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Never Call Something “The Last Acceptable Prejudice”

21 May

Primitive Negative Art(Image by Primitive Negative Art used under CC 2.0 via)

 

When my family moved from one the most diverse school districts on suburban Long Island to rural Upstate, I was taken aback by the prejudices locals had about the New York metropolitan area. Reactions ranged from a creeped-out exclamation of “Ew!” to concerned questions about crime and pollution. “I despise New York City with a passion!” said one little old neighbor while passing the rhubarb pie during a Sunday get-together. Deeply homesick, I was resentful of the local disdain for what to me had been a wonderful, Sesame Street-like checkerboard of cultures. And I became slowly horrified the more I began to understand that “inner city” and “crime-ridden” were all too often euphemisms for “non-white.”

When I went on to college, however, I was reunited with City kids and professors who were equally open about their disinterest in rural life. They weren’t so much passionately hateful as consistently apathetic, convinced that anything that lay beyond a one-hour radius of Manhattan was more imaginary than real. Jokes about “hicks” often sprang up at the mention of hunting or farming. Many of these urbanites also considered the sheer existence of insects to be a personal affront no citizen should ever have to endure.

Now residing in a major city, I have little patience for bigotry about either setting. The jokes are only ever good when told by those who have actually lived there. And neither group gets to claim that they are the targets of “the last acceptable prejudice.”

Comedian and political commentator Trae Crowder argues just that in The Liberal Redneck Manifesto: “You ever notice how rednecks are pretty much the only subgroup of people in this country that it’s almost entirely socially acceptable to mock publicly?” Similar assertions have been made in reviews of J.D. Vance’s best-selling memoir Hillbilly Elegy. Last month Bill Maher repeated his claim that ageism is the last acceptable prejudice. Columnist Marina Hyde pointed out that The Guardian has declared old, white male-bashing to be the last acceptable prejudice, The Economist has decided looking down on regional accents is the last acceptable prejudice, and Religious Studies professor Philip Jenkins pronounced anti-Catholicism to be the last acceptable prejudice. An article last year in The Independent announced, “Laughing at Dwarfism Is the Last Acceptable Prejudice.”

I understand the frustration behind the sentiment. Dwarfism does not get much attention as a human rights issue. Much of this is due to our rarity in the general population, but also due to the pervasive and enduring belief that our existence is too funny to take seriously. As researcher Andrew Solomon writes in Far from the Tree, “At the mention of dwarfs, [some of my] friends burst into laughter.” As I’ve written before, students in a course studying the power of language told me they would never find the word “midget” as horrifying or upsetting as the N-word or the C-word because their gut reaction was to think of dwarfs as too cute and amusing to be controversial. So yeah. It’s an uphill battle.

But that hardly means that all of this constitutes the last acceptable prejudice. What about the ubiquity of condescension toward the rural poor or the elderly or those who speak in dialect? What about the G-word for Sinti and Roma? What about crude assumptions about adopted children? What about tired tropes about identical twins? What about gingerism? How many self-identified transvestites are out, besides Eddie Izzard? How many of the 1 in 2,000 people born intersex feel safe to be out and proud about their bodies? How many overweight people have never been shamed? And for the all the complaining about PC gone mad, how many racist and sexist jokes and arguments can you find just by sifting through TV shows, Facebook comments, or political party platforms?

The phrase “the last acceptable prejudice” is often used to impart the urgency of a human rights crisis, but it can also connote competition. And it veers dangerously close toward Oppression Olympics. During the 2008 election campaign, Hillary Clinton argued, “Oppression of women and discrimination against women is universal. You can go to places in the world where there are no racial distinctions except everyone is joined together in their oppression of women. The treatment of women is the single biggest problem we have politically and socially in the world.”

Such assertions almost always betray ignorance of the oppression of people other than those you identify with. To argue that there are places with no oppression of racial or ethnic minorities is a sweeping generalization, and to conclusively prove this would be a very tall order indeed. And to argue that the treatment of women is “the single biggest problem in the world” implicitly downplays the problems of xenophobia in places like Denmark, where the current political status quo is committed to gender equality initiatives but also committed to harsh restrictions on immigrants, refugees and religious minorities. 

The only time it is useful to compare oppressions is when you want to highlight another group’s success to prove it a plausible goal for your own. When African-American men and women were freed from slavery in the U.S., suffragists pounced on the opportunity to demand why only African-American men and not women would be granted the right to vote. Both the first and second women’s movements in the U.S. stemmed from the abolitionist and civil rights movements, and the gay rights movement stemmed from both. Transgender, queer, and intersex rights movements have advanced from that, as have others addressing widespread prejudice about birth, blood and the human body. 

Yet divisive bigotries and competitive thinking survive within these movements and thrive when Oppression Olympics is accepted as fair play. Solidarity is threatened by that, which is why we would do well to agree that inaccurate, superlative phrases like “last acceptable prejudice” harm more than they help.

 

 

A Mother’s Day Tribute to a Sullivan Woman

14 May

Barbara Sullivan 1975

 

I don’t remember when I came to the conclusion that being a dwarf meant I absolutely had to care about all forms of discrimination and social injustice. It seemed to always be there. I remember at age 19 stumbling upon some closed-minded corners of the Internet and promptly firing off mass e-mails reverberating with shock and outrage about the prevalence of homophobia in the dwarf community – a community that I believed, if any, should be particularly sympathetic to the concerns of those persecuted for how they were born. Solidarity among those ostracized for inherent traits they have no choice about should be automatic and unwavering.

But plenty of people who can be categorized as minorities disagree. There is a ream of reports about homophobia among many minority advocates, racism and misogyny in gay communities, transphobia in lesbian communities, and plenty of social justice groups fall short of embracing disability rights and the openness to bodily diversity it requires. It seems we can’t go a few days without some social justice activist revealing ignorance of and/or apathy toward the work other minority groups have been doing for years. In other words, not everyone “born different” feels the same automatic solidarity I do. It’s why the divide-and-conquer strategy so often works.

And perhaps there are other reasons for why friends frequently tease me for being an “issues person.” On Mother’s Day, it would be negligent of me to ignore another influence on my worldview that has been as powerful as my dwarfism. My mother, Susan Sullivan, is a social worker after all – and she decided to become one a good 10 years before my birth brought her and my father into the dwarf community. Her mother, Barbara Sullivan, was a social studies teacher. She would be 100 years old were she still alive today. Her worldview and its legacy deserve more than a cursory mention.

The 1975 article announcing my grandmother’s retirement in the Peru Central School newspaper reads:

Mrs. Sullivan, who teaches Problems of Democracy and Consumer Education, is presently teaching her last semester…

She has taught us many things. Maybe the most important of which is the ability to empathize or put yourself in someone else’s shoes. This is the foundation from which we can solve local, national and personal problems. Then she has gone one step further.

Mrs. Sullivan has opened many eyes to racism, sexism, poverty and the injustices present in our court and prison systems. Not only has she opened the eyes of her students, she has also helped her fellow teachers.

A lot of work is done in her classes but also a lot of discussions. The kind of discussions that help end individual prejudices…

You can bet she will be involved in the community projects that time has not allowed for in the past. Because that is the kind of person Mrs. Sullivan is – caring, understanding person who will always be remembered by any student who has ever taken any of her courses.

A little article cannot give appropriate thanks for all she has taught us. The best way we can show our thanks to her is to go out into the world and work toward ending the injustices that trouble her heart so much. Until we can do this, all we can say is… Thanks.

Grandma Barbara also taught the school’s first sex education class – a feat my teenage mother at the time found as impressive as it was embarrassing. But Grandma Barbara preferred interacting with teenagers over younger children, asking me with deep interest about drug use and the AIDS crisis when I entered middle school. When I was younger, the discussions were simpler but nevertheless motivated by sociological pursuit. She examined integration at my school by asking whom I interacted with, and I received my first black doll from her. She had been an ardent supporter of the Civil Rights Movement, and was deeply concerned about racial injustice long after it was fashionable. The night Barack Obama was elected president, I quietly shed a few tears over the fact that she had not lived to see it. But in my head I could hear her shrieking, “Hallelujah!” with all the abandon for which she was famous among her friends.

How much her own background brought her to such conclusions about the world I cannot say. She grew up in a small town in Western New York where pets were named unprintable racial slurs. An avid reader, perhaps her relentless pursuit of knowledge helped. But her intolerance of injustice was as intellectual as it was visceral. I remember her smacking the side of her head and clenching her fist in fury during a scene in the 1994 film The Jungle Book when Mowgli is shoved about and laughed at by British officers at a gentleman’s club. Through example, she inculcated in us an inability to stand idly by while others are ostracized.

One of the first Mother’s Days in the United States was proclaimed by suffragist and abolitionist Julia Ward Howe, who envisioned something far different from the celebrations embodied by flowers and greeting cards we have come to know today. She called for a day when the mothers of the world would commit to peace. She firmly believed that war would end across the globe once women were given the right to vote because no mother would vote to send her son into battle. Her belief was noble, however naïve or inaccurate.

