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.
(Image Sarah Mirk used under CC 2.0 via)
As the lists of hate crimes compiled by the Southern Poverty Law Center, Slate and The New York Times prove every week, bigotry in the United States persists. (As noted before, statistics on hate crimes here in Germany are hardly more heartening.) As debates over the best way to stem such crimes abound, a judge in Virginia has ordered a group of minors found guilty of defacing a historic black schoolhouse to spend the next year reading one book each month about various human rights struggles and to write a report on each, analyzing it in both historical and modern contexts.
She was given the idea by prosecutor Alejandra Rueda, who told the Times: “It occurred to me that the way these kids are going to learn about this stuff is if they read about it, more than anything. Yes, they could walk into court and plead guilty and get put on probation and do some community service, but it wasn’t really going to bring the message home.” The books from which they can choose are:
1) The Color Purple by Alice Walker
2) Native Son by Richard Wright
3) Exodus by Leon Uris
4) Mila 18 by Leon Uris
5) Trinity by Leon Uris
6) My Name Is Asher Lev by Chaim Potok
7) The Chosen by Chaim Potok
8) The Sun Also Rises by Ernest Hemingway
9) Night by Elie Wiesel
10) The Crucible by Arthur Miller
11) The Kite Runner by Khaled Hosseini
12) A Thousand Splendid Suns by Khaled Hosseini
13) Things Fall Apart by Chinua Achebe
14) The Handmaid’s Tale by Margaret Atwood
15) To Kill a Mockingbird by Harper Lee
16) I Know Why the Caged Bird Sings by Maya Angelou
17) The Immortal Life of Henrietta Lacks by Rebecca Skloot
18) Caleb’s Crossing by Geraldine Brooks
19) Tortilla Curtain by T.C. Boyle
20) The Bluest Eye by Toni Morrison
21) A Hope in the Unseen by Ron Suskind
22) Down These Mean Streets by Piri Thomas
23) Black Boy by Richard Wright
24) The Beautiful Struggle by Ta-Nehisi Coates
25) The Banality of Evil by Hannah Arendt
26) The Underground Railroad by Colson Whitehead
27) Reading Lolita in Tehran by Azar Nafisi
28) The Rape of Nanking by Iris Chang
29) Infidel by Ayaan Hirsi Ali
30) The Orphan Master’s Son by Adam Johnson
31) The Help by Kathryn Stockett
32) Cry the Beloved Country by Alan Paton
33) Too Late the Phalarope by Alan Paton
34) A Dry White Season by André Brink
35) Ghost Soldiers by Hampton Sides
My own personal recommendations would include Jubilee by Margaret Walker, Trash by Dorothy Allison and Americanah by Chimamanda Ngozie Adichie, since they contributed profoundly to opening my world view to perspectives and experiences I had never before considered. Stones from the River by Ursula Hegi and Good Kings Bad Kings by Susan Nussbaum were among the first nationally acclaimed novels I read that credibly portrayed experiences of physical disability. Please share any titles missing from the list that have had a similar effect on you in the comments.
Tonight, VP-Elect Mike Pence attended #HamiltonBway. After the show, @BrandonVDixon delivered the following statement on behalf of the show. pic.twitter.com/Jsg9Q1pMZs
— Hamilton (@HamiltonMusical) November 19, 2016
It’s a trick you’re bound to encounter if you work with issues of diversity: Someone comes along and insists that he’s got nothing against any particular minority—in fact he’s all for progress!—but lots of people feel left out by diversity awareness so people should really stop talking about it. Now. I was told on Election Night by a voter that bringing up racism or homophobia is “divisive.” Mark Lilla writes in the New York Times this week that an over-emphasis on minority identities at schools and universities is what has caused the backlash seen in the recent U.S. election.
This argument pushes the fallacious color-blindness approach to human rights, calling on us to “focus on our commonalities and not our differences.” Most people our society designates as minorities would love to be able to do this. We would be thrilled to live in a world where your race, nationality, gender, physical ability, sexual orientation, cognitive ability and appearance are considered no more remarkable than whether or not you’re right-handed or left-handed. Such a world is the final goal in the struggle for social justice. But the insistence that the only way to achieve such a world is to start pretending we live in it already demands we kindly stop filing complaints of inequality, underrepresentation, harassment and abuse.
Dr. Michael Ain says in the documentary Dwarfs: Not A Fairy Tale, “When you wake up in the morning, and you do what you have to do, you don’t think you’re different. When I woke up this morning to go to work, I don’t think, ‘I’m short.’ It doesn’t approach me when I look in the mirror. It doesn’t cross your mind until someone makes it apparent.” He then talked about how many doctors tried to block his efforts to apply for medical school on the basis of his physical appearance. “The first guy I interviewed with told me I couldn’t hold the respect of my patients because of my stature,” he reports.
Many of the proponents of the commonalties-not-differences approach are noble in their intentions if naïve in their conviction that such cases are tremendously rare and best left viewed as isolated incidents. But other proponents are simply irritated when attention is afforded to injustices other than those they personally have suffered. I have encountered many arguments placing blame on the “entitled, whining” attitude plaguing minorities, who are too obsessed with their own victimhood to learn about hard-work and self-reliance. Nine times out of ten, supporters of this view then argue that straight, white men actually have it harder than anyone else thanks to the social justice movements of the past 50 years. Which begs the question: Wait, who’s really acting like a victim here? Who’s blaming others for their lot in life?
