Global Crisis

In April 2014, Sesame Street announced a partnership with Autism Speaks. Autistic indivduals and their allies quickly organized to push Sesame Street to do better, and not listen solely to a group dedicated to perpetuating the worst stereotypes about autism.

The results are pretty good. From an LA Times article on the process:

Children with autism vary in their traits significantly: some can talk, while others can’t. Many of them are sensitive to noise. Some have trouble keeping eye contact, and many of them experience the world differently, so they’ll touch different objects to explore the sensation of texture. Perhaps because of this range, autism is also extremely controversial. While some organizations, such as Autism Speaks, consider autism a syndrome that calls for research to help mitigate its effects, others, such as the Autism Self-Advocacy Network, simply view autism as an alternative way of expressing oneself.
So by stepping into the fray, and by choosing the traits for one character to represent autism, Sesame Street risked facing backlash.

“Sesame can be a great convener of different interests,” Westin said. “We were able to bring people at opposite ends of the spectrum, pun intended, from Autism Speaks, to the Autism Self-Advocacy Network. Those groups see certain things differently, but what they had in common is they wanted to give families and children tools.” Both groups have released statements supporting the initiative...

Ultimately, after working with these groups and experts from such institutions as the Yale Child Study Center, they decided on these characteristics for Julia: She can talk. She cannot make extensive eye contact. And she flaps her arms when she gets excited. “We chose things we thought would be most helpful and most typical,” Westin said. On top of these markers of autism, Julia is very curious and smart.

 It's good to see that Sesame Street was willing to listen to actually autistic people and create a positive, realistic, autistic muppet.

I met Arthur Chu this summer at a workshop on the problem of misogyny on the internet and we've been corresponding via email and social media a lot since then. Our writing interests overlap when it comes to representation issues in media and games. He interviewed me on the problem of claiming "authenticity" as a way to avoid diversity.

This is one of the worst essays I have ever read on disability. An abled person informing the disability community that inspiration porn is a good thing. She even has the audacity to cite Stella Young. Here's the piece, then a commercial that I think does a better job.

There’s a debate raging on the internet right now about whether or not it’s cool to call disabled people ‘inspirational’ – and going beyond that, whether it’s a) a good thing or b) downright patronising to use them in advertising/promotional campaign - leaving aside the slightly unfortunate casting of Oscar Pistorius as the ‘face’ for a male designer fragrance a couple of years ago. Ooops.

Microsoft, for instance, has been showing off how its technology has helped a six-year-old boy with prosthetic legs. During the American Superbowl footiefest earlier this month, Paralympian Amy Purdy (who has two prosthetic legs) was enlisted to run, dance and even snowboard on behalf of Toyota.

And I say: more power to their elbows. Or possibly bionic knees. I am, I acknowledge, writing this from the standpoint of someone with two legs and two arms whose only (small) disability seems to be that the bit of my brain which can process instruction manuals appears to be entirely absent.

So much wrong. First, her little joke about instruction manuals betrays fundamental ignorance about disability. It's not a joke. We're not all "just a little bit disabled." The notion that we might move in and out of disability throughout our lives is a sophisticated and complex concept, layered with disability hierarchies and the complexities of our medically-guided society.

Furthermore, inspiration porn is not about being patronising, but about using disability to make abled people feel good/inspired.

She goes on:

The question is asked: should disabled people be positioned as ‘inspirational’? By suggesting that they somehow have additional, superhuman qualities for achieving great things, is this not offensive? Aussie comedian Stella Young has referred to the putting of disabled people on some kind of pedestal as ‘inspiration porn’.

If you don't know Stella Young, sadly recently passed away, go watch her TED talk and read her writings and interviews with her. You'll be glad you did. 

I believe this author that she doesn't "see how this can be anything but a positive thing." One person who might tell her why was, of course, Stella Young. She goes on to talk about her brother-in-law, in a wheelchair, an inspiration to all, with a "harem" (which makes me wonder about her sister).

She talks about the ways in which the disabled were generally invisible in the past, so more visibility is good, and this is true so far as it goes. But visibility does not necessarily lead to change, it leads to people thinking - hey, everything is ok now! I remember when a comedy group did a whole show making fun of disability because "they've got the ADA and we don't." Visibility can lead to complacency.

