Ghost + Dwarf = Double The Horror

12 Oct

(Via)

 

If ghosts are scary, and dwarfs are creepy, then ghost dwarfs must be an even better bet for thrill-seekers, right?

This seems to be the logic behind the DREAMLAND haunted house in Cambodia, where customers pay to be terrified by extraordinary-looking people like 30 year-old Horm Sivon, who is pictured above. She is one of ten dwarfs employed at the house alongside other disabled people.

The owner, Hien Rensei, defends his business as one of the few opportunities disabled people in Cambodia have for employment. “Some people may consider it immoral, especially in western countries. But in Cambodia we have the situation that people with disabilities just don’t get hired,” he told The Phnom Penh Post. He spoke of his own experience with discrimination as a Cambodian living and traveling in Japan, the U.K. and Germany. “For two years I couldn’t find a job because I didn’t speak the language and at airports my passport was checked much longer than the ones of my Japanese friends.”

Emilie Arfeuil, the photographer who captured Horm, denounces this industry as “a terrible step backwards in terms of human rights, a degrading exploitation of people’s disabilities.” She has entered the photo in National Geographic’s Photo of the Year contest.

If she wins, will the proceeds go toward furthering employment opportunities for disabled people in Asia?

 

 

White Woman Sues Spermbank for Accidentally Giving Her Black Donor’s Sperm

5 Oct

(Image by Max Shuster via)

 

Man, we can’t go two months without some couple making headlines over a baby they didn’t plan for. An Ohio woman named Jennifer Cramblett is suing a spermbank for impregnating her with the contents of a vial different from the one she selected. The mix-up resulted when a clerk misread Vial 330 as “380.” Her lawsuit reads:

On August 21, 2012, Jennifer gave birth to Payton, a beautiful, obviously mixed race, baby girl. Jennifer bonded with Payton easily, and she and [her partner] Amanda love her very much. Even so, Jennifer lives each day with fears, anxieties and uncertainty about her future and Payton’s future. Jennifer admits that she was raised around stereotypical attitudes about people other than those in her all-white environment. Family members, one uncle in particular, speaks openly and derisively about persons of color. She did not know African Americans until her college days at the University of Akron.

Because of this background and upbringing, Jennifer acknowledges her limited cultural competency relative to African Americans, and steep learning curve, particularly in small, homogeneous, Uniontown, which she regards as too racially intolerant.

As just one example, getting a young daughter’s hair cut is not particularly stressful for most mothers, but to Jennifer it is not a routine matter, because Payton has hair typical of an African American girl. To get a decent cut, Jennifer must travel to a black neighborhood, far from where she lives, where she is obviously different in appearance, and not overtly welcome.

One of Jennifer’s biggest fears is the life experiences Payton will undergo, not only in her all-white community, but in her all-white, and often unconsciously insensitive, family. Despite her family’s attempts to accept her homosexuality, they have not been capable of truly embracing Jennifer for who she is. They do not converse with her about her gender preference, and encourage her not to “look different,” signaling their disapproval of her lesbianism.

Though compelled to repress her individuality amongst family members, Payton’s differences are irrepressible, and Jennifer does not want Payton to feel stigmatized or unrecognized due simply to the circumstances of her birth. Jennifer’s stress and anxiety intensify when she envisions Payton entering an all-white school. Ironically, Jennifer and Amanda moved to Uniontown from racially diverse Akron, because the schools were better and to be closer to family. Jennifer is well aware of the child psychology research and literature correlating intolerance and racism with reduced academic and psychological well-being of biracial children.

Family planning is so endlessly complicated that any law-abiding individual seeking privacy deserves it. But Cramblett is going public with her pursuit of compensation for emotional distress and therein invites judgment. John Culhane writes at Slate that this sort of blunder is bound to happen in the free market of assisted reproductive technology. Julie Bindel at The Guardian warns of a creeping let’s-get-a-designer-baby approach to parenting among those using IVF. “Just remember,” she writes. “If the child you end up with does not exactly fit your ideal requirements, you can’t give it back – and nor should you even suggest that something bad has happened to you.”

Do parents have the right to be guaranteed certain kinds of children? Those pursuing parenthood via sperm donors, egg donors, or adoption have much more freedom to decide against certain kinds of children than those using nothing but their own biology. The application for becoming an egg donor in New York contains over one hundred invasive questions about family and medical history, as well as education, favorite sports, artistic talents and “additional characteristics” such as “cleft chin, full lips, big eyes, or high cheekbones.” Applicants are required to submit three photos “that shows [sic] your face and/or body type clearly.”