And Grandma Barbara would have appreciated the sentiment. She was in so many ways a simply loving grandmother, who spoiled my brother and me with sweets and treats, and chased us around her backyard chanting, “Tick tock! Tick tock!” in pretending to be the crocodile from Peter Pan. But her boisterous love of the world was matched by her passionate desire to repair the world. My mother and I cannot deny she passed it on to us. It is a gift for which I will be forever grateful.

How Far Can Our Imagination Go?

16 Apr

 

Years ago on The Daily Show, comedian Lewis Black offered a weak defense of using the R-word. In his tirade, Black yuk-yukked about the idea of a show starring developmentally disabled people. His joke was hilarious if you find the sheer idea of such a show hilarious.

Well, this week the German disability advocacy organization Aktion Mensch has published a video that asks, “What if disabled people got to be the stars in Hollywood movies?” As examined before on the blog, it is a genuine problem that almost no famous actors are disabled and almost no disabled actors are famous. So with that I leave you all the video above and best wishes for this holiday weekend.

 

 

Rare Conditions & the Tyranny of the Majority

5 Mar

Odd One Out(Image by Javier R. Lineira used under CC 2.0 via)

 

Last Tuesday, February 28th, was Rare Diseases Day. (In leap years, the day is held on February 29th.) The organization’s website reports: “A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2,000. A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.” For the purposes of this article, I will supplant the word “diseases” with “conditions” since “disease” is a complex word already examined earlier on this blog.

Rare conditions are frequently misdiagnosed and poorly understood due to a lack of funding for research. All forms of dwarfism qualify as rare, since the most common form, achondroplasia, occurs somewhere between 1 in 20,000 and 1 in 40,000 births. Vosoritide, the drug developers hope may “cure” achondroplasia, is classified as an “orphan drug.” Such drugs are so named because of their difficulty in garnering support for research and development. The Orphan Drug Act of 1983 is intended to counteract this disparity, but vosoritide owes its existence to one father of a child with achondroplasia who had the financial means to launch the project.

However, I don’t think any of these facts were what motivated me as a child to ask my mother, “There are more dwarf people than tall people, aren’t there?” I knew the answer before my mother soberly shook her head. I remember that even at the time I knew I was issuing a hope rather than an honest question. I wanted there to be more of us. Because… Because even a four-year-old knows there is strength in numbers.

Numbers help build community and communities build solidarity. The women’s movement of the 70s, 80s, and 90s often touted the fact that we made up 51% of the world population. (This is no longer true.) Lists of adopted, dyslexic, Jewish, left-handed, colorblind, or genderfluid celebrities are but a Google search away for anyone seeking to celebrate diversity. Activists in the early days of the gay rights movement frequently argued that homosexuality was far more common than assumed. But arguing for a group’s rights on the basis of its ubiquity seems to contradict the foundation of minority rights. So why do we so often do it?

Minority rights advocates know that challengers of a certain group’s fair treatment will often try to portray low numbers as proof of anomaly and anomaly as deserving of a low degree of care. When singer Jason Webley tried—and failed—to defend his Evelyn Evelyn performance, for which he and Amanda Palmer dressed up as conjoined twins raised in the circus, he argued that the number of people who could be hurt by the project was small: “I had some fear that the few conjoined twins living in the world might find the project offensive.” (Emphasis mine.) One commenter sarcastically responded that Webley and Palmer should feel “lucky” that there were so few conjoined twins for them to offend thanks to the fact that the infant mortality rate of the condition is remarkably high.

A man from the U.S. recently complained to me that “LBG-whatever people are like .000001% of the population, but we gotta hear about their rights 24 hours a day!” In 1948, Alfred Kinsey shocked the public when he deduced from his interviews that roughly 10% of the U.S. male population was exclusively gay. The current estimates of openly gay and lesbian citizens are lower than this, but of course the effects of the closet combined with the complexities of self-identification and labels remain a wrench in the work of statistics. But even if studies someday decisively prove Kinsey was overestimating the percentage, they will not disprove the fact that gay people exist in every possible culture and sub-culture. Numbers will rise as shame and secrecy recede, which in turn will cause prejudice to recede. Studies have repeatedly proven that people are less likely to be homophobic if they personally know one or more people who are openly gay. Many more lives would have been saved had there been less homophobia and more funding for research in the first days of the AIDS crisis.

Acceptance is often aided by awareness and awareness is aided by prevalence. This is a frustrating fact for minorities who will always be low in number. Women and ethnic groups may dominate a given country at a given time, but people with intersex conditions or dwarfism will never do so. But while this may be a cause for loneliness—who doesn’t like knowing someone with similar experiences?—it should not be cause for existential threat. The guarantee of liberty and justice for all is founded on the very opposite of this. When liberal democracies commit to equality for all citizens, they commit to protect the few from the tyranny of the majority. In her essay, “What to Expect When You Have the Child You Weren’t Expecting,” philosopher Alice Dreger writes, “Your child’s civil rights and status as a human being should not depend on the prevalence of her condition.” (Emphasis hers. And mine.)

Whether you are a woman with the rarest form of dwarfism or a man with breast cancer or the carrier of a condition not yet named or a wheelchair user facing a staircase, your treatment should never be contingent upon how many others there are out there like you. Equality means rare and common conditions both deserve common courtesy. Whether a condition should be cured, treated or accepted by society should be determined by whether or not it inherently causes suffering. The quicker we learn to wrap our heads around that, the less suffering there will be.

 

 

Tuesday the U.S. Senate Will Vote on Betsy DeVos… and the IDEA

29 Jan

 

Tuesday the U.S. Senate will vote on Donald Trump’s candidate Betsy DeVos as Secretary of Education. DeVos’ answers during her Senate confirmation hearings earlier this month galvanized disability rights groups, who were horrified by her seeming ignorance of the Individuals with Disabilities Education Act (IDEA). When the law was passed in 1975, only 20% of all disabled children in the U.S. had access to public education. Thirty organizations, ranging from the American Academy of Pediatrics to the National Center for Special Education in Charter Schools, signed a letter sent to the Senate Committee on Tuesday, requesting a delay of the vote on DeVos until she has answered more specific questions regarding the federal law. DeVos sent a letter to the Committee chair on the same day, endeavoring to clarify her positions.

This all occurred the day after disability rights and issues disappeared from the White House website. Disability Scoop reports:

The outgoing administration’s site featured information on expanding education and employment opportunities for people with disabilities, enforcement of the Americans with Disabilities Act and a video tour of the White House in sign language, among other materials.

Now, however, links to the disability pages return an error… Searches for disabilities or disability on the new version of whitehouse.gov yield just nine results including two related to Grover Cleveland.

The American Association of People with Disabilities and other advocacy groups said DeVos’ letter failed to allay their concerns. DeVos has a long history of promoting school voucher systems, which use public funds to send children to private schools, while requiring families to waive rights and protections they are afforded by the IDEA. Because school voucher systems promote free enterprise for school administrators over adherence to federal guidelines, they have their roots in the states most famous for advocating on behalf of states’ rights. Florida has the oldest school voucher program for disabled students in the U.S. and in 2011 a Miami newspaper uncovered widespread corporal punishment. Corporal punishment was banned in schools in the counties in question, but teachers in the voucher system insisted they were not bound by any government law. Pro-voucher system sites insist the rate of corporal punishment is lower than in public schools in Florida, which does not ban corporal punishment statewide.

Independent disability advocacy organizations have generally argued that the voucher system has yet to prove helpful to those they represent. Disabled citizens, after all, are the first to be harmed by a system that encourages competition based on individual ability over universal civil rights protections. A study by the National Council on Disability concluded:

…it is not at all clear whether existing private schools want to serve students with disabilities or indeed can provide their specialized services and needed supports in the absence of the kind of critical mass enjoyed by school districts. IDEA, for example, recognizes the importance of family participation in the child’s educational plan, but also legitimizes the expertise of specialized staff and personnel who have specific knowledge and competencies for providing a free, appropriate public education (FAPE) to students with disabilities. To place the burden on parents to seek out a private alternative to provide the kind of specialized educational program needed to serve their students with disabilities may be unreasonable. In Florida, the special education vouchers are apparently providing the stimulus for new schools to come into existence to serve only students with disabilities. This movement, however, could reverse the scientifically documented findings supporting the provision of educational services to students with disabilities in the least restrictive environment of inclusive opportunities. The end result of large-scale voucher extensions to students with disabilities could lead to a new kind of institutionalization at public expense.

To be fair, the parents of many students with disabilities in the United States advocate for voucher systems. American conservatives tend to show more support for voucher programs out of a preference for the free market over government regulation and/or for specific religious instruction over an unaffiliated curriculum. These preferences also motivated the primarily conservative opposition to the U.N. Convention on the Rights of Persons with Disabilities. However, Valerie Strauss of The Washington Post argued earlier this week that criticism of the voucher system is bipartisan because both Democrats and Republicans are to blame for weakening public education as a civic institution over the past two decades, ultimately paving the way for candidates like DeVos.

 

 

From the Frontlines of the Women’s March in Berlin

22 Jan

berlin-00

 

German newspapers currently estimate 2.5 million people worldwide—on every continent, including Antarctica—took part in yesterday’s Women’s March.

Earlier this week there was a debate about the mention of disability in the official platform of the March on Washington. Disability advocate Emily Ladau wrote:

My heart sank when I read it.

