Tag Archives: Civil Rights

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.

 

 

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Simple Language & Democracy

22 Sep

My country of residence votes today in what my partner has called “possibly the most boring German election in recent memory.”  Sure the new Euro-skeptic party may be prove to be a rising star while the Pirate Party sinks (no pun intended), but with voter non-participation at an all-time high, conventional wisdom anticipates pretty much more of the same.  There is, however, one new feature of this campaign season distinguishing it from years past – all of the major parties offer translations of their platform and websites in Leichte Sprache

Leichte Sprache (“Simple Language”) is a variant of German developed by professionals who work closely with citizens with intellectual disabilities.  It avoids long sentences, abbreviations and acronyms, jargon, foreign words, and Roman numerals.  The text is often accompanied by images that convey meaning.  Commonly used words supplant those used to signify sophistication; e.g. “allow” is preferred to “authorize.”  Instead of “public transportation,” Leichte Sprache translators use “buses and trains.”  Repeating the same word (“You should take these pills because these pills are the best”) is preferable to using synonyms (“You should take these pills because this medicine is the best”).  Adverbs signifying time (“Maybe tomorrow it will rain”) are used in lieu of verb tenses (“Tomorrow it could rain”), because complex verb tenses should be avoided altogether.  Figurative descriptions (“Rabeneltern” = “raven parents”) are replaced with literal ones (“bad parents”).  The German custom of smashing compound words together without dashes or spaces (as in “Eheunbedenklichkeitsbescheinigung”) is also discouraged.     

The closest English equivalent to Leichte Sprache is Simple English, which thusfar has only really gained traction on Wikipedia.  While the Leichte Sprache Netzwerk focuses on the needs of citizens with intellectual disabilities, most advocates of Simple English in the U.S. list immigrants and other non-native English speakers as their primary target group.  This is also a revolutionary idea.  If you think the contractual agreement at iTunes is hard to wade through, imagine trying to read it in whatever foreign language you studied in high school. 

Indeed, most expats I know who have only a basic knowledge of German tend to simply hand their contracts, tax forms, and newspapers over to a German friend for an explanation.  For such people, Leichte Sprache versions would be a much more surmountable hurdle. 

And anyone about to scoff at the idea of lazy immigrants trying to take the easy way out should try the following exercise.  If you’ve studied little to no German, see how long it takes you to understand the Leichte Sprache version of this text:
 

Leichte Sprache

 

Need a dictionary?  Now compare reading that to reading the original version:

 

Schwere Sprache

 

Which one would encourage you to at least give it a try?  Naturally plenty of immigrants and expats strive and pride themselves on reaching the level of language used in the second text.  But for those scientists and doctors and painters and cooks and economists who admit that foreign languages were never their strong point, something is far better than nothing.

Some have voiced concerns that this is a slippery slope toward an anti-intellectual populace; that all the poetry, intricacy, and subtlety of refined language will be thrown out with the bathwater if Leichte Sprache has its way.  As a writer, I’ll be the first one at the barricades whenever anyone proposes that all public discourse accommodate the lowest common denominator.  I’m the type to shudder at someone saying, “We’ve come 360 degrees” when they mean 180 degrees; at reporters saying “he’s a graceful person” when they mean “gracious”; at friends mistaking “literally” for “extremely.”  Because when our language becomes shallow and meaningless, our ideas become shallow and meaningless. 

But Leichte Sprache is no cause for worry because it is intended as an option, like Braille, not an imposed standard, like the Newspeak in Ninety-Eighty-Four.  Far from stigmatizing intellectuals, it is a means of empowering groups of people that are all too often excluded from the discussion.  And, perhaps most importantly, Leichte Sprache is a conscientious effort, a carefully constructed means of expression with many, many rules, whereas any shift toward linguistic parochialism among those of us without cognitive disabilities usually comes from an unwillingness to give much care or thought to what we say.

Indeed, it bears repeating that Leichte Sprache is not a matter of merely dumbing down the way we speak to certain people, with no concern for how patronizing we might sound.  For anyone who thinks people with intellectual disabilities don’t notice when we’re talking down to them, there’s this:

 

 

The role of Leichte Sprache in today’s election may not be big enough to produce any surprises, but its implementation does recognize the rights of several minorities to participate in the political process.  It also signifies Germany’s commitment to the U.N. Convention on the Rights of People with Disabilities. However, according to Leichte Sprache translator Andrea Tischner, the two parties currently in power are not doing all they could.  Chancellor Angela Merkel’s center-right Christian Democrats, and their Bavarian sister party the Christian Social Union, have failed to translate much of their platform into Leichte Sprache, while the libertarian Free Democrats use too many big words in their translations.  Interestingly, theirs has been the most diverse administration in the history of Germany—and possibly the world— with a female chancellor, a foreign-born vice-chancellor and an openly gay secretary of state.  But according to Tischner, the best translations are offered by three of the four major parties on the left: the Social Democrats, the Greens, and the Pirates.  She didn’t offer any assessment of how the anti-immigrant, Nazi-apologist Nationalists are handling things, but I think we can guess.