As for someone who is born with a disability? Whatever happens to each of us is our ‘normal’ – and we don’t know any different. But yes, I do still feel for anyone who is faced with a daily challenge like getting up kerbs in a wheelchair, or shopping in a supermarket (no pushing trolleys for the single disabled shopper), or who has to strap on a prosthetic limb to go to the loo in the middle of the night.  

She "feels" for you, disabled people. That's the end result of all of this - her feelings for you. She feels good about herself because she feels bad for you.

The problem with this article is not, in fact the article itself, but that it reflects the dominant mode of representation and discourse about disability in modern media and everyday life in western culture (and maybe elsewhere, I don't know).


Here's an ad that I like (and it's a real family, though one with a reality-TV background). A multi-ethnic and multi-ability family (remember, disability IS diversity) using "assistive technology," by which I mean an easily extendable mop. It went reasonably viral, with a 2 million + views on YouTube, but I think it deserves more attention. There's nothing inspirational here. There's nothing about making you feel good about yourself because the disabled person has overcome adversity. Rather, there's a tool that's pretty useful set within the context of everyday family life.

Today I have a new piece on CNN about Kanye West. I build on yesterday's blog post, expanding my argument that the Kanye West's behavior is a magnified celebrity egotistical version of the kinds of skepticism and suspicion faced people with disabilities all the time. In the piece, I write:

Reaction to this incident throughout social media and in numerous publications was swift and condemnatory. West, in return, lashed out at the media. But in fact, although West's celebrity magnifies the story, the bigger issue here is that his demand that his fans prove their disability is entirely typical.

Every day, in every context, people with disabilities get challenged to prove how disabled they are. This constant questioning isolates people with disabilities, increases stress and shame, and can lead directly to verbal or even physical abuse

I finish the piece with these thoughts:

Thanks to the Americans with Disabilities Act, to claim disability is to ask for reasonable accommodation -- accessible buildings, more time on tests, audible formats for books, Social Security disability payments, and more. Too many people seem to regard the request to accommodate as a burden and meet such requests with suspicion. The not-disabled exercise their privilege by demanding that people prove their disabilities; then, all too often, proof just generates pity, not understanding or inclusion.

By demanding everyone rise, by calling out the disabled members of his audience even as he grudgingly tolerated their inability to stand, West was being totally normal. If you think what he did was wrong, remember that the next time you are tempted to stare down someone walking from a handicapped spot at the grocery store. Remember that the next time someone managing pain can't make it into work. Remember that the next time a student needs a little more time on a test.

One key takeaway from the piece, I hope, is the understanding the disability is not a binary. People are not either perfectly disabled or perfectly abled. Rather, we are all at the most temporarily abled, moving in and sometimes out of states of disability throughout our lives, or even just in a single day as we expend whatever strength we have and then need accommodations.'

I like to think about disability, especially physical disability, as overlapping spectrum that people might move along it as conditions change or just when they've used up all their spoons (read about the "But You Don't Look Sick" spoon theory here, it's a useful analogy). It's more complicated for intellectual/development disability because one doesn't want to normalize "typical," but that's a topic for another post.

That's not how our culture sees it. That's not how Kanye West sees it. For them, you are either disabled or not. You can't need accommodations just some of the time, in such a perspective.

But that's not how disability actually works. And everyone who has ever been sick or had an operation knows this. Disability works in many ways. An inclusive society accepts all of these ways and tries to build an accessible world, for whoever, whenever, under whatever circumstances.

[Content Note: Ableist Speech including use of the "r-word." Later, I quote a passage from Huckleberry Finn that contains the n-word.]

This post works with a 1996 piece from David Sedaris and This American Life that contains terrible depictions of the intellectually disabled. It was re-broadcast in 2013. I'd like to see content notes on this episode. Here are my questions.

Can the trigger warning open up conversation, preserve texts that contain prejudicial language, and be a pathway to communication? When something from the past contains speech that now is widely deemed offensive, what do we do? I argue that the content note or trigger warning is a pathway towards preserving dialogue, preserving material, as it offers a middle ground between banning and shrugging.