The first time the word “disabilities” is mentioned, it shows zero recognition of disability as a social justice issue:

We recognize that women of color carry the heaviest burden in the global and domestic economic landscape, particularly in the care economy. We further affirm that all care work — caring for the elderly, caring for the chronically ill, caring for children and supporting independence for people with disabilities — is work, and that the burden of care falls disproportionately on the shoulders of women, particularly women of color. We stand for the rights, dignity, and fair treatment of all unpaid and paid caregivers. We must repair and replace the systemic disparities that permeate caregiving at every level of society.

I also recognize that women of color disproportionately take on the caregiving as a job, that caregiving can be extremely demanding work, and that fair compensation is imperative. But you know what it says to me that this bullet point is one of only two places where disability is mentioned in the entire platform released by the Women’s March? It says that my existence as a disabled woman is a “burden.” My existence as a disabled woman is “work” for someone else. My existence as a disabled woman does not matter.

Disability is mentioned only one more time in the entire platform… And considering that, according to the U.S. Census Bureau, 1 in 5 Americans have disabilities, disability rights deserve more than a cursory mention in the official Women’s March platform.

This touches on two problems: the vast swaths of feminism that ignore the discrimination burdening disabled women, and our macho culture’s fear of men taking on caregiving roles or any jobs done primarily by women. While feminists continue to fight for mandated paid maternity leave, mandated paid paternity leave is widely considered a bridge too far in the United States. Only 12% of American men offered it by their employers take it. Some economists have tried to explain away the election of Donald Trump by talking about the emasculated feelings of male workers facing a paucity of management opportunities in the American Rust Belt and that the only way to appeal to them is to give them jobs that make them the primary breadwinners in their homes once again.

While fair wages and economic inequality should be a paramount concern of any human rights movement, the insistence that men must be the primary breadwinners and will never be satisfied turning to “pink jobs” like caregiving is not highlighting an indisputable truth about all men – it is highlighting a problem in white male American culture.

Those who say the male ego simply cannot budge on the issue need only look to American black men, who pursue caregiving jobs at a rate 3 times higher than white American men do. Or look over here to Germany, where 1 in 5 students in caregiving programs are male. (Eighty percent of German men also took some form of paid parental leave—which is mandated by the government—in 2013.) Or look to the the Dulais Valley coal miners whose true, history-making story was the inspiration for in the 2014 film Pride. In that film, the problem of emasculation is recognized when one of the strike leaders argues against accepting donations from a gay and lesbian group: “Think of the men! It’s bad enough that their wives are financially supporting them, but now they’re relying on a bunch of gays and lesbians?!” Spoiler alert: By the end, the men they’re talking about open their minds. Or demonstrate that they were never concerned about it to begin with.

The Women’s March stated loud and clear that it’s on all of us to open minds about gender roles until our entire culture changes. We feed the denigration of women—not to mention all other forms of xenophobia—when we agree that white men should feel denigrated to do anything traditionally done by women. We need women who would be embarrassed to date a man in a traditionally feminine job to abandon such thoughts. We need men who are tempted to belittle a guy for going to nursing school to prove he is braver than that, until the man who does snicker is the one feeling out of place. And everyone needs to agree that caregiving is freakin’ hard and deserves to be compensated accordingly.

Yesterday’s Women’s March was a resounding success. Despite Ladau’s valid complaints—as well as earlier reports of friction among some white, middle-class feminists and feminists belonging to other minority groups—the day ended up awash in calls for combating injustice faced on the basis of disability, gender, race, sexuality, class, nationality, ethnicity/religion, immigration status, and appearance. In Washington, Gloria Steinem demanded a moment of silence for those who could not be at the March because they had to work in underpaid jobs. Tammy Duckworth got up out of her wheelchair and onto her crutches to demand unwavering defense of the Constitution and the Americans with Disabilities Act. Angela Davis seemed determined in her speech to mention every single marginalized group in the United States and overseas. And when the crowd in Berlin began chanting, “Black lives matter!”, one black woman at the center began singing for joy with tears in her eyes.

There were many signs and songs that not every protestor immediately embraced. One marcher who identifies as queer told me he disliked the portrayals of Donald Trump in drag because being trans or feminine should never be a source of shame. Plenty of marchers of all political stripes expressed unease with blatantly owning the sexualized slurs so many women are the target of. Those of us who are fans of cyborg feminism cringed at gender essentialist references to “Mother Earth” or “natural” womanhood. Others winced at all the swear words. But democracy is hard work. And it was a victory for democracy that millions were willing to march together and engage in an international conversation that sometimes made them uncomfortable. A willingness to leave one’s comfort zone is the first step toward fully embracing and protecting universal human rights.

 

 

Blaming the Election on the Minority Rights Movement Is Flawed and Dangerous

20 Nov

 

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.

 

 

While Facing A Trump Presidency, We Cannot Afford to Let This Slide

13 Nov

Ku Klux Klan(Image by Martin used under CC 2.0 via)
 

It’s been a good week for anyone who believes white Christian straight men deserve more power than anyone else. Donald Trump was elected to the most powerful office in the world with the support of extremist hate groups like the Ku Klux Klan, the alt-right, the Federation for American Immigration Reform, and the Family Research Council. Many have felt validated by the electoral victory to voice what they really think of minorities. Graffiti found in Durham declared, “Black Lives Don’t Matter And Neither Does Your Votes.” The Southern Poverty Law Center, whose mission is to document and prevent hate crimes, reported over 200 incidents in the first three days after Election Day, mostly at K-12 schools, universities, and businesses. 

None of this is surprising to those of us who documented the uptick in celebratory hate crimes in the U.K. after Brexit and who have witnessed Trump do nothing to discourage supporters screaming Nazi slogans at his rallies. His long history in the public eye gives no indication he would start any time soon.  

Trump launched his political career by spreading fear that America’s first black president is not a U.S. citizen. Back in the late 1980s, he injected himself into the notorious case of the Central Park Five, wherein a group of black teens were pressured under duress by investigators to confess to raping and beating a female jogger nearly to death. Trump took out a full-page ad in the Times, calling for New York State to reinstate the death penalty because “THEIR CIVIL LIBERTIES END WHEN AN ATTACK ON OUR SAFETY BEGINS!” In 2001, a lone man confessed to the crime and DNA testing proved the likelihood of his guilt to be 6 billion to one. As recently as last month, Trump insisted the Five were still guilty.

Trump has been accused by over a dozen women of sexual harassment and/or assault, and a leaked tape recording caught him bragging about forcing himself on women. Sexual violence prevention groups know that most sexual predators are serial offenders, and therefore the more people accuse someone, the more likely it is that he is guilty. It may be important to acknowledge that in the United States one is innocent until proven guilty. But the Central Park Five know that if you’re a black man in Donald Trump’s world, you may be declared guilty even after you’re proven innocent. Trump throwing a black supporter out of his rally upon assuming he was a “thug” has done nothing to ease worries about the way he likes to govern.

Many Trump voters have been joined by those who didn’t vote at all in calling for national unity now that the election is over. They take offense at any assumption that their political choice was based in such bigotry. The best response to this has come in a post by Michael Rex that’s gone viral:

I believe you when you say you didn’t vote for any of these things. Most of America wasn’t thrilled with the choices we had in this election. But… If you’re tired of being called a bigot, then you need to use the same voice you used on Tuesday and speak out against these things fully and clearly. It’s not enough that you didn’t say them yourself. You need to reassure your friends and family members who feel like they no longer have a seat at the table that you still stand with them, even if your priorities were different on Tuesday. If you aren’t willing to do that, then you have no right to call for unity.

Mark Joseph Stern writes this week at Slate, “I Am A Gay Jew in Trump’s America. And I Fear for My Life.” And rightly so. Not only are hate crimes on the rise in the U.S., but nationalist movements that blame immigrants, minorities and gender equality for their problems are gaining power here and in the U.K., Australia, France, Sweden, Germany and in Eastern Europe. In the countries where democracy is younger than I am, voters are reverting to authoritarians with little interest in the processes and institutions that protect human rights. Non-whites, religious minorities, women, LGBT citizens and those of us with disabilities know that the concept of universal human rights is younger than many people they know. A few wrong turns and authoritarians could turn all the progress of the past 50 years into a mere moment in human history when the law offered to protect us against violence, harassment, medical abuse, and other existential threats.

Trump hasn’t had a chance to change any laws yet, and the Alternative for Germany is only polling at 20%. But hate groups around the world have been feeling empowered for a while now. Neo-Nazis, Klansmen and any other people willing to beat someone up for the way they were born commit their crimes when they think they can get away with it – when there is a high number of people who aren’t violent but still share their views, combined with a high number of people who don’t care either way about human rights discussions.

A pregnant, non-white German woman was recently punched at a train station near a friend’s house for being a “lousy refugee.” An acquaintance in a wheelchair was told by a stranger on the street, “We should gas your kind.” Perpetrators are less likely to do any of this if they fear not just legal consequences but their friends and families shaming them for such despicable behavior. Which is why it is on all of us to support the watchdog organizations that aim to expose and combat hate crimes, to speak up for those who are being told that their place in the new world order is at the bottom, and to convince the people who don’t care about any of this that they absolutely must summon the bravery to.
 

