, snacks.
  28. Lede was apparently hiding in potato-chip bag. 
  29. Maybe there are more writing ideas in this bag.
  30. No, just chips. Delicious, salty, crunchy, chips.
  31. Writing is easy! Words pour out like grease from your pores after eating all those chips.
  32. Reach middle of the essay and realize you have no idea where the essay is going.
  33. Start composing email to editor eloquently explaining why you cannot submit an essay by deadline.
  34. Sigh.Writing is hard
  35. Go back to writing essay.
  36. Remember opinion. Believe it's important. 
  37. Send draft to readers.
  38. Accept all criticism graciously.
  39. Inside voice: Respond to critics with: "I'll get you my pretty and your little dog too!"
  40. Revise.
  41. Repeat steps 37-40 until reasonably satisfied or self-imposed deadline is reached.
  42. Send to editors.
  43. Wait for edits.
  44. Weep over edits.
  45. Be brave, those words are your babies, but they must fly free.
  46. Ok, that was really bad writing.
  47. Accept
  48. Wait for essay to be published.
  49. There it is!
  50. Obsessively track social media shares of essay.
  51. Grumble at site placement.
  52. Grumble at not being tweeted by site enough.
  53. Read comments.
  55. Answer inflammatory comments.
  57. Repeat steps 50-56 until someone makes you take a shower and maybe eat some breakfast.
  58. Mmmm, breakfast.
  59. Take one dollar and all the money received from opinion writing and buy one donut for 99 cents. 
  60. Hey, you've got a penny!
  61. Can't buy much with a penny these days.
  62. Someone should write something about that.
  63. Have opinion.

Friday, September 20, 2013

The Stylites of the 1920s

I'd like to welcome all my new readers and sincerely thank you for your interest. The last two posts - on the tasering of a deaf boy and the bullying to prevent bullying - have been among the most read ever on this blog or in re-postings.

I like to write about parenting, disability, and gender as my main topics. But I am also an historian and riveted by the way, to paraphrase a paraphrase of Mark Twain, history doesn't necessarily repeat, but it seems to rhyme. So at least once a week, I turn to the ways in which history rhymes.

Below is a video from Vanity Fair that talks about pole-sitting in Baltimore in the 1920s. It features the historian Kris Lindenmeyer talking about the trend, the impact on media of spreading this bizarre but cool practice (I like it better than "planking"), and the gender components. There's also lots of great video.

Watching this video, I was reminded of the Stylites, Byzantine saints who sat a-top pillars, often in highly urban settings. Being a stylite allowed the holy person to isolate themselves from a community while still being visible to the community and often in conversation with the community. St. Simeon is the famous progenitor of this practice, but others followed. David Blaine reportedly based one of his stunts on the pillar saints, but perhaps he just made that claim because it was somehow more dramatic than linking back to pole-sitting.

More recently, pole-sitting has become a form of protest art. For example, Harold David Werder spent over 400 days on a flag-pole to protest the price of gasoline, then at $1.20 a gallon.

There's probably some deep psychological interpretation that could be made about this urge to be apart but visible, but that's outside my range of expertise. Today, I'm just in it for the rhyming of history.

Happy Friday.

Thursday, September 19, 2013

Bullying to stop bullying.

Not long after our son Nico was born and diagnosed with Down Syndrome, we began sharing the news with our community of friends and family. Frequently, people found a way to express their concerns by talking about bullying. I've spent years thinking about why that is, how the mental space occupied in people's minds by "Down Syndrome" = bullying.

It's a real problem and one I worry about too, but I worry more about Nico's ability to talk, his health, what happens when he turns 21, what happens when I die.  Bullying isn't anywhere near the top of my list of concerns. But it is on the list.

At any rate, there's more to write about here later, as I think the focus on bullying reveals some important things about agency and representation of the disabled in our culture.

But today's post focuses on Central, LA, and the story of a father who decided to teach his son not to bully kids with special needs, by bullying him.

One Central father used a little public humiliation to teach his son an important lesson over the weekend.
Tim Bandy and his son Alliance spent an hour of their day Sunday in front of Central High School in an attempt to teach the six year-old a very important lesson.
"I drew a sign up, front and back, and stood him on the side of the road in Central where he goes to school. The sign read 'I will not bully or pick on kids with special needs.’ And he stood out there for about an hour," explained Bandy of the interesting punishment.
Bandy expanded on the punishment:
"Quit being a follower, be a leader. If it's right, it's right. If it's wrong, it's wrong. Make your own decisions, because if you follow everybody else it's going to get you nowhere. And like I told him, 'where's all your friends at that were doing the same thing? They’re at home playing, church, whatever they do on Sunday, and you're here standing on the side of the road looking like a fool,” added Bandy.
Bandy agreed that some parents may find his method a little extreme, but he cautioned them to not knock it until you try it.
“What’s more extreme? Doing that? They get in trouble, whoop him? Taking all of his stuff away? I mean, it's an hour of his time. It doesn't hurt him. It might hurt his feelings, but I am still alive, I’ve had my feelings hurt quite a bit," said Bandy.
I know the father meant well. He wants to be an ally. I'm glad he thinks his son's bullying is important enough to require this kind of punishment. It might even be effective in changing behavior. I always wonder what I would say to a parent whose child bullied my son, or, for that matter, my daughter.