Minority rights groups contain many people also guilty of such self-centeredness: Blacks who suppress Jews, Jews who suppress women, women who suppress trans citizens, etc., ad nauseam. Which is why it is crucial to reiterate that if we’re going to support the rights of one group, we have to support them all. Your identity matters far less than your willingness to think beyond your personal experience and understand the diverse sorts of harassment and Othering experienced by citizens of all identities.
And speaking of commonalities, I am done reading lectures from professors, pundits and princess experts that claim those of us in the minority rights movements are elitist and don’t understand the “white working class.” People who could be lumped into the “white working class” include many of my friends and family. Some of them join overly educated hard-liners in blaming immigrants and minorities for society’s problems, and some of them are leading the discussions on human rights. Some of them are massively insecure and will lash out if they have to hear anything about xenophobia, and some of them listen to diverse points of view better than anyone of any political conviction. And a tremendous number of them are LGBT, disabled, immigrant and/or non-Christian. Many of them are fully accepted by their peers for who they are. Many are not. Reducing human rights discussions to attacks on—or defenses of—“rednecks” ignores and insults the diversity of that group. Human rights discussions must always cross class lines. Those of us who base our work on intersectionality have been saying this for decades.
Writing and teaching about diversity awareness can be exhausting when even the classiest behavior is accused of divisiveness. Martin Luther King, Jr. knew this and so does Brandon Victor Dixon, the star of Broadway’s smash hit Hamilton, who made his now famous appeal to the incoming vice-president of the United States on Friday night. See the video above or the transcript here:
Vice-president elect Pence, I see you walking out, but I hope you will hear us, just a few more moments. [Some audience members begin to boo.] There’s nothing to boo here, ladies and gentlemen. We’re all here sharing a story about love. We, sir, are the diverse America who are alarmed and anxious that your new administration will not protect us, our planet, our children, our parents, or defend us and uphold our inalienable rights. We truly hope this show has inspired you to uphold our American values and work on behalf of all of us. All of us. We thank you for sharing this wonderful American story, told by a diverse group of men and women of different colors, creeds and orientations.
Critics on both sides of the political spectrum are reprimanding Dixon for making this plea. After all, isn’t Pence accepting all Americans by attending a play with a diverse cast like Hamilton?
As many others have pointed out, Pence is a politician recently elevated to a position of tremendous influence who has given many Americans good reason to worry that his acceptance of them does not extend much beyond tolerating their presence on a stage. He has successfully fought for the right for businesses to discriminate against LGBT customers and is an advocate of gay conversion therapy, which has been widely condemned as psychologically damaging by medical professionals. In his 2000 bid for Congress, Pence sought to defund any AIDS support organization that did not urge patients to repress their sexual orientation.
Both stars of Hamilton are openly gay and one is HIV-positive. In a just world, they would have no reason to worry about their health under any presidential administration. But we do not live in that world yet, and Dixon’s appeal to Pence was as justified as it was polite. I implore anyone who thinks otherwise to try changing their sexuality before they make a call for an end to diversity awareness.
(Image by Ashley Norquist used under CC 2.0 via)
It was one of those conversations where you bare all because you feel you have nothing to lose. A recent, unexpected statement about my dwarfism voiced to me by someone in a position of power had brought me to tears. Three decades of being insulted both directly and behind my back by people I know, and indirectly by many of my heroes—from John Lennon to Stephen Colbert—had left me thinking that I had heard it all and was above it all. But this had left me shaken. My friend Dee, who does not have dwarfism, cracked open two beers and examined with me the best way to deal with the insidiousness of certain prejudices.
Those of us with achondroplastic dwarfism are roughly 1 in every 40,000 people, but Dee himself has heard demeaning comments about dwarfs with far greater frequency. When confronting such remarks, he argued:
I wouldn’t use the “I have a friend who is a dwarf” argument. Because it would sound like I only care about the issue because I have a friend who could be hurt by it. It doesn’t convince other people because it doesn’t force them to examine why the idea is cruel. It just makes them think, “Well, I’ll be sure not to say that around him anymore because he’s touchy about it because of his friend…” Instead I play dumb. I keep asking them, “Why? I don’t get what you’re saying.” And they can never explain why.
I had never considered this before. Many people use the “I have a friend who is…” argument in the hopes that this might illustrate to the ignorant that such people are everywhere – that they are our friends and siblings and partners, not just oddities we get to abstractly pick apart in headlines and on TV. Yet that’s not what others hear.
And members of a given group often do not appreciate exaggerated claims of expertise on the issue via association. Madonna and Bill de Blasio, both white parents of people of color, have been lambasted in the past year for publicly cracking black jokes that fell flat. NPR’s Karen Grigsby Bates explained it best when she wrote:
Even though you’re dearly loved by and even related to black people, you aren’t black. You are NBA — Negro By Association — and that gives you props for knowing the culture and lots of little intracultural folkways. But it doesn’t give you a get-out-of-jail card for using phrases like C.P. Time. Especially in mixed company, in public.
The Kinfolk Kollective has argued that white parents of adopted black children must always be ready and willing to understand a perspective they simply do not have and to stand corrected when necessary. When such a willingness is absent, the issue is not at all about opening minds but the desire for insider expertise.
And “I’ve dated someone who is…” is not a solid argument—neither in defending the minority in question nor one’s own character—because simply having dated someone is no guarantee of true understanding. Not only are exes the last kind of people we tend to regard fairly, but so many people of minority status must face the risk that their date sees them as little more than a fetish – as in “I’ve always wanted to f*** a little person!”