I understand why such questions are asked. Many if not most parents already know such things about those involved in producing their child, so why shouldn’t the IVF parents be allowed to know? If my partner and I were to join their ranks, what sort of donor profile would seem most appealing to us? Deciding upon something inherently entails deciding against something else. Nevertheless, it is hard not to see this tick-the-box approach to baby-making as eugenic. How many parents would accept my eggs, with their 50% chance of passing on achondroplasia? How many would sue if someone accidentally got them without asking for them?

Parents seeking to adopt children here in Germany are asked what kind of children they would and would not like to have before they look at profiles. For example, do you mind if your children look extremely different from you? What about physical disabilities? Mental disabilities? Drug addiction? In an interview with a family whose two children were adopted, I was told that the agencies encourage prospective parents to be utterly frank about their fears and prejudices – that an insistence along the lines of, “We can handle anything!” will sound suspiciously naïve.

Such brutal honesty strikes me as reassuringly well-informed, perhaps the result of infamously ideological parents like Josephine Baker or Jim Jones, who flaunted their rainbow families at the expense of the children’s individuality. Reading Cramblett’s descriptions of her relatives’ hurtful reactions to her sexuality, I can sympathize with the feeling that battling one kind of bigotry can be hard enough. Everyone deserves to live free from the unnecessary pain of bigotry. But if we’re going to be suing someone, wouldn’t it be more logical to file complaints against those who make her daughter feel stigmatized and unrecognized? Surely they’re the ones causing “emotional distress.”

While the spermbank does appear to have erred out of negligence and may be at fault, would awarding Cramblett for “emotional distress” not set a precedent and open the door for endless lawsuits over the births of minority children parents did not explicitly wish for? My parents had a 1 in 40,000 chance of producing a child with achondroplasia, as does anyone reading this. (That is, unless you already have achondroplasia.) Should doctors warn every prospective parent of those odds? Should they warn us of the chance for racial atavism? If homosexuality proves to be genetically determined, will parents have a right to sue doctors who fail to remind them of the risk? The very idea of being financially “compensated” for emotional distress is often silly to those of us who know from firsthand experience how vastly unreliable life can be.

Legal decisions aside, my primary hope is that Cramblett and her partner will explain the lawsuit to her daughter in a way that does not cause her to feel any more conflicted about her extraordinary appearance than her relatives’ racist views already do.

 

 

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

28 Sep

(Image by Matt Bryans 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, Tammy Duckworth. 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 spatisicity 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.

 

 

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

21 Sep

(Image by Bill Bate 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.

 

 

Street Harassment of Dwarfs: What You Can Do

14 Sep

 

If you haven’t caught it already, Jonathan Novick’s video documenting his experiences in public as a person with achondroplasia is worth your time. Having grown up in a small town where almost everyone knew his backstory, Novick’s move to New York City was a rude awakening to the problem of street harassment. A day out and about, recorded by a hidden camera, features strangers shouting at him from afar, “Hey, short stuff!” “What is he?” “Little midget! Big man, big penis!” A few ask him, “Have you ever been on TV?” “Are you on that show with the little people?” “Can I take your picture?” Two people walk by while photographing him, without asking for permission.

Although I did not undergo limb-lengthening to blend in (more on that here), it has undeniably spared me a lot of this unpleasant commentary which so many dwarfs endure, and which I used to endure as a child. Writing from the U.K., Eugene Grant’s blog demonstrated last year that Novick’s tales of being incessantly photographed and called “Big man!” are far from rare. On Tumblr a college student reported this incident last September:

Walking home from coffee, a random car driving by yelled, “Slut” out their window. I’m not sure who it was directed toward. I was technically showing more skin than the other two in our party, but I also am the height of a 9 year-old and from a distance in the dark it’s hard to determine my age.

Either way assholes are assholes.

This is what sociologist Lisa Wade has called the burden of not being able to assume it’s not about you. This is a burden most people who are visible minorities carry with them. In a review of a street photography project by an artist regularly harassed for being fat, Wade explains:

The truth is that [she] often does not know what’s going on in the minds of her subjects. Yet, because she carries a body that she knows is disdained by many, it is perfectly reasonable for her to feel like every grimace, look of disgust, laugh, shared whisper, and instance of teasing is a negative reaction to her body. In fact, this is how many fat people experience being in public; whether they’re right about the intent 100% of the time is irrelevant to their lived experience.

And this is how people of color, people who speak English as a second language, disabled people and others who are marginalized live, too. Was that person rude because I speak with an accent? Did that person say there was no vacancies in the apartment because I’m black? Was I not chosen for the job because I’m in a wheelchair? Privilege is being able to assume that the person laughing behind you is laughing at something or someone else, that the scowl on someone’s face is because they’re having a bad day, and that there must have been a better qualified candidate.

While I’ve had my fair share of strangers asking about my scars, hands, and gait, they usually have to be particularly nosy in order to take notice of these features in the first place. This happens to me a lot more often in certain rural areas than in the urban setting I call home.