But what does the son end up learning? He learns that his father can humiliate him publicly. He learns that children with special needs are to be protected. Does this shift his understanding of disability? Does he learn to see people with special needs as people, as whole people, with whom he can engage and form relationships? Does anything change other than the boy being afraid of future humiliations? I don't think so.

And I can't help but dig into the father's quote: His three strategies are: Take away his things, humiliate him, or "whoop" him. These are effective strategies, and sometimes I take things away from my kids when those things are enabling mis-behavior. But I know it's never my best parental strategy. At my best, I create positive rewards which they have to earn through good behavior; ideally, the rewards are directly linked to the behavior, but just a star system (do good things, get stars, trade stars for dessert/TV) can work wonders.

At the core, the challenge facing this father is how to teach empathy to his son. That's a tough one and there may be no more important job for a caregiver.

Ultimately, I don't think you teach empathy through shared suffering, but through shared joy.

Wednesday, September 18, 2013

Deaf Boy Tasered - Police Violence and Disability continued

For the past year, I have been writing about a persistent pattern of police violence against people with disabilities. I have been particularly focused on the Ethan Saylor case, of course.

But the stories proliferate, with a new one almost every week. On Monday, I argued that you can read both the Times Square police shooting and the Ferrell case through the lens of police not knowing/caring how to respond to people acting "differently." The racial reading is of course front and center for that second case, of course, but seen through the lens of trying to explain how Ferrell is acting, temporarily disability following an accident makes sense.

Alas, the stories proliferate, many of them following the general pattern of the cult of compliance. Digby, who is one of the leaders on this topic, brought this story to my attention.

A deaf boy was escaping abuse and ran away from a school. The police found him, approached, then tasered him when he didn't respond. Here's the key paragraph -

Police arrived at the construction site after dark. Knowing the boy was deaf, they allegedly made no effort to warn or communicate with him, but Tasered him from behind. As A.M. writhed on the ground from the “burns, paralysis and pain” caused by the Taser barbs, the two police officers rushed him and placed him in handcuffs.
There's a lawsuit, some money will change hands, and in no way will the cult of compliance be threatened.

It's worth thinking through this scene from the perspective of the police officer.  It's dark. He knows the boy is deaf so can't be verbally controlled. At that point he just decides to solve the problem with a quick jolt of 40,000 volts. Does he talk about it with his partner first? I suppose they are worried he'll run away again (a reasonable guess given the awful situation).

We need to assert our right NOT to be tasered just because the police want us to comply. It's crazy that we have to even argue for this.

Tuesday, September 17, 2013

The Royal Family: Disability and Agency

I ran across a story on the Huffington Post. The title - Will And Kate Fight Stigma Against Down Syndrome In Beautiful Way.

The story unfolds by talking about the royals first:
He’s only a little over a month old, but Prince George may have already learned his greatest lesson from his benevolent parents.
Prince William and Kate Middleton usually shirk gifts for special occasions, but they recently made an exception for an artist with Down syndrome, TODAY reported. Tazia Fawley, 43, spent six months crafting a bright painting of children’s classic Rupert the Bear flying over a bridge in the Bristol Balloon Festival in England in hopes that the royal couple would accept it and hang it in their home.
The story then briefly moves into a discussion of the artist, before returning to its discussion of how wonderful Will and Kate are.

First - nice job royal family.

Second - the story here is about this wonderful artist - her talents, her interest in the royal baby, her development as an artist, and so forth. We talk about person-first language - woman with Down syndrome, not Down syndrome woman. In this article, the headline doesn't even have a person, just the two celebrities fighting stigma. They are the active ones here and Fawley is invisible.

I try not to judge headlines harshly as they exist solely to drive clicks and "Will and Kate" are going to get more clicks than just about anything else. But the whole tone of the piece makes it about the royals, not about Fawley, who surely is the real story here. She's the actor - painting, getting the message to the royals (through her parents, who are also interesting to think about as all three of them deal with age and disability). Will and Kate are passive - they receive the gift. I'm actually very pleased about that, but really, all they did was say yes. The story is Tazia Fawley.

When we write about charity, and this came from HuffPo "impact," which is all about how people make a difference, it's easy to fall into the trap of giving all the agency to the benefactors - the people with money, the people with foundations, the people saving the poor people, the sick people, the children, the brown people, the uneducated, whatever. It's important not to render the people with a need mere foils on which to shower generosity and then show off benevolence.