  

It’s Dwarfism Awareness Month!

2 Oct

x-ray of a dwarf(Image by Lefteris used under CC 2.0 via)

It’s October, so you know what that means. Here’s one of the most popular pieces from the Archives:

 

October is Dwarfism Awareness Month. This means you should be aware of the facts and experiences regarding people with dwarfism for the next 25 days. Then you can stop and go back to life as usual.

We have picked this month because it has Halloween in it. This way we can ensure that no one will offend us through drunkenness or choice of costume. This plan is foolproof.

We realize that October is also Breast Cancer Awareness Month, LGBT History Month, and Polish-American Heritage Month. Given that a month can handle only one minority at a time, we urge you to side with us. I myself picked my dwarfism over my Polish heritage and I promise you, the choice was easy. Anyone who chooses otherwise is a self-hating dwarf and the reason why we haven’t had a dwarf president yet.

In order to become Aware Of Dwarfism (A.O.D.), you can read up on it under the FAQ’s, read about some of my dwarfish opinions here or here or here, or consider any one of the following facts:

To begin with, Peter Dinklage is the best dwarf. Everyone agrees on this.

We love being photographed on the street. (Thank god for camera phones!) It is every dwarf’s dream to end up on Tumblr or Instagram someday. Either that or in a Peter Jackson film.

It is true that all dwarfs are magical. But especially homosexuals with achondroplasia. They are dwarf fairies.

We love it when you ask about Lord of the Rings. Please keep asking us about Lord of the Rings. We’re currently in fierce competition with New Zealanders over who gets the most LOTR questions.

Mini-Me is even better. It is the height of originality. We can’t get enough of it.

Please keep telling us that we must be really good at hide-and-seek. We don’t quite believe it yet, so your pointing it out is helpful.

Tossing a dwarf will make you more of a man. This has been scientifically proven by evolutionary biologists.

Adding a dwarf or two to your fantasy/cabaret/oddity story will make you a sophisticated artist. In his little known essay “L’art mystérieux du nain,” Toulouse-Lautrec wrote that World War II would have been prevented had there been more dwarf figures in 1930s song and film. (Terry Gilliam and Amanda Palmer are currently in a bidding war over the rights to the essay.)

In China and Russia and other evil countries, limb-lengthening is a cruel form of torture. In America, limb-lengthening is a miracle.

Liberals say a dwarf who has had limb-lengthening is destroying the dwarf community. Conservatives say a dwarf who has not had limb-lengthening is destroying their own future. Realists point out that dwarfs are destructive by nature.

Indeed, there are three dwarf personality types: belligerent, cute or nefarious. That is all. If you have met a dwarf who is contemplative or sarcastic or boring, that person is a not a dwarf. He is a fraud. I mean frawd.

Garden gnomes are frawds.

Midgets are left-handed dwarfs. Munchkins are elves in disguise. Oompa-Loompas are related to Pygmies, but less racist, so when in doubt, say Oompa-Loompas.

Dwarfs are happy to answer any of your questions about their sex lives. Just remember that if you don’t laugh at some point, we will be offended.

Dwarfs cannot have normal children. Like our great-great-great grandfather Rumplestiltskin, we are always on the lookout for normal children to kidnap. If you see a dwarf with normal children, contact the local authorities immediately.

Remember these facts and you will be officially A.O.D., which means no one has the right to accuse you of being insensitive from here on in. Better yet, you can recite these facts at dinner parties and lecture your friends with your newfound expertise. It is very important to be the expert on a subject at a dinner party. It proves you are a grown-up.

It is also important to spend as much time as possible this month making up height puns. Unfortunately, this is a bit of a challenge as many of the best puns have already been taken: Thinking Big; Don’t Sell Yourself Short; Even Dwarfs Started Off Small; Little People Big World; In Our Hearts We Were Giants. I suggest aiming for slightly more abstract sayings like, “All dwarfs have high voices. Ironic, isn’t it?” But make sure you say “high” emphatically or it will be lost on people. (Oh, and I’ve found that saying, “Achondro -paper or -plastic?” confuses most supermarket cashiers.)

And finally, sometimes it’s spelled “dwarfs” and sometimes it’s spelled “dwarves.” We get to decide. It’s the best part about being a dwarf.

 

 

Originally posted in October 2013

There’s More Than One Way To Make A Nerd

19 Jun

buch-und-baum-copyright-emily-sullivan-sanford

From the Archives

Can we stop using the words “nerd” and “geek” interchangeably? Forgive me if this doesn’t sound like the most pressing social justice issue of our time, but hear me out. I think the distinction is subtle but significant. 

Geeks are a subculture. They like science fiction usually because it’s built around ideas posed by math and the natural sciences, just as literature is built around ideas posed by the humanities. If you don’t have a big appetite for Star Trek, the Hitchhiker’s Guides, or video games, you’re probably not a geek. Just like if you don’t enjoy nature, long hair, or folk rock music, you’re probably not a hippie.

Nerds, in contrast, simply share one trait: wanting to learn almost everything there is to know about a subject at the expense of their cool factor. And it seems to me that there’s a little nerd in all of us. From trivia and statistics to random factoids, a nerd examines a topic down to what Slate calls “the granularity that would glaze the eyes of a normal, well-adjusted human.” Sometimes the eye-rolling this brings on is fueled by inane rules for style that value keeping the lowest common denominator very low. But anyone with social intelligence knows that it’s also unfair to demand everyone share your love for a subject, no matter what it is. 

I try not to look bored when friends expound upon existentialism, or when my dad gets excited about weather statistics, but I can likewise put them to sleep with monologues about typography or Russian grammar. I have a hard time looking thrilled when my husband analyzes the meal he cooked for us in too much detail, or when my uncle gets out his car magazines, but I get the same looks from outsiders whenever I discover a fellow classic rock fanatic. An obsession with trivia—in any area—will forever be the opposite of a social lubricant. Saying, “I’m such a nerd” with a sheepish grin usually means, “I love something to a degree that might ruin the evening if you ask me about it.”

But traditionally, the nerd word is used much more specifically. Nerd hobbies are thought to be geeky. Nerd intelligence almost always means “book smart.” The Urban Dictionary says a nerd is “one whose IQ exceeds his weight.” A gardener and a mechanic can be skilled, but only botanists and engineers can be nerds. Why? 

One summer in my early teens, I was sunbathing at a friend’s house and talking about the new atlas I had bought. “I’m hoping that someday I can identify all the flags of the world,” I smiled, with perhaps a bit too much enthusiasm.   

My friend’s mother frowned and asked, “Why?! Just to be better than everyone else?”

She knew how to repair a motorcycle. I knew the names of the world’s nations. Why was my knowledge automatically seen as a pretension? (I was too embarrassed and too young to dare to ask her, but I wish I had.)

A lot of it has to do with social status, however ridiculous that is. We tend to see bookish people as the inventors of ideas and therefore the brains. People working in production and maintenance are the realizers of the ideas and therefore the salt of the earth. Artists are classified depending on which of these two groups they appeal to: Classical composers and jazz musicians make high art for the “elite,” while rappers and country singers make soul for “the people.” (Artists who appeal to both are gods and everyone wants to sleep with them.)    

Self-proclaimed nerds sometimes defend these rigid categories, reassuring themselves that the only reason anyone would malign their expertise is meat-headed jealousy. This is certainly true in many cases. The stereotypical anti-intellectual will lash out when someone’s way of life threatens to highlight his weaknesses. But the stereotypical ivory tower snob will sneer when someone’s way of life threatens to highlight his weaknesses.  Both the belligerent athlete and the arrogant mathlete lack the emotional intelligence to recognize that both trigonometry and football require brains. Both topics can be obsessed over in nauseating detail. But Western society—which places an inordinate emphasis on IQ—has yet to be convinced of this. IQ tests define “intelligence” as strong mathematic and/or verbal skills, and so do most of us when we describe someone as “smart.” This is wildly inaccurate and unhelpful.

Howard Gardner’s theory of multiple intelligences turns 30 this year, but we have yet to adopt the concept into our common parlance. The theory currently identifies seven forms of intelligence:

1) Logical-Mathematical Intelligence – useful to chemists, accountants, physicists  

2) Linguistic Intelligence – useful to writers, speech therapists, managers

3) Kinesthetic Intelligence –  useful to athletes, surgeons, carpenters

4) Visual/Spatial Intelligence – useful to photographers, architects, engineers

5) Musical Intelligence – useful to composers, dancers, poets

6) Interpersonal Intelligence – useful to counselors, salespeople, politicians

7) Intrapersonal/Introspective Intelligence – useful to philosophers, artists, parents

(Some groups have promulgated a theory of Culinary Intelligence, as well as Sexual Intelligence.) 

So there are more than two ways to be “smart.” It seems logical to conclude that people choose their jobs based on combinations of intelligences. A speech therapist needs both linguistic and interpersonal intelligence, whereas a songwriter needs linguistic and musical intelligence. A dancer needs musical and kinesthetic intelligence, while a soldier needs kinesthetic and spatial intelligence. Take that, IQ tests.

