Tag Archives: Disability Rights

What the Stubblefield Rape Case Means for Disability Rights

22 Nov

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

Advertisement

Tags: , , , , ,

Would You Rather Be Born Disabled Or Become Disabled? (Part One)

21 Sep

Abstract Body(Image by srslyguys used under CC 2.0 via)

 

Imagine your body just as it is, in a world that looks exactly like the one we live in, but for one crucial difference:

You’re at a dinner party with some friends and some new faces, and you excuse yourself before heading to the bathroom. When you return to the table, you notice a few people exchanging looks. You wonder if your friends explained your absence to those who don’t know you well. You’re not sure if you should explain it yourself. Do you owe it to them? You’re not embarrassed, but they look a bit embarrassed for you. Then again, maybe you’re just being paranoid? You’re not really in the mood to get into it, and maybe these people would find it inappropriate dinner conversation. Maybe they’re the kind of people who would cringe, and you’d rather not discover that about them just now because the evening has been going pretty well and they seem nice so far.

Just when you decide not to say anything, the woman next to you asks, “Is everything okay?”

You reply, “Um, yeah.”

“Why did you get up and leave? Do you smoke?”

“Oh, no. No, I had to use the bathroom.”

“Oh… Wait, you mean like… you’re one of those… um… what’s the word for it?”

“Yeah. I’ve got frequent excretion syndrome. I have to use the bathroom a couple times a day.”

“Like, more than once a week?”

“Yeah, a couple times a day.”

“Like, every few minutes?”

“No, not that often. Just every few hours or so.”

“So you can’t hold it in?”

“Well, I’m—we’re—not supposed to. Not for too long. The doctors say it’s not healthy.”

“Wow. That must be so hard! How do you it?”

If 99% of humankind evolved in a way that they only needed to excrete once a week—as ball pythons do, for example—then modern society would look pretty different. The number of toilets available in public facilities would decrease significantly. A home with a bathroom would not be unheard of, but it would be a bit of a luxury, like an apartment building with an elevator. No one would assume that dinner at a restaurant or a friend’s house would guarantee access to such facilities. And the 1% of people who still needed a bathroom a few times a day would be considered disabled.

Eventually debates would crop up as to whether needing to excrete so often is “defective” or “just different.” There would be arguments as to who should accommodate whom: Should society provide more bathrooms, or should the minority wear diapers? Would you date someone who did? It must be so hard for parents and partners to deal with someone like that! I read on the Internet that those freaks do it in the shower! I would never get in a pool with one. You shouldn’t let your kids near them!

If you lived in this world, where most people’s bodies did not need to excrete more than once a week but yours did, you would undoubtedly experience frustration, as most disabled people do. But the source of your frustration would depend upon how you got to be the way you are.

If, after an accident, you suddenly belonged to a small minority of people who needed a bathroom more than once a week, you would experience a good deal of stress adjusting to your new schedule. Losing an ability you had taken for granted would feel unfair. Life was so much easier before this happened! Why me?! Some would be arguing that they would rather die than live like that. Depending on your support network and self-image, you might join that argument. But no matter how accepting your friends and family were, you would probably struggle with some internal shame about being less independent.

But if your body had always functioned that way for as long as you could remember—as it presumably does in the real world—most of your problems would stem from how alien the majority would make you feel. In the real world, we can all admit that needing a bathroom a few times a day can be inconvenient, especially on car trips, but it doesn’t feel “wrong,” “sick,” “crippling,” “freakish,” or “sad.” In a world where you’re the minority, you might accept the idea of wearing diapers rather than demand more bathrooms be built for you, or you might be deeply insulted by it. You might decide to combat the stigma of diapers. You would likely be upset hearing people say they would rather die than live like you.

That’s the difference between people who are born disabled and those who become disabled. The latter understandably experience stress, sometimes trauma, adjusting to a new condition. The former rarely feel the need to miss what they never had to begin with. Society likes to offer both groups pity. But they often respond to this pity with different answers because they have many different experiences. As we’ll see next week, conflict can only be avoided if everyone involved—those who were born disabled, those who became disabled, and those who are non-disabled—tries to understand the others’ point of view.

