Tag Archives: Illness

Difference Diaries Wants to Hear from You

19 Jul

Copyright Difference Diaries

 

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

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

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

Face-palm.

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

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

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

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

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

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

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

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

 

 

Advertisements

Would You Rather Be Born Disabled or Become Disabled? (Part Two)

28 Sep

Dead body(Image by Stéphane Lavoie used under CC 2.0 via)

 

Most of them were not born with dwarfism. This is what I observed from a history of eminent dwarfs who enjoyed some degree of success outside of freak shows before the minority rights movements of the late 20th century. Most of them, such as Toulouse-Lautrec, experienced stunted growth as the result of an accident or an illness well after birth. Well after it would have been socially acceptable for their parents to give them up or hide them away. Such cases account for a very small minority of people with dwarfism, yet they dominated the scene of non-marginalized dwarfs for most of Western history. This got me thinking.

I conducted a crowd-sourcing experiment on Facebook, asking friends to name very famous people with severe physical disabilities. They had to be household names, nothing along the lines of “that little guy on Game of Thrones” or “that comic on that show from the Eighties who had a muscle problem.” The list of responses bore no surprises: Helen Keller, FDR, Beethoven, Frida Kahlo, Ray Charles, Christopher Reeve, Stephen Hawking, Michael J. Fox. All but two of them—Stevie Wonder and Oscar Pistorius—incurred their disability after infancy. Was this another sign of congenitally disabled people being hidden away? The vast majority (85%) of disabled people become disabled after birth. But the 15% whose conditions are congenital appear to be underrepresented in public.

Does society more readily accommodate those who lose certain abilities than those who never had them to begin with? Anthropologists know that for most of human history any injury or illness without a visible cause was presumed to be the result of black magic or a vengeful deity. From the European mythology of the changeling right up to the Nazi condemnation of genetic “monsters,” congenitally disabled people have been traditionally viewed as non-human and segregated accordingly. Vestiges of this remain in our general tendency to simply not consider congenitally disabled people as potential friends or partners or even peers, in contrast to the conviction that we should stick by our loved ones no matter what befalls them. Pop icon Dick Clark was warmly welcomed back to television as a co-host after his debilitating stroke, but I’ve yet to find a TV presenter in America who was born with a speech impairment like the one Clark developed. I don’t have the funding to empirically test my hypothesis, but you don’t have to delve too far into mainstream media to come up with stories, articles and interviews spotlighting someone who seemed to have it all until one fateful day when tragedy struck. And notice the comparable paucity of such resources on people who have always lived that way.

I squirm as I write this for fear of implying that those who become disabled have an easy time of it. Far from it. It would be utterly callous to ignore the often indescribable strain illness and injury can inflict on relationships, and the horrific social isolation that too many patients face. There’s a reason that “fair-weather friend” is a well-known term. And the human fascination with suffering can be more voyeuristic than empathic.

But no matter the motive, it is always accompanied by the unspoken understanding that no one would ever want to become disabled. This is, in essence, the most universal view of disability: Who on earth would want to lose an ability of any kind?

Even as a congenitally disabled person I understand this. I would never choose to erase my dwarfism from my life experience. But I do not like becoming more disabled than I already am. After tendon injuries and surgery to combat stenosis, I miss being able to ride a bike, to walk barefoot, to cook and type and sit on benches for long periods without pain. And if tomorrow I were to lose my ability to hear, see, or walk, I would be distraught, to put it mildly.

But in voicing this, it is crucial for me—and everyone listening to me—to recognize that my becoming deaf would be a profoundly different experience from that of my friend who has been Deaf since he can remember. Many Deaf people with cochlear implants have told of how overwhelmingly unpleasant hearing sound for the first time can be: One man has “discovered that, far from being adorable, the voices of his grandchildren were rather shrill and often best experienced with the implant turned off.” That Deaf Guy comic strip tells of the authors’ son pitying people who don’t know how to sign.

Similarly, those who have always needed a wheelchair to get around tend to see it as no worse than needing shoes to get around. Yes, it’s inconvenient in a world where ramps are all too rare, just as it would be inconvenient for those of us who are ambulatory if most public facilities didn’t accommodate the shoes on our feet. But that difficulty is imposed by a society that fails to accommodate certain minorities, not by the disability itself. Congenitally disabled bodies do not notice what they lack. As so many have said before me, How can you miss something you never had to begin with?

Researching all of this has brought me to the following conclusion: As individual humans, it is harder for us to deal with becoming disabled than with being born disabled. But as a society, the reverse is true – it is harder for us to accept someone who is born disabled than someone who has become disabled.