And yet, in order stop rampant prejudice in its tracks, these issues must be talked about by those who are not experts. Journalists and writers like myself speak on behalf of all sorts of groups without belonging to them. The results are, of course, mixed.
In the film, Stories We Tell, producer Harry Gulkin argues that the truth about any issue cannot be found by giving equal weight to the perspectives of everyone involved in any way. There are, he argues, three circles of knowledge: The first, innermost circle comprises the people who are the players involved in the issue, the second comprises those who are directly affected by the players and their actions, and the third comprises those who tangentially know about it because they have heard accounts from those in the first or second circle. This theory applies easily to the experience of someone considered Different by their society and the other lives affected by the attention society affords it. Using the example of disability:
First Circle: The person who is disabled
Second Circle: Their parents, siblings, partners, closest friends (who are not disabled)
Third Circle: Relatives, friends, coworkers (who are not disabled)
The people in the Third Circle are most at risk for spreading misinformation, regardless of intention. It is noble, for example, to fight the good fight in the bathroom debate because you know someone trans whom you really like. But it doesn’t mean you won’t misinterpret their thoughts and feelings, or give in to temptation and reduce some of their story to gossip.
The people in the Second Circle, as Madonna proved, are also at risk for such blunders. And too many partners, close friends and immediate family members err by letting their darkest fears and most selfish impulses lead them to say or do something terrible to the person in the First Circle. But on the flipside, much of the best work in minority rights has been produced by partners and parents of frequently marginalized people. And the experiences of the caregiver and their place in society is another kind of knowledge altogether.
Returning to Dee’s approach, the goal should not be about personal relationships and expertise, but about the most effective way to open minds and halt the spread of misinformation.
Meanwhile, the More-Enlightened-Than-Thou game should be restricted to the smallest of circles. This was perhaps best elucidated to me by my friend Bill. Shortly after having come out, he mused to me, “I’ve decided you’re more open-minded than I am.”
“Why?” I asked.
“Because you have lots of friends who are gay. I only have one friend who’s a dwarf.” He took a sip of his Coke and smiled out of the corner of his eye. “And I’m thinking of dropping her.”
(Image by Ellen Forsyth used under CC 2.0 via)
Perhaps you are looking for gifts for little ones this holiday season. Or perhaps, like me, you simply know a staggering number of kids who will all have birthdays in the coming year. For either scenario, here is a sample of excellent—i.e., not boring or ugly—picture books that help raise diversity awareness through reading. All of these books have been featured in my workshops for pre-school teachers about helping minority children feel represented and teaching all students to see minority kids as their equals. They are divided into five categories based on objective.
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Books That Know Not Every Family Is Upper/Middle Class with a White, Straight, Biological, Married Mom and Dad… The most delightful thing about pre-schoolers is that they have almost no idea what “normal” means. Of course they are surprised by the extraordinary, but they don’t place value judgments on it until someone older teaches it to them. Critically analyzing the media images and stories kids consume is crucial because the media not only educates them about the world beyond their doorstep, but it instills them with subconscious ideas about what kinds of people society believes deserve to appear in books, film, and television. Kids are of course individuals and some may be temperamentally predisposed toward narrow-mindedness, but a preemptive strike against prejudice never hurt anyone.
Tell Me Again About the Night I Was Born by Jamie Lee Curtis (available in German & Spanish) – A story of adoption as told from the point of view of the child. “Tell me again how the phone rang in the middle of the night and they told you I was born. Tell me again how you screamed. Tell me again how you called Grandma and Grandpa, but they didn’t hear the phone ’cause they sleep like logs…”
A Chair For My Mother by Vera B. Williams – A story that portrays poverty without uttering the word. The daughter of a single working mom tells of the day they lost everything they owned in a house fire. They’ve been saving up every spare cent they have to buy a big comfy armchair for their new home ever since. In the end, Mom finally has a place to lie back and rest her sore feet when she comes home from work at the diner, and her daughter can curl up to sleep in her lap.
Two Homes by Claire Masurel (available in French & German) – A boy proudly shows off his two homes. “I have two favorite chairs. A rocking chair at Daddy’s. A soft chair at Mommy’s.” The parents are portrayed as having nothing to do with each other, while always beaming at their son. “We love you wherever we are, and we love you wherever you are.”
The Snowy Day by Ezra Jack Keats (available in Spanish) – Ezra Jack Keats was one of the first American illustrators to feature everyday black children in his stories. All of his books portray kids growing up in inner city neighborhoods. This is a brilliantly illustrated, very simple story about a boy enjoying freshly fallen snow in every way possible.
Susan Laughs by Jeanne Willis – Written in verse, Susan swings, makes faces, sings songs, plays tricks, splashes in the water, rides on her dad’s shoulders, races in the back of a go-cart. Susan also happens to use a wheelchair.
What Makes A Baby by Cory Silverberg (available in German & Spanish) – A book about reproduction (sperm, egg, uterus) that leaves out gender (mom, dad, man, woman). No matter how many people want to ignore it, plenty of kids have been born via IVF, surrogacy, and to LGBTQ and intersex parents. This book allows those kids to have a conversation about where they came from, while emphasizing that your family is the people who were waiting for you to come into the world.
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Books For Extraordinary Situations That Have To Be Explained… These stories get into the specifics of certain disabilities, conditions and diverse backgrounds, but there is no reason they should not be read to every child.