 

 

Tags: , , , ,

Define “Active”

16 Jun

(Via)

 

New York City has begun using a new design of the international symbol for disabilities this week. (See above.) Featuring a forward-moving, self-propelling wheelchair user, the new symbol has garnered praise from the mayor’s office and Professor Lisa Wade of Occidental College for portraying disabled people as “active and independent,” instead of “passive and helpless.”

I support the move 99% because it signifies the changing perceptions of what it means to be disabled. Altering our default descriptions of non-ambulatory people from “wheelchair-bound” to “using a wheelchair” sheds much-needed light on the fact that many disabled people are indeed differently abled. Wheelchairs, sign language, and Braille are not just substitute ways of moving and communicating but means of moving and communicating that require skill. If you’ve ever witnessed someone try to use a wheelchair for the first time, you know it’s like watching Bambi on ice.

That said, I am hesitant to embrace any idea that insists that physically “active” is preferable to “passive” at the risk of impugning those who cannot help but be dependent. Just as Little People of America’s motto “Think Big!” inadvertently suggests something undesirable about being small, an over-emphasis on being active—and defining “active” as the ability to physically move yourself forward—inadvertently suggests something humiliating about the thousands of medical conditions that preclude physical independence. All people have agency, and this absolutely bears repeating when we talk about human rights and portrayals of disability. But not all of us are independent.

Disability reminds us, perhaps like nothing else, that we can never hold every member of the human race to the same standard. This does not mean we cannot demand everyone strive for excellence, try their hardest, or be their own toughest critic. But it does mean we should be wary of promulgating rigid definitions of excellence.

As a friend with lupus once said, “What’s wrong with being weak?  What’s wrong with trying to do something and doing it badly?”  

Competitive cultures wince at weakness and I must say that America can be a very competitive place.  Even the most progressive human rights movements have embraced competitive, grandiose language when talking about empowerment.  Two years ago on Love Your Body Day, Chloe Angyal of Feministing wrote an article wherein she wanted to “ take a moment to appreciate the things my body can do.” She went on to list her favorite things:

My body can stitch itself back together when it gets cut. This never ceases to amaze me.

My body has an organ in it that can stretch to accommodate a small human being. I don’t want it to do any stretching or accommodating any time soon, but the capacity is there, and that blows my mind.

More than a decade after it was cool (was it really ever cool?) my body still has the muscle memory to do the Macarena. That one is kind of embarrassing, but still kind of great. Mostly embarrassing.

My body can orgasm. Enough said.

My body can do [a flip], and for that, I love it.

What can your body do?

I had been, and still am, a huge fan of Angyal’s writing. As a feminist, an athlete and someone who has struggled with disordered eating, her contributions to the discourse on body image have been invaluable. But this time around, I wasn’t inspired to join in her Love Your Body Day exercise. I hesitated to say so because I understood the noble intentions behind her article, and what kind of person wants to rain on a Love Your Body Day parade?

Apparently someone like me, because I ultimately couldn’t help but write this response:

I realize the very good intentions of your post: celebrating our bodies as they are. But the emphasis on what you can “do” (= ability) still made me quite uncomfortable as someone with disabilities.

Usually when one writes a piece meant to buck oppressive, judgmental thinking and celebrate the way we are, the author writes about a quality that is ostracized – a skin color, sexuality, a body size, physical features considered to be deformities, etc. It’s the honesty of the author in spite of adversity that inspires. You instead decided to celebrate things about your body that mainstream society does not ostracize at all, but in fact agrees with you are wonderful. So for those of us who cannot dance, have children, heal cuts, or do gymnastics, this post simply reminds us of this and it’s hard not to take it as bragging. (I know that wasn’t your intention.) You did invite us to list our own things we love about our bodies, but I don’t think there’s anything my body can do that yours can’t…

Angyal wrote back to me personally and apologized. From there we started a dialogue that resulted in my writing guest posts for Feministing and our exchanging lots of praise for each other’s work. I had been frustrated by the lack of disability awareness on leftist forums and simultaneoulsy self-conscious of appearing too negative or narcissistic. This made her response to my critique all the more inspiring.  She has both privileges and experiences of marginalization that I do not, just as I have privileges and experiences of marginalization that she does not. The same goes for those who can move their own wheelchairs and those who cannot.