But this shouldn’t come as a big surprise. Every one of us knows someone who’s read a hundred books but can’t fill out a tax form. Or who can identify every bit of green in your backyard but can’t analyze news stories in a historical context. Or who can counsel people with all sorts of problems but can’t dance for the life of them. Or who can sew the coolest costumes but can’t make strangers feel comfortable. We should all be big enough to take pride in our talents and to be teased for our weaknesses. Especially if we’re going to start fully accepting people with certain disabilities.

The theory of multiple intelligences does not claim that everyone is a genius in their own way. Everyone knows a good guitarist isn’t as smart as a great guitarist. But the theory asserts that a great guitarist is no smarter than a great nurse or a great ballerina or a great chemist. So why then do we call the chemist “smart” and the others “talented”? 

And why isn’t the soccer nut who won’t stop analyzing the semi-final games called a nerd? Why isn’t the housewife who goes on and on about how to master pie crust recipes called a nerd? Maybe it’s because these activities are socially condoned: A guy is expected to love sports and a housewife is expected to love baking. Maybe by choosing less socially accepted hobbies, people of high IQ monopolize the term “smart” as a consolation prize.  Maybe the term “nerd” still carries too much stigma for socialites to desire it. Maybe if we broaden the use of these words, maybe if everyone recognizes their inner nerd, then maybe some social barriers will be knocked down along the way.

I’m not expecting utopian results. We’re all doomed to clash over our passions because no one can be expected to obsess over the intricacies of every subject on earth. Whenever I get together with a friend who works as a computer programmer, it’s a fight over whether we play games that reward strategy (like Monopoly), or games that reward vocabulary (like Scattergories). He’s geekier than I am, but he’s not nerdier. In any case, I always get my way because I’m bossier.

Originally published January 13, 2013

 

 

On Using the “I Have A Friend/Sister/Coworker Who Is A…” Argument

29 May

light parade EXPLORED! (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 non-white people, 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.”

 

 

Muttertag

8 May

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

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 are not mothers but have raised a child as well as any mother could,

In gratitude and with the deepest respect.

 

 

Can We Understand What It Is Like To Hear Sound for the First Time?

17 Jan

listen(Image by Jay Morrison used under CC license via)
 
In the 1990s, Cristina Hartmann was one of the first of a few hundred deaf and hearing impaired children in the United States to undergo surgery for a cochlear implant. She has written extensively about the experience of hearing sound for the first time after the implant in her right ear was activated, most recently this month on Quora.com:

My mother was the one who told me, “Raise your hand when you hear something.” That statement left me baffled. What was I looking for? It was a bit like searching for Waldo when you didn’t know what he looked like.

In that tiny, windowless room deep in the large Manhattan hospital, the audiologist began tapping away at her keyboard. Everyone stared at me, even a woman standing in the doorway whom I had never seen before. I felt the heavy weight of expectations on my shoulders. I had to do something. I concentrated very hard, searching for the mysterious, indefinite Waldo. Whenever I felt anything, an itch or a breeze, I raised my hand slowly, searching everyone’s expressions for whether I had gotten it right or wrong. Nobody gave me any confirmation, so I went on guessing. Twenty-five years later, I realize the whole thing was a show that I performed. I knew this was a momentous event, and I didn’t want to disappoint….

As a congenitally deaf child (who was a bit long in the tooth at 6), I had never formed the neural pathways for my brain to even begin processing auditory stimulation. In the fashion of the ostrich, my brain ignored the strange stuff, and I remained as deaf as I had been an hour prior…

It took months and plenty of therapy for her brain to adapt. Thirteen years later, the activation of a second implant, this time in her left ear, proved a more harrowing experience than the first:

As the audiologist began the beep sequence, I burst into tears and involuntarily clenched the left side of my face. She looked up, puzzled. “Why are you crying? You’ve had this before!” she said. The pain was like sparklers going off on the left side of my head. The stimulation, as little as it was, completely overwhelmed me.

Even though I had already laid the neural pathways for auditory stimuli for my right ear, my brain was unprepared for the stimuli coming from the left side. Since my brain had already experienced this type of stimuli, it could process it, but it was still sensory overload. That stuff hurts. It took me months to acclimate myself to the new implant, but in the meantime, I cringed every time I turned it on. As I said, laying new neural pathways takes work.

Hartmann was later told by the mother of another patient, “Once they started with the beeps, [my daughter] screamed and cried.”

Such narratives exist in stark contrast to the YouTube videos of newly activated implant users laughing and smiling—and, in one case, crying for joy—that have been bouncing around the Internet with far greater frequency. While both narratives provide important information for those considering cochlear implants for themselves or their children, they are also an important contribution for the greater public in our understanding of what it means to be deaf.

It makes sense that crossing out of the world of silence into the world of sound is just as disorienting as its opposite. A hearing person with a middle ear infection strains to perceive the sound of speech, and a deaf person with a new cochlear implant strains to tune out noise pollution: the knocks of a radiator in another room, car doors slamming on the street, wind, footsteps, not to mention the countless background beeps and clicks of the Digital Age. After all, when a baby leaves the womb, she does not instantly adapt to her new home. She comes out crying. There’s too much light and not enough warmth. And, if she is not deaf, there is too much sound.

Speech is no less difficult to learn than Sign language, just as English is no less difficult than Chinese. The ease with which we learn one form of communication or the other depends entirely upon our personal experience and place in the world. For those of us who have grown up hearing speech, the viral videos communicate something very different than for those who grew up in Deaf culture.

While the experiences of utter delight portrayed in the videos are valid, their popularity contributes to an oversimplification of the issue. Watching a toddler smile upon finally hearing his mother’s voice for the first time sends a very strong subliminal message: Being deaf must be worse than not being deaf, and therefore anyone would want to join the world of the hearing. But the general public as an audience is already biased toward the hearing world’s standards of happiness. We are moved by the sound of loved ones uttering our names but not at the image of them signing our names because our culture does not rely on—and therefore does not highly value—Sign language.

This what inspired Lalit Marcus, the daughter of deaf parents and an active promoter of Deaf culture, to pen an article for The Wire titled, “Why You Shouldn’t Share Those Emotional ‘Deaf Person Hears for the First Time’ Videos”:

I want to make it clear that I don’t have a problem with people who choose to get cochlear implants. Medical decisions are painfully personal… I’m all for people making the health choices they think are best for them. What bothers me are the maudlin videos produced out of someone’s intense, private moment that are then taken out of context and broadcast around the world. What bothers me is how the viewer never learns how the individual came to the decision about their implant, which factors they took into account, whether their medical insurance covered it. Sometimes we don’t even learn their names.

This gives me pause. I consider the clip of me removing my casts to look at my newly lengthened legs, which featured 15 years ago in the HBO documentary Dwarfs: Not A Fairy Tale and last year on Berlin’s public station. The moment was simply joyous—as was the moment I stood up, let go of my friend’s hands and took my first steps—but the story behind it was abundantly complex. Which hopefully both documentaries portray.

I have endeavored to communicate that through this blog and all the media work I have done for the past 20 years.

Limb-lengthening and cochlear implant procedures are markedly different in several ways. Limb-lengthening, for example, does not threaten to endanger another language. But it does threaten to break ranks in the dwarf community through the controversy of altering versus accepting extraordinary bodies. Both procedures have proven to evoke vitriol among their proponents and detractors.

Hartmann reveals:

Most of my deaf friends were good about my CI. They didn’t mind it, except for the fact that my speech therapy cut into play time. That being said, people in the Deaf community felt free to make pointed and derisive comments about my CI. I still get these comments, even almost 24 years after my surgery. To some, I’ll always be a CI-wearer and a turncoat.

The CI advocates aren’t any better, if not worse.

I have very pleasant relationships with many parents of implanted children and CI users. I, however, have also been called a failure because I still use [American Sign Language] and don’t speak perfectly. I’ve also seen a mother run across a room to prevent her child from signing to another deaf child. I’ve been scolded for making gestures and looking too “deaf.”

The debate, of course, is ongoing.

But for those of us not faced with opting for or against a cochlear implant, we are faced with the challenge of overcoming our bias and remembering that Deaf culture is no less valid than the hearing culture we inhabit. Especially when those admittedly tantalizing videos wind up in our Facebook feeds.

 

 

What the Stubblefield Rape Case Means for Disability Rights

22 Nov

Words as skin(Image by Maurizio Abbate used under CC license via)

 

When people continue to believe in a method that has repeatedly been proven not to work, what harm can it do? Does it matter that an herbal supplement is ineffective if someone who uses it says it truly makes them feel better? Does it really matter whether or not primates can learn American Sign Language or parrots can learn to read English out loud if it makes animal lovers so happy to believe that they do?

Misinterpreting animal communication can of course be dangerous. In 2007, a Dutch woman who insisted she was bonding with an ape at her local zoo refused to believe the primatologists’ warnings that staring directly into a male gorilla’s eyes and showing one’s teeth—i.e., smiling—triggers aggression. She refused to believe this even after the gorilla broke out of his enclosure and attacked her.

But what if someone assumes a living person is communicating with them? What if they assume said person is confiding their wishes and life choices in them? What if they can do so because we don’t share a common language with the person they claim to be speaking for?