Thinking Big by Susan Kuklin – This book is out of print, but well worth the search, portraying a day in the life of an 8-year-old girl with achondroplastic dwarfism. She is great at painting, but needs stools to reach things at home and school. She has friends who hold her hand so she won’t get left behind on hikes, but she talks openly about the kindergartners who call her “baby.” She loves going to Little People of America meetings, but she loves being at home with her mom, dad and younger brother best of all. This book accompanied me from pre-school to fifth grade, read aloud by my new teacher to the class at the beginning of the school year in order to explain why I looked different from the others and to encourage my classmates to be upfront with their questions.
I Have A Sister My Sister Is Deaf by Jeanne Whitehouse Peterson– A day in the life of a hearing girl and her deaf sister. They play, argue, and help each other out, while explaining deafness as a mere difference in terms young kids can understand. The story has a gentle, poetic rhythm. On a deer hunt, the narrator explains, “I am the one who listens for small sounds. She is the one who watches for quick movements in the grass.”
The Black Book of Colors by Rosana Faría (available in French, German & Spanish) – Like the illustrations, everything is black for Thomas, so when it comes to colors, he smells, hears, and feels them. “Red is as sweet as a strawberry, as juicy as a watermelon, and it hurts when it seeps out of a cut on his knee.” The images are embossed for the reader to touch. The Braille alphabet is provided at the back of the book.
People by Peter Spier (available in French & German) – A superbly illustrated celebration of human beings and cultures all around the world. We have different skin colors, noses, hair styles, holidays, favorite foods, alphabets, hobbies, and homes, but we’re all people. It should be noted that this might be a bit of an information overload for children under 4.
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Books About Moments When Diversity Is Considered Disruptive… These books empower kids who have been teased or interrogated for standing out. They can also be used to teach a bully or a clique how to understand and accept harmless differences. Some teachers rightly express concern over introducing the problems of sexism or racism to a child who has never seen a boy in a dress or a black girl before. Doing so could foster the notion that we should always associate minorities with controversy. Save them for when conflict does arise, or when the child is old enough to start learning about history and intolerance.
Amazing Grace by Mary Hoffman (available in Arabic, German, Panjabi, & Urdu) – Grace is a master at playing pretend. When her class decides to put on the play Peter Pan, she’s told by some know-it-all classmates that she can’t because she’s a girl and she’s black. She shows ’em all right.
And Tango Makes Three by Justin Richardson and Peter Parnell (available in German) – Penguins Silo and Roy live in a New York zoo and are utterly inseparable. The zookeepers encourage them to take an interest in the lady penguins so that they can soon have baby penguins, but to no avail. Silo and Roy build a nest together and end up adopting an egg. When Baby Tango is born, the three of them couldn’t be happier.
You Be Me – I’ll Be You by Pili Mandelbaum (available in French) – A biracial girl tells her white dad she wishes she looked like he does. Dad explains that he is milk and Mom is coffee, and she is café au lait. He says she is beautiful and sometimes he wishes he looked like her. Soon they’re dressing up in each other’s clothes, she’s braiding his hair, and he’s powdering her face. She wants to go into town and show Mom. On the way, they pass by a beauty shop and Dad points out how many white women are curling their hair and tanning their skin, while so many black women strive for the opposite.
“Sick of Pink” by Nathalie Hense (currently available only in German, French, Japanese, Norwegian & Portuguese) – The proud musings of a girl who likes witches, cranes, tractors, bugs, and barrettes with rhinestones in them. She knows boys who sew pretty clothes for their action figures and who paint daisies on their race cars. When grown-ups shake their heads and tell them, “That’s for girls!” or “That’s for boys!” she asks them why. “That’s just the way things are,” they tell her. “That’s not a real answer,” she deadpans.
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Fairy Tales Beyond White Knights and Helpless Princesses… Even the most iconoclastic of people have their fantasies of love and heroism shaped by folklore. Yet the idea of revising Western fairy tales to make them less stereotypical has been met with a strong backlash. Whether or not you think it’s appropriate for kids to read Sleeping Beauty, Little Black Sambo or The Five Chinese Brothers, there is no harm in providing them with additional legends about love, valor and wisdom to make our cultural heritage more inclusive.
Children of the Dragon by Sherry Garland – Selected tales from Vietnam that rival any of the Grimm’s fairy tales in adventure, imagination and vibrancy. Many of the stories are supplemented by explanations of Vietnamese history that provide context.
Sense Pass King by Katrin Tchana – A girl in Cameroon outsmarts the king every time. Besides being one of the greatest illustrators of the 20th century, Trina Schart Hyman was a master of ethnic and socio-economic diversity in her many, many picture books.
Tam Lin by Jane Yolen – A Scottish ballad wherein a young maiden rescues her true love from the clutches of the evil faerie queen. In the end, she wins both his freedom and her clan’s great stone castle back. Not suitable for easily frightened children.
Liza Lou and the Yeller Belly Swamp by Mercer Mayer – A fearless girl triumphs over a ghost, a witch, a troll and a devil on her way to Grandma’s house in the bayous of Arkansas. Some of the best illustration there is. Think Little Red Riding Hood had she managed to outwit the wolf on her own.
The Talking Eggs by Robert D. San Souci – A Cinderella story of sorts set in the backwoods of the South. An elderly wise woman uses magic to help a kind, obedient girl escape her cruel mother and spoiled sister. In the end, she rides off to the big city in a carriage. (With no prince involved, this one passes the Bechdel test.)
