Taboo Stories About Disability: What We’re Not Allowed to Say

Last week’s New York Times featured a story about Joshua Miele, who at the age of four in 1973, answered the door of his Brooklyn home to a man he recognized as a neighbor. The man, for no reason other than his disordered thinking due to mental illness, threw acid into the boy’s face. A reporter who grew up in the same neighborhood at the time of the attack decided to track Miele down to see what had become of him. Miele became a scientist, and works now for an eye research institute, among other endeavors. He is married with two school-age children. The acid attack left him blind, his facial skin rough and misshapen as the result of numerous skin grafts.

Miele admits he was hesitant to do the New York Times interview.

It’s not that I don’t want to be written about,” he said. “I’d like to be as famous as the next person would, but I want to be famous for the right reasons, for the work I’ve done, and not for some stupid thing that happened to me 40 years ago.”

In that statement, I hear Miele pushing gently back against one of the prevailing cultural narratives we like to tell about people with disabilities, illness, or significant injury. They suffer, they fight back, they triumph, they become an inspiration. I hear him saying that he doesn’t really want to be an inspiration, or at least not because of his injuries. If he is an inspiration, he wants it to be because of what he has contributed, not something that happened to him.

The New York Times received many letters and emails in response to the Miele story, including one from his sister Julia Miele Rodas. Julia wrote:

….I am concerned that some readers will see Josh’s success in relatively simple terms: he was victimized; he struggled; he overcame. Obviously his life, like all lives, is more complicated than that. And it is critically important that we be open to many different kinds of stories about disability, especially those that are complex and open-ended, and especially those that people with disabilities tell themselves.

I have been paying attention lately to the many stories about living with disability to which we are not open (all of them, yes, “complex and open-ended”). The stories that make people angry. The stories that people label as damaging to the cause.

My friend and colleague Amy Julia Becker published a series of stories on her blog last month about different people’s experiences with prenatal diagnosis. She included a story by a woman who chose to terminate a pregnancy when the fetus was diagnosed with Down syndrome. For the most part, online responses to the story were gracious. (Although, as one of my friends remarked after reading the comments, it’s always interesting when someone insists “I don’t want to be judgmental,” and then continues in a way that comes across as….judgmental. Or at the very least, self-servingly sympathetic, as in “how awful that you had to do such an awful thing.”) Amy Julia told me, however, that she received some private correspondence from advocates for people with Down syndrome who disagreed with her decision to post the story. The irony, of course, is that 75 to 80 percent of women who receive a prenatal diagnosis of Down syndrome choose termination. So the most common story is, in the eyes of some advocates, the very story that should not be told.

When Amy Julia and I were talking about this incident over lunch, she mentioned also that many parents of children with Down syndrome hesitate to talk about the hard moments with their children. They are afraid that people will hear of those hard moments and conclude that life with Down syndrome is too hard, making genetic screening and termination the best choice. Admitting that they sometimes struggle to parent their child with Down syndrome and worry about their child’s future feels like a betrayal of that child and of all children with DS, a caving in to the prevailing cultural narrative. In contrast, she observed, she doesn’t hesitate to talk about the hard moments with her rambunctious son. No one is going to hear those stories and say, “See?? Little boys are so difficult. People should terminate pregnancies with little boys so they won’t have to deal with all this hard stuff.”

I have another friend whose daughter, now a teenager, has Down syndrome. When she talks to groups about her family’s story, she shares her recollections of the day her daughter was born, when the thought occurred to her, “I don’t want this baby. I don’t know how to handle this baby.” After one talk, another mother of a child with Down syndrome took her to task for telling this story instead of focusing on the positives.

When I have written that I hate my disability (but not my life), other people living with the same disorder (osteogenesis imperfecta) have responded, desperate to assure readers that not everyone feels this way about life with OI. When I wrote that, as a parent of a child who also has OI, I was heartbroken by the notion, voiced by a person with a disability, that parents who seek treatments or cures for our children are actually wishing that our children cease to exist, I was thoroughly chastised by an advocate.  He took me to task for refusing to accept an interpretation of parental motives that I did not share, for arguing that my story contradicts a story that someone else tells about parents like me.

All of these stories—of termination, of being unsure that one can handle having a child who is diagnosed with some unexpected condition, of hard moments, of hating what a disability can do to body and spirit, of parents who love our children as they are and also long for them to be healed—are, as Julia Miele Rodas so eloquently said, “complex and open-ended.” They are not morality tales. They do not have neat, happy endings. They are full of paradox and contradiction. And too often, those who tell such stories are silenced or ostracized by others concerned that these stories provide fodder for the “opposing team” in debates over disability, illness, suffering, and the promises and pitfalls of medical, reproductive, and genetic technologies.

But these stories are true, and therefore necessary. As long as we insist on only telling stories that fit neatly into either the illness or identity narratives (and not both), as long as advocates for a cause only allow stories that fit their notion of what makes a “good” story, we will not make progress in our efforts to promote the wonderful gift of human diversity and offer critical commentary on modern medical technology. As long as we insist on taking sides and refusing to hear stories that don’t fit our preconceived notions of how things should be, conversation around these pressing issues will be just another sideline skirmish in the culture wars, in which we lob conflicting versions of “the truth” at each other, refusing to admit that the truth is rarely as clear-cut or obvious as we portray.

If a primary goal of advocacy is to insist that society see people living with disabilities as fully human, let’s start by allowing people to tell true stories that bear the marks of that humanity—tension, paradox, regret, pain, and grief as well as joy, success, happiness, love and accomplishment.