Facilitated Communication, a.k.a. “FC,” is a method developed in the late 20th century to help severely disabled people with little or no speech communicate with others. By supporting their patient’s hand or arm, a trained facilitator could theoretically help the patient type out sentences, thereby “unlocking” intelligence previously obscured. The method was considered a breakthrough for patients with diagnoses ranging from severe autism to severe cerebral palsy. It was touted as a miracle for their loved ones, who understandably wanted nothing more than to be able to hear their thoughts, wants and needs.

Anna Stubblefield is a philosophy professor and disability rights advocate who, until recently, taught seminars about FC at Rutgers University. What she did not teach her students is that FC has been condemned over the past three decades by the American Psychological Association, the American Association of Pediatrics, the American Association on Intellectual and Developmental Disabilities, the Federal Trade Commission, and the New York State Department of Health, among others. Double-blind testing generally reveals the facilitator to be subconsciously guiding their patient’s typing, rather than simply supporting it. This year Sweden banned FC in schools nationwide.

Professor Stubblefield adamantly rejects the classification of FC as a pseudoscience. Her mother was a pioneer of the technique. When one of her seminar students asked her in 2009 if it could perhaps help his severely disabled young adult brother—referred to in the press as “D.J.”—she agreed to treat him. A 20-page report in The New York Times Magazine chronicles Stubblefield’s increasingly intimate relationship with her patient, eventually culminating in her announcement in 2011 to his family that she and D.J. were in love. She planned to leave her husband and two children for him. As his legal guardians, D.J.’s family told her she had overstepped her boundaries and requested she leave him alone. When she did not, they eventually filed charges against her. They testified that gradually Stubblefield’s claims to D.J.’s interests and values—typed out in their FC sessions—had begun to sound suspiciously like things she would want him to say. Stubblefield was sentenced last month to 40 years in prison for sexual assault.

Another proponent of FC, Martina Susanne Schweiger, was convicted last year in Queensland, Australia for performing sex acts on a 21-year-old patient whom she believed had reciprocated his love for her via FC.

I’ve written before about widespread prejudices against disabled people and how often it denies us our sexuality. But disabled people also suffer sexual abuse at rates far higher than the general population. Most are taken advantage of by their family members and/or caregivers. Stubblefield and the remaining proponents of FC argue that their critics are ableist for denying D.J.’s capacity for intellect and intimacy. The prosecution argued that Stubblefield is ableist for assuming she knows what D.J. wants.

The desire to be the next Miracle Worker is understandable and so often noble. Who doesn’t want to help those in need? And the lure of the controversial in the pursuit of justice is not uncommon. From Jodie Foster and Liam Neeson in Nell to Sean Penn and Michelle Pfeiffer in I Am Sam to Adam Sandler and Don Cheadle in Reign Over Me, Hollywood is rife with love stories and courtroom dramas about a misunderstood outcast who has finally found the one open-minded hero who understands him, believes in him and then must fight the cold-hearted, close-minded authorities from keeping them apart.

Yet red flags should go up whenever there is a risk that a self-appointed advocate is putting words in someone’s mouth, no matter which side that advocate thinks they are on. Particularly when their patient or client belongs to a highly marginalized minority.

News of this case has elicited many head-shaking responses along the lines of, “Well, they all sound nuts.” One of the jurors told NJ.com, “I was like…‘You’re going to leave your husband and your kids for someone like this?’” Disability rights advocates rightly bristle at the infantilizing of D.J.—not to mention the salacious headlines that seem obsessed with his personal hygiene—while ultimately declaring the case incredibly sad. Yet we rarely use “nuts” or “sad” to describe male teachers convicted of seducing students unable to give consent. We describe them as predators or abusers.

Abusers of course rarely think of themselves as such. Child molesters are often convinced their victims were flirting with them. Few would consider themselves sadistic. Most are simply skilled at rationalizing their behavior to themselves. But regardless of what they believe their intentions are, abusers by definition deny others power in pursuit of their own.

The Stubblefield case and the Schweiger case highlight a very uncomfortable fact for disabled people everywhere: that some of the caregivers and activists working and sometimes fighting on our behalf are doing it to feed a savior complex. And anyone with a savior complex is not truly listening to those they claim to be helping.

Addressing this problem becomes increasingly difficult when we consider how very young the concept of disability rights is over the course of human history. Living in any other era, most of us would have been abandoned by our families in asylums or elsewhere. Ancient Spartans advised throwing us off cliffs after birth. Some modern philosophers, such as Prof. Peter Singer, still advocate infanticide for some. Awareness of all this often makes us feel compelled to be eternally grateful to anyone who offers us any sort of support or help, regardless of whether or not it is truly helpful or respectful of our boundaries.

That we do not yet have the means to access D.J.’s thoughts and desires is indeed tragic. But opposition to FC does not mean we damn severely disabled people to the realm of hopelessness. On the contrary, accepting criticism of FC can only help to improve upon the ways in which researchers develop better practices and technologies. Relying on discredited methods would not have gotten Stephen Hawking his voice. Annie Sullivan prevailed with Helen Keller because she not only relied on rigorously tested methods but also shed her status as Keller’s sole communicator by enrolling her in an interdisciplinary program at the Perkins School. The ability to kill your darlings is an ingredient of innovation.

And any true investment in disabled people and the methods that best assist them must be accompanied by the credo activists began using around the time D.J. was born: Nothing about us without us.

 

 

Cultural Appropriation vs. Cultural Exchange

25 Oct

(Via)

From the Archives

 

As Halloween approaches along with all the stomach-turning caricatures of minorities and foreigners, I find myself repeating the same question over and over: When is it okay to wear or adopt something from a culture you don’t belong to?

Obviously, the most offensive appropriations rely on inane stereotypes most people I know would never go near. But this doesn’t mean that globe-trotting, multicultural enthusiasts—like myself—can do no wrong.  Since the 1960s, upper/middle class whites dabbling in other cultures has been celebrated under the banner of “Diversity!”  But from the point of view of certain cultures, Nigerian writer Jarune Uwujaren argues, it’s often just another chapter in the long tradition of Westerners “pressing their own culture onto others and taking what they want in return.”  American Indians do not appreciate headdresses used as fashion statements.  Hindus do not applaud non-Hindus flaunting bindis.  And Mexicans don’t enjoy seeing Day of the Dead re-appropriated as just another Halloween costume. 

Yet the Mexican Día de los Muertos is the result of Catholics adopting what was originally a pre-Columbian tradition.  Modern German children meanwhile have taken to celebrating Halloween, much to their parents’ chagrin.  There isn’t a holiday on earth that hasn’t been adapted from something else, leading atheist comedian Mitch Benn to observe, “If only practicing Christians can celebrate Christmas, then only Vikings can say, ‘Thursday.’ ” 

Indeed, intercultural contact always leads to intercultural mixing. Nowadays brides in China often wear two wedding dresses on their big day: a traditional Chinese red dress and a traditional Western white gown.  When a friend from Chengdu married her German husband in Berlin, she turned this trend on its head, wearing a Western designer dress that was red and then a cheongsam that was white.  Borders move and cultures blend constantly throughout history, often blurring the line between cultural appropriation and cultural exchange.

For this reason, it is important to remember that absorbing the fashions and customs of another culture is not always offensive.  But it is just as important to remember that it is not always open-minded, either.  After all, colonial history is rife with Westerners who filled their homes with foreign gear and lectured others about the noble savage.  Among the most ardent fans of Tibetan Buddhism, American Indian animism, and Norse mythology were the Nazis.  

We all love to show off what we’ve learned and delving into another culture can be enriching. But minorities tend not to like it when an outsider appoints herself an expert and lectures more than she listens.  Or thinks that listening to minorities is a heroic act, rather than common courtesy.  Visiting another country feels special when we’re the first of our friends and family to go, but there is no guarantee we’ll truly be acquainted with the culture.  Thanks to language barriers and the insular nature of expat bubbles and tourist tracks, it is fairly easy to study or even live in another culture for several years without getting to know a single person from that culture.  (Waiters and receptionists don’t count.)  

Whether venturing to the other side of the world or the other side of the tracks, it is always much easier to buy something, taste something, or get a bit of history from a book than to talk to someone from another culture.  Because books and merchandise can’t talk back.  They won’t call us out if we make false assumptions.  If we do actually strike up a conversation with someone from another ethnic group, whether Liverpudlian or Laotian, the temptation to flaunt the experience like a feat of greatness can be overwhelming. Jarune Uwujaren wrote about this pervasive temptation last month:

I remember that at my sister’s wedding, the groom – who happened to be white – changed midway through the ceremony along with my sister into modern, but fairly traditional, Nigerian clothes.

Even though some family members found it amusing, there was never any undertone of the clothes being treated as a costume or “experience” for a white person to enjoy for a little bit and discard later. He was invited – both as a new family member and a guest – to engage our culture in this way.

If he had been obnoxious about it – treated it as exotic or weird or pretended he now understood what it means to be Nigerian and refused to wear Western clothes ever again – the experience would have been more appropriative.

But instead, he wore them from a place of respect.