Overlooking our privileges and inadvertently denigrating others happens all too easily, as all 7 billion of us strive for excellence and recognition of our various capacities for excellence. Trying to include everyone in the conversation, all the time, can be exhausting.  But admitting the danger of these missteps is imperative to the idea of truly universal human rights because that idea insists, over and over again, no matter what the circumstances, that everybody matters.  There is no way around it if we want to move forward.

 

 

Tags: , , , ,

The Year In Review

30 Dec

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

 

When I launched Painting On Scars at the beginning of this year, I had loads to say and almost as much worry that few would be interested in issues of disability and physical difference.  As the year comes to a close, I look back and see that the posts about ableism and lookism have generally been the most popular, followed by my spring article about family planning, reproductive rights, and privacy.  This hasn’t been the only surprise.

Lots of people find this blog by googling “dwarf + woman + sex.”  I have no idea who these people are.  They may be fetishists, they may be researchers, they may be women with dwarfism.  Your guess is as good as mine.

Since March, Painting On Scars has been read in over 100 countries.  To the surprise of few, no one in China reads it.  To the surprise of many, at least one person in Saudi Arabia does.  So have people in St. Lucia, Jordan, and Benin. 

Thanks to blogging, I’ve discovered there is a considerable online community committed to combating ableism with its own terms and tropes such as “supercrip” and “inspiration porn.”  I love such communities.  I also love bridging communities.  Because responses to my blog have shown me, perhaps more than anything has, that I want to talk to everyone.  And I really don’t care what your label is. 

I don’t care if you consider yourself Republican or Democrat or feminist or anti-feminist or religious or atheist or socialist or libertarian or apolitical or intellectual or anti-intellectual.  Well, okay, I do take it into consideration.  Somewhat.  But there is rarely consensus when we ask that everyone define these terms.  And none of them carries a guarantee against nasty personality traits like narcissism and defensiveness and aggression and cowardice.  Novelist Zadie Smith noted that we are told every day by the media and our culture that our political differences are the most important differences between us, but she will never be convinced of that.  When lefty comedian Jon Stewart was asked earlier this year if there’s anything he admires about right-wing hardliner Bill O’Reilly, he said, “This idea that disagreeing with somebody vehemently, even to the core of your principles, means you should not engage with them?  I have people in my own family that make this guy look like Castro and I love them.”

This is not to say that it’s all relative and I see no point to social justice or politics.  On the contrary, difference continues to be marginalized by the tyranny of the majority, as evidenced by the fact that the number one Google search term that has brought readers to my blog is “freaky people.”  And far too many kind people will more readily lash out at a person or group whose recognition demands they leave their comfort zone, rather than the forces that constructed and defined their comfort zone.  Well-intentioned friends and parents and bosses and classmates and leaders and partners and siblings and colleagues are capable of the vilest selfishness when they are scared of a power shift.  (As the Christian activists pictured above acknowledge.)  This is heart-breaking.  And it is not okay. 

But on the flipside, people are constantly smashing the prejudices I didn’t even know I had about them.  Every day friends and family and strangers demonstrate strengths that highlight all the mistakes I make, proving to me that politics are tremendously important but they will never be the most important element of a human being.   That may be a political idea in itself, but regardless of the divisions, most people on earth do seem to believe deep down inside that everybody matters.

And that’s what makes the struggle for social justice worth it.  If you are friendly and well-mannered and generous and honor your commitments and don’t let your self-doubt make you self-centered and try to listen as much as you talk and are honest about your problems without fishing for compliments and are big enough to apologize when you’ve screwed up, I respect you and admire you and am humbled by you.  I want to do the best I can because of you. 

 And since you’ve read this far, it’s more than likely you’re good at listening.  Thank you and happy new year!

 

 

Tags: , , , , , , , , , , , , ,

“ ‘I Am So Sorry’ Is A Start”

23 Dec

Last week 20 children and 7 women were murdered as I was celebrating my birthday.  Hearts leapt into throats and the urge to hug the little ones in our lives pushed the tears further down the cheeks.  As you absolutely undoubtedly know, the Internet has since been inundated with debates regarding gun control, violent video games, and even gender roles.  Amidst all the vitriol and special snowflake lecturing, it’s the lackluster discussions of psychiatric disorders that seem the least helpful.   

