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The U.S. Supreme Court Just Knocked Down A Cornerstone of Human Rights to the Cheers of an Extremist Few

25 Jun

Hours before the German Bundestag removed a Nazi law restricting public information about abortion services, the U.S. Supreme Court struck down the constitutional right to medical freedom, opening the door for laws that seek to not only criminalize abortion but many forms of miscarriage treatment, contraception, IVF, and maternal behavior during pregnancy. The Court came to this decision amidst a historically low approval rating among U.S. voters of 25%. It is not a coincidence that the countries rated highest in the Democracy Index currently guarantee reproductive freedom to citizens.

Having made many, many life-altering medical and family-planning decisions, I despair when I see people on any side of this issue projecting their deeply emotional, personal experience onto someone else’s to further a political agenda. Any safe and fair society requires STRONG, CONTINUOUS, EASILY ACCESSIBLE support for people who are delighted about their pregnancy, people who want to end their pregnancy, people who don’t know how they feel about their pregnancy, people who placed their children for adoption, people who regret having placed their children for adoption, people who feel relieved about their abortion, people who regret their abortion, people who are childfree and happy, people who wish they’d had kids when they could, people who love their kids but need help, and people who hate parenting and really need help.

I don’t care if any of these scenarios is more likely than another. When it’s your life, your right to support should not be contingent upon how many other people feel the same way. That’s the basis of humans rights, of democracy. It is the only option for anyone who believes in harm reduction instead of moral superiority regarding family planning politics. Anything short of broad support for all the aformentioned people leads to miserable parents, miserable children, miserable communities, silence and secrecry and shame and abuse and misery everywhere.

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Do We Need Statues of Real People?

1 May

Happy May 1st! The idea of “the people” and “the public square” and “equality-means-everybody” has me thinking about statues. And about historical figures and artists and everyone whose work had an undeniable impact on the world and the problem of their having also done or said terrible things that contributed to the subjugation and/or suffering and/or marginalization of many people. And I wonder, do we need statues of real people? (Or faces on coins and bills?) Germany places its statues of undisputed criminals in museums. I’d be hard pressed to find any recent statues of real people around here.

Does any society need statues of real people? The human impulse to want to learn about – and usually like – someone whose work we like is so powerful, it’s surely impossible to eradicate from our systems. Fandom is here to stay. But books, articles, documentaries and museums exhibits can/should force us to learn about the person in context, learn about everything they did, whom they helped and whom they hurt. Statues simplify people, remove context, rinse them of responsibility for any harm they caused. In turning them into idols, we place them above others, which is the opposite of equality. Do we really need statues of real people in public? What will be lost if we ended the tradition?

Imaginary figures seem fine to me, whether unnamed as in the nice big lady above you can see in Oslo, or well-known fictional characters. I don’t think there is a problem with statues of the Greek gods. Everyone knows they were jerks.

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This Universal Pandemic Proves Our Diversity

19 Apr

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

 

Most of the world has been asked—if not ordered—to stay at home and only socialize online. Almost immediately the divisiveness inherent to social media was out in full-force. My friends and family have been venting almost since Day One about the posts and tactics they find most distasteful:

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

“There SO many high-horses out there right now – people trying to shame anyone who goes to a bakery or uses public transportation or orders online and therein endangers delivery workers.”

“Be grateful your friends at least are committed to social distancing right now! Half of mine are still convinced anyone who does so is a sissy.”

“I’m gonna unfriend the next person who lectures about how we should be avoiding chocolate or shampooing with strawberry jam because it’s good for your brain cells and therefore your immune system. It’s hard enough to get people to listen to the clear-cut facts. We don’t need the airwaves clogged with theories!”

“I can’t take the memes that tell everyone to stop whining. ‘All we’re being asked to do is stay on the couch and watch Netflix’?! Complaining is helpful in a crisis!”