Appreciating the beauty in other cultures is always preferable to xenophobia.  Enjoying a trip abroad that happened to involve minimal interaction with the locals is perfectly fine.  But drawing attention to oneself for reveling in the mysteriousness of a culture is to revel in its supposed Otherness.  Whenever an entire culture is reduced to its exoticism, it becomes nothing more than an accessory or a toy – not a sign of cultural understanding.  

And while adopting a sacred custom “just because it looks cool” can be inconsiderate, imbuing our reasons for adopting a trinket with too much meaning can also make a native roll their eyes.  It’s one thing to buy a handbag on a trip to Tokyo simply because it’s beautiful.  A Japanese woman is buying it simply because it’s beautiful, after all.  But it’s another thing to flaunt it like a badge of enlightenment. 

The blog Hanzi Smatter documents and explains the snafus and utter nonsense that so often result when Westerners get tattoos of Chinese characters copied off the Internet.  Such incidents demonstrate that vanity is often mistaken for art.  We’re all a little vain, yet the difference between art and vanity is crucial because vanity is an indulgence, not a challenge or an attempt to communicate.  When Dita von Teese donned yellowface for a London performance titled “Opium Den,” fellow burlesque artist Shanghai Pearl wrote:

I am not saying artists should not tackle controversial or challenging subjects. However, if we choose to take on challenging material, we should be prepared to have challenging conversations. I absolutely believe that art will not suffer from sensitivity. Sensitivity should make us work harder, research more, and think more. Art can only benefit from that.

Indeed, nothing suffers from genuine sensitivity.  The lesson from colonialism is not to stop exploring the world and reading about it, but to always bear in mind that there can be no cultural understanding without dialogue.  When deciding whether to adopt a tradition or style from another culture, we should consider what several people from that culture have to say about it.  Because there are no cultures without people.

 

 

Originally posted November 3, 2013

Content Warnings and Microaggressions

20 Sep

Grunge Warning Sign - Do Not Read This Sign

(Image by Nicolas Raymond used under CC license via)

 

There’s a heated debate going over at The Atlantic over trigger warnings and microaggressions. For those less familiar with online minority rights debates, trigger warnings originated as labels for video or texts depicting graphic violence, often sexual, that could be triggering for survivors of assault suffering from PTSD. They have since evolved into “content warnings,” used to label any video or text containing arguments, comments, humor or images that marginalize minorities. I most recently ran into one preceding a beer ad in which two brewers tried to joke about never wanting to have to do anything so humiliating as dressing in drag in the red-light district in order to earn money.

Jonathan Haidt and Greg Lukianoff have argued that content warnings have led to “The Coddling of the American Mind,” a culture of silencing, wherein too many are afraid to initiate dialogue on these issues, lest they offend. They criticize restrictive speech codes and trigger warnings, and suggest universities offer students free training in cognitive behavioral therapy in order to “tone down the perpetual state of outrage that seems to engulf some colleges these days, allowing students’ minds to open more widely to new ideas and new people.”

“Microaggressions” is a term invented in 1970 by Harvard professor Charles M. Pierce to refer to comments or actions that are usually not intended as aggressive or demeaning but nevertheless do contribute to the marginalizing of minorities. Examples would be certain physicians being addressed as “Nurse” at the workplace. Or nurses, secretaries, cashiers, and storage room workers constantly hearing the widespread Western belief that low-skilled jobs deserve a low degree of respect. Or men still being expected to prove their worth through their career and never their emotional fulfillment. Or lesbians being asked if they’ve had “real sex.” Or anyone hearing from magazines, sitcoms or even loved ones that body types like theirs are something to avoid ending up with or hooking up with.

Microaggressions are the essence of insensitivity and they highlight the widespread nature of many prejudices about minorities. I analyze them all the time on this blog, without labeling them as such. Finding blogs that feature them in list-form can be done with little effort.

Citing a sociological study by professors Bradley Campbell and Jason Manning, Connor Friedersdorf has argued that calling out microaggressions on social media sites has led to a culture of victimhood, wherein the emotions of the offended always matter more than the perpetrator’s intentions. Victimhood culture is “characterized by concern with status and sensitivity to slight combined with a heavy reliance on third parties. People are intolerant of insults, even if unintentional, and react by bringing them to the attention of authorities or to the public at large.”

Cue the overemotion. Simba Runyowa rightly rebuts that many of Friedersdorf’s examples of hypersensitivity are cherrypicked, but then goes on to deny that anyone would ever want to be seen as a victim. (Not only do most petitioning groups—whether the majority or the minority—claim to be the victim of the other side’s moral failings and undeserved power, but it appears he has never tried to explain what it’s like to have a rare condition, only to be interrupted by the insistence, “I think I have that, too!”) On the other side, Haidt, Lukianoff and Friedersdorf have attracted plenty of support from those who are only too happy to believe that college campuses and the blogosphere today are ruled by the PC police, rendering such places far worse than Stalinist Russia.

I rarely issue content warnings on videos or quotations or any examples of bigotry I analyze on this blog. My primary reason is that a majority of the content we consume every day is arguably misogynistic or heteronormative or ableist or racist or classist or lookist. This does not at all mean that we should not address those problems, but demanding “warnings” on whatever has marginalized me leaves me open to criticism for not doing the same for all the other injustices I may not see.  As both a Beatles fan and a social justice blogger, I will always prefer to read or hear a comprehensive critique of John Lennon’s ableism than to see warnings on his biographies.

And I don’t label microaggressions as such because I agree with Friedersdorf that the word seems at odds with its definition. Insensitivity can be very hurtful. It can contribute to feelings of alienation by functioning as a reminder of how millions of people might think of you. But it is not aggressive. Highlighting, questioning and debating ubiquitous prejudices, stereotypes and traditions is crucial to human progress. Mistaking ignorance for hostility, however, is an obstacle to it.

Would it be accurate and productive to post something like this?

Microaggression: Having to hear yet another parent talk about how thrilled they are to have been able to give birth “naturally.”

(Avoiding C-section is never an option for women with achondroplasia like me.)  And would it be accurate and productive to something like post this?

Microaggression: Having to hear yet another childfree blogger brag about how great it is to have the time and energy to do things I’ll never be able to do like hiking or biking, let alone if I have kids.

Would it be more practical to tweet such complaints rather than pen an extensive article about the intricacies of the problem because few have time to read the particulars of considering parenthood with achondroplasia? Would posting them on a site featuring microaggressions serve as a much-needed wake-up call, convincing the perpetrators to see the issue from my perspective, or would it put them on the defensive? Would it spark dialogue or shut it down? Are the comments that marginalize my experience veritably aggressive? Feel free to share your thoughts in the comments.

But whether we think people on either side of the majority vs. minority debates are too sensitive or insensitive, we should be aiming for dialogue over exclamation points.

 

 

We Gotta Watch Our Language When It Comes to End of Life Debates

13 Sep

Jerzy body

(Image by Ekaterina used under CC license via)

 

On Friday the British Parliament resoundingly struck down a bill that would guarantee its citizens the right to physician-assisted death. Yesterday California’s legislature voted to make it the sixth state in the U.S. to legalize it.

Robust, nuanced arguments have been made for and against physician-assisted death for terminally ill patients, and none of these arguments could be successfully summarized within a single article. This is why a conclusive stance on the issue will never appear on this blog. It is nothing but moving to hear the deeply emotional pleas from those in the right-to-die movement who have thought long and hard about the prospect of death, who feel empowered by having some choice when facing down a daunting fate, who don’t want to find out which of their loved ones may turn out to be unskilled at care-giving. And it is equally moving to hear the experiences of those working in hospice and palliative care who face the approach of death every day with the determination to make it as minimally painful and emotionally validating as possible for all involved.

However, despite the emotional validity of both sides, there are tactics the right-to-die movement should avoid if it does not wish to make our culture more ableist than it already is. Openness about end of life decisions can shed light on a subject previously cloistered away, but the more the right-to-die movement celebrates the idea of ending someone’s life before it transforms into a certain condition, the less willing the public may be to engage with and invest in those who live in that condition.

Which is why no one should call physician-assisted death “Death with Dignity,” as lawmakers in Washington, Oregon, and New York have done. The implication that anyone who opts out of assisted death might live an undignified life is reckless and arrogant. A patient declaring the prospect of invasive life-saving interventions “too much” is fair. A writer declaring the quality of life of those who opt for them “pathetic” is ostracizing. It insults not only those enduring late-life debilitation, but the everyday conditions of many, many disabled people of all ages around the world.

Even today, when so many movements push to integrate disabled people into the mainstream, the average person is generally isolated from the reality of severe deformity, high dependence, and chronic pain. This isolation feeds fear and is therein self-perpetuating. As opponents have pointed out, many right-to-die arguments quickly snowball, equating terminal illness with chronic illness and disability, and portraying all three as a fate worse than death. Hence the name of the New York-based disability rights group Not Dead Yet.

Vermont’s recent law, the Patient Choice and Control Act, bears a far less polemic name than the others currently on the books. That’s a start. Experts are divided as to whether the current openness about end of life decisions in the U.S. has led to more terminally ill Americans considering and opting for hospice and palliative care. Regardless, both sides should be encouraging well-informed discussions that honor a patient’s right to voice his beliefs based on personal experience, and a disabled person’s right to not be further marginalized by a culture that has historically feared her existence.