The post is long, but you can just go read the storify of about 12 tweets that summarized the whole thing, with my conversation partner David quoted with permission.

For those just joining me ...

A few weeks ago I wrote a piece for CNN about an episode of This American Life featuring Wyatt Cenac. He compared a drug episode to having adult-onset Down syndrome, which I didn't like for reasons I explain. To my surprise, we connected over Twitter, then talked for a long time on the phone (summarized at link). I came away thinking that he's an enormously thoughtful person about comedy, discourse, prejudice, and representation. He's now, actually, a guy I hope I could go to first to ask for smart thoughts about the complexities of humor. I hope he still takes my emails when this kind of thing comes up again (as it will).

One of the things I argued in the piece is that perhaps we, in the disability community, focus too much on the r-word over the issues of representation that such language reflects. I'm calling for a broader engagement on such questions beyond the single word. So, naturally, here's a piece about the r-word.

The next day, another father wrote me about his experience in 2013 hearing a re-broadcast of the 1996 "The Santaland Diaries," the enormously successful radio adaption of David Sedaris' tale of being an elf at Santa-land. It's a story of loathing for others and self, and includes this section:

At noon, a large group of retarded people came to visit Santa and passed me on my little island. These people were profoundly retarded. They were rolling their eyes and wagging their tongues and staggering towards Santa. It was a large group of retarded people and, after seeing them for 15 minutes, I could not begin to guess where the retarded people ended and the regular New Yorkers began. Everyone looks retarded once you've set your mind to it.

Here are a few opening points.

First: this is MUCH WORSE than Cenac's joke. Cenac knew his story required explanation, tried to provide it in a way that explained he knew there was no such thing as adult-onset Down syndrome. He wanted to be true to his experience with pot, the actual words he thought at the time, without offending ... well ... me and those like me. What was interesting to me was that, as a listener and parent of a child with Down syndrome, the explanation failed to change the meaning of the bit. I wrote about it because I think these gray areas, these complexities, are exactly where we need to explore. If he had just made a lot of r-word jokes, there would have been no story there other than: Comedian offends to try and get a laugh. And that's not a story.

My question for the CNN piece was how Gervais' "it's not about disability" or Cenac's "I know this is not how Down syndrome works" play into the world of disability and representation. Although I regret that Cenac got a lot of grief on twitter over it (and called for it to stop), and I wish we had been able to speak before hand, I stand by my experience as a listener to the bit. I also accept Cenac's articulation of his intentions and find them reasonable. I think just a shade more context, a few more minutes of time, something, might have really changed the nature of that story.

But in Santaland, Sedaris is deliberately using this kind of language in order to say, ultimately, that New Yorkers at Santaland all seem retarded to him. He is using the most stereotypical descriptions possible in order to get that laugh. Rolling eyes. Wagging tongues.

Second: This was recorded in 1996 and written some time before. The word "retard" was already objectionable then, but had not achieved the kind of wide-spread cultural rejection as it had by 2013. We have made progress. In 1996, it was not reasonable for a parent to expect to avoid the r-word altogether. Here, though, I don't expect to hear someone saying it directly at my son, but rather as the casual self-or-other insult that teens use. And even that is fading generationally. So far, I have only heard it used to describe people with intellectual disabilities directly when voiced by an older person who learned to say "mentally retarded" as the correct, polite, non-insulting language. I rarely correct such cases.

So Sedaris was, to my reading, deliberately mocking the disabled in order to mock New Yorkers. He used a term that had not become a universal pejorative at the time, but I think he recognized the cruelty of the humor because his comedy depends on loathing. Principally, he claims the rhetoric of self-loathing; given that, he can loathe all others with impunity. It's obviously worked very well for him as a writing strategy.

But let's give him and Ira Glass the full benefit of the doubt and say that in 1996, no reasonable media personality would have thought this was objectionable. Maybe a little mean, but totally fair game. I hope everyone will agree that in 2013 (or now), no reasonable person would NOT think this is objectionable and offensive. The offense is now evident.