Indeed, orders to immediately have perspective and shut up sound crotchety at best and ice-cold in light of the escalation in unemployment, mental illness, domestic violence, and child abuse under lockdown. We absolutely owe it to seniors, disabled and chronically ill people, and every essential worker to do what we can to slow the spread of the virus and lessen the danger they face. But that doesn’t mean shrugging off even smaller problems like loneliness, cabin fever, or the obliteration of the work-life balance. A single mother of toddlers who works as a journalist said every minute of her day is a choice between neglecting her job or her children, and leaves her feeling every night that she failed at both. The U.K. reports an increase in custody battles over children since the lockdown. Less acrimonious legal procedures like immigration and adoption procedures are now in limbo.

Not since the last pandemic a century ago has everyone on every continent faced the same exact enemy. Earthquakes, bombings, hurricanes, and even World II occurred in specific locations. Some if not most people on earth lived far away from those catastrophes and only knew them as news reports. Right now I can ask my friends and family in every time zone the same question: How is it for you? I live in Germany, which so far has one of the lowest death rates of any of the infected countries and, at the time of this writing, has more residents recovering from the virus than infected by it. While that is some cause for hope, the diversity in international infection and death rates pretty much ensures that non-essential international flights are a long way off. For so many parents like me, seeing our kids hug their grandparents is almost certain to be the very last thing governments will allow. I know I am still partly in denial over that.

Social media is a hard substitute to accept. Unlike speaking to friends in very small groups or one-on-one, social media (like mass-emails) excludes the extremely helpful ways in which we each alter our speech and tone according to whom we’re addressing. And so we speak to everyone at once and too quickly alienate those whose experience we forget. Posts about what to read or watch now that we all have so much time at home alienate those whose workload has tripled. Or evaporated. Posts that overemphasize the dangers of the virus in order to try to frighten people into staying home make those with at-risk loved ones burst into tears. Posts trying to point the finger at wet markets or the Chinese government (or U.S. Democrats or cell phone towers) prove that the blame game is always poisonous and always fraught with fallacies. Scientists and journalists from Nate Silver to Bill Bryson had long been warning that humanity was due for a pandemic. The differences in how states have handled it proves that our political choices do ultimately determine how many will be in danger.

We all face the same virus and what it means for each of us is as diverse as humanity itself. Recognizing the wide range of experiences is necessary. It will degrade us if it is done with jealousy instead of empathy. Solidarity means no one is more expendable than I am and bravery in the face of a worldwide threat means overcoming the urge to think only of my experience.

Escaping social media and moving to the phone, I’ve found friends and family to be overly gracious. Jeez, I thought I was inconvenienced, but it’s nothing compared to what you’re going through! they say so often to each other. We vent and then edit ourselves, counting our blessings and privileges without humblebragging, and express sympathy for each other’s individual plights. For all the vile xenophobia that is but a Google search away, online organizing shows that many are ready and willing to aid people in poverty, African-Americans, refugees, homeless citizens, and prisoners, all of whom are a greater risk. The applause from balconies for health care professionals across Europe and North America has been heartening, and in many places it has been followed by concrete efforts for increased funding.

And who keeps even more people alive in a hospital than the doctors? The cleaning staff. This crisis has shown the need for paying our workers based on the necessity of their labor, not the skill-level. It has shown that childcare is absolutely and always a job in itself, worth as much as any other. It has shown how difficult it is to communicate simple but scary facts to over 7 and a half billion people. And it has shown we do have some choices about our responses and we can let the better angels of our nature prevail. When this is over, history will tell whether or not we did.

 

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

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

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

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

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

 

 

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Mother’s Day & All It Touches

12 May

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

From the Archives, updated

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

And to those of you who have lost your mothers,

And to those of you who have lost a child,

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

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

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

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

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

In gratitude and with the deepest respect.

 

 

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

28 Apr

 

Ending the blog’s six-month hiatus with Part 2 of Germany’s Deutschland3000 program on disability featuring yours truly. Like, share, spread the word. (Once again, English subtitles are available with Auto-Translate via the tools icon.)