As a result, those who were born disabled and those who have become disabled often find themselves on opposite ends of the argument. A woman like Stella Young, who has never been able to walk, is rightly insulted when people tell her she is brave and inspiring just for getting up every morning. (Her TED Talk below is worth every minute.) But a woman like Christine Miserandino, who is slowly losing the ability to walk, is rightly seeking others’ encouragement and support as she struggles to do something she once took for granted. (Her oh-so-quotable Spoon Theory has already been linked on this blog before.)

 

 

Because the majority of disabled people are like Miserandino, not Young, the discourse on disability is dominated by sympathy, fear and lamentation. It is hard for us to remember that we shouldn’t pity a woman with cerebral palsy for her spasticity when so many people with multiple sclerosis openly mourn their loss of agility. Those who become injured or ill are entitled to their grief and no one should ever attempt to silence them. But everyone should think beyond their own experience before they publicly decry their condition as unbearable. Especially when it ends up joining the chorus of ableism led by non-disabled people.

One of the most read articles at The Atlantic this month is a piece by bioethicist Ezekiel Emanuel who explains why he hopes to die before age 76:

[Living too long] renders many of us, if not disabled, then faltering and declining, a state that may not be worse than death but is nonetheless deprived. It robs us of our creativity and ability to contribute to work, society, the world. It transforms how people experience us, relate to us, and, most important, remember us. We are no longer remembered as vibrant and engaged but as feeble, ineffectual, even pathetic.

Emanuel is an amateur mountain-climber and a professional writer. He is entitled to feel upset at the idea of losing the abilities he currently holds most dear. And his other arguments about the drawbacks to longevity are as thought-provoking as physicians’ personal opinions on life-saving interventions. But his decision to openly denounce dependence and weakness as unproductive and undignified increases the lifespan of our culture’s ableism. How can we ever stop marginalizing disabled people if we continue to openly voice our fear of becoming like them?

The experiences of those who are born disabled and the experiences of those who become disabled are profoundly different and equally valid. Simply remembering that would change a lot.

 

 

The Parents and the Childfree Are Ignoring A Very Important Group

11 Aug

Hay que reorganizar los cuidados

(Image by gaelx used under Creative Commons license via)

 

“Now I’m going to ask you something that you officially don’t have to answer, but I’m going to ask you anyway…”

I was in the middle of a job interview, and the résumé splayed out on the table betrayed my age. I knew exactly what was coming.

“Do you have kids?” the interviewer asked.

“No,” I smiled, remembering that German law protected me from having to tell him if and when I ever planned to.

“Good,” he smiled back, glancing to the side as if afraid of being overheard. “Because I hate to say it, but employees with kids will not be able to do this job.”

It was clear to me he wasn’t being sexist or anti-family – just honest. The job in question involved shifts at all hours of the day that would change from week to week. There wasn’t any room for developing a schedule of any regularity, or for excusing oneself repeatedly during flu season. And it wasn’t the only profession I’d heard of that demanded flexibility while offering none back. This year has seen study after study reveal that childless women are heavily favored in academia and the corporate world, while men in any field face miserable stigma if they dare prioritize paternal commitments over professional ones. Parents have it so hard.

But then again, so do childless employees. Yet another study out this year revealed that middle class childless women in the public service sector face stigma and sometimes even harassment in the work place for defying traditional gender expectations. In these jobs, working moms are sometimes accommodated more readily than single ladies, leading Amanda Marcotte to complain at Slate of “women missing dates, exercise classes, and social outings in order to cover for the mothers they work with.” In New York magazine, feminist Ann Friedman argued:

Many corporations now strive for a veneer of family friendliness, so it’s not likely a woman will get the stink-eye for leaving early to catch her kid’s soccer game. Which is a feminist victory. But if a childless employee cops to the fact that she’s ducking out for a yoga class? It’s seen as downright indulgent and may even show up on a performance review.

If you’ve ever waded into the debate between childfree adults and parents, online or off, you know they tend to be rather resentful of one another. I usually find myself playing devil’s advocate to both. At this time last year I wrote about the depths of the pain self-righteous parents can inflict on others. But for every supercilious mother I’ve witnessed flaunting her offspring like Olympic gold medals, I’ve also seen huffy child-freers rolling their eyes the moment a toddler enters their field of vision, having no qualms with letting everyone know that the mere existence of a child in their presence is an assault on their personal freedom. Which brings new meaning to the word “childish.”