About Ellen Painter Dollar

Ellen Painter Dollar is a writer focusing on faith, parenting, family, disability, and ethics. She is the author of No Easy Choice: A Story of Disability, Faith, and Parenthood in an Age of Advanced Reproduction (Westminster John Knox, 2012). Visit her web site at http://ellenpainterdollar.com for more on her writing and speaking, and to sign up for a (very) occasional email newsletter.

  • DaveP

    > But these stories are true, and therefore necessary.

    I disagree. For example, it is true that Santa Claus doesn’t exist, but telling children that truth is not necessary.

    Also, stories often determine the truth. A person who goes around saying that no one likes them, ends up with no friends. A person who goes around saying that everyone likes them, ends up with lots of friends. A person who tells depressing stories, depresses the people around them. A person who tells happy stories, cheers up the people around them.

    There are an infinite number of stories. The ones we choose to emphasize affect how we and others see the world — the stories help create the truth. I think that someone who emphasizes stories about aborting children with Down syndrome, is causing more Down syndrome children to be aborted.

    • http://www.ellenpainterdollar.com Ellen Painter Dollar

      That’s precisely the fear of those who were upset with Amy Julia for publishing the story she published. But I absolutely disagree. As any alcoholic family learns eventually, keeping secrets doesn’t do much for the family’s health and well-being. Likewise, refusing to tell stories about pregnancy termination (especially given that they are far more common than the alternative) keeps the issue hidden, cloaked in shame, regret, secrecy, guilt, and accusation. Bring those stories out into the light, allow them to be told honestly and without judgment, and it allows everyone (those who hear the stories as well as those telling them) to see more clearly what happened. Part of what happens when people get a prenatal diagnosis is they only hear one story—the “this is a terrible burden and it’s best to terminate to avoid that burden” story. I think that if they heard other stories, about families living and thriving with that condition as well as about people who made termination decisions, they would have a MUCH fuller picture of the decisions they face and the ramifications of those decisions.

      • DaveP

        > That’s precisely the fear of those who were upset with Amy Julia for publishing the story she published.

        The people who were upset were correct.

        Scientific studies show that people who are exposed to negative stories are more likely to react negatively (i.e. more likely to abort Down syndrome children), while people who are exposed to postive stories are more likely to react postively. So including stories about Down syndrome children being aborted is more likely to lead to more Down syndrome children being aborted. Telling stories has a purpose: the stories we choose to tell today affect tomorrow’s behavior.

        For example, here is a recent study from Stanford showing that just as negative video games are more likely to encourage agressive behavior, positive video games are more likely to encourage altruistic behavior.

        “Stanford experiment shows that virtual superpowers encourage real-world empathy”
        http://news.stanford.edu/news/2013/january/virtual-reality-altruism-013013.html

    • http://www.ellenpainterdollar.com Ellen Painter Dollar

      I would add also that I’m not advocating “emphasizing” stories about termination. I’m simply advocating including them, along with other stories, such as those of how life iwth Down syndrome, for example, is not the tragedy that many people believe it is.

    • http://prinsenhouse.blogspot.ca/ Jeannie

      I see where you’re coming from with this comment, Dave P, but I feel differently as well. I think we need a combination of truths to get the whole picture. Yesterday Ellen was talking about the book “Far from the Tree”; I’ve been reading it too and trying to write a review of it for my own blog. One of the quotes I like best from it is the words of a father of a deaf child:

      “When you have a disabled child, you say either, ‘I’ve got this new asset in my life who is going to make me happy and proud,’ or ‘I’m enslaved by my child who is going to be full of needs until I get so old and exhausted that I fall over dead.’ The truth about this situation always involves both.”

      I have 2 special-needs kids and I totally agree with what this dad says: I feel both the joy & pride AND, sometimes, the sense of being trapped for life. I do think that ultimately we choose which side is going to be our PRIMARY story (which I think is kind of what you mean by “stories determine the truth”) and I also think we need to be careful who we tell each story to, and how and when (it might not be necessary to tell a 6-year-old Santa doesn’t exist, but it might do a grave disservice to a 16-year-old who believes in Santa if we don’t tell him). But ultimately I think we need to hear all sides. How can I ask for help if I never admit it’s really, really hard? How can I let another struggling mom know it’s OK to struggle if I don’t let her know I find it hard? Conversely, how can I give hope to someone whose child has just gotten an Asperger diagnosis if I don’t say my daughter has amazing gifts and skills? I could go on & on here but I just want to say yeah, I hear your comment but ultimately I think the full range of stories is best.

      • DaveP

        > but it might do a grave disservice to a 16-year-old who believes in Santa if we don’t tell him

        I wonder if God as described in the Bible is any more real than Santa.

        I’m not sure that the reality or unreality of the things we tell stories about has anything to do with the good or bad that comes out of them.

        For a recent example, some people would say that the story about the peanut-butter-sandwich-kiss-of-death (where a girl died of a peanut allergy after kissing her boyfriend after he ate a peanut butter sandwich) was a good thing because it showed the danger of food allergies. Other people might say that story is a bad thing, because actually it never happened and no one in the US has ever really died of a peanut allergy — and peanut allergies have been shown in study after study to be mainly psychological and induced by all the erroneous hoopla over peanut allergies.

  • http://timfall.wordpress.com/ Tim

    It gets me why some people think they can pick and choose for others what stories are appropriate to tell. I think it’s yet another way that we degrade those made in God’s image, since the One whose image we bear is called the Word. God is, among other things, about story for crying out