Having made many, many life-altering medical and family-planning decisions, I despair when I see people on any side of this issue projecting their deeply emotional, personal experience onto someone else’s to further a political agenda. Any safe and fair society requires STRONG, CONTINUOUS, EASILY ACCESSIBLE support for people who are delighted about their pregnancy, people who want to end their pregnancy, people who don’t know how they feel about their pregnancy, people who placed their children for adoption, people who regret having placed their children for adoption, people who feel relieved about their abortion, people who regret their abortion, people who are childfree and happy, people who wish they’d had kids when they could, people who love their kids but need help, and people who hate parenting and really need help.
I don’t care if any of these scenarios is more likely than another. When it’s your life, your right to support should not be contingent upon how many other people feel the same way. That’s the basis of humans rights, of democracy. It is the only option for anyone who believes in harm reduction instead of moral superiority regarding family planning politics. Anything short of broad support for all the aformentioned people leads to miserable parents, miserable children, miserable communities, silence and secrecry and shame and abuse and misery everywhere.
Happy May 1st! The idea of “the people” and “the public square” and “equality-means-everybody” has me thinking about statues. And about historical figures and artists and everyone whose work had an undeniable impact on the world and the problem of their having also done or said terrible things that contributed to the subjugation and/or suffering and/or marginalization of many people. And I wonder, do we need statues of real people? (Or faces on coins and bills?) Germany places its statues of undisputed criminals in museums. I’d be hard pressed to find any recent statues of real people around here.
Does any society need statues of real people? The human impulse to want to learn about – and usually like – someone whose work we like is so powerful, it’s surely impossible to eradicate from our systems. Fandom is here to stay. But books, articles, documentaries and museums exhibits can/should force us to learn about the person in context, learn about everything they did, whom they helped and whom they hurt. Statues simplify people, remove context, rinse them of responsibility for any harm they caused. In turning them into idols, we place them above others, which is the opposite of equality. Do we really need statues of real people in public? What will be lost if we ended the tradition?
Imaginary figures seem fine to me, whether unnamed as in the nice big lady above you can see in Oslo, or well-known fictional characters. I don’t think there is a problem with statues of the Greek gods. Everyone knows they were jerks.
Welcome to sunny side! was one of the messages I received last month on my 40th birthday. I have indeed felt a glow about the whole thing. With 40 years under my belt, I’ve decided—and tell everyone I meet—that I now know everything. Joking aside, I began Painting On Scars 10 years ago this month and I know—down to the very core of my being—that so many things have gotten so much better in the last decade. Yes, some things have become horrifically worse. We’re entering the third year of an indisputably wretched pandemic, and my country of origin has been sliding down the list of robust democracies, and the partisan divide President Obama sought to overcome way back when has deepened and become more vicious no matter whom you ask. (More on that some day soon.) But Peter Dinklage is starring in his wife’s version of Cyrano, which hit theaters in the U.S. yesterday, and the way the media has responded is one of the many reasons I’m happy to be alive right now.
I’ve spent a lot of my life wondering how certain human rights movements took off when they did. The way our history books in school taught it, the Civil Rights movement was a burst of anger marking the end of the placid 1950s, brought on by certain great men like Dr. King who just suddenly got the idea to end Jim Crow. We never learned about all the activists fighting to ban lynching long before Dr. King or the family of Emmett Till, and we never learned how the Nuremberg Trials and Holocaust studies facilitated conversations about racism. Minority rights’ movements always seemed to come of out nowhere, led by great individuals. Lessons in school easily led us to believe that before Frederick Douglass, Susan B. Anthony or Harvey Milk, no one had ever heard of equality for Black, female or gay citizens.
It wasn’t until the social justice movements that we’re observing now—the New Left, the wokeness or whatever you want to call it—that I really understood how a movement breaks into the mainstream from the margins. It begins in activist circles and, with success, the circles begin to expand until one day you realize those high school friends who rolled their eyes at any talk of gay rights are putting up marriage equality logos on their social media accounts. Many in the mainstream feel that all this talk about trans rights and genderqueer rights, Black Lives Matter and #MeToo has been sudden, and they are not entirely wrong. The farther you are from the margins, the less likely you are to have heard the conversations that have been going on there for so long.