Too much of what has been said about mental illness has been too simplistic, too unscientific, too dismissive of the fact that accurately diagnosing a deceased individual often requires years of research.  Liza Long’s piece “I Am Adam Lanza’s Mother” is brazenly presumptuous and fraught with problems, while most of the outraged responses obscure their excellent points with a few too many personal jabs at her.  Of course everyone wants to know as soon as possible why 20 children were chosen as targets, but in this quest our commitment should be to accuracy, not promptness.

Although much of my work is in disability rights, I rarely write about mental illness or psychiatric disorders.  I have family members who are mentally ill and many friends who work in psychiatric fields, but I do not know nearly enough about it to speak with any authority and all too often hearsay is copy-and-pasted as fact.  Genuine concern is sometimes obscured by sick fascination.  The term “mentally ill” is a gigantic umbrella that covers everything from paranoid schizophrenia to anorexia nervosa to hypochondria.  Those with psychiatric disorders make up what is perhaps the most misunderstood and diverse minority on earth.  Casually tossing out easy-reading explanations before the news cycle gets bored and moves on usually does them more harm than good. 

I’ve been reading as much as I can about the complexities of Asperger’s syndrome, schizophrenia, psychopathy, and the countless articles reminding everyone that most mentally ill people are far more likely to be the victims of violence rather than the perpetrators.  I plan on getting my hands on a copy of Richard J. McNally’s What Is Mental Illness? in the new year.  Meanwhile, I can only hope that news readers and viewers do not perpetuate the media’s easy-answer approach to something as complex as medicine.

And while filtering out the less helpful material, I found two beautifully honest pieces by Rev. Emily C. Heath and Linton Weeks about what to say to grieving parents.  People in bereavement are traditionally not classified as minorities, but fear, misconceptions, and snap judgments usually surround them.  (I wrote earlier this year about what loss has taught me about the complexities of grief and the prejudices I used to hold against it.)  As we continue the debates aimed at preventing future tragedies, we should learn how to deal with what this tragedy has done to those closest to it.

 

 

Tags: , , , , , , , , ,

Degenerates, Nazis, & the U.N.

16 Dec

(Via)

 

A reaction to last week’s post about the U.N. Convention on the Rights of People with Disabilities sparked a behind-the-scenes discussion about whether or not I should allow name-calling in the Painting On Scars comments section.  I like to engage with almost anyone who disagrees with me, but online I know I also tend to only comment on sites that have strict no-drama policies because discussions can become pointless and boring really, really fast when there’s nothing but insults and exclamation points.  I ultimately decided that, for now, any rude behavior speaks for itself: Commenters can name-call all they want regarding people they dislike or say absolutely nothing, because in both cases they’re not going change anyone’s mind.

That said, I will always tell any supporters if they adopt tactics I want to have nothing to do with.  And it’s important to call out invectives that are particularly malicious in a way some might not be aware of.  The comment in question last week referred to the U.N. as “a bunch of degenerates, throat cutters, and other trash.”  Using the word “degenerate” in a discussion about disability rights is exceptionally insensitive, if not mean-spirited.    

The first time I read the word out loud to a friend here in Germany, his eyes shot up and said, “Be very careful with that word.  It immediately makes everyone think of the Nazis.”  And by “Nazis,” he meant the actual, goose-stepping, genocidal nationalists who tried as best they could to make sure disabled people either died off or were killed off.  Not “Nazis” in the Internet-temper-tantrum sense of “anyone I disagree with.”  The word also evokes the brownshirt term “degenerate art.”  Modern German sensitivity to the term is the result of looking honestly at the nation’s history of ableism.

Action T-4 was the first genocide program ordered by the Nazis, calling for the extermination* of those deemed by doctors to be “incurably sick.”  Between 200,000 and 300,000 disabled people were killed, though many were used for scientific experiments first.  *And by the way, I DETEST any use of the term “euthanasia” in this context.  “Euthanasia” literally means ending life to end pain, and for this reason I find it applicable where patient consent has been given or where pets are concerned.  But to imply that what the Nazis did to disabled citizens was anything other than murder is to dehumanize the victims.