 

 

New Rights for Intersex Newborns in Germany

25 Aug

Germany has become the first country in Europe to allow parents to check one of three boxes for gender on their child’s birth certificate: “male,” “female,” or “blank.” The new option is intended to accommodate the parents of intersex newborns; i.e., those whose reproductive or sexual anatomy does not appear to fit the traditional definitions of male or female. The children will be allowed to choose “male” or “female” later in life, but they will not be required to. This will all go into effect November 1st.

While the law says nothing about gender ID in passports, equality activists are celebrating it as a tremendous step forward. According to Silvan Agius of the International Lesbian, Gay, Bisexual, Trans and Intersex Association, the European Union has been slow to act on issues of gender identity. “Germany’s move will put more pressure on Brussels,” Agius told Der Spiegel. “That can only be a good thing.”

However, not everyone in the intersex community is celebrating the idea of a third gender box. Creating a new category, they argue, is to give in to the idea of narrowly defined categories. Instead of turning the gender binary into a triad, why not loosen the definitions of “male” and “female” to include those with all sorts of bodies? Many people with intersex conditions have a perfect sense of belonging when it comes to gender – they only feel alienated when others insist they don’t belong.

And while they often cooperate politically, intersex people should never be confused with transgender, transsexual, or genderqueer people. The Intersex Society of North America states, “Most people with intersex conditions come to medical attention because doctors or parents notice something unusual about their bodies. In contrast, people who are transgender have an internal experience of gender identity that is different from most people.” The ISNA’s history of intersex offers much information about the long medical tradition, and resulting problems, of conflating and confusing the two.

Professor Alice Dreger explains that cases wherein intersex individuals also qualify as transgender because they elect to transition from the gender assigned to them at birth—this is essentially the plot of the 2002 Pulitzer Prize-winning novel Middlesex—are quite rare. Dreger notes, “Far more often, the concerns of intersex and transgender people represent opposite sides of the same coin: intersex people get surgeries they don’t want, and transgender people can’t get the surgeries they do want.” The surgeries many intersex people regret having undergone in childhood are primarily cosmetic, removing or adding tissue only for the sake of “normalizing” the appearance of their genitals, and at the expense of sensation and function.

Another all too common problem is the concealment of the patient’s intersex condition by her parents and doctors, leaving her unaware for as long as possible and discouraged from asking the questions she might begin to have about her anatomy. In her essay “Twisted Lies,” Sherri G. Morris writes that not finding out until college that you are without a uterus can be rather upsetting, to say the least.

As for the well-known term “hermaphrodite,” it is inaccurate at best and defamatory at worst. The word represents the idea of one person being anatomically both male and female, and this idea is a purely mythological one. Because it is physiologically impossible. As Dreger points out:

…the only way you could be born with “both sets of genitals” is if you had two bottoms. The clitoris and the penis are homologues—they are the same organ developmentally—so you get one or the other, or one in-between organ. Similarly, the labia majora and the scrotum are homologues—so you get either a set of labia majora, a scrotum, or something in between. But you can’t have all the female parts (clitoris, labia majora, etc.) and all the male parts (penis, scrotum, etc.) on one person…

What people mean when they say a person “was born with both sets of genitals” is that a child may be born with a phallus that looks a lot like a penis plus a vagina (the tubular organ that goes from the outside of the body towards the uterus, if there is a uterus). This can happen because of hormones, in conditions like congenital adrenal hyperplasia and partial androgen insensitivity syndrome. But to say that gives you “both sets of genitals” is to pretend that somehow all that matters to males is their penises and all that matters to females in their vaginas. In fact, many of us women also care about our clitorises. (For that matter, many men care about their scrotums.)

Unfortunately, sick fascination with the hermaphrodite is utterly pervasive today. Comedians of all stripes, from South Park to Flight of the Conchords, have yuk-yukked over the idea of a person with both sets of genitals being able to have intercourse on their own, while artists have done their fair share of poking at and playing with the myth. (See here for an intersex woman’s take on Middlesex.)

On this issue the ISNA is emphatic: “The terms [‘hermaphrodite’ and ‘hermaphroditism’] attract people with sexual fetishes and fantasies that, frankly, we as a patient advocacy organization are not interested in hearing from.” They therefore advocate expunging any terms related to “hermaphrodite” from all medical literature:

We think it is much better for everyone involved when specific condition names are used in medical research and practice… While some intersex people seek to reclaim the word “hermaphrodite” with pride to reference themselves (much like the words “dyke” and “queer” have been reclaimed by LBGT people), we’ve learned over the years it is best generally avoided, since the political subtlety is lost on a lot of people.