Third: As I recounted in my blog, here's what the father who heard the re-broadcast in 2013 wrote:

I cannot explain my reaction to hearing this in any other way than to say that I felt like I was punched in the gut. I suddenly could not breathe, I had to pull over the side of the road, I turned off the radio, and then I cried. I cried so hard because I have been waiting for this moment for 6 years. I have been waiting for someone to overtly make a discriminatory comment that shook me to my core.

THIS IS WHAT BEING TRIGGERED LOOKS LIKE.

Moreover, that someone would be triggered like this was predictable. I'm glad I didn't hear it without warning.

What I asked Ira Glass, in an email that was not answered (I'm a nobody; and since he wouldn't comment for the CNN piece, he's certainly not going to spend any time on me for my blog. Busy man, I know), was what obligations the radio host had when presenting material from the past. I wanted to know what kinds of conversations and decisions they made. Whether they would just broadcast a show like this forever, or would it expire someday? How do they make those decisions?

I went back and looked at other issues in the This American Life catalog, which is of course both vast and available online. I just did a search for the word "warning." I do not claim this is

Here are some interesting sentences:

• Episode 458 - "Play the Part" - "A warning to listeners that this is a story that's partly about race, and a racial slur gets used."
• Episode 341 - "How to Talk to Kids" - "A warning to listeners, we don't get very explicit in this discussion, but we do acknowledge that people, and teenagers, have sex."
• Episode 404 - "Enemy Camp 2010" - "A quick warning for listeners before we begin. This story acknowledges the existence of sex."
• Episode 457 - "What I did for Love" - "A warning, I should say, before we go any further in this story. We're going to acknowledge the existence of sex between adults. Nothing explicit."
• From a Facebook post of theirs last August 11, on pedophilia: "Warning: the article includes some graphic descriptions of abuse."
• Episode 119 - "Lockup" -  "A warning before we start. This reading contains material that may not be appropriate for some younger listeners. There is no explicit language or graphic depictions of anything, but it does acknowledge the existence of certain sex acts."
• And most interestingly, Episode 531, from just last July (a few weeks ago). First, this intro from Glass on the website:

Hey there, podcast listeners, Ira here. So there's some cursing in this week's show, and we're not going to beep it here on the podcast and internet version of the show. If you prefer a beeped version of our program, like we do on the radio, that's great. Go to our website, thisamericanlife.org, and you can download it from there.

This thing about not beeping the words is something we've tried a few times here on the internet. And we're not sure how often we should do it, or if we should keep doing it. We would love to hear what you think. If you have an opinion about this, email us at web@thislife.org, and it would help us a lot to sort these emails out if you put in the subject header, Beep Yes, or Beep No, in the subject line. OK, Beep Yes or Beep No. I think that's pretty simple. I think you understand which one goes with which one you feel. I'm not going to say anything more about that. OK. Here is today's show.

Then Glass says [my emphasis]:

A quick trigger warning, for anybody who needs a trigger warning, that this story does include descriptions of incidents of violence against women. 

That's a fascinating aside, right? At least if you've been apart of the whole trigger warning debate (too many links to even start. Just go google it. Here's something I wrote in which I am opposed to TW policies but say that good teaching requires informing students about content.), this kind of aside shows that the folks at This American Life are, right now, trying to figure out what to do about the triggering material of their show.

Let me go on record again to say, basically, that I am a fan of the show. I don't listen to all of every episode. But when they get a great story, they do it right - funny, sad, thoughtful, etc. They can be great.

There is no trigger warning on The Santaland Diaries. I'd like to hear from Ira Glass and the other producers whether that might change. What is the process for deciding these things?

One argument against trigger warnings, one I've in fact made, is that trauma is so specific that you never can tell what might trigger one person or another. Content notes, therefore, are a better model. You say - here is the content, as best you can, and let people decide as they might. I think, though, that in 2013 it is impossible to listen to that David Sedaris passage and not think - whoa, something is wrong here, maybe we need to warn people.

This is not a new problem. Here's Huckleberry Finn, chapter 6, the voice of "Pap."