The forced sterilization programs of disabled people in Nazi Germany, meanwhile, were modeled after American laws.  The very first forced sterilization law in the world was introduced in Indiana in 1907, and 30 states followed suit.  The Supreme Court upheld Virginia’s eugenics program in 1927 and it remained on the books until 1974.  Oliver Wendell Holmes summarized the Supreme Court’s decision thusly:  

It is better for all the world, if instead of waiting to execute degenerate offspring for crime or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind…  Three generations of imbeciles are enough.

The Nazi poster featured above focused instead on the expense: “It costs the German people 60,000 Reichsmarks to keep this genetic defective alive.  Fellow German, that is your money!”  After World War II, the Nuremberg Doctors’ Trial and the resulting Nuremberg Code discouraged ableist politicians from openly promoting eugenics on either side of the Atlantic.  But it wasn’t until 1981, the year I was born, that the disability rights movement in West Germany came into full swing and sought to combat ableism head-on. 

Almost every human rights movement is said to have a trigger moment when oppression went a step too far and the people fought back.  For the American Civil Rights movement, it was the death of Emmett Till.  For the gay rights movement, it was the Stonewall Uprising.  For the German disability rights movement, it was the Frankfurt Travel Ruling of 1980, brought about by a woman suing her travel agency for booking her in a Greek hotel where a group of Swedish disabled guests were also vacationing.  She claimed that having to see and hear disabled people had ruined her trip and the judge agreed with her.  Protests exploded across the country and the next year, which the U.N. had declared the Year of the Disabled, several West German disability rights groups organized and formed agendas.  They used the U.N. events to draw attention to the dire situation of disabled citizens in the country.

Two years later, the Green Party entered the Bundestag for the first time and was the first to voice support for disability rights as a human rights issue.  The Greens were born out of the 60s student movement in West Germany.  The movement was famous for protesting what most young activists across the Western world opposed at the time: the Vietnam War (and war in general), traditional gender roles, consumerism, pollution, etc.  But first and foremost, the West German 68ers were young people demanding the nation come to terms with its dark past, decrying that an overwhelming number of the nation’s leaders and officials were former Nazis.  Their commitment to human rights was inspired by an unfaltering awareness of how horrific things can get.  Their actions led to the passing of anti-discrimination laws and an amendment to the German Constitution in 1995, modeled after the Americans with Disabilities Act.

Another result of the students growing up and entering the government came in 1983 when conscientious objectors to the draft were no longer required to argue their motivations before a board for approval. This made it far easier for young men to opt for a year of community service in lieu of military service.  By 1991, half of those drafted became conscientious objectors.  For over 30 years, scores of German 19 year-old boys worked with mentally ill children at the Red Cross, in nursing homes, as assistants for physically and mentally disabled teenagers, and for Meals on Wheels.  This has created generations of men who often speak fondly of the experience and who are usually less fazed by disabilities or dependence, demonstrating a tolerance and openness that seems extraordinary for their age. 

The draft was discontinued last year and since then the community service option has been suspended.  Military debates aside, I agree with conservative politicians who have called for preserving the community service requirement and expanding it to women because it is an excellent government tool for combating both ableism and social segregation on a personal level.  Ableism is still a tremendous problem here in Germany, but in three generations, the country has changed from one of the most ableist societies on earth to one of the least.   The word “degenerate” signifies humanity’s capacity for cruelty and sensitivity to the word signifies our commitment to never repeat it.

To be fair, the word in last week’s comment was not aimed directly at disabled people but at the U.N. members working for disability rights.  And frankly, I’m a little insulted.  Because if anyone’s a degenerate here, it’s me. 

I am scientifically a mutant by virtue of my fibroblast growth receptor gene 3.  (Yes, yes, my genetics professor explained that technically all of us are mutants, but mostly just in boring ways… )  I am a semi-invertebrate now that pieces of my backbone were removed six weeks ago.  And I don’t take the last empty seat on the subway and request my friends slow down to my pace when walking for nothing.  So if anyone’s gonna go calling the organization that sprang from the Nuremberg Trials and founded the Universal Declaration of Human Rights a bunch of degenerates, they gotta get through me first.  I’m a degenerate living in Germany and proud of it.