When I began Painting On Scars in 2012, Peter Dinklage won his first Emmy award for his role on Game of Thrones and at the ceremonies he made a brilliantly crafted plea to end dwarf-tossing. Mainstream media sources reporting on it implied via tone that the right to have one’s bodily safety and autonomy respected was not too much for men “suffering” from dwarfism to ask. But no mainstream journalist dared name any people or systems that had allowed dwarf-tossing to be seen as nothing more than a joke – like, for example, the bars that ran dwarf-tossing events, the politician who tried to remove a Florida ban to “stimulate the economy” or the creators of the hugely successful Lord of the Rings films. Dinklage was hailed as one of the best things about Game of Thrones, his alma mater invited him to give the commencement address, and Rolling Stone declared him a “Sexy Beast.” But his success was handled as an individual case. The argument that Hollywood should expand leading roles beyond its awfully short list of acceptable body colors, sizes and shapes remained at the margins. In the mainstream, it was at best acknowledged as a quaint pipe dream. Now Dinklage is on the media circuit for Cyrano and journalists are rolling their eyes with him at such passé limitations of imagination. What a difference a decade makes.
In 2012, debates about the lack of casting opportunities for actors of color and with disabilities were happening on places like feministing.com and The Patt Morrison Show. (Ever heard of it?) Not theSunday Times. Leading men were overwhelmingly white, non-disabled and very, very, VERY not feminine. Flash forward to today and Timothée Chalamet has been hailed on both sides of the Atlantic as a sex symbol, the male actor of his generation and, repeatedly, a softboi – one of many men enjoying mainstream success who feel as free as women to be masculine or feminine or a nuanced version of both. Or neither. In 2012, Eddie Izzard was the only male known around the world for wearing dresses and makeup unironically. In 2012, few would have believed an out and proud rapper could flourish outside the queer community let alone top the charts, as Lil Nas X has. In 2012, no one in the U.S. could name a transgender celebrity of any considerable renown. It would have been all too easy to imagine the producers of normcore Jeopardy! declining the application of a transgender woman on the grounds that such a contestant would be, you know, distracting. This week, Amy Schneider ended her winning streak on Jeopardy!, the second longest in the show’s 56-year-history. When she was recognized in the stands at a Warriors game, she received an ovation from the crowd. You know something’s shifted in the mainstream when basketball fans hail you as a hometown hero.
The growth in acceptance of so many different minorities signifies a broader awareness of intersectional social justice – the understanding of how different minority issues overlap. As Peter Dinklage recently told the Times, “The idea of a leading actor is changing now. Whether racially or whatever. It’s about time. We’ve been stuck with this stereotype of a leading man and it’s healthy to open that up. Love life is not the domain of pretty people – everybody has a love life.” Pretty has gotten so much prettier.
We can’t let this movement turn out to have been just a moment. And reducing bias and hate in the mainstream should never be mistaken for eradication. In 2012, five years before #MeToo, blatant sexual harassment and assault in the workplace were considered to be little more than shocking scenes seen on Mad Men, there to show how much had changed. HR departments and the women’s movement were thought to have made enough strides to render harassment the problem of just a few bad apples. Your willingness to believe a politician’s accusers fell heavily along party lines. And we were convinced of this as men like Harvey Weinstein were not only breaking into womens’ rooms at night, but doing so as his coworkers rolled their eyes and sighed, “Oh, that’s just Harvey.”
For all my pleasure at Peter Dinklage’s star treatment this month, the risk remains that he will be an anomaly among dwarf artists rather than a trailblazer. No other person with dwarfism has reached anywhere near his level of international renown in the decade since his first Emmy win. Marlee Matlin’s success in the 80s and 90s was followed by little else for the Deaf community. This fall’s acclaimed crime series Only Murders in the Building broke new ground by featuring an entire episode in American Sign Language led by a Deaf supporting character. That episode was excellent and its moment of upfront, vicious ableism made my heart jump into my throat because it rang so true. But could an entire series with a physically disabled leading man attract so much acclaim? Could it survive beyond one season, or remain a gimmick? How about several series starring disabled actors?
We can’t ever allow the comfort of success for marginalized minorities to devolve into complacency. 100 years ago, my beloved city of Berlin showed that mainstream tolerance of queer and intersex citizens could rapidly erode into tolerance for those who sent them to death camps. Explicit hate and danger remain very real threats today. And there are still far too many well-meaning but harmful assumptions left in the world to consider it equally safe and welcoming to all. For all of Dinklage’s applause for the new opportunities we’re witnessing in Hollywood, he had nothing good to say this week about the latest news of Disney’s live-action remake of Snow White and the Seven Dwarfs:
They were very proud to cast a Latina actress as Snow White… Take a step back and look at what you’re doing there. It makes no sense to me. You’re progressive in one way and you’re still making that f***ing backward story about seven dwarfs living in a cave together? What the f*** are you doing, man? Have I done nothing to advance the cause from my soap box? I guess I’m not loud enough. I don’t know which studio that is but they were so proud of it. All love and respect to the actress and all the people who thought they were doing the right thing. But I’m just like, what are you doing? … If you tell the story of Snow White with the most f***ed up, progressive spin on it? Then, yeah, let’s do it.