King and King by Linda de Haan (available in Czech, Dutch & German) – It’s time for the prince to hurry up and get married before he has to rule the kingdom, but every princess who comes to call bores him to tears. The very last one, however, brings her utterly gorgeous brother, and the king and king live happily ever after.
The Paperbag Princess by Robert Munsch – After outwitting the dragon, Princess Elizabeth rescues the prince only to be told that her scorched hair and lousy clothes are a major turn-off. She tells him he is a bum. “They didn’t get married after all.” She runs off into the sunset as happy as can be. I have yet to meet a child who does not love the humor in this story.
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The Best Book on Diversity To Date…
Horton Hatches The Egg by Dr. Seuss – A bird is sick of sitting around on her egg all day, so she asks Horton if he would mind stepping in for just a minute. He is happy to help, but the bird jets off to Palm Beach the minute she is free. Horton continues to sit on the egg while awaiting her return. He withstands the wind, the rain, a terrible cold, and three hunters who insist on selling him and the egg off to the circus as a freak show. Throughout it all he reminds himself, “I meant what I said and I said what I meant. An elephant’s faithful, one hundred percent.” After he becomes a media sensation, the bird comes back to claim her prize.
Whenever I used this one in the classroom, I would ask the kids whom the egg belongs to. The 3-year-olds, with their preliminary grasp on logic, would always give the black-and-white answer: “The egg belongs to the bird because eggs go with birds.” The 4- to 5-year-olds would invariably go the other way, plunging into righteous indignation over the injustice of the bird’s demands: “The elephant! The egg belongs to the elephant because he worked so hard and he loved it so much and she just can’t come back and take it!” In the end, the egg cracks open and out flies a baby elephant bird, who wraps his wings around Horton. This is Seuss at his best, showing that loyalty makes a family.
(Image by srslyguys used under CC 2.0 via)
Imagine your body just as it is, in a world that looks exactly like the one we live in, but for one crucial difference:
You’re at a dinner party with some friends and some new faces, and you excuse yourself before heading to the bathroom. When you return to the table, you notice a few people exchanging looks. You wonder if your friends explained your absence to those who don’t know you well. You’re not sure if you should explain it yourself. Do you owe it to them? You’re not embarrassed, but they look a bit embarrassed for you. Then again, maybe you’re just being paranoid? You’re not really in the mood to get into it, and maybe these people would find it inappropriate dinner conversation. Maybe they’re the kind of people who would cringe, and you’d rather not discover that about them just now because the evening has been going pretty well and they seem nice so far.
Just when you decide not to say anything, the woman next to you asks, “Is everything okay?”
You reply, “Um, yeah.”
“Why did you get up and leave? Do you smoke?”
“Oh, no. No, I had to use the bathroom.”
“Oh… Wait, you mean like… you’re one of those… um… what’s the word for it?”
“Yeah. I’ve got frequent excretion syndrome. I have to use the bathroom a couple times a day.”
“Like, more than once a week?”
“Yeah, a couple times a day.”
“Like, every few minutes?”
“No, not that often. Just every few hours or so.”
“So you can’t hold it in?”
“Well, I’m—we’re—not supposed to. Not for too long. The doctors say it’s not healthy.”
“Wow. That must be so hard! How do you it?”
If 99% of humankind evolved in a way that they only needed to excrete once a week—as ball pythons do, for example—then modern society would look pretty different. The number of toilets available in public facilities would decrease significantly. A home with a bathroom would not be unheard of, but it would be a bit of a luxury, like an apartment building with an elevator. No one would assume that dinner at a restaurant or a friend’s house would guarantee access to such facilities. And the 1% of people who still needed a bathroom a few times a day would be considered disabled.
Eventually debates would crop up as to whether needing to excrete so often is “defective” or “just different.” There would be arguments as to who should accommodate whom: Should society provide more bathrooms, or should the minority wear diapers? Would you date someone who did? It must be so hard for parents and partners to deal with someone like that! I read on the Internet that those freaks do it in the shower! I would never get in a pool with one. You shouldn’t let your kids near them!
If you lived in this world, where most people’s bodies did not need to excrete more than once a week but yours did, you would undoubtedly experience frustration, as most disabled people do. But the source of your frustration would depend upon how you got to be the way you are.
If, after an accident, you suddenly belonged to a small minority of people who needed a bathroom more than once a week, you would experience a good deal of stress adjusting to your new schedule. Losing an ability you had taken for granted would feel unfair. Life was so much easier before this happened! Why me?! Some would be arguing that they would rather die than live like that. Depending on your support network and self-image, you might join that argument. But no matter how accepting your friends and family were, you would probably struggle with some internal shame about being less independent.
But if your body had always functioned that way for as long as you could remember—as it presumably does in the real world—most of your problems would stem from how alien the majority would make you feel. In the real world, we can all admit that needing a bathroom a few times a day can be inconvenient, especially on car trips, but it doesn’t feel “wrong,” “sick,” “crippling,” “freakish,” or “sad.” In a world where you’re the minority, you might accept the idea of wearing diapers rather than demand more bathrooms be built for you, or you might be deeply insulted by it. You might decide to combat the stigma of diapers. You would likely be upset hearing people say they would rather die than live like you.
That’s the difference between people who are born disabled and those who become disabled. The latter understandably experience stress, sometimes trauma, adjusting to a new condition. The former rarely feel the need to miss what they never had to begin with. Society likes to offer both groups pity. But they often respond to this pity with different answers because they have many different experiences. As we’ll see next week, conflict can only be avoided if everyone involved—those who were born disabled, those who became disabled, and those who are non-disabled—tries to understand the others’ point of view.