This is why the small town vs. big city debate isn’t quite as simple as Novick presents in his film. I understand the idea that extraordinary-looking people can benefit from living in a close-knit community, where most are already aware of your condition and don’t need you to explain it to them. Conjoined twins Abby and Brittany Hensel’s parents have also claimed their daughters benefited from this. But plenty of people who belong to minorities can attest that small towns do not always embrace diversity in their community. And while there are tremendous advantages to an atmosphere where people are outgoing and unrepressed, there is a fine line between friendliness and nosiness: In places where everyone knows everyone’s business, the assumption that everyone has the right to find out what they don’t know about you can be pervasive. In the choice between small town gossip versus big city street harassment, I’d choose neither.

In my experience, what matters is not the size of the place but the culture. Cities do not have to be hostile environments of street harassment, and villages do not have to be breeding grounds for judgmental hearsay. As Novick says, “I’ll ask that the next time you see someone who is different from you, think about their day. Think about what their day might be like… And then think about what part of their day you want to be.”

 

 

 

 

Everyone’s Sexuality. Everyone’s.

7 Sep

(Via)

 

Don’t read the comments. Don’t read the comments. Don’t read the comments. 

That’s what raced through my mind as I read “The Challenges of Having Sex As A Little Person” at The Atlantic. Of course I read the comments anyway. 

And I was only slightly startled to find nothing but solipsistic snickering and overdone puns. The Atlantic doesn’t win any points for ending the article on a pun, either. But praise is due for addressing the topic at all. Based on an extensive interview with Dr. Marylou Naccarato, who has Kniest dysplasia, the article takes a wonderfully sex-positive approach to the experiences of people with dwarfism and the physical obstacles they can face in bed.

As per nearly every feature on dwarfism in the mainstream media, there are some factual errors. For example, one dwarf couple is quoted claiming that people with achondroplasia require “no medication, surgeries, special needs, nothing.” (See here for a list of the many complications we are at risk for.) But Naccarato is doing great work that is revolutionary in light of the fact that Little People of America, and probably most disability advocate organizations, repeatedly shy away from the topic of sexuality.

A simple reason for their silence is that almost all disability organizations comprise just as many parents and relatives of disabled people as disabled people themselves. And who wants to debate the best way to masturbate with mom or dad sitting next you? A more sinister reason for the silence is one of the building blocks of modern prejudice against disabled people: that is, the presumption that they are innocent, and therefore asexual. Most positive portrayals of disabled people are cute and cuddly. Is it the only way society can accept us? Refusing to see a minority as anything but asexual is to deny them their full humanity, on par with slut-shaming, prude-shaming, queer bullying, and objectification.

Before I go any further, let me say this: I do not want to talk publicly about what I do in the bedroom and I do not want to know what you do in the bedroom. My firm belief in sex-positive feminism and equality does not mean I think that you are sexy or exciting or impressive. Unless we’re close confidantes or I’ve indicated otherwise, please assume I don’t want any mental images of you and your naughty bits, no matter what they look like.

That said, I fully support anyone’s right to desire any sort of consensual sex imaginable. Without double-standards. Without the pressure of competition. Without the nuisance of others turning their personal preferences into rigid rules.

Take, for example, the way virginity is so frequently turned into not just a game but a high-stakes tournament. When and how did you lose it is an idea all of us are expected to base much of our identity on, even as adults. This is despite the fact that, according to medicine, virginity doesn’t exist. After all, what kind of sex does a guy have to engage in to officially “lose” it? And what about girls born without hymens? When exactly do lesbians lose their virginity?

Like race, virginity is a social construct and, in the words of a very wise person on Tumblr, what can be socially constructed can be socially changed. Last year the great Tracy Clark-Flory interviewed acquaintances about the sexual experience they considered to be their “first time.” The glorious thing about her inclusive project was that it revealed human sexuality to be just as diverse as everything else about us. Some defined their first time by their first orgasm, others by a particular first touch or experience of being touched. The problem with her stretching the definition of “losing your virginity” so broadly is that it robs competitive, insecure people of their ability to set standards with which they can gloat and put others down. Wait, no. That’s another glorious thing about it. There really is no problem with recognizing everyone’s experience as equally valid.

Failing to include everyone not only causes unnecessary humiliation, but it causes us to miss out on opportunities for true enlightenment. To quote the authors of You Can Tell Just By Looking: “Sexual minorities—people whose sexual desires, identities, and practices differ from the norm—do a better job talking about sex, precisely because they are constantly asked to explain and justify their love and their lust to a wider culture and, even, to themselves.”  The more you examine harmful traditions, the less necessary they become.