Meanwhile, in an Op-Ed piece appearing yesterday in Spiegel International, Agius argued, “…real progress for intersex people is not measured through the number of available labels but through an end to the human rights breaches currently being inflicted.”

Indeed, the new German law is just the tip of the iceberg. Considering that one in every 2,000 infants is born with an intersex condition, shame-induced secrecy continues to be an abysmal problem. The rights and concerns of those with intersex conditions receive far too little attention. (I was completely uninformed until I met Dreger ten years ago at the conference Surgically Shaping Children.) Whatever the legal specifics, Germany’s new law will hopefully promote awareness above all else, and in more ways than one.

 

 

 

Liberty and Justice For All

30 Jun

(Via)

 

The Defense of Marriage Act and Proposition 8 are dead. Less than nine years ago on Election Night 2004, when eleven states banned gay marriage in one fell swoop, I would never, ever have dared to think that change could come so rapidly. Of course, marriage equality does not yet exist in thirty-seven of the fifty United States, but with young people around the world overwhelmingly and increasingly showing their support, it is coming. Thank goodness, in the best sense of the word.

There are those—gay, straight, bi and queer—who are saying, “I can’t be happy about this after what happened to the Voting Rights Act this week.”

And, “I can’t be happy about this until full equality is granted to trans citizens.”

And, “I can’t be happy about this until the AIDS crisis gets more attention.”

And, “I can’t be happy about this until we realize that single people deserve federal benefits, too.”

And every one of these people has a valid point. It’s a common political strategy in such triumphant moments to grab the opportunity to shed light on other civil rights abuses while you have everyone’s attention. Drawing attention to other injustices—especially the attention of those whose privileges put them at risk for remaining oblivious to such issues—is crucial because no one is free when others are oppressed. This is why I am always willing to discuss the latter half of any of the above statements.

But I do take issue with the first half: the too-cynical-to-celebrate attitude that is begging to be called out for its hipster glass house. Because marriage equality is a victory for everyone.

Anyone familiar with the history of minority rights in the U.S. knows that granting civil rights for one group has had an undeniable domino effect on other groups. Not long after debates about slavery, segregation, and voting rights culminated with the nation’s belief that all men are indeed created equal, women asked, “Why just men?” And not long after so many women proved that straight relationships can be egalitarian, gay and lesbian citizens asked, “Why just straight ones?” And somewhere amid gays and lesbians proving that the way they were born hurts no one, trans people asked, “What about how we were born?”  And somewhere in between all the discussions about genitals and bodies and skin color and size, disabled people asked, “What about our bodies and brains?” Because no one is free when others are oppressed.

Likewise, when one kind of inhumane prejudice gets knocked down, all the others are under threat.

This is not to take attention away from the people most directly affected by this week’s momentous legal decision. Friends of mine in Massachusetts can suddenly enjoy concrete federal benefits now while my husband and I have always enjoyed these benefits simply because we’re in a straight relationship. I am so happy for them, and so sad one of my dearest friends never lived to see this day.

But the victory is truly for everyone – even those marriage equality opponents who fail to see how they will benefit from a society that is a little bit freer, a little less fearful, and lot less lop-sided. Because this is a victory for anyone who has been bullied for traits they never had any choice about. This is a victory for anyone with something that has made them stand out in their family. This is a victory for all the couples who have choked back tears when someone said that marriage is all about a man and a woman being able to procreate. This is a victory for all the parents who have tried to teach their children to never grow up thinking they are more important than anyone else.

Congratulations to all of you out there.

 

 

 

Fighting the Good Fight or Feeding The Ego?

19 Aug

Body Art Chameleon“I know so many men and boys and trans individuals who wear dresses for so many different reasons, and they do it a lot more than mainstream movies, TV, and advertising suggest.” 

I felt my fingers tremble just a tiny bit as I typed this sentence last week.  Not because of the subject matter.  Not because of the point I was trying to make.  Because of the “I.”  Was that word going to drive home my point, or derail it?

Studies show personally knowing someone who belongs to a minority group increases the likelihood that you will have empathy for that minority.  If you have a family member who is gay, you’re less likely to oppose marriage equality.  If you know someone with dwarfism well, you’re less likely to see their medical diagnosis whenever you look at them.  GLAAD emphasized the political potential for all this in a brilliant meme last fall.  Urging LGBT individuals to talk openly about their partners and love lives at the dinner table with the same frequency as their straight family members, they called it, “I’m Letting Aunt Betty Feel Awkward This Thanksgiving.” 

