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How Can We Decide What Makes A Female?

20 Sep

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 your definition.

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. 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, 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.

This Universal Pandemic Proves Our Diversity

19 Apr

Hidden Object (Image by Hans-Jörg Aleff used under CC 2.0 via)

 

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:

“I can’t go online anymore if it means finding out another one of my friends is blaming this on Chinese people, black people, or city people.”

“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 every essential worker 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.

 

U.S. hotline for domestic abuse: https://www.thehotline.org/

U.S. hotline for the Deaf for help in domestic abuse: https://thedeafhotline.org/

U.K. hotline for domestic abuse: https://www.nationaldahelpline.org.uk/

German hotline for domestic abuse, in several languages plus German Sign Language: https://www.hilfetelefon.de/

German hotline for depression: https://www.deutsche-depressionshilfe.de/corona

 

 

Quarantined? Use Your Screentime to Learn about a Health Revolution

5 Apr

 

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 he 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?”

 

Because We Gotta Keep Telling the True Stories in Dwarf History

1 Sep

Anthonis_van_Dyck_013(1)

(Public Domain Image used via)

 

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 been more likely to die in childhood than 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. Play this game to find out what long-forgotten diseases would have killed you in other time periods in the West.

 

 

Can A Princess Ever Set Us Free?

18 Aug

Crown (Image by Andriy Baranskyy under CC 2.0 via)

 

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.

 

 

“Somebody Was Doing the Lion King Thing…”

2 Jun

 

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?

 

 

Mother’s Day & All It Touches

12 May

Mother and Son(Image by Andy415 used under CC 2.0 via)

From the Archives, updated

A very happy Mother’s Day to all the wonderful mothers I have had the pleasure of knowing, not least of all my own.

And to those of you who have lost your mothers,

And to those of you who have lost a child,

And to those of you who had to take care of your mothers (and yourselves) much earlier than the rest of us had to,

And to those of you who have tried hard to become mothers despite what neighbors (or politicians) may have said,

And to those of you who have tried hard to become mothers despite what nature ultimately decided,

And to those of you who bravely chose to have someone else become a mother in your stead,

And to those of you who are not mothers but have raised a child as well as any mother could,

In gratitude and with the deepest respect.

 

 

Aaaaand We’re Back: “I’m Disabled, But I’m Not…”

28 Apr

 

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.

 

 

 

Enough with the Myths about Disability

27 Oct

 

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.)

 

 

Banned Books Week Should Fight Censorship & Simplistic Thinking

23 Sep

 

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 examined before, 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.

 

 

“Midget-Wrestling” Events Canceled in the UK

16 Sep

Learn respect (Image by Duncan C used under CC 2.0 via)

 

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.”

Then again, let’s not give the reality TV producers any ideas.

 

 

Dwarfs in Art & Shakespeare

19 Aug

 

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 dwarfs throughout 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.

 

The Meaning of Louise Brown’s Birthday

29 Jul

happy birthday
(Image by Nerissa’s Ring used under CC 2.0 via)

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.

In Dwarf News

22 Jul

 

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.

 
 

 

Rebecca Cokley & Never-Ending Diversity

28 Jan

Light Box Body(Image by Luca Rossato used under CC 2.0 via)

 

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.

 

Aziz Ansari, #MeToo and the Problem of Empathy

21 Jan

(Public Domain image used under CC0 1.0 via)

 

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 multiple arguments 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.

 

 

Loyalty Makes A Family

31 Dec

Snowflake macro: planetary system(Image by Alexei Kljatov used under CC 2.0 via)

 

My absence from the blog since mid-October is because I’ve been on maternity leave. I will not be blogging about this (wonderful, complex) experience any time soon to protect the privacy of all involved. I can say that my views expressed in previous articles about family planning, genetic selection, caregiving, gender policing, and what makes a family haven’t changed much since I’ve become a parent.

I plan to continue to write for the blog (though perhaps not every week) in the new year. I thank you all sincerely for reading and wish you and your family, no matter who that may be, the very best for 2018.

 

 

It’s Dwarfism Awareness Month and I’m Aware that Most of Us Don’t Understand Genetics and Medicine

8 Oct

Bones(Image by Gema used under CC 2.0 via)
 
 
“Hey, I had a test question about achondroplasia today!” an old roommate of mine reported to me a few years back. He was a medical student and had been studying for his licensing exam.

“Oh, yeah?” I asked. “What was the question?”

“Whether or not achondroplasia affects intelligence.”

“And the answer was…?” I smiled.

“The answer was no,” he replied, returning the smile.

That this was a test question implies a necessity for teaching this fact. Indeed, for a good part of modern history, children with achondroplasia and other types of dwarfism were too often assumed to be intellectually disabled and placed in institutions or special ed classes for life. Hence a meme from Little People of America that’s been floating around the Internet in honor of Dwarfism Awareness Month: “A common misconception about people with dwarfism is that they are cognitively delayed or mentally impaired. This is NOT true.” Activism will remain crucial until this misconception is no longer common.

What are the chances that it ever will be? Equality and empathy are the heart of every human rights movement, but these ideas alone did not disprove the idea that lower than average height is indicative of lower than average intelligence. Science did that. The scientific method uncovers the facts. Political activism spreads the word.

Despite what some extremist conservatives claim, science doesn’t have a liberal bias. It often reveals facts upsetting to many. For example, contrary to some Dwarfism Awareness campaigns, people with achondroplasia cannot be anything they want to be. They cannot be construction workers, gymnasts, military combatants, weight lifters, or participate in most contact sports because the achondroplastic spinal column is compressed, rendering these activities more life-threatening for us than for most people. That’s a scientific fact.

It need not be a cause for regret. I don’t consider a life without the ability to participate in contact sports or construction work any less enriching than a life without the ability to sing on key or identify bird calls or cut hair or write without spellcheck. (When I’m feeling snarky, I steal a line from this movie: “Dear White People on Instagram: You own an iPhone and you go on hikes. We get it.”) Competitive and aggressive feats of strength can be a way to be a stronger person, but they are not the only way. You can tell me a million times that I cannot safely lift anything heavier than a small child over my head and I will never take it as an insult.

What is insulting is to tout broad assumptions about conditions and bodies as facts when they have not been corroborated by several studies. Someone with dyslexia is unlikely to master a word scramble, but that does not mean she cannot be a skilled writer. Someone with Down Syndrome cannot practice medicine, but that does not mean he cannot get a job. If you hear that people with dwarfism cannot have a high IQ, teach, drive, play tennis, perform surgery, give birth, or take care of children, these are not facts. They are assumptions. Yet they have been dispersed far and wide, terrifying far too many people with dwarfism and their parents.

Having a rare genetic mutation has taught me that teaching science to the masses is hard. Most of us who are not scientists develop our understanding of medicine based on doctor’s visits, pop science news articles, and hearsay, as opposed to peer-reviewed research published in medical journals or textbooks. This is to be expected—when was the last time I read a medical journal straight through?—but it results in all sorts of inaccurate and potentially dangerous assumptions.

When I recently tried to explain to some new friends that the gene for achondroplasia is dominant, one insisted, “Achondroplasia can’t be dominant because then most people would be dwarfs!” Wrong.

When my parents visited one of their first Little People of America meetings shortly after I was born back in the early Eighties, one volunteer said, “Dwarfs don’t live as long as average-sized people do because they have to walk twice as many steps in their lifetime.” Also wrong. The most common cause of lower life expectancy among dwarfs throughout history has been a lack of access to appropriate health care due to social marginalization.

When a journalist asked the owner of a Hollywood freak show last year why one of his main performers had died at the age of 32, he replied, “A lot of them don’t have long life spans. Little hearts and the whole thing.” The reporter revealed in his excellent exposé of the depressing freak show business that the performer in question died of alcoholism.

My career as a writer has helped me see how much we love stories that are both out of the ordinary and easy to understand. My dwarfism has caused me to be confronted with the ubiquity of scientific misinformation in these stories and has helped me see how xenophobia facilitates the lazy thinking perpetuating scientific myths about minorities. Black Americans can’t swim? More like they were barred from learning how. Half of gay male teens have AIDS? File that one next to the Victorian belief that masturbation causes blindness. Women don’t have the skills to be Silicon Valley programmers? In Western cultures where men are expected to be bread-winners, women have been dissuaded from pursuing the highest-earning jobs, whether we’re talking about doctors and nurses, professors and school teachers, or milk men and milk maids.

This is why I approach most scientific and medical “facts” uttered to me with a heavy dose of skepticism. This can be draining. Some days I would like to simply trust Google or a Facebook Group for dwarfs instead of having to track down out-of-print medical textbooks or wait months for my orthopedist to have a free appointment in order to find it out if I should be concerned about osteoporosis or fibroids. But doubt is the fuel of innovation and vigorous research ultimately harms no one.

And when facing complex disabilities and learning about what certain bodies absolutely can and cannot do, we should not confuse being talented with being good. Just as it is hard for us to resist a fascinating story, it is hard for us to resist the idea that strength of body and mind also indicates strength of character. But acing any sort of competition says little about your ability to be brave, honest, generous or humble. Need proof? Celebrity scandals are but a Google search away.
 
 

How to Insult 10 Different Kinds of Families with One Campaign Poster

17 Sep

Bundestag(Image by Michael Fötsch used under CC 2.0 via)

 

I was riding the bus home from work earlier this week through downtown Berlin when I caught sight of this campaign poster for the Alternative für Deutschland party. Featuring a white woman’s visibly pregnant belly, it reads: “New Germans? We’ll make them ourselves!”

Talk about a punch in the gut. At first glance, the poster appears to be promoting closed borders and “traditional” family values. But it can never be read free from the history of the Nazis’ obsession with using women to make white, Christian, non-disabled babies. Lebensborn was an association built expressly for that purpose. Women across Germany who had four or more children and who were not branded degenerates were awarded medals by the Third Reich. Anyone who has gone to school in Germany knows about all this.

It would be perverse to claim this AfD poster is more upsetting than any of the others, which target burqas, halal cooking and the idea of multiculturalism. But as a woman with both a residence permit from the immigration office and a disabled ID card in my pocket, I felt the attack personally. The deep sadness then turned to desperate hope that the poster escaped the view of those who are more likely to be targets of street harassment than I am (people of color, LGBT couples and religious minorities), and anyone returning from a fertility clinic or an adoption agency.

Germans go to the polls next Sunday. Over the last ten days the AfD has been projected to win between 8% and 12% of the vote – far behind the top two parties, but fighting neck-in-neck with the Greens, the Left, and the pro-business Free Democrats for third place. As long as they reach the 5% minimum necessary for earning seats in the Bundestag, a difference of three or four percentage points will technically have little effect on the AfD’s ability to influence policy. Because all the other political parties have refused to work with the AfD, it will not be able join a coalition. But coming in third place instead of fifth or sixth will make a big difference in the post-election narrative. Both critics and supporters of the AfD will claim that Germany is shedding some of the post-WWII taboos and political correctness that have defined its democracy for the past 50 years.

Many voters here tell me they hope the AfD’s success in next week’s election turns out to be a one-hit-wonder that quickly falls apart like so many small parties have done before. But no matter what happens on September 24th, it is important to remember that the 12% of voters who have ever been sympathetic to the AfD and its xenophobic politics have been around for a long time.

Unlike the ostentatiously angry Nationalist Party, which has never come close to garnering 5% of the vote, the AfD has sought success by branding itself the moderate voice of xenophobia. They hope to appeal to conservatives and left-wingers alike who worry about multiculturalism gone mad. Most of their voters like to think of themselves as open-minded, not hateful. They just think there need to be restrictions on immigration because they’ve heard tales of towns overrun by foreigners who don’t know how to put their garbage in the bins. They just want to ban burqas and niqabs because sexism. And Islamic holidays and symbols should not be prominent in public or in schools because Germany should be recognized as a Christian nation. They don’t mind that the AfD’s candidate for chancellor is openly lesbian. It would just be nice to put an end to all this talk about LGBT rights. They tell my friends and me that when they complain about immigrants, “I don’t mean you.” C’mon, they’re not Nazis. They’re just asking, “What about me?” If you’re gonna call it racism or sexism, then it’s the reasonable kind. The kind every person is born with. Common sense.

The short but bombastic history of the AfD proves that xenophobia in moderation doesn’t work. The party was founded by pro-business politicians who opposed the EU à la Brexit. These founders were soon driven out and replaced by the anti-immigrant populists of today. Every few months the party has had an internal war involving someone who said something that’s just too reminiscent of the Third Reich. On the outside, friends of color report more frequent street harassment since the AfD’s increased presence. The disability rights organization AbilityWatch reports the AfD was the only party who declined to respond to their issues. The gay and lesbian alliance LSVD rates the AfD the most homophobic of all the major parties despite its current leadership.

That campaign poster embodies all this. It’s what you get when you think some degree of xenophobia is reasonable.

 

Disclaimer: As noted before, no political party will ever be endorsed on this blog, but political threats to human rights and equality, both historic and contemporary, will always be analyzed.

 

 

Don’t Be A Sucker

20 Aug

 

Leaving you this weekend with original 1947 U.S. War Department film containing the two-minute clip that’s gone viral this week. It’s relevant in the wake of Charlottesville, and of yesterday’s anti-nationalist marches in Boston and here in Berlin. But it’s particularly relevant in its familiarity. The warnings of the dangers of authoritarianism and the assertion that there is no scientific proof of racial differences in character or ability have been repeated countless times in the 70 years since its release. Because so many have claimed otherwise. So often thinking theirs is a new, radical idea.