Here was a free nigger there from Ohio—a mulatter, most as white as a white man. He had the whitest shirt on you ever see, too, and the shiniest hat; and there ain't a man in that town that's got as fine clothes as what he had; and he had a gold watch and chain, and a silver-headed cane—the awful- est old gray-headed nabob in the State. And what do you think? They said he was a p'fessor in a college, and could talk all kinds of languages, and knowed everything. And that ain't the wust. They said he could VOTE when he was at home. Well, that let me out. Thinks I, what is the country a-coming to? It was 'lection day, and I was just about to go and vote myself if I warn't too drunk to get there; but when they told me there was a State in this country where they'd let that nigger vote, I drawed out. I says I'll never vote agin. (6.11)

So that's pretty complicated to read. But it's in a great work of literature, it reflects a voice of the time, and anyone who argues that Huck Finn should be banned is, well, wrong. But no one should just have it handed to them without some contextualization, right?

The Santaland Diaries is not Huck Finn. It's also not a minstrel show, though, in which the premise of the material relies on racism. We don't broadcast "Little Black Sambo." We don't show Disney's "Song of the South." We don't show overtly racist material - material that is about projecting racism - without very good reason in highly specific contexts. We do read Mark Twain.

So where does this leave us?

I do not believe that in 2013 you can broadcast a show with Sedaris' brand of speech there without a content warning. The trigger was predictable. The problem with such speech is widely known across American culture (and of course beyond). I don't think you have to cut it - though I would, as the joke is fundamentally, rather than incidentally, demeaning to the disabled.

The trigger warning, therefore, emerges as a pathway towards preserving content, preserving material as its language ages our of the mainstream into the widely and wildly offensive. Because without the trigger warning, well, then I have to advocate that this never be aired again.

Surely more on this to come.

Yesterday, I published a piece on CNN focusing on an episode from This American Life that, I felt, mocked people with Down syndrome. What was interesting to me, though, is that the comedian in question (Wyatt Cenac) wasn't just telling jokes using the r-word, but had something more complex going on. As a listener, it felt like he was trying to both tell the joke while avoiding controversy for using the joke, and I thought that was worth exploring. After the piece was published, Cenac called me and we talked for a long time, which I summarized here.

I was deeply impressed with his willingness to engage, to discuss, to explain, to listen, and I left the conversation feeling pretty good about things. I still stand by my experience of listening to the piece as genuine, but intention does matter.

Tom Delaney, a parent of a child with Down syndrome, emailed me, though, about another complex case of upsetting speech on This American Life. I'm just going to quote from his letter. It was written after a 1996 show (episode 47) re-aired in 2013:

I am writing this letter with a heavy heart. I am a huge fan of NPR and PRI. Every Saturday I look forward to hearing the variety of programs offered. I have always found comfort in the political views, satire, and social-conscious commentary offered on WBEZ.

This Saturday I was running errands and listening to “This American Life” with Ira Glass. David Sedaris (whom I LOVE) was telling a wonderful story entitled “Christmas Freud.” I was engrossed in the story and vividly immersed into his experience as a Christmas Elf at Macy’s. I will never forget hearing this story…or… the street I was on, the car I was driving, the time of day, the weather, the stores to the left and right of me, the coat I was wearing; I will remember everything about the moment I heard…

“At noon, a large group of retarded people came to visit Santa and passed me on my little island. These people were profoundly retarded. They were rolling their eyes and wagging their tongues and staggering towards Santa. It was a large group of retarded people and, after seeing them for 15 minutes, I could not begin to guess where the retarded people ended and the regular New Yorkers began. Everyone looks retarded once you've set your mind to it.”

I cannot explain my reaction to hearing this in any other way than to say that I felt like I was punched in the gut. I suddenly could not breathe, I had to pull over the side of the road, I turned off the radio, and then I cried. I cried so hard because I have been waiting for this moment for 6 years. I have been waiting for someone to overtly make a discriminatory comment that shook me to my core.

I have a son with Down syndrome. He is beautiful, loved, loving, and a valuable person to everyone who meets him. When he was born I knew that someday I would hear people make hurtful comments about him.

I know this story was written in 1996 and re-aired this weekend. When I came home and shared this experience with my husband we looked up the transcripts. I am baffled at how my beloved NPR would not recognize the insensitivity of the comments in this section of this story.