Disney claims to be “consulting” the dwarf community in order to portray the seven men as respectfully as possible. In the vein of Dinklage’s suggestion for a truly progressive spin on the story, I think Disney should take inspiration from the several living room productions of Snow White I roped my friends and cousins into that starred yours truly. What could be more radical than to have Snow White—the young woman considered so extraordinarily beautiful by the queen she needed to be killed—portrayed by someone with dwarfism? Kids of any body type, gender or skin color who have loved the fairy tale for its drama should be able to grow up to play the star. But do we think the public’s imagination could go quite that far? Are we there yet? If not, what will it take?
Perhaps the worst thing about the arts—at the least the performing arts—is how they’ve ended up as the most powerful perpetuator of lookism around the world. From colorism to ableism to fat-shaming, mass media bears a remarkable responsibility for ignoring diverse beauty standards and marginalizing various body types. But the best thing about the arts is the way they dodge objectivity, remaining open to reinterpretation forever and ever.
When you hear “I’m Just A Girl That Can’t Say No” sung by a waif, it sounds like the mid-century acceptance of sexiness in women as long they stay coquettish – that is to say, naïve. When it’s sung by a strong-voiced but conventionally attractive woman, it becomes the anthem of the whore – a classic character whom tradition keeps in high demand but never in high regard. And when it’s sung by a woman in a wheelchair—who is the first actor in a wheelchair ever to make it to Broadway—it’s nothing but empowerment, a sonorous TAKE THAT! to our traditions that automatically deem physically disabled women off the dating market while behind the scenes rendering them seven times more like to be sexually abused in the United States than the general population.
When I read Ali Stroker had become the first actor using wheelchair on a Broadway stage in 2015’s Spring Awakening, my first reaction was, “Wait, what?” The very first full-length musical I attended was a production of Guys and Dolls at my local high school, with a classmate’s brother in the lead as Sky Masterson. He used a wheelchair—I cannot say if it was temporarily or permanently—and the image was presented so matter-of-factly that it imbued in me a deep-seated sense of “Well, why not?” When it comes to possibilities, seeing is believing. But visions can be deceiving and I was deceived into assuming this sort of thing happened all the time. It did not. In 2019, Stroker became the first actor with a physical disability to win a Tony in Daniel Fish’s dark revival of Oklahoma! (This highly acclaimed version originated at Bard College, my alma mater.)
Stroker has spoken at length about what equal opportunity and accessibility in acting truly means. She’s called out Hollywood and Broadway’s addiction to choosing only non-disabled actors to portray disabled characters like Franklin Roosevelt and Helen Keller, likening it to blackface. This week she spoke with the ACLU about the importance of integrating her disability and her wheelchair into any character she portrays without the need for explaining the disability.
I highlight this now because Broadway is about to re-open for the first time since the pandemic and because the worst thing we could do after her achievements is to let Stroker become a one-hit wonder and remain a novelty. Marlee Matlin made history in film and television as the first widely known Deaf actor in the 1980s and 90s, and Google reveals she continues to be the only one of such renown.
Of course, long-lasting change has to be structural. As both Stroker and Anthony Ramos of Hamilton have pointed out, people long marginalized in the arts must be represented not only on the stage but in the writers’ rooms and board rooms if the power imbalance is ever to be corrected and career opportunities for all are to be really, truly equal. That’s why I hope you continue to hear about Ali Stroker and many, many other physically disabled actors until the distinction no longer matters because there are too many to count.
This week the world lost one of the greatest warriors against discrimination on the basis of sex and gender – the very same week that the World Athletics track and field authority ruled that South African champion Caster Semenya will not be allowed to compete in women’s sports in the next Olympics unless she agrees to take medications to lower her testosterone levels. This ruling raises not only issues of bioethics, but—as you can see in the video from Vox above—the plain fact that who belongs to what sex entirely depends upon which scientific definition you choose to go by.
Many misunderstand “intersex” to simply mean a person who has a penis and a vagina. But intersexing conditions include people with ambiguous genitalia, people with one set of genitalia but another set of chromosomes, people with hormone levels rarely found occuring alongside the set of chromosomes or genitalia they have, etc., ad infinitum. White Western beauty standards traditionally associate softer facial bone structure with females and hairier bodies with males, which has led to people from other ethnicities whose biology does not conform to this more often being suspected by Western sports authorities of being intersex or transgender.
Sports obviously matter to Semenya almost as much as her identity as a woman does, so I am in no position to say what she should do in the face of the demand she take hormones. I can only contribute to the views of a public that honors sports and competition so highly that participants have been and are willing to all but torture their bodies for them. Semenya qualifies not only as a minority by virtue of her intersex features, but by her determination to refuse to take whatever body-altering treatments the authorities demand. Perhaps she understands on a deeper level that sports are are as made up as anything else in human society.