 

 

Tags: , , , , , , , , , ,

In the U.S., Paralympic Athletes Might As Well Be “Untitled”

9 Sep

(Via)

 

The Paralympics end today after a week of what seemed to be decent coverage, though it depended on where you tried to watch them.  The host country allotted 150 hours of coverage to the Games, Australia clocked in 100 hours, and Germany and France allotted 65 and 77 hours respectively.  Meanwhile, the United States broadcast a whopping five and half hours and no live coverage at all, as per tradition.  Yay.

Considering how little attention was afforded the Games themselves, it is unsurprising that there was little dialogue stateside about disability rights and issues of equality.  What a missed opportunity.  The British media immersed itself in it, with articles like “Is it Ok To Call The Athletes Brave?”  Indeed, disrespectful attitudes toward people with disabilities today are more often implicitly patronizing than openly derisive, and it was pleasing to see the public address this.

The Paralympic Guide to Reporting that was handed out to media outlets brought up several interesting points about language.  It rightfully asserts that disabling conditions or features should not be turned into personal nouns that define the entire person or people in question: i.e., the disabled, the blind, a paraplegic.  Adjectives and verbs—a paraplegic athlete, athletes with disabilities—are less limiting, portraying a medical condition as one of many characteristics a person has.  (This has been repeated to me ad infinitum by a friend who’s uncomfortable whenever I refer to myself as a dwarf.  “You are Emily.  You have dwarfism!” he insists.  “And you have hazel eyes and freckles and long hair…”)  Other terms and phrases to avoid noted by the guide include:

normal

able-bodied

wheelchair bound

confined to a wheelchair

suffers from

afflicted with

victim of

The last three are commonly used today.  They’re problematic because they imply that a disability is always regrettable.  Sometimes it is, and sometimes it isn’t.  Suffering may have been an apt term for my achondroplasia two months ago, when severe lumbar pain made it hard for me to think of anything else during a sightseeing trip in England.  But suffering has nothing to do with all the ways in which my condition has brought me in contact with all sorts of unique people and places and outlooks.  I can’t imagine my life without it.  It’s my version of normal.  Unless the patient specifically says otherwise, any assumption that a disability is a round-the-clock tragedy is wrong.

For the sake of splitting hairs, I sometimes think the words disabled and disability are problematic because they automatically draw attention to what a person cannot do.  In the worst case, they can sound pitiful.  I’m very fond of the word typical in lieu of normal or able-bodied because it highlights that the standard by which we group people is based on a body type chosen by the scientific community.  It implies medical averages, not social values.  Typical is used in everyday speech to mean “usual” at best and “unexciting” at worst, unlike normal, which implies a state of correctness worth striving for, like in the phrase “back to normal.”  Discussions of autism and some other psychiatric conditions now commonly use the term neurotypical to refer to people without the diagnoses.  Maybe physiotypical could someday be the term for non-disabled people.

But as I’ve said a few times before, the search for acceptable terms is not about deciding what automatically classifies a speaker as Tolerant or Bigoted.  Words are only half as important as the intentions behind them, and the desire to understand another’s perspective is what separates an empathic person from a selfish one.  In the recent words of Professor Charles Negy, “Bigots… never question their prejudices.”  

The above list of do’s and don’ts is probably disconcerting to some readers.  I always feel simultaneously inspired and confused when given a list of hot-button words I’m told to avoid from now on.  Hell, I’ve written the word able-bodied before, and I’m someone excluded by it.  I find no problem with the word handicapped—I had handicapped housing rights in college and a handicapped parking sticker during my limb-lengthening procedures—but it’s considered offensively archaic in the U.K., apparently similar to invalid or cripple.  As we’ve seen in the midget vs. dwarf vs. LP debate, rarely is there ever a consensus in a given community over labels.  Labels are almost always problematic.  In my experience, the dialogue always matters more than the conclusion it comes to. 

And the inability of the U.S. media to have such dialogue during the Paralympics was pitiful.

 

 

Tags: , , , , , , , , ,