It’s a shame because the childfree movement has many excellent points to make about society and gender bias. Summing it all up to the inherent undesirability of children is the worst possible political tactic because no one who believes in human rights can write off an entire group of people who have no choice about belonging to that group. Would we tolerate anyone saying, “I can’t stand the elderly”? Or “There is no way I am ever going to learn to like mentally disabled people”?  And anyone who trashes someone else’s reproductive decisions in order to justify their own will never, ever convince the skeptics they need on their side. They’ll just come off as intolerant and judgmental.

And while mothers hit a wall if they insist that theirs is the hardest job in the world, I don’t think we’re going to get very far arguing that employees should have just as much right to leave work early to make it to yoga class as they do to make it to their kid’s soccer game. In the choice between work versus yoga, nothing but my own happiness is riding on the decision. Because it’s me-time. In the choice between work versus my nephew’s soccer game, someone else’s happiness is also at stake. Because it’s caregiving.

This is not to say that single people have less important lives than those with children. Nor do I intend to suggest that parenting is the hardest job in the world. (As mother and feminist Jessica Valenti pointed out in Why Have Kids?, can anyone say with a straight face that being a parent is harder than being a firefighter or an oncologist?) But those who dedicate a large chunk of their time to others in need of care should always be accommodated more readily than those who don’t. Because helping others in need—whether it’s your kids, your parents, your friend’s kids, or anyone you know who is dependent due to age, disability or illness—is work in itself. It’s often a labor of love, but it’s labor nonetheless. And usually it increases your need for me-time, while leaving you with even less time for it.

As a childless woman, I have occasionally been an unpaid caregiver and frequently the one in need of care. I’ve taken time off from work to babysit my neighbors’ toddler, to bring my nephews to the pediatrician, to pick up a friend’s daughter from kindergarten, to help organize a funeral and sort through an estate. And my parents, relatives, husband and friends have taken time off from work in order to take me to physical therapy, to check-ups and procedures, to be at my bedside before and after surgery. The ideal family-friendly workplace would accommodate any employee’s need to help someone in regular need of assistance.

And maybe if we extend the value of good parenting to the value of good caregiving, we’ll be able to have more discussions about how freakin’ hard it can be. Caregiving isn’t just about having a big heart and finding joy in knowing you helped someone. It’s about sacrifice. It’s about reading a book for the fourth time no matter how much you want to throw it out the window. Or rubbing someone’s feet to distract them from the pain no matter how little sleep you’re running on. Or missing out on parties and events no matter how badly you want to go. Or suppressing your gag reflex as the one you love spits up something absolutely gross. Or mustering the strength to decide whether you should endure the anger being vented at you because everyone needs to vent, or whether you should call your loved one out on their self-pity lest their anger become an abusive habit. Caregiving is about testing your patience until it inevitably wears thin and you make a mistake or lash out, ensuring you’ll be up the next several nights wondering whether you just scarred someone for life. Caregiving is work and, regardless of whether it is paid work, it is one of the most psychologically taxing kinds of work there is.  And some are naturally better at caregiving than others, regardless of gender.

But why is taking time off for your child’s recital more generous than taking time off for a date with a friend? Isn’t a childless peer just as valuable as a family member? Of course, but let’s not fool ourselves. Sitting through an entire school recital is a lot less fun than fine dining. (Hence the rule at Springfield Elementary: “No leaving after your kid’s part is done.”) And helping a friend through a typical young adult “crisis” like a breakup will never require the same sort of patience, empathy and thick skin that you need for helping someone through serious illness, severe injury, death or divorce. Commiserating, while still noble in its intentions, is simply saying, “I’ve been there!” and swapping sob stories within the boundaries of our comfort zone. Empathizing is forcing ourselves to stretch our imaginations and open our hearts to someone whose experience frustrates us, or maybe even scares us, because it is essentially different from our own experience. Because empathizing is so much harder, it is undeniably more noble.

Young, childless, upper/middle class adults like me will probably always be seen as the most self-indulgent because our stage in life is the least likely to involve illness or dependency. But those who volunteer after work to play with underprivileged children or tutor illiterate adults or regularly call their lonely relatives demonstrate that social segregation is in part a choice.

This is not to guilt everyone into feeling that our lives are meaningless unless we start volunteering. But we should be honest, not touchy, if our lifestyles are in fact more self-centered than others’. This year, unlike years past, I find myself only occasionally dedicating my time to someone else. My husband has been the giver, exerting himself to maintain the work-life balance constantly threatened by the pressures of his job and my medical needs. And for that he deserves accommodation from his employers, and both gratitude and admiration from me.