 I know that gut-punch feeling. You've got your head on swivel, waiting for the harassment, waiting for the problems, and they just don't come. We've made so many strides in society in terms of overt harassment. As I wrote for CNN:

The good news is that in recent years, sustained awareness campaigns against dehumanizing speech, coupled with some 20 years of inclusive education since the passage of the Americans With Disabilities Act in 1990, have made things a lot better in America. No one is likely to call my son the r-word to his face.

And yet, when the blow comes, it hits sharp and hard.

I think David Sedaris is often both profound and hilarious. I love This American Life. As a historian, I work on the way humans craft stories about their experience and release them into cultures, tracking ripples and aftershocks of acts of narrative innovation. As Ira Glass point out, they have also done really good episodes on Down syndrome.:  Episode #311  and Episode #358. NPR, in general, has a commitment to inclusivity that I value so deeply and that is rare in the media world.

Moreover, 1996 really was a long time ago in terms of the discourse of disability. It's not that the r-word didn't hurt people against whom it was wielded, but general awareness of that fact had not yet permeated the culture.

My question is this - what obligations do the producers of This American Life have when re-broadcasting something like this. A warning up front? Bleeping the r-word? To simply not broadcast this Sedaris bit ever again? I mean, the "rolling their eyes and wagging their tongues and staggering" is pretty terrible caricature and some bleeping isn't going to fix that. This is not about policing the r-word, but something much deeper in the humor.

Like Cenac, Sedaris might claim this was his authentic experience using authentic language from the era, but I just don't think that holds up in this case. In many ways, comparing Cenac's careful piece drawing the distinction between his imagined Down syndrome and the real thing shows how far we've come, when compared to Sedaris' lines.

I don't know the answer here. My gut says, this piece is dead. You can't play it to an informed audience and expect it to have a positive result, to make people laugh. The joke - New Yorkers look like retards - simply doesn't play anymore.

Jokes fade. Stories fade. Sometimes, the bias implicit in a story is so powerful, so central, that it will no longer have its intended effect. I think that's the case here.

I have reached out to This American Life for comment and will, of course, post any followups.

NOTE: Comments welcome. As always, people being rude to my readers get deleted without further warning.

A fellow parent and internet friend alerted me to a show on This American Life in which Wyatt Cenac, former Daily Show correspondent and comedian, made some jokes about Down syndrome. With the permission of my friend, I am posting excerpts of her email, the response from Ira Glass (producer and host of the show), and the transcript of the relevant piece.

Here's the transcript of show 524: I was so High. You can also listen to it on their site.

And my phone rang. I answered the phone. But no words would come out. I couldn't say anything. And I could hear my friend Laura on the other end. And she's saying hello.
Then, I'm trying so hard. I'm just like, say something. Just talk. Talk damn it! And finally, I am like, (UNUSUAL ACCENT) I am so [BLEEP] high. This is terrible.
[LAUGHTER]
And I did it in that voice. And I have never done that voice before in my life. I don't know where that voice came from. But I heard myself use that voice. And in my mind, I went, oh [BLEEP]. I just gave myself Down Syndrome.
[LAUGHTER]
(NORMAL VOICE) Now let me just say, I know what Down Syndrome is. I know that Down Syndrome is something that you're born with when you are born with an extra chromosome. I know all that information. I knew that information then. But something about eating this brownie made me think that somehow I had grown an extra chromosome and I now had adult-onset Down Syndrome.
[LAUGHTER]
And for people who have Down Syndrome, it's something they grow up with. And they grow up and they have healthy and happy lives. I just got it.
[LAUGHTER]
And I start freaking out. I'm just like, I'm going to have to explain this to people. And I start panicking. And I just start freaking out, freaking out to the point where I start weeping in the middle of Dodger Stadium.
And then, I start laughing. And then, I start weeping again. And then, a bunch of cops start walking towards me. And something in my brain just clicks on. It's like, Wyatt, you have to keep it together right now. I was like, (UNUSUAL ACCENT) yes. Keep it together.
(NORMAL VOICE) Yeah, Wyatt, there are cops right there. They cannot know you are high. (UNUSUAL ACCENT) No, they cannot know I am high. (NORMAL VOICE) And now, my internal monologue has become my external monologue. And I start pointing at the cops.
[LAUGHTER]
And I'm like, (UNUSUAL ACCENT) you cannot know I am high. I have to fool you. I am fooling you.
[LAUGHTER]
(NORMAL VOICE) We thought maybe it's time we should leave Dodger Stadium. I'm not sure exactly how far into the game we were. I know it was past the first inning. We might not have made it to the third inning.