 

*Note: I use “physician-assisted death” and other terms in deference to World Suicide Prevention Day this past Thursday and the media guidelines from the Center for Disease Control, which discourage use of the word “suicide” in headlines to avoid contagion.

 

What Do You Think of When You See the Word “Healthy”?

6 Sep

Up close Star makeup mac, urban decay(Image by Courtney Rhodes used under CC 2.0 via)
 
In late 2013, journalist Katie Waldman examined the juicing trend, which was cropping up in the corners of Western society where there is a heavy focus on modern notions of “natural and organic” (think anywhere from Berlin’s Prenzlauer Berg to Burlington, Vermont and Berkeley, California) as well as in those where people competitively strive to follow the latest fashions in health and beauty (think the high-earning sectors of London, Manhattan or Los Angeles). Lifestyle writers have declared two years later that juicing has staying power, despite Waldman’s disturbing findings. Along with little to no evidence that cleansing the body with juice can be physically beneficial, she revealed that the language of most detox diets echoes the language used by those struggling with disordered eating – i.e., the idea that most of what the masses eat is on par with poison and you’re a bad person if you don’t purge it. She writes:

After days of googling, I still have no idea WTF a toxin is… Cleansing acolytes use the word toxin loosely, as a metaphor for our lapsed lifestyles…. The problem with this way of thinking is that food and weight are not matters of morality. Thin is not “good,” carbs are not “bad,” and in a world of actual pressing political and social ills, your dinner plate should not be the ground zero of your ethical renewal.

I’m neither a supporter nor an opponent of juicing in particular. Anyone should drink whatever they want to drink. But Waldman made a fantastic point about the way the upper and middle classes in the West so often believe one’s health to be a sign of one’s morality.

This idea is hardly new. The eugenics craze of the 19th and 20th centuries—that culminated with the Nazis exterminating “degenerates”—involved Fitter Families contests held at county fairs wherein judges handed out trophies to those deemed to have the best heritage, skin color, and tooth measurements. Professor Alan Levinovitz argues in Religion Dispatches that these attitudes have survived on into the present, altered only ever so slightly: “The sad thing is, it’s really easy to judge people on the basis of what they look like. We have this problem with race. In the same way, it’s really easy to look at someone who’s obese and say, ‘Oh look at that person, they’re not living as good a life as I am. They’re not as good on the inside because I can tell their outside isn’t good either.’ ”

Do we as a culture believe that being “healthy” is about appearance? Dieting often dictates that it’s about behaviors measurable through appearance. Psychologists agree to the extent that their notions of “healthy” are about behavior, but they also frequently intersect with notions of being “good.” But is being “healthy” about being brave, honest, generous and humble? Physicians would generally argue it’s about staving off death. Right-to-die advocates would argue it’s about quality of life over longevity. Is being healthy a matter of what scientists decide? Ed Cara found earlier this year that weight loss does not lead to happiness. Is happiness a measure of being healthy? Or are you only healthy if you suffer for it? Concepts of “healthy” vary vastly from person to person, and across cultures. Is that healthy?

In The Princess Bride—probably the Internet’s second-most quoted source after Wikipedia—the hero cautions, “Life is pain. Anyone who says differently is selling something.”

Yet the villain says, “Get some rest. If you haven’t got your health, you haven’t got anything.”

Whether you agree with any or none of the above, leave me your thoughts on the meaning of “healthy” either in the comments or via an e-mail to paintingonscars[at]gmail.com

 

 

Happy Birthday, ADA!

26 Jul

 

This week marks the 25-year anniversary of the passing of the Americans with Disabilities Act. As others have noted, the law was ground-breaking not only because of its international ripple effect, but because it recognized disability not as an issue of health, but of human rights.

Author of the bill, Robert L. Burgdorf, Jr. writes in The Washington Post why this was so necessary:

People with disabilities were routinely denied rights that most members of our society take for granted, including the right to vote (sometimes by state law, other times by inaccessible polling places), to obtain a driver’s license, to enter the courts and to hold public office. Many states had laws prohibiting marriage by, and permitting or requiring involuntary sterilization of, persons with various mental or physical conditions, particularly intellectual disability, mental health conditions and epilepsy. A number of states restricted or denied the right of people with mental disabilities to enter into contracts. Several U.S. cities, including Chicago, Columbus and Omaha, had what became known as “ugly laws” that banned from streets and public places people whose physical condition or appearance rendered them unpleasant for other people to see. These laws were actually enforced as recently as 1974, when a police officer arrested a man for violating Omaha’s ordinance.

In some instances, discrimination threatened the very lives of individuals with disabilities: Lifesaving medical treatments that would routinely have been made available to other patients were denied to patients with disabilities; in 1974, the New York Times cited an estimate that unnecessary deaths of babies with disabilities in the U.S. resulting from withholding of medical treatment numbered in the thousands each year.

Things have improved substantially, which is cause for celebration. But not complacency. Which is why NPR’s article “Why Disability and Poverty Still Go Hand-In-Hand” is well worth your time, as is the above TED Talk by the late, great Stella Young, whose unexpected death last winter was a tremendous loss to the disability rights movement and to anyone who enjoys a good dose of sarcasm with their social critique.

 

 

Difference Diaries Wants to Hear from You

19 Jul

Copyright Difference Diaries

 

I have recently become the Director of Educational and Multimedia Outreach at the Difference Diaries, and today marks the launch of the Difference Diaries Blog. We want submissions and we want them now.

The Need. This week Freeburg High School in Illinois jubilantly voted down a petition by Little People of America to retire their school mascot, the Freeburg Midgets.

Such incidents are hardly isolated. Dwarfs rarely make the news, and when we do, we often wish we didn’t. Two summers ago Slate magazine, one of my favorite socio-political periodicals geared at young adults, kicked off a blog about Florida with an opening article called, “True Facts About the Weirdest, Wildest, Most Fascinating State.” Among the facts that apparently render the Sunshine State weird are the python-fighting alligators and “a town founded by a troupe of Russian circus midgets whose bus broke down.” On the day of its release, Slate ran the article as its headline and emblazoned “A Town Founded By Russian Circus Midgets” across its front page as a teaser.

Face-palm.

Here’s the thing about dealing with all this. You get used to it, but not forever and always. Sometimes it rolls off your back, sometimes it hits a nerve. This time, seeing a magazine as progressive as Slate brandish RUSSIAN CIRCUS MIDGETS on its front page while leaving disability rights out of its social justice discussion brought me right back to college, where friends of friends called me “Dwarf Emily” behind my back and someone else defended them to my face. Where classmates cackled about the film Even Dwarfs Started Off Small—“because it’s just so awesome to see the midgets going all ape-shit!”—but declined my offer to screen the documentary Dwarfs: Not A Fairy Tale. Where a professor was utterly outraged that her students didn’t seem to care about immigration rights or trans rights, but she never once mentioned disability rights. Where an acquaintance asked to borrow my copy of The Curious Lives of Human Cadavers, but awkwardly turned down my offer to lend her Surgically Shaping Children. Where roommates argued vociferously that they would rather be euthanized than lose the ability to walk. Where jokes about dwarf-tossing were printed in the student newspaper.

I won’t go into certain crude comments that involved me personally, but I will say that when a friend recently, carefully tried to tell me about how shocked he was to find a certain video of dwarfs in a grocery store, I cut him off and said, “Lemme guess, it was a dwarf woman porn video? That’s one of the top search terms that bring people to my blog.”

This is not to ignore all those I’ve met who, despite their lack of experience with disability, ask carefully constructed questions and consistently make me feel not like a curious object but like a friend who is free to speak her mind about any part of her life experience. And some young adults are doing awesome work for disability rights and awareness. But when a journalist and mother of a disabled twentysomething recently said to me, “No one wants to talk about disability rights – it’s not seen as sexy enough,” I knew exactly what she was talking about.

Maybe this is just a matter of my growing up, leaving the cocoon of childhood and finding out how uncaring the world can sometimes be. But ableism among young adults in the form of silence and/or sick fascination is a lot more prevalent than many would like to admit. And why does it have to be? Are physical differences truly not sexy enough? Is it because we associate disabilities, diseases and related issues—like caregiving—with older people and with dependence? Dependence is usually the last thing to be considered cool. But does it have to be?

The Means. As a non-profit organization, Difference Diaries aims to ignite ongoing conversation that will contribute to better lives for those living with defining difference as well as friends, families, and perfect strangers who “just never thought about it.” The young adults who share their stories offer real insights and an opportunity for viewers and readers to know a little more about “what it’s like.”

We focus on conditions as diverse as the individuals living with them including: cancer, hemophilia, dwarfism, sickle-cell anemia, albinism, facial deformity, blindness, HIV, amputee, hemangioma, vitiligo, diabetes, renal disease, Crohn’s disease, cystic fibrosis, cerebral palsy, OCD and more.

This is why we want to hear from you. We are seeking blog submissions about living with Difference as a young adult. Prospective bloggers should consider: What does Difference mean to you? What is your personal experience of being Different? What has to be explained most often at work, school, out in public? What would be the most helpful thing for people to know about your Difference? How would you like to see society improve in how it handles Difference?

Send us your submissions via e-mail to info[at]differencediaries.org