From the judging in gymnastics to the disputed calls of referees to the regular changes in rules and scoring, little is objective and everything is up for debate. I get the joy of being wowed by what the human body can do and the feeling of vicariously living through an athlete’s victory. But I also get Emma Gingerich, an Amish woman who left her community and, when asked to name something in modern American life she could never adapt to, replied, “Definitely, games are overrated. I don’t like playing games. I think it’s such a waste of time. I would rather pick up a book.”
Sports and its ever-changing rules aren’t going away anytime soon. Nor is sexism. But the more the world opens its eyes and ears to the many, many people whose bodies defy traditional definition and have until now been marginalized for it, the deeper our discussions of fairness become.
Most of the world has been asked—if not ordered—to stay at home and only socialize online. Almost immediately the divisiveness inherent to social media was out in full-force. My friends and family have been venting almost since Day One about the posts and tactics they find most distasteful:
“There SO many high-horses out there right now – people trying to shame anyone who goes to a bakery or uses public transportation or orders online and therein endangers delivery workers.”
“Be grateful your friends at least are committed to social distancing right now! Half of mine are still convinced anyone who does so is a sissy.”
“I’m gonna unfriend the next person who lectures about how we should be avoiding chocolate or shampooing with strawberry jam because it’s good for your brain cells and therefore your immune system. It’s hard enough to get people to listen to the clear-cut facts. We don’t need the airwaves clogged with theories!”
“I can’t take the memes that tell everyone to stop whining. ‘All we’re being asked to do is stay on the couch and watch Netflix’?! Complaining is helpful in a crisis!”
Indeed, orders to immediately have perspective and shut up sound crotchety at best and ice-cold in light of the escalation in unemployment, mental illness, domestic violence, and child abuse under lockdown. We absolutely owe it to seniors, disabled and chronically ill people, and everyessentialworker to do what we can to slow the spread of the virus and lessen the danger they face. But that doesn’t mean shrugging off even smaller problems like loneliness, cabin fever, or the obliteration of the work-life balance. A single mother of toddlers who works as a journalist said every minute of her day is a choice between neglecting her job or her children, and leaves her feeling every night that she failed at both. The U.K. reports an increase in custody battles over children since the lockdown. Less acrimonious legal procedures like immigration and adoption procedures are now in limbo.
Not since the last pandemic a century ago has everyone on every continent faced the same exact enemy. Earthquakes, bombings, hurricanes, and even World II occurred in specific locations. Some if not most people on earth lived far away from those catastrophes and only knew them as news reports. Right now I can ask my friends and family in every time zone the same question: How is it for you? I live in Germany, which so far has one of the lowest death rates of any of the infected countries and, at the time of this writing, has more residents recovering from the virus than infected by it. While that is some cause for hope, the diversity in international infection and death rates pretty much ensures that non-essential international flights are a long way off. For so many parents like me, seeing our kids hug their grandparents is almost certain to be the very last thing governments will allow. I know I am still partly in denial over that.
Social media is a hard substitute to accept. Unlike speaking to friends in very small groups or one-on-one, social media (like mass-emails) excludes the extremely helpful ways in which we each alter our speech and tone according to whom we’re addressing. And so we speak to everyone at once and too quickly alienate those whose experience we forget. Posts about what to read or watch now that we all have so much time at home alienate those whose workload has tripled. Or evaporated. Posts that overemphasize the dangers of the virus in order to try to frighten people into staying home make those with at-risk loved ones burst into tears. Posts trying to point the finger at wet markets or the Chinese government (or U.S. Democrats or cell phone towers) prove that the blame game is always poisonous and always fraught with fallacies. Scientists and journalists from Nate Silver to Bill Bryson had long been warning that humanity was due for a pandemic. The differences in how states have handled it proves that our political choices do ultimately determine how many will be in danger.
We all face the same virus and what it means for each of us is as diverse as humanity itself. Recognizing the wide range of experiences is necessary. It will degrade us if it is done with jealousy instead of empathy. Solidarity means no one is more expendable than I am and bravery in the face of a worldwide threat means overcoming the urge to think only of my experience.
Escaping social media and moving to the phone, I’ve found friends and family to be overly gracious. Jeez, I thought I was inconvenienced, but it’s nothing compared to what you’re going through! they say so often to each other. We vent and then edit ourselves, counting our blessings and privileges without humblebragging, and express sympathy for each other’s individual plights. For all the vile xenophobia that is but a Google search away, online organizing shows that many are ready and willing to aid people in poverty, African-Americans, refugees, homeless citizens, and prisoners, all of whom are a greater risk. The applause from balconies for health care professionals across Europe and North America has been heartening, and in many places it has been followed by concrete efforts for increased funding.