Truly caring for someone with a different perspective often—though, sadly, not always—inspires us to try to understand their perspective and this enhances our own.  Letting others know that They are not so different from Us because we know and care deeply about many of Them can effectively break down barriers.  And, when discussing social injustice, it’s always best to ask someone with personal experience, lest we unwittingly make erroneous assumptions.  But, of course, just having friends who belong to minority groups doesn’t solve everything. 

As I wrote about knowing men and trans people who wear dresses to elucidate that They are actually Us, I cringed at the idea of flaunting my loved ones’ Otherness for the purposes of my blog.  By inserting myself into the statement, there was a risk that some would think I was trying to prove my open-mindedness.  I’ve bragged like that in the past, especially when I was an egocentric teen.  (You know, back when you practiced writing your name over and over?)  And my own Otherness has been flaunted a few times by friends and acquaintances seeking attention for their open-mindedness.  It’s a serious problem in the social justice movements.  

In Black Like Me, the author tells the story of a New Yorker he encounters who has come to the South to “observe” the plight of the black citizens.  “You people are my brothers,” the New Yorker insists.  “It’s people like me that are your only hope.  How do you expect me to observe if you won’t talk to me?”  Although the man’s opposition to segregation was morally correct, his overt self-regard and patronizing disgust at his brothers’ “ingratitude” makes it one of the most cringe-inducing scenes in the book.

In Baratunde Thurston’s fantastic memoir, How To Be Black (just out this year), the author asks writers and activists about white people’s fear of being called racist.  damali ayo, the author of How To Rent A Negro and Obamistan! Land Without Racism, says it best:

It shows our values as a culture when somebody says, “I don’t want to be a called a racist.”  Really what they’re saying is, “I want you to like me.  I don’t want to not be liked.  I want to still be okay with you.”  They don’t mean, “What I really want is to know and understand experiences of people of color…”  That would be great.

And so, it just shows that, as I always have said, we are operating at this third-grade level of race relations.  And it’s that third-grader that goes, “Please like me, do please like me,” versus “Can I understand?”

We all want to be liked and we all want to do the right thing.  But the the third-grader mindset can’t help but focus more on the former.  It is evident in common phrases like:

“We were the only white people there!” 

 “I’ve always wanted a gay friend!” 

“I think I’m [bisexual/learning disabled], too, because I [kissed a girl once/have difficulty concentrating]!” 

“I’m not prejudiced!  I have so many [nonwhite/foreign/LGBT/disabled] friends!”

Of course, in certain contexts and worded differently, these statements would not be offensive.  What makes them offensive is the need to let others know all about us, the belief that our support for equality deserves praise, the patronizing (and unjust) view that minorities should be grateful for our lack of prejudice.  We can note that we were the only white people in a group in order to spark a dialogue about social segregation, or we can flaunt the experience like a medal from the Liberal Olympics.  We can worry that having a homogeneous circle of friends will limit our perspective, or we can believe that racking up as many minority friends as we can is proof of our expertise on all minority issues.  We can try to empathize with someone labeled “different” because of their sexuality or biology in order to remove stigmas and barriers, or we can try to seek the attention they are getting for ourselves.  We can respond to accusations that we have offended by trying to understand why someone would be hurt, or we can respond by listing our liberal credentials.

This depends primarily on the individual.  Someone who likes to brag about their open-mindedness usually brags about most things they do.  This personality trait seems to be particularly common among educated elites—parodied so well at Stuff White People Like—because elite education frequently fosters competitiveness.  (Taking the time to count your degrees, count the books you own, count the minority friends you have…)  Competitiveness is anathema to selflessness.   But while bragging about the number of books we own is silly because we’re obviously missing the point of reading, bragging about the number of minority friends we have is grave because we’re missing the point of human rights.

Do we donate to charity privately because it makes us feel better to spend the money on someone else?  Or do we hope that others will notice and admire our sacrifice?  Then again, drawing attention to the work we’re doing is usually important if we want to advertise the cause and urge others to join.  That’s where things get murky.

A while back, within a few months of each other, two friends stood up to ableism and told me about it after the fact.  A guyfriend came fuming to me about his teacher who had used the word “midget” and who had then insisted, despite my guyfriend’s protests, that it wasn’t offensive at all.  A girlfriend told me that a mutual acquaintance had said something crass about my dwarfism and that she had told him to back off repeatedly because she wouldn’t tolerate such bigotry in her presence.  The first friend focused his story on the offender’s behavior.  The second focused her story on her heroic defense.  People who want to understand the problem more than anything tend to focus their feelings on the injustice they encountered.  People who want to be liked more than anything tend to focus their feelings on their performance.

This shouldn’t ever deter anyone from working for equality and social justice, from celebrating diversity or from spreading awareness.  Open minds should always be highly valued.  But to paraphrase the recent words of the Crunk Feminist Collective, by not being racist—or sexist or homophobic or lookist or ableist or transphobic—we’re not doing anything special.  We’re doing what we’re supposed to do.