I look forward to providing you with more content about differences, delusions of normalcy, and what we mean when we say democracy each week again from now on. And I thank you all sincerely for reading Painting On Scars these seven years now.

 

 

 

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Enough with the Myths about Disability

27 Oct

 

Here I am discussing some of the most common misconceptions about people with disabilities on Germany’s Deutschland3000 program. Like, share, spread the word. (English subtitles available with Auto-Translate via the tools icon.)

 

 

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Banned Books Week Should Fight Censorship & Simplistic Thinking

23 Sep

 

Today the American Library Association kicks of its annual Banned Books Week to spread awareness of the dangers of censorship. Each year the ALA releases a list of the top ten books that were most often requested to be removed from U.S. libraries—usually school libraries—by parents and political activists alike. In 2017, the majority of the most challenged books were stories about LGBT acceptance. However, as with nearly every year, a few titles on the list were targeted for use of racial slurs.

I love Banned Books Week if anything because discussing these issues is crucial. I do believe every public library should be free to contain every book humanity has ever brought forth. But, as examined before, those opposed to censorship should not assume the solutions are simple like censors do.

When it comes to kids, you’d have to look hard to find someone who believes that no one should ever take a child’s age and developmental level into account when selecting stories for them. I save many of my favorite books for the children in my life until they are old enough to appreciate them fully because infants, toddlers, and pre-schoolers can get scared or—more likely—bored if they can’t follow along. Most children in primary school do not understand sarcasm, which is why Stephen Colbert did not let his kids watch The Colbert Report.

Children are a diverse group, so of course many kids will be ready earlier than others to handle mature topics. But just as I believe it takes a mature mind to understand the  BDSM portrayed in Fifty Shades of Grey, I believe there is a world of a difference between an older child who is ready to learn about the nuances of racism and a young child who will likely repeat the N-word without giving it much thought, and think it’s funny if it elicits shocked expressions among grown-ups.

With all this in mind, Banned Books Week should be about debate, endless and free.

 

 

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Aziz Ansari, #MeToo and the Problem of Empathy

21 Jan

(Public Domain image used under CC0 1.0 via)

 

Over this past week, articles about the allegations against Aziz Ansari by a woman known by the pseudonym “Grace” were the most read articles at The Atlantic, Slate, Salon, The New York Times, The Guardian, The Washington Post, New York magazine, and pretty much every feminist website from Jezebel to Bustle. Everyone from Whoopi Goldberg to Samantha Bee to Dr. James Hamblin participated in the discussion at some level, myself included.

Do you want to know what I think? I think feminist Jill Filipovic has summed it up best. But I also think it’s far more important to note that not one of these sites picked up National Public Radio’s week-long report on the epidemic of rape and sexual assault against developmentally disabled people, who are seven times more likely to be sexually abused than the general population, according to the U.S. Department of Justice. NPR kicked off the story by calling it “The Sexual Assault Epidemic No One Talks About.” Mainstream feminism proceeded to not talk about it, proving the point fantastically well.

Why has this excellent, in-depth report gone unnoticed while Ansari and Grace could only have garnered more attention if they were running against each other for president? You don’t have to be The Huffington Post to know that readers will pretty much always prefer a story involving a celebrity than a story about ordinary people, social groups and statistics. I knew too well that just putting Ansari’s name in the title of this article would up its chances of survival. Barbara Ehrenreich has been complaining since day two of the #MeToo movement that “there are far too many think pieces about high-level actresses and far too few about the waitress at your local diner.” Readers are also more likely to click on stories involving young adults and/or sex than stories about older people and/or anything bereft of sex. Ginia Bellafante complained this weekend about the endless analyses of Grace’s night with Ansari in contrast to the relative silence about the life and legacy of Presidential Medal of Freedom winner Dr. Mathilde Krim.