And who keeps even more people alive in a hospital than the doctors? The cleaning staff. This crisis has shown the need for paying our workers based on the necessity of their labor, not the skill-level. It has shown that childcare is absolutely and always a job in itself, worth as much as any other. It has shown how difficult it is to communicate simple but scary facts to over 7 and a half billion people. And it has shown we do have some choices about our responses and we can let the better angels of our nature prevail. When this is over, history will tell whether or not we did.
Blogging for the first time in half a year has me starting up again in a brave new world. COVID-19 has brought most of us indoors and gone on to show that a worldwide, nearly universal phenomenon results in a profound diversity of experiences. More on that soon.
For now, I urge anyone with the time and a Netflix account to watch Crip Camp, a documentary about some of the founders of the modern disability rights movement in the U.S. that is on par with anything Ken Burns or Tavis Smiley has shown you. The film starts at Camp Jened, a Catskills retreat that slowly evolved into a community run by hippies fiercely dedicated to understanding the adolescent campers and recognizing their agency. Many of those campers went on to be central figures in the national fight for equality – from issues of accessibility to sexuality. (Irony of ironies, the word “quarantine” is uttered at a particularly giggly moment.) In true American fashion, adult topics and language have landed the film an R rating, which is unfortunate because it should be shown in high schools across the country. Everyone with the faintest interest in history needs to know what the ADA and Willowbrook were.
I have written before about the failure of many progressive circles to embrace disability rights with any meaningful sincerity. Despite dedicating themselves to challenging harmful stereotypes, progressives too often hail youth as an ideal, which can lead to overvaluing independence and physical strength. Crip Camp shows that not all radicals need fall victim to such narrow-thinking. Will self-proclaimed conservatives like the film? I can’t say, but the fact that Barack and Michelle Obama are the executive producers will surely attract as many viewers as it repels.
I only cried once, but for a long time: at the line “If it takes me all night!” It’s uttered by a kid in Washington, D.C. in 1990, and she could easily have been one of the kids I lived with at a rehabilitation center in that era. If you’re at all familiar with this blog, you know I was born with dwarfism and I have always been profoundly aware of that fact. But I had never considered myself disabled until I used a wheelchair and lived with other kids representing a rainbow of diagnoses for nearly half a year. I was a pre-teen then. The institution was primarily pediatric and thus not nearly as fun as Camp Jened appears. Barney the Dinosaur was the only artist whose record played on a loop, not Bob Dylan. But there was community and there were some very good caregivers. Crip Camp shows what a difference can be made by having a great community and excellent caregivers who are ready to fight for the right to self-actualize and become no longer a cute kid but a full-fledged citizen with a voice.
The film is brutally honest, but also a story of success, and so in the time of the coronavirus it can serve as both a salve and a wake-up call. One movement leader speaks of the hard truth that a world that ignores disabled people’s rights ultimately condemns them to go away and die. The very same truth holds for decision-makers whose actions imply that those most at risk of dying from the coronavirus are expendable. As filmmaker Nicole Newnton told Slate, “This health crisis is impacting people who are vulnerable, and this film shows how a lot of that vulnerability is systemic. We want people to see that it is possible to change things and make the world a better place for everyone. This film shows that a small committed group of people can make a huge difference. We need to ask ourselves, when this is over, how will we rebuild the society that we want to see?”
Leaving you this week with a must-read feature in the New Zealand Herald: “The Civil War Solider with Dwarfism Who Was Gifted to the Queen.” Following the extraordinary life of British man Jeffrey Hudson, the article quotes historian Dr. John Woolf who points out that Hudson’s being handed over to Charles I’s wife as a present was not unusual at the time:
Dwarfs were around in the courts of Ancient Egypt, China and West Africa. Alexander the Great (356BC-323BC) gathered a whole retinue of dwarfs. The Romans collected dwarfs as pets, placing some in gladiatorial rings to fight with Amazons, and tossing others across the amphitheater for entertainment. By the Middle Ages, dwarfs were kept side-by-side with monkeys, sometimes traveling between royal households in birdcages.
I never learned that in school.
Through resources provided by Little People of America, I became aware around the age 12 of the circus freak tradition in the 20th century to which so many dwarfs were left to turn. This made me increasingly suspicious as a teenager when watching period films and documentaries romanticizing the days of beautiful people darting between horse-drawn carriages and candlelight that none of what I saw would have been imaginable* back then for someone who looked like me. My own research later confirmed those suspicions. It’s time the rest of the world start to talk about it.
*Aside: As noted before on the blog, period films rarely depict what life truly would have been like for any of us. Invariably Victorian women are portrayed wearing makeup while too many pre-Victorian kings are portrayed without. Not to mention a third of us would have beenmore likely to die in childhoodthan survive long enough to make it into the history books alongside Charles I. During his reign, you were most likely to die of small pox. Playthis game to find out what long-forgotten diseases would have killed you in other time periods in the West.