This does not mean that minorities have better sex. Indeed, too many activists in the sexual revolution end up repulsing readers and listeners when they allow pride in their sexuality to devolve into arrogance, insisting their sex life is better than yours, rather than merely different. For a year, the BDSM club at my alma mater ran the slogan: “I do what you’re scared to fantasize about.” Not helpful. And kinda pathetic the more you think about it.

I will never judge someone for liking any particular kind of consensual sex, but I will judge anyone who tries to turn sex into a competition to calm their own self-doubts. Whether you’re a wise-cracking online commenter or a sex-positive pioneer, true sexual liberation is about moving beyond the middle school clique mentality, not indulging in it. It’s pretty much the least attractive thing there is.

 

 

Would You Give Up A Disabled Baby, And If So, Why?

10 Aug

(Via)

 

Tonight 60 Minutes will feature the very first interview with the Australian couple that has attracted international scorn ever since the Thai woman they hired to be their surrogate mother publicly accused them of adopting one of the twins she gave birth to while refusing Baby Gammy, the one with Down Syndrome. Hiring a surrogate mother who lives abroad is both legal and unregulated in Australia, with none of the criminal background checks or counseling that are required for domestic surrogacy arrangements.

The Digital Age has seen the rise of prospective parents independently seeking out surrogate mothers online without any oversight, as well as a rise in “re-homing,” wherein adoptive parents join Facebook or Yahoo groups to seek out new parents for a child they’ve decided is harder to handle than they had thought. A disturbing Reuters report last fall profiled a couple who handed over an unhealthy girl they had adopted from Liberia to a new family they had found online, only to later discover that the new parents were known sex offenders.

Yet while black market adoption may be on the rise thanks to the Internet, the history of people rejecting only certain kinds of children is depressingly long. Only 2% of all babies born are disabled, yet half of the children up for adoption in the United States are disabled. Half of them are also black. Chad Goller-Sojourner told NPR this year that prior to his adoption by a white family, he was passed over by more than one black couple for being “too dark.”

I am deeply grateful that my parents did not put me up for adoption, like so many parents of dwarfs before them. Being rejected by your own parents for your difference feels like a rejection of your very life. But I will not start chanting that parents should never ever give up their children until we admit that not everyone is capable of being the sort of parent certain children need. The skills required for accepting your child’s skin color or body shape are not the same skills required for accepting a lifetime of waiver agreements about the deadly risks of invasive surgery. In the real world, some marriages do break down and some parents do become abusive and some parents do murder their half-grown children when they try and fail to cope with their child’s disability. I know a good number of people who are great at working independently but terrible at caregiving. In Far From the Tree, Andrew Solomon profiles a British woman who eventually relinquished custody of her severely disabled daughter to a foster mother, telling the NHS, “I’m not the right mother for this child.” Such honest humility requires some degree of bravery and, as Solomon points out, honors the skills of the foster mother and all parents who keep their commitments to disabled children.

Do some parents give up too easily? Absolutely. But are some children better off far away from their parents? Evidently. Because no two parents are alike, what is best for the child is best decided on a case-by-case basis. The Australian case sounds dreadful, but I’m withholding judgment until the parents have had their say. And as long as there is reproduction, there will always be parents who put their children up for adoption or terminate pregnancies, and society must thus ensure that the means for doing so are absolutely safe and heavily regulated.

But we cannot deny that too many parents end up failing to support certain kinds of children because the society they live in fails to support such kinds of people. Parents can usually see through the B.S. of those who urge them to stand by their kids no matter what and who also regularly make disparaging remarks about scars, fat, or dark skin, and openly wince at the idea of looking like a freak, a wimp, or a pussy. We won’t ever lower the disturbing number of prospective parents who would reject a child with an extra finger or toe until we as a society confront what would cause a parent to think that having an extra finger or toe is too horrific to endure.

During a discussion in college about the individual’s right to make their own medical decisions, I was shocked to hear a bunch of my friends insist that they would rather die than lose the ability to walk. Is it possible to attach such extreme shame to a hypothetical situation for yourself without attaching shame to the situation of others who live that way every day?

When I told one of my fiftysomething mentors about how upset I was by the incident, she smiled and said, “Well, that’s something young people are certainly more likely to say than anyone else.”

A fortysomething friend piped up, “Yeah, that is a very young person thing to say. I swore when I was young that I’d shoot myself if I ever went bald and yet here we are!”

Indeed, while the strains of physical pain and special accommodations and repeated doctor’s appointments are very real, perfection is not. And no matter how far technology advances, the belief that we can guarantee ourselves “normal” children is delusional. After all, unlike Baby Gammy and I, 85% of all disabled people were not born disabled. That’s something to bear in mind when heading to the obstetrician’s or the adoption agency.  

 

 

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