Anna North, who covers gender issues at Vox, argued for the relevance of the Ansari story, saying, “I mean, honestly, my first reaction was just sort of recognition. This is a situation that I’ve heard from my friends. This is – the behavior she describes through Ansari is behavior that I’ve heard men confess to in their own lives. So I thought, like, yep, this feels real familiar.” While this does validate discussions about dates like the one Grace had, it also explains the sad truth as to why it managed to bury NPR’s story about a sexual abuse epidemic. It is safe to say the majority of young adults writing and reading stories about social progress do not react to stories about developmentally disabled people with a “Yep, this feels real familiar.” Nor do they encourage each other to.

In my experience, most young adult feminists and social justice activists limit their discussions about developmental disability to stories about volunteering in a special ed class and debates about the word “retarded.” The issue of whether or not to screen for Down Syndrome in utero is an increasingly common discussion among pregnant women and their partners, but the opinions of people with Down Syndrome rarely take center stage in that debate.

Disinterest is not the only factor to blame. Accessibility, the issue most likely to leave disabled people marginalized in mainstream society, is what also leaves them isolated from the places where most social justice activists convene. People with developmental disabilities are the minority least likely to live on college campuses, and they are more likely to be socially integrated in small towns than in metropolitan areas. Few feminist and progressive publications offer versions of their articles in Simple Language. 

But while such barriers help us understand the marginalization of developmentally disabled people, there is little reason why we should accept them. Human rights means everybody. Feminism rightly declares the personal is the political, but this serves as a wall instead of a bridge when the personal experiences shared by the most people dominate the discussion at the expense of others. Empathy is rightly considered the best facilitator of communication in the fight for minority rights, but minorities will suffer when empathy is expected to come instantly, without the effort of learning about experiences other than our own.

There’s no reason why the #MeToo movement can’t talk about the issues exemplified by the Ansari story and the abuse epidemic endured by developmentally disabled people. There is, in fact, plenty of cross-over. During a week when the second Women’s March has pledged to be as inclusive as ever, it would be great to start a discussion asking the women who clicked on the Ansari story why they didn’t react to headlines about the epidemic. In the multiple arguments that #MeToo should teach women to show more agency and take self-defense classes, it would be great to recognize that disabled women are one group for whom self-defense classes are rarely helpful. In the same way social justice activists are helping the long marginalized experiences of LGBTQIA+ people to broaden society’s ideas about sex and gender, they could help the experiences of disabled people to broaden our ideas about what it means to be independent, strong, accomplished and attractive.

Justice will be done when reports like NPR’s about the abuse of developmentally disabled people shock the world and in doing so make it to the The New York Times’ Most Read list. And when the online March for those with disabilities who could not join an outdoor protest actually gets mentioned in the national reports about this weekend’s Women’s March. Until that day, mainstream feminism reveals its empathy to still have its limits.

 

 

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

8 Oct

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

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

“Whether or not achondroplasia affects intelligence.”

“And the answer was…?” I smiled.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

17 Sep

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

 

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

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

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

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

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

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

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

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

 

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

 

 

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Don’t Be A Sucker

20 Aug

 

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

 

 

 

 

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Should You Avoid the Word “Inspiring” When It Comes to Disability?

6 Aug

lying body(Image by Crodriguesc used under CC 2.0 via)

 

Many of the [deaf, dwarf, autistic, schizophrenic, disabled, transgender & gifted] people I interviewed said that they would never exchange their experiences for any other life – sound thinking, given that exchange is unavailable.

– Andrew Solomon in Far from the Tree

 

Clichés are ideas, images, and sayings that are overused. They start off as messages that easily convey meaning. Such ease may at first be a sign of their success. But when they are repeated too often, they foster laziness. They hamper inquiry and innovation. We see a happy picture of a mother and child, we recognize it and all the uncomplicated feelings it is intended to convey, and we move on. Clichés hinder change and therein progress.

The opposite of a cliché has the opposite effect. It makes us pause, look again, consider the world and our assumptions about it, and—in the best case scenario—prompts a shift in us and our habits.