Human rights activist and fashion critic Sinéad Burke is on the cover of Vogue for its September issue, along with 14 other women picked by tongue-twister of the moment, the Duchess of Sussex (aka Meghan Markle). Burke has achondroplasia, like I do, and has become the first woman with dwarfism to bring the issue of fashion for all to the highest levels: from the Met Gala earlier this year to the Council of State in her home country of Ireland.
Many in the dwarf community are excited about the Vogue cover, reporting that such representation is doing wonders for their and their children’s self-esteem. As with all firsts, I am curious as to how much staying power it will ultimately have. The fashion industry is notorious for embracing differences as novelties. And as Helen Lewis writes in The Atlantic, we should be very careful about reading too much into what a fashion magazine edited by the wife of a prince can do:
There are sharp limits on the activism of royals… one of their major causes is mental health, where they stay safely away from making policy demands. Prince Harry has bravely spoken about undergoing counseling to deal with the death of his mother, but the charity he and his brother support, Heads Together, focuses on “changing the conversation” and “reducing the stigma.” It cannot, say, criticize the lack of government funding for mental-health services…
All of this adds up to a form of activism in which there are problems, but no villains. Markle can talk about marginalized women who struggle to find clothes for job interviews—and the charity SmartWorks, which she supports—but she cannot address the causes of poverty…
As a royal, Markle is particularly constrained in what she can say. Other activists make the same bargain of defanging their criticisms to avoid causing upset for less compelling reasons. Identifying general problems—old-fashioned consciousness-raising—is worthwhile and helpful.
But it isn’t the same as solving them. That requires politics, which is messy and divisive.
Too often, feminism—even when not championed by a beautiful, wealthy aristocrat—gets stuck in this toothless, villain-free zone. It is easy to champion diversity and urge girls to aim higher, but awkward to bring up the lack of state investment in child care and, well, the small matter of the class system.
While I loved princesses a child, I’ve been trying to figure out if the real-world ones have any reason to exist in a democracy. (I’ve only ever lived in countries that made no bones about kicking theirs out long ago.) With more documentaries and period films about the Windsors under my belt than I care to count, it seems to me that we in the modern world have three options: a) Barely notice them, b) Admire them in a way no one who has done so little deserves, c) Gossip about them in a way no one who was simply born into the spotlight deserves. The first option seems the least unreasonable.
But the desire to twirl about in a ball gown (or any of the clothes featured in Vogue) has never been about reason.
Yes, Sinéad Burke made it to the cover of Vogue at the invitation of a duchess, who made it to the palace at the invitation of her then-boyfriend, who lives there only because he was born into a family that, until very recently, was for Whites Only and is still off-limits to Catholics and adopted children. But Burke has certainly done the work to deserve her place on the page. May it have lasting effects on the world – lasting even longer than, dare I say, the monarchy.
Leaving you this week with the above BBC video of Things Not to Say to People with Dwarfism. With candid personal stories ranging from awkward jokes to physical abuse and assault, discretion is advised. This is not your typical the-only-disability-is-a-bad-attitude public service announcement. Kudos to all involved for the honesty. And to the rest of us, what are we still doing that allows these incidents to continue and pervade?
Ending the blog’s six-month hiatus with Part 2 of Germany’s Deutschland3000 program on disability featuring yours truly. Like, share, spread the word. (Once again, English subtitles are available with Auto-Translate via the tools icon.)
I look forward to providing you with more content about differences, delusions of normalcy, and what we mean when we say democracy each week again from now on. And I thank you all sincerely for reading Painting On Scars these seven years now.
Here I am discussing some of the most common misconceptions about people with disabilities on Germany’s Deutschland3000 program. Like, share, spread the word. (English subtitles available with Auto-Translate via the tools icon.)
Today the American Library Association kicks of its annual Banned Books Week to spread awareness of the dangers of censorship. Each year the ALA releases a list of the top ten books that were most often requested to be removed from U.S. libraries—usually school libraries—by parents and political activists alike. In 2017, the majority of the most challenged books were stories about LGBT acceptance. However, as with nearly every year, a few titles on the list were targeted for use of racial slurs.
I love Banned Books Week if anything because discussing these issues is crucial. I do believe every public library should be free to contain every book humanity has ever brought forth. But, as examinedbefore, those opposed to censorship should not assume the solutions are simple like censors do.
When it comes to kids, you’d have to look hard to find someone who believes that no one should ever take a child’s age and developmental level into account when selecting stories for them. I save many of my favorite books for the children in my life until they are old enough to appreciate them fully because infants, toddlers, and pre-schoolers can get scared or—more likely—bored if they can’t follow along. Most children in primary school do not understand sarcasm, which is why Stephen Colbert did not let his kids watch The Colbert Report.