My friend, J., wrote to complain and to ask that the segment was removed. That obviously hasn't happened. She wrote:

I am writing you in reference to the “I Was So High” episode broadcast a few weeks ago. We are members of our local NPR station KERA and we enjoy listening to This American Life. On this particular Sunday, my husband & I were listening to the radio on our front porch while our children were playing nearby. We tuned in about ten minutes into the episode before Cenac’s piece aired. This episode was like most: entertaining, thought provoking, and amusing. We were laughing up until the moment we heard Cenac say the words “Down syndrome” – at that moment we feared what might come next. Both of my daughters, including my younger daughter, who happens to have Down syndrome, were watching us and listening to the story, which now had our complete attention.
 When Wyatt Cenac said “Down syndrome” we feared how it would be discussed in the context of a comic’s routine about drug abuse. We anticipated hearing the R-word, Retard (a term of derision). But Cenac was choosing his words carefully and he stopped short of using the R-word in his monologue. Yet his implicit denigration for those with Down syndrome was impossible to overlook. In essence, Cenac describes an incident of abusing marijuana: he is unable to speak coherently, compulsively uses the bathroom and his thinking becomes disorganized and paranoid. He describes being so inebriated that he fears he has “grown an extra chromosome” and is convinced he has acquired “adult-onset Down syndrome”. The punch line of his monologue is having a cognitive disability: “Oh Shit!” Cenac says, “I just gave myself Down syndrome” and the crowd erupts in laughter. “This is terrible!” he repeatedly states. 

The letter, which is excellent, continues to analyze Cenac's reaction and says:

Even though Cenac avoids using the R-word, he tries to hide behind the medical term – believing it’s a safe, politically correct way to deliver an insult. As historian and author James W. Trent, Jr. writes (from Inventing the Feeble Mind: A History of Mental Retardation in the U.S.):

These words – idiot and imbecile, feebleminded, moron, defective and the like – are today offensive to us, and yet they reveal in their honesty the sensibilities of the people who used them and the meanings they attached to mental retardation…More recently, the mentally retarded have become mentally retarded persons and…persons with developmental disabilities or personas specially challenged…Behind these awkward new phrases, however, the gaze we turn on those we label mentally retarded continues to be informed by the long history of condescension, suspicion, and exclusion. While our contemporary phrases appear more benign, too often we use them to hide from the offense in ways that the old terms did not permit [emphasis mine]. 

To air a program that equates cognitive disability with the effects of drug abuse is far from humorous and entertaining – it’s reprehensible. I would no more laugh at this story than I would a racist joke. Try replacing the words “Down syndrome” for “Cripple” or “Transsexual”: disability-rights and LGBT activists would be alarmed and outraged! Hate speech against persons with cognitive disabilities is no less deplorable. 

In response to complains, Ira Glass wrote:

Hi J. -
Apologies for taking so long to get back to you.  Thanks for your thoughtful emails.  Sorry you've had to be so persistent in reaching out to get a response.

We've done many stories about people with various disabilities, including two about kids and parents of kids with Down Syndrome (Episode #311 <http://www.thisamericanlife.org/radio-archives/episode/311/a-better-mousetrap?act=1#play>  and Episode #358<http://www.thisamericanlife.org/radio-archives/episode/358/social-engineering?act=3#play> ).  I agree with you completely that nobody should have to listen to stories that mock and denigrate them.  This was a concern for me and my producers when we were working with Wyatt Cenac on his story for episode #524.  We talked about it as we shaped the story.  