The term “inspiring” is cliché in the realm of disability, which is why it is on its way to becoming a taboo, if it hasn’t already. A boy who walks with crutches while flashing a smile is inspiring. The sheer willingness to face each day with lupus is inspiring. A runner with prosthetic legs is inspiring. Inspiration porn refers to such images in posters, human interest pieces, and memes, and their use as a reminder to a non-disabled person of how good they have it. This reminder is ever-so brief in comparison to the life situation that triggered it.

Inspiration porn is unrealistic but it has its roots in truth. Well-being is often achieved through a sense of gratitude and gratitude comes from having perspective. But the overuse of inspiration porn is problematic because it is one-sided. We are shown the simplicity of happiness but never the complexity of bioethics, the politics of disability rights, or the repetitiveness of chronic pain. The predominance of grinning patients is worrisome to disabled people because we could conclude from it that the world is only interested in us insofar as we are willing to repress anything contrary to the sunny narrative. This implies that the world is our ultimate fair-weather friend.

Inspiration porn can enable emotional vampirism. In the name of being “inspired,” we are often invited to watch someone with a disease or disability on reality TV, shed a few tears, congratulate ourselves for our willingness to dabble in sadness, and quickly move on to life as it was, perhaps lecturing others on just how hard others have it, while never considering our indirect role in any hardship. How many people say they have been “inspired” by Little People, Big World but then do nothing to change the U.S. policy on the U.N. Convention on Rights of Persons with Disabilities? I’m gonna say lots. Those addicted to emotional vampirism empathize in all the wrong ways, frequently muddling the truly tragic and the merely different.

But “inspiration” need not be unproductive. Watching and reading about disability, illness, and loss can ground us to humanity. After all, what else can – besides knowing someone personally? Such connections can lead us to genuinely understand the frivolity of our daily worries about job promotions, physical fitness, and that thing a supposed friend muttered to us that may have been a back-handed insult or may have been nothing at all. Having perspective is rarely a bad thing. There’s no harm in feeling gratitude—not pride, but gratitude—for every day that we do not have to endure intense physical pain or face probable death.

We can draw both good and bad conclusions from seeing someone doing something we didn’t know was possible. I am concerned when exceptionally talented disabled athletes are promoted as proof of why no one should ever take a break or not take risks. But I was suddenly overjoyed the first time I was treated by a doctor with a visible disability. (Seriously, I almost hugged him.) Representation feels good. Seeing is believing, to use a cliché.

History has proven that innovation and bravery are often contagious, as are idleness and cowardice. We’re social animals. Progress relies on our recognizing the world’s hurdles that need to be removed regardless of whether or not we have a personal connection to those they hold back.

But “inspiring” is overused. Maybe “humbling” is a better term. In this day and age, humility is so rare we may as well consider it radical. And how about “provoking”? When we see someone face struggles we can only imagine, we could ask ourselves if it provokes anything in us. And go from there. 

 

 

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Another Reason Why American Students Should Protest Campus Speakers If They Want To

23 Jul

Protest(Image by Jorgen Carling used under CC 2.0 via)

 

Academics across the political spectrum are debating whether or not students should protest speaking events on their campuses by controversial figures like Charles Murray, Bill Maher or Milo Yiannopolous. Murray tried to prove in his bestseller The Bell Curve that black people are genetically predisposed to lower intelligence than white people. Maher has made no effort to differentiate between Muslim extremists and all Muslims in political discussions on his TV show Real Time. Yiannopolous is a professional Internet troll who says to anyone who finds his arguments upsetting, “Fuck feelings.”

Lisa Feldman Barrett argues in The New York Times that Yiannopolous should be protested and rejected by academia because “he is part of something noxious, a campaign of abuse. There is nothing to be gained from debating him, for debate is not what he is offering.” She puts Charles Murray, however, in a different category. Jonathan Haidt and Greg Lukianoff argue back in The Atlantic that any campus protest of any speaker is an attack on free speech and contributes to a dangerous culture of victimhood that coddles college students. Both articles make interesting points. Both articles miss the point as to why I primarily believe students should protest any or all of these speakers.  