Children are a diverse group, so of course many kids will be ready earlier than others to handle mature topics. But just as I believe it takes a mature mind to understand the BDSM portrayed in Fifty Shades of Grey, I believe there is a world of a difference between an older child who is ready to learn about the nuances of racism and a young child who will likely repeat the N-word without giving it much thought, and think it’s funny if it elicits shocked expressions among grown-ups.
With all this in mind, Banned Books Week should be about debate, endless and free.
Thanks to an online public outcry organized by members and supporters of the Restricted Growth Association, a handful of “midget wrestling” events have been canceled in the United Kingdom. The objectification of people with dwarfism in freak shows spans from the Early Modern Era’s court jesters well into the present day at dwarf-tossing events, “mini” cover bands, dwarf theme parks, and on reality TV shows. This is the first time in recent memory a certain freak show has not simply been condemned by human rights activists but in fact terminated.
As Erin Pritchard writes in The Independent: “We do not put people who use wheelchairs, people who are deaf or blind, or people with learning difficulties on a stage and laugh at them.”
Leaving you this weekend with a tip to watch Dwarfs in Art: A New Perspective, which airs tomorrow night on BBC 4. I’ve long documented portrayals of dwarfsthroughout history on the blog and this documentary promises to go into greater detail. Several of the portrayals of dwarfism are well-known enough to have become stereotypes dwarfs must combat with regularity – which is quite absurd when you consider how rare the condition is.
Featured in the documentary is academic Tom Shakespeare, who regularly writes about disability and bio-ethics, and has achondroplasia like I do. He is a professor at the University of East Anglia and a frequent contributor on the BBC with thought-provoking arguments on issues ranging from physician-assisted death to religion vs. spirituality to bucket lists. I’ve featured an interview with him from his project Disability and Sexuality (see above) because he deserves recognition far beyond the British Isles.
Forty years ago this week, Louise Brown was born in Oldham, England, the first human ever conceived by invitro fertilization. Since her birth, over 8 million people have been born thanks to invitro fertilization or other assisted reproductive technology. I can attest that if you have recently become a parent after a long journey trying to become one, it is particularly hard not to get choked up at hearing the recording of “Happy Birthday” sung to Baby Louise by her family and friends back in 1978.
And yet. Brown’s parents and the doctors who helped them become parents got hate mail and death threats. The hospital received a bomb scare. Brown’s father had to arrive under police protection. To this day Brown reports she is trolled online.
Advances in reproductive technology since Brown’s birth have helped create families for people facing infertility and deadly heritable diseases, single women, and same-sex couples. All such people are targeted regularly by various political groups—some vicious, some peaceful—who deem them “unnatural.” Yet no one on earth could tell the difference between a person who was conceived via IVF and a person who was conceived via sexual intercourse by meeting them.
As examined previously on the blog, adoptive families also have a long history of facing down those with horrific ideas about nature involving the importance of bloodlines and, as one commenter to The Atlantic put it, “inferior genetic stock.” Social and medical interventions in making families are indeed complex and merit nuanced discussions. But the vitriol involved in such discussions just goes to show that there are too many out there who can’t handle the idea of families unlike their own.
John Oliver kicked off the month with an excellent report about the complexities of gene editing. (See above.) Unlike most reporters of these issues, he manages in few words to explain precisely why ridding the world of genetic mutations like deafness and dwarfism should not be the solution to the problem of society’s hang-ups about bodily differences.
Meanwhile, Andrew Solomon’s Far From the Tree, which I have referred to as The Best Book of the 21st Century, has been adapted into a documentary out this week in the U.S.
In less wonderful news, a Silicon Valley paper has uncovered an Amazon proposal for a newly patented robot that throws warehouse products into bins. The hypothetical item referred to 17 times in the illustrations that the robot could throw is a dwarf. Little People of America is not amused. Kudos to reporter Ethan Baron for shedding light on an issue few would more than laugh at.
Leaving you this weekend with a link to an excellent personal essay and video published at CNN.com last month by Rebecca Cokley, a civil rights lawyer who worked in the Obama administration. The granddaughter of a segregationist judge, Cokley has achondroplasia and her average-size husband is African-American. She writes about the ramifications of these intersections for her two children who also have achondroplasia. She writes about the doctor who planned to sterilize her without consulting her. And she writes about the mistreatment she experienced at last year’s Women’s March:
People often act as though disabled people don’t have a right to bodily autonomy. When I attended the women’s march in D.C. in January, I was repeatedly grabbed and manhandled by women who wanted to know where was my mommy and why didn’t I know better than to wander away from her. They all looked shocked when I responded, “I am the mommy,” but not a single one apologized to me.
In the video, she also delves in to the many ways in which she and her family are privileged.