The original piece from the TODAY show is better, I think, as it emphasizes the artist and her family. It takes about the process of getting the painting to its destination and how Fawley feels about her work (wanting color for the baby).

It turns out that I'm perfectly comfortable with Will and Kate serving as her foil and headline driver, so people click and read about this remarkable woman.

For the record, here's her lovely work of art.

Monday, September 16, 2013

Here she is, your Miss America

I know you all stayed up late last night following Miss America, watching the extended commentary on C-SPAN, and have already purchased the DVD, so this little blog entry may come as no surprise - but an Indian-American won the contest and lots of racists on Twitter said racist things.

Actually, Miss America is no longer a national event (thanks cable TV and the internet for ruining that too). I have no idea what its demographic is, but until a lot of racists started being racist out loud, almost none of my friends commented on the pageant. Rather, they were watching Breaking Bad. I tried watching the first episode of Breaking Bad, but a show about disability and cancer seemed a little too raw for me last October. Maybe I'll try again sometime. I was watching the Red Sox sweep the Yankees, followed by The Great Food Truck Race, in which a team from L.A. discovered there's no foot traffic in downtown St. Paul on a Sunday.

I remember watching Miss America as a kid, sometimes, mostly with my mother making sarcastic comments (go second-wave feminist mom!) and telling me about the important 1968 protests. I went to college with a Miss Mississippi, so watched the show during my Freshman year - she made the cut, got to sing a song about Ice Cream on TV (I think it was this song, sung here by Kristen Chenoweth), then didn't make the next cut. And that's about all I have to say about my personal experience watching Miss America.

And yet, I do think that the contest can operate as a kind of Rorschach test, with Twitter providing a lovely stream of reaction for us to ponder an old and vital question - who gets to be American? Who gets to decide?

According to this essay, we've seen a normalization of African-American beauty. The author, Elwood Watson, who co-edited There She Is Miss America: The Politics of Sex, Beauty, and Race in America’s Most Famous Pageant (Palgrave, 2004), notes that no African-American women competed until the 1970s, and writes:
While Vanessa Williams’ green eyes and light complexion, Suzette Charles’ biracial background, Debbye Turner’s, dark, yet Anglo defined features and Marjorie Vincent’s classic Black features were the subject of media attention, later winners did not face such intense scrutiny. In fact, by the time Kimberly Aiken captured the crown, very little was made of the race of these contestants. However, this did not mean that the pageant had moved totally beyond the issue of race.
From time to time the comments of some contestants in interviews made it clear that some of them believed that pageant judges were being “preferential to non-White contestants” or was becoming “politically correct.” Such comments demonstrate that despite the significant racial strides the pageant has made, that it is an issue that remains a controversial part of the pageant as it does in society at large.
 I was surprised to learn that there has never been a Latina Miss America.

What's interesting, if entirely predictable, about this contest is that Miss Kansas also represented a first: Tattoos. I read about her from this piece on CNN, an article filled with snark, winks at the reader, and sexism to my reading. It reads:
She could, maybe, be the first beauty pageant contestant to sport a tattoo, but determining that would necessitate reportage on the obscured derrieres and other regions of hundreds of past contestants.
So we'll just say Miss Kansas, Theresa Vail, is the first beauty queen to prominently sport a large tattoo during a pageant.
But that's not the only thing that sets her apart from most bombshells. The Miss America contestant also hunts deer with a bow and is an M16 marskman (markswoman?) serving in the U.S. Army while double-majoring in Chinese and chemistry at Kansas State. Oh, and she's working on her private pilot's license.
"I'm all about breaking stereotypes," she said. "Everybody thinks of Miss America as this girl on a pedestal. I want her to come down from that. She is just a normal girl."
Her tattoos are of the serenity prayer and a military medical insignia, because she wants to have a career in dentistry. The piece quotes her as saying:
"If I were crowned Miss America, bearing my tattoos, do you realize the stereotypes and stigmas it would break?" she wrote. "Do you realize it would pave a path for a whole new audience to compete in the Miss America Organization?"
Funny she should mention breaking stereotypes, because for some of the racists, she became the symbol of the true American spurned by the false American. This is not her responsibility, but when FOX News host tweets:
The culture war is on.

As for me - I was interested in Miss Iowa, a woman born with only one whole arm.  She says:

She said one TV station surreptitiously shot close-ups of her partial arm without her realizing it and made that a central part of their report.
"I got a lot of unwanted attention, but there's also the flip side of this enormous platform" to bring attention to people with disabilities.
A hearing-impaired contestant won in 1995, but for a contest focused on physical beauty, the inclusion of Nicole Kelly pleases me I suppose.

In the end, the brief and soon-forgotten twitterstorm over Nina Davuluri will fade, just another milestone on the path to a changing, multi-racial, America and the challenges that presents to both those in the vanguard and those who feel under assault.