(Image by Ron Riccio used under Creative Commons license via)
A more sober ending to Dwarfism Awareness Month…
I remember being around 10 years-old when I began taking care to never refer to my dwarfism as an “illness” or a “disease.” An illness is something that tries to destroy you. It demands you go into battle. Even if you end up grateful for its having made you stronger, you’re glad when it’s gone. My dwarfism has always been around and I’ve never tried to conquer it. It’s a condition, a word as neutral as it is fitting. But is it a disability?
Many in the dwarf community insist that it is not. The thinking goes that being extraordinarily short is no more serious than being left-handed. We don’t think of left-handedness as a disability. It’s merely a difference, one of many physical features that can shape someone’s identity, like hazel eyes or an outie belly button. Being left-handed is only an inconvenience insofar as the world is built for those who are right-handed, and populated by some who still cultivate fear and hatred of those who don’t conform to the majority. Needing left-handed scissors and mouse buttons is not really thought to be an issue of disabled access – it’s more akin to needing glasses or extra-moisturizing shampoo. Diversity awareness over the last 50 years has led the vast majority of Westerners to shrug at the idea of left-handedness.
And such a neutral shrug is what dwarf activists seem to be coveting when they insist that dwarfism is not a disability. In the words of Andrew Solomon, “Neutrality, which appears to lie halfway between shame and rejoicing, is in fact the endgame, reached only when activism becomes unnecessary.” But is dwarfism only an inconvenience insofar as the world is built for those who are taller? It’s a compelling thought experiment, but it ignores all the medical complications I’ve had to deal with. And it raises the question: What is dwarfism?
The official definition, which lumps hundreds of skeletal dysplasias and growth hormone deficiencies into one category, is in fact only concerned with height. Little People of America defines a dwarf as anyone who stands fully grown below 4’10” (1.47 m). But height is relative. Women in Indonesia and Guatemala are 4’10” on average, which means that the LPA definition is based on a certain culture, and cultures are always changing as we move through time and around the world. As a pre-teen, I always got a kick out of seeing my towering parents become the minority at LPA meetings, while as an adult, I got a kick out of seeing my German-Swedish partner tower over my parents.
Physically, Warwick Davis and Peter Dinklage have no more in common than a black-haired Korean does with a black-haired Irishman. But they share many experiences rooted in society’s reaction to their short stature. They were both cast as dwarfs in the second Chronicles of Narnia film because the fantasy tradition cares first and foremost about looks, making up its convoluted ideas about heritage and separate races as it goes along. Most forms of dwarfism are caused by genetic mutations, but others result from chromosomal abnormalities, malnutrition, or even child abuse. Thus, because it encompasses all sorts of conditions with a tremendous variety of causes and complications, dwarfism is a social construct. Can a social construct be a disability? What is a disability?
This blog recognizes disability as a medical condition that causes you to experience more pain and/or limitations than the average person in your peer group, and therein attracts inordinate attention from society. And the attention has traditionally been negative. Disabled people carry a burden most other minorities do not in that we must argue that our lives and identities are no less valuable than anyone else’s, while at the same time admitting that we will always experience a good deal of pain no matter how accepting or accommodating society is. (Poor people are the only other minority that shares this burden.) This idea of inherent pain is what causes many activists in the autistic community and the transgender community to buck the disabled classification.
But when pain is indisputably inherent to a condition, it is frequently relativized in the hopes that this will reduce ableist attitudes. When I was born, the doctor pointed out to my parents that “everyone has something different about their bodies. One person has bad knees, another has a chronic skin rash. Emily’s difference is just a lot more noticeable than other people’s.” But does this mean that bad knees and skin rashes and seasonal allergies are all disabilities? There’s more to it than that.
If a medical condition is only minimally limiting and can be treated with standard procedures, we don’t really consider it a disability and rightfully so. While there is value in relativizing everyone’s struggles in order to calm our fears of the Other, it carries the risk of our failing to recognize differences that have much to teach us. The regular migraines I inherited from my mother don’t make me disabled. The pain can be intense and it’s infuriatingly inconvenient to feel one coming on at a dinner party while also feeling the hollow echo of an empty pill box in my bag. But the migraines are treatable—and not exorbitantly expensive to treat—and easily understood by others because plenty of people get them. Having to explain to people what my back and joints can and cannot endure is a more complex task. Alleviating or avoiding the pain is even harder.
I interviewed friends and acquaintances with achondroplasia about the physical difficulties they regularly face. Some described always needing to lie down for at least half an hour whenever they vacuum for 10 minutes or more, and needing to get up earlier than everyone else on weekdays in order to afford themselves more time for walking to work or class. Everyone has trouble finding comfortable shoes that fit—women’s business shoes and sandals pose the biggest challenge—and many need to wear orthotics. Camilla, a college student who has not undergone limb-lengthening, told me:
I definitely believe I feel fatigue more easily than people my age. I went out dancing with friends last night and I had to stop and just stand for a while because my legs were starting to hurt. Also, when I walk places with my average height friends, my joints start to hurt while they feel almost no effects of fatigue at all… I would say that the hardest physical aspect of having dwarfism would not be the height difference but the extreme muscle and joint pain that seems to be more and more easily triggered as I get older.
And by “older” she means approaching her mid-twenties. These physical limitations would sound less surprising coming from senior citizens, which is why, as an advisor explained to me, your eligibility for disability status decreases as you age and aching joints become more common to your peer group.