Profiles of people with dwarfism are rarely brave enough to venture beyond the comforts of human interest stories and into the very real but hard political realities. (I know. I google them weekly.) And most headline the subject as “small but [insert compliment here].” This piece is definitely worth your time.
Over this past week, articles about the allegations against Aziz Ansari by a woman known by the pseudonym “Grace” were the most read articles at The Atlantic, Slate, Salon, The New York Times, The Guardian, The Washington Post, New York magazine, and pretty much every feminist website from Jezebel to Bustle. Everyone from Whoopi Goldberg to Samantha Bee to Dr. James Hamblin participated in the discussion at some level, myself included.
Do you want to know what I think? I think feminist Jill Filipovic has summed it up best. But I also think it’s far more important to note that not one of these sites picked up National Public Radio’s week-long report on the epidemic of rape and sexual assault against developmentally disabled people, who are seven times more likely to be sexually abused than the general population, according to the U.S. Department of Justice. NPR kicked off the story by calling it “The Sexual Assault Epidemic No One Talks About.” Mainstream feminism proceeded to not talk about it, proving the point fantastically well.
Why has this excellent, in-depth report gone unnoticed while Ansari and Grace could only have garnered more attention if they were running against each other for president? You don’t have to be The Huffington Post to know that readers will pretty much always prefer a story involving a celebrity than a story about ordinary people, social groups and statistics. I knew too well that just putting Ansari’s name in the title of this article would up its chances of survival. Barbara Ehrenreich has been complaining since day two of the #MeToo movement that “there are far too many think pieces about high-level actresses and far too few about the waitress at your local diner.” Readers are also more likely to click on stories involving young adults and/or sex than stories about older people and/or anything bereft of sex. Ginia Bellafante complained this weekend about the endless analyses of Grace’s night with Ansari in contrast to the relative silence about the life and legacy of Presidential Medal of Freedom winner Dr. Mathilde Krim.
Anna North, who covers gender issues at Vox, argued for the relevance of the Ansari story, saying, “I mean, honestly, my first reaction was just sort of recognition. This is a situation that I’ve heard from my friends. This is – the behavior she describes through Ansari is behavior that I’ve heard men confess to in their own lives. So I thought, like, yep, this feels real familiar.” While this does validate discussions about dates like the one Grace had, it also explains the sad truth as to why it managed to bury NPR’s story about a sexual abuse epidemic. It is safe to say the majority of young adults writing and reading stories about social progress do not react to stories about developmentally disabled people with a “Yep, this feels real familiar.” Nor do they encourage each other to.
In my experience, most young adult feminists and social justice activists limit their discussions about developmental disability to stories about volunteering in a special ed class and debates about the word “retarded.” The issue of whether or not to screen for Down Syndrome in utero is an increasingly common discussion among pregnant women and their partners, but the opinions of people with Down Syndrome rarely take center stage in that debate.
Disinterest is not the only factor to blame. Accessibility, the issue most likely to leave disabled people marginalized in mainstream society, is what also leaves them isolated from the places where most social justice activists convene. People with developmental disabilities are the minority least likely to live on college campuses, and they are more likely to be socially integrated in small towns than in metropolitan areas. Few feminist and progressive publications offer versions of their articles in Simple Language.
But while such barriers help us understand the marginalization of developmentally disabled people, there is little reason why we should accept them. Human rights means everybody. Feminism rightly declares the personal is the political, but this serves as a wall instead of a bridge when the personal experiences shared by the most people dominate the discussion at the expense of others. Empathy is rightly considered the best facilitator of communication in the fight for minority rights, but minorities will suffer when empathy is expected to come instantly, without the effort of learning about experiences other than our own.
There’s no reason why the #MeToo movement can’t talk about the issues exemplified by the Ansari story and the abuse epidemic endured by developmentally disabled people. There is, in fact, plenty of cross-over. During a week when the second Women’s March has pledged to be as inclusive as ever, it would be great to start a discussion asking the women who clicked on the Ansari story why they didn’t react to headlines about the epidemic. In the multiplearguments that #MeToo should teach women to show more agency and take self-defense classes, it would be great to recognize that disabled women are one group for whom self-defense classes are rarely helpful. In the same way social justice activists are helping the long marginalized experiences of LGBTQIA+ people to broaden society’s ideas about sex and gender, they could help the experiences of disabled people to broaden our ideas about what it means to be independent, strong, accomplished and attractive.
Justice will be done when reports like NPR’s about the abuse of developmentally disabled people shock the world and in doing so make it to the The New York Times’ Most Read list. And when the online March for those with disabilities who could not join an outdoor protest actually gets mentioned in the national reports about this weekend’s Women’s March. Until that day, mainstream feminism reveals its empathy to still have its limits.
Painting On Scars 