But I don't agree with you that his story mocks and denigrates people with Down Syndrome.  Perhaps we will never agree on this point, but just to share my side of it: In my view, the only people being made fun of in his story are people who get high.  Wyatt goes out of his way to point out that Down Syndrome means that you have an extra chromosome (not offensive).  He points out that people with Down Syndrome grow up with it and have healthy and happy lives (also not offensive).  And he talks about his own freakout.  The only thing that possibly could be offensive is his imitation of what a person with Down Syndrome sounds like, and again - we may disagree about that - I think that's fair game for a comedian.  Black comedians imitate white people.  White comedians imitate black people.  Male comedians imitate females and females imitate men.  Wyatt isn't doing a disability version of some racist comic making fun of Mexicans or something.  In my view, it's clear he's the butt of the joke.  

If I felt differently, I wouldn't have put this on the air.  

If there's something you think I'm missing here, I welcome your thoughts.  Let's discuss it here in email.  Again, I say respectfully that it's possible we are not going to agree on this one, but if it's possible to come to some understanding with each other, I'd like that.

I've pasted below the transcript from our website, of this part of Wyatt's story.
Best regards,

Ira Glass

There we have it. I think J's letter makes the argument every strongly, but Glass wasn't persuaded. Expect to see more on this in the near future.

Lately I've been having lots of conversations about norms, code-switching, professionalization, and what our job is as teachers to model and suggest. I've written on the blog about code-switching as a skill that my students generally lack and that I think is useful for them. Others have countered, though, saying we should focus on changing norms rather than forcing conformity, a message I endorse and yet ... how do I tell one of my students that they should be the one to make that change?

I don't have any answers today, but thanks to a piece I first saw from Eric Grollman, have more grist for the mill.

In Huffington Post, Jacob Tobia writes about professionalism in, "Why I am genderqueer, professional, and unafraid." He writes:

Professionalism is a funny term, because it masquerades as neutral despite being loaded with immense oppression. As a concept, professionalism is racist, sexist, homophobic, transphobic, classist, imperialist and so much more -- and yet people act like professionalism is non-political. Bosses across the country constantly tell their employees to 'act professionally' without a second thought. Wear a garment that represents your non-Western culture to work? Your boss may tell you it's unprofessional. Wear your hair in braids or dreadlocks instead of straightened? That's probably unprofessional too. Wear shoes that are slightly scuffed because you can't yet afford new ones? People may not think you're being professional either.

Tobia, as it turns out, is wearing dresses, heels, and makeup. Read more of his story at the link.

I just think this is a very clear articulation with the problem of professionalism, but I still feel like I should teach my students to be able to code-switch, as it will help them. I do not have a solution to this conundrum.

My friend Jenn, when discussing this on Facebook, also linked to this useful piece on US Military hairstyles and the reactions of African-American women. The army has come out with new guidelines, many of which do not accomodate non-white non-straight hair. Here's the line that I thought was important:

In a written statement, the army said: "The intention of uniform policies is to ensure soldiers' appearance reflects the highest level of professionalism.
"None of the new standards, whether pertaining to tattoos, grooming, jewellery, etc, are designed to discriminate against any gender, race, or ethnic background."

I'm sure this is true. I'm sure they weren't designed to discriminate. But they still discriminate.

And here, because African-American women make up a substantial number of our service-women, it looks like instead of forcing soldier to confirm, codes are being switched to accommodate difference.

The backlash led the Defense Secretary Chuck Hagel to call for a policy review at the end of April, giving military leaders three months to evaluate comprehensive regulations as they pertain to black women.

None of this lets me know what I should do in the classroom in terms of teaching and modeling code-switching. I still think it's useful. I still think it's oppressive. Any thoughts?

I'm off to a workshop today, but wanted to offer a few quick thoughts on a great series of videos.

Scope, a British advocacy group, has made an outstanding series of videos that are fundamentally about inclusive society - how to you shake a hand that's not there, how do you talk to people in a wheelchair, etc. What I like about it is that it acknowledges that inclusion is hard and disability often makes social norms confusing. Ok, they all say, now you've been awkward, now what?

The answer turns out to be - acknowledge the awkward, then change it and do better.

You can see the videos at the link above, but Vox has a nice write-up and a few addendums on language.

Videos below. What do you think? Using humor is always dangerous, but my gut reaction is that these hit the marks pretty well.

Anne and Bobby, used by permission

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


Anne writes:

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

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

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

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

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

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

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

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

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