A friend who had limb-lengthening at the same time I did told me, “I know if I’ve been on my feet all day, my ankles get really stiff and I’m limping around at home at the end of the night… as compared to my friends who work all day and still manage to hit yoga class, the gym, or cycling class afterwards.” Those of us who have undergone limb-lengthening can test whether achondroplasia is a disability because we control for the socially-constructed advantages of height. Yet in my interviews, I noticed that many who have had limb-lengthening are often reticent to talk about their current physical hardships lest someone conclude that all that time spent breaking and healing and growing bones was for naught.
Indeed, pride complicates our perceptions of pain. While hypochondriacs rejoice when they qualify as “disabled,” those who have regularly been reminded by peers and institutions of the supposedly pitiful nature of their condition are often less willing to revel in it. Those who reject the idea of calling dwarfism a disability are often motivated by the desire to de-stigmatize dwarfism. I of course understand this desire, but I don’t see how we can make the argument without stigmatizing disability. And I am suspicious of any mindset that supports a hierarchy by essentially saying, “At least I’m not like them.”
Like people of color, people with dwarfism are united only by society’s reaction to them, not by any medical traits. This is why I do not believe dwarfism itself is a disability. However, most types of dwarfism are. The way in which the physical pain brought on by achondroplasia intersects with social limitations is explained very well by Spoon Theory, an idea invented by Christine Miserandino, who has lupus. It bears repeating that I can only begin to imagine what living with lupus is like. In the presence of someone needing to vent about the pain, I hope to be as wonderfully deferential as so many non-disabled friends have been to me. But the fact that lupus is an illness while achondroplasia is a not is no reason to ignore the fact that Spoon Theory perfectly illustrates the broader concept of chronic pain and fatigue experienced by people with all kinds of disabilities. Emily Brand described it eloquently in The Guardian last year:
The basic idea is that you have a limited number of spoons available for the day and each action will cost a given number of them – the more demanding the task, the more spoons would be required. The phrase “running low on spoons” can be a useful way of communicating the need for rest to fellow “spoonies” who also use this system and to friends and family who are in the know. Reading up on this is one of the best things anyone could do to help with providing day-to-day support to someone with a chronic health condition, as it’s a powerful analogy that can help people to empathise with how much of an impact even an invisible symptom like chronic pain can make.
I love the idea of “running low on spoons.” I used it just last week in explaining to a friend that I couldn’t peer with her into a store window because my swollen feet were begging me to keep off the cobblestones. But at the risk of sounding, well, confused, I’m not entirely comfortable calling myself a “spoonie” because experiences in college have left me averse to glamorizing conditions with labels that sound like club memberships. And between dwarf and has dwarfism and midget and little person and LP and short-statured and disabled and physically challenged and differently-abled, I’ve got enough labels to sort through.
(Image by Joshua Zader used under Creative Commons license via)
Whether you are left-handed and in search of scissors, or dark-skinned and looking for “flesh-colored” bandages in the West, almost every minority experiences problems not just of prejudice but of practicality. Facing the combined forces of social constructs and innate challenges can be exhausting. Few discussions on difference encapsulate this better than Wheelchair Problems. Run by a high school senior named Gina, the site primarily features memes, such as:
When I discovered the site this past fall, the memories came flooding back. I used a wheelchair for a total of only two years (ages 11 to 12 and 16 to 17), so while many of these memes perfectly illustrate my experience, others wake me up to situations I’ve never faced or considered. It’s an excellent catalyst for simultaneously building community and spreading awareness to those outside the community. Almost every one of the Problems merits volumes of social critique and philosophical debate, but they also demonstrate that you need not sign up for a three-day seminar on diversity to get the message.
I’ve discussed the inherent problems of micro-blogging before. But when the marginalized have the microphone, brevity is often not just the soul of wit but of agency. In an age when disabled people are still portrayed as either helpless victims, freakish villains, or larger-than-life heroes, we need more sites like Wheelchair Problems. Kinda now.
(Via)
This week I led a workshop about teaching pre-school children about diversity. I started by asking the teachers what privilege is, and I got the same answer a family member had given just days before: “Privilege is what people who are really lucky have. Like being born into a rich family, going to nice schools, or even just being exceptionally good-looking and therefore having an easier time of it.”
It is interesting that so many seem to be under the impression that privilege and luck are what extremely well-off people have. Privilege does belong to anyone whose place in society is considered “better than normal,” but also to anyone whose place is considered simply “normal.” As said before, privilege is granted by society to certain people based on things we had absolutely nothing to do with: our gender identity, our ethnicity, our sexuality, our physical traits, our mental capabilities, our class background. That is why any privilege—like any form of disenfranchisement—is unjust.
In the workshop, I read off the following list of statements that illustrate privilege to the participants who were lined up in a row. (It’s a hodge-podge of original statements and ones taken from privilege activities created by Peggy McIntosh, Earlham College, and the Head Start Program.) Anyone for whom the statement was true could step forward. Anyone else had to stay behind. All of us in the group stepped forward at least half the time. You can see for yourself where you would have ended up:
1) I always felt safe in my neighborhood as a child.
2) If I wish to, I can be with people of my race/ethnicity most of the time.
3) I never have to plan how to reveal my sexual orientation or gender identity to friends, family, or colleagues. It’s assumed.
4) I can go out in public without being stared at.
5) I participated in extracurricular activities as a child (swimming, football, ballet, piano, yoga, painting, etc.).
6) I can easily buy posters, picture books, dolls, toys and greeting cards featuring people of my race.