Unlike students here in Germany, where higher education is free, college students in the U.S. are not mere pupils who have been accepted based on their academic performance with the purpose of engaging in profound discourse that benefits both themselves and the academic community. College students in the U.S. are customers that go into sometimes life-long debt in order to purchase the product that is their four-year education. UC Berkeley, where students protested Bill Maher as a commencement speaker, currently charges $29,784 for one year of tuition, room and board. A year at Middlebury College, where Charles Murray was met with violent protests, right now costs $63,917. Google why tuition in the U.S. has skyrocketed in the past four decades and you will find countless theories. But the fees are real as is the fact that guest speakers are not only invited but paid by these colleges. It is thus perfectly reasonable for students to express their opinion as to how their tuition money is being spent, just as it is perfectly reasonable for consumers to launch boycotts against companies that engage in unethical practices or belittle minorities.

Furthermore, these guest speakers demand exorbitant speaking fees. Charles Murray charges between $20,000 and $30,000 for a single speech. Bill Maher charges between $50,000 and $100,000 per event. I was told by a staff member at my alma mater that his  department could not afford one speech by a well-known theorist in the field of language. His fees were lower than Murray’s, let alone Maher’s.

My college education was invaluable. And academia confronts, examines and debates controversial ideas that can be deeply upsetting to many people every day: ideas like when does life begin and end, who can be considered human, is love or attractiveness quantifiable, should blasphemy be considered hate speech, should we breed shorter people to save energy, etc. But these debates alter when someone who has made a career out of arguing for one side is paid an enormous sum to give a speech about it. Aspiring teachers, social workers, and librarians have a right to say whether they are willing to go into life-long debt so that a celebrity can earn between $20,000 and $100,000 in one afternoon on campus by firing off some rants. They have a right to say whether the hosting professor should perhaps instead use college funds to pay $25 for one of Murray’s or Maher’s books and photocopy a chapter for his class, where the ideas can then be debated over a few days if not weeks.

That is precisely how I first encountered Murray’s argument that black people are genetically predisposed to a lower IQ. My genetics course culminated with analyzing The Bell Curve and discovering how scientifically flimsy Murray’s evidence is. This absolutely endowed me with a detailed understanding of how inane the colonial belief in separate races is and prepared me to confront those who still cling to it. I am very glad for that. But would I want the tens of thousands of dollars spent on my education to have helped contribute to the wealth Murray has accrued from reiterating this intellectually weak but attention-grabbing idea? The same class addressed the fact that the eugenics movement both resulted in the sterilization and deaths of thousands of disabled people but also contributed intellectually to the early stages of genetics as a science. As someone with achondroplastic dwarfism, I found it important to learn about that. But should I have stood idly by were the college to invite and pay a eugenicist to give a speech? How about a Neo-Nazi?

That is an ethical quandary at best. One that warrants debate. And peaceful protest is a form of debate, an exercising of the right to freedom of speech. 

Not all protests on college campuses are on the right side of the issue. The dumbest demonstration I ever witnessed in my student days was against the ban on smoking in the cafeteria. This migraine-sufferer was ever so grateful to see the fumes disappear. But I wasn’t enraged at the idea of the smokers voicing their dissent. I walked by their protest without bothering to comment and later mentioned my disagreement when asked. 

I was sympathetic the following year when students held a peaceful but angry protest of the new performing arts center, which was designed by Frank Gehry and cost $62 million. Some of my friends on campus were there in part thanks to scholarships but nevertheless had to work 65+ hours a week in the summer to cover the rest of tuition. They showed up at the protests, arguing that the $62 million should have instead been spent on scholarships. Despite what many like to think of most campus protesters, they were not spoiled children shielded from dissent and far too used to getting exactly what they want in they life. They were more aware than most of the way money works in the world – a world their college claimed to be preparing them for.      

 

 

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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.

 

 

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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.

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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.

 

 

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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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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.

 

 

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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.

 

 

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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.

 

 

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