7) I can wear a skirt, a dress, jeans, or pants, without anyone staring or asking me to explain my choice.
8) In school, I could always take part in whatever activity or games the class was assigned.
9) None of my close friends or family has ever been arrested.
10) Rarely have I been asked to explain why my body looks the way it does or why I move or speak the way I do.
11) I have never worried that I might not be able to afford food.
12) When I learned about “civilization” in school, I was shown that people with my skin color made it what it is.
13) I have never heard of someone who looks like me being given up for adoption or aborted because of it.
14) Who I am attracted to is not considered a political issue.
15) I attended a private school.
16) I am never asked to speak for everyone in my ethnic group.
17) I can find colleges that have many people from my class background as students.
18) I can criticize our government without being seen as an outsider.
19) My family never had to move for financial reasons.
20) If I am assertive, it is never assumed that it comes from my need to “compensate” or struggle with my identity.
21) When I was a child, I never had to help my parents at their workplace regularly.
22) When I talk about my sexuality (such as joking or talking about relationships), I will not be accused of “pushing” my sexuality on others.
23) If I make a mistake or get into trouble, I am usually judged as an individual, not as an example of people who look like me.
24) I can go for months without being called straight, heterosexual, or cis.
25) I can use public facilities (store shelves, desks, cars, buses, restrooms, and train or plane seats) or standard materials (books, scissors, computers, televisions) without needing help or adaptations.
26) When I dress for a formal event, I don’t worry about being accused of looking too dolled up or not pretty enough.
27) As a child, I never had to help care for a family member.
28) When I watch family advertisements for food, medicine, clothing, games and toys, the families on TV usually look like mine.
29) I grew up feeling I could be whoever or whatever I wanted.
30) I have never been asked, “What do [people like] you like to be called?”
(Via)
The Paralympics end today after a week of what seemed to be decent coverage, though it depended on where you tried to watch them. The host country allotted 150 hours of coverage to the Games, Australia clocked in 100 hours, and Germany and France allotted 65 and 77 hours respectively. Meanwhile, the United States broadcast a whopping five and half hours and no live coverage at all, as per tradition. Yay.
Considering how little attention was afforded the Games themselves, it is unsurprising that there was little dialogue stateside about disability rights and issues of equality. What a missed opportunity. The British media immersed itself in it, with articles like “Is it Ok To Call The Athletes Brave?” Indeed, disrespectful attitudes toward people with disabilities today are more often implicitly patronizing than openly derisive, and it was pleasing to see the public address this.
The Paralympic Guide to Reporting that was handed out to media outlets brought up several interesting points about language. It rightfully asserts that disabling conditions or features should not be turned into personal nouns that define the entire person or people in question: i.e., the disabled, the blind, a paraplegic. Adjectives and verbs—a paraplegic athlete, athletes with disabilities—are less limiting, portraying a medical condition as one of many characteristics a person has. (This has been repeated to me ad infinitum by a friend who’s uncomfortable whenever I refer to myself as a dwarf. “You are Emily. You have dwarfism!” he insists. “And you have hazel eyes and freckles and long hair…”) Other terms and phrases to avoid noted by the guide include:
normal
able-bodied
wheelchair bound
confined to a wheelchair
suffers from
afflicted with
victim of
The last three are commonly used today. They’re problematic because they imply that a disability is always regrettable. Sometimes it is, and sometimes it isn’t. Suffering may have been an apt term for my achondroplasia two months ago, when severe lumbar pain made it hard for me to think of anything else during a sightseeing trip in England. But suffering has nothing to do with all the ways in which my condition has brought me in contact with all sorts of unique people and places and outlooks. I can’t imagine my life without it. It’s my version of normal. Unless the patient specifically says otherwise, any assumption that a disability is a round-the-clock tragedy is wrong.
For the sake of splitting hairs, I sometimes think the words disabled and disability are problematic because they automatically draw attention to what a person cannot do. In the worst case, they can sound pitiful. I’m very fond of the word typical in lieu of normal or able-bodied because it highlights that the standard by which we group people is based on a body type chosen by the scientific community. It implies medical averages, not social values. Typical is used in everyday speech to mean “usual” at best and “unexciting” at worst, unlike normal, which implies a state of correctness worth striving for, like in the phrase “back to normal.” Discussions of autism and some other psychiatric conditions now commonly use the term neurotypical to refer to people without the diagnoses. Maybe physiotypical could someday be the term for non-disabled people.
But as I’ve said a few times before, the search for acceptable terms is not about deciding what automatically classifies a speaker as Tolerant or Bigoted. Words are only half as important as the intentions behind them, and the desire to understand another’s perspective is what separates an empathic person from a selfish one. In the recent words of Professor Charles Negy, “Bigots… never question their prejudices.”
The above list of do’s and don’ts is probably disconcerting to some readers. I always feel simultaneously inspired and confused when given a list of hot-button words I’m told to avoid from now on. Hell, I’ve written the word able-bodied before, and I’m someone excluded by it. I find no problem with the word handicapped—I had handicapped housing rights in college and a handicapped parking sticker during my limb-lengthening procedures—but it’s considered offensively archaic in the U.K., apparently similar to invalid or cripple. As we’ve seen in the midget vs. dwarf vs. LP debate, rarely is there ever a consensus in a given community over labels. Labels are almost always problematic. In my experience, the dialogue always matters more than the conclusion it comes to.
And the inability of the U.S. media to have such dialogue during the Paralympics was pitiful.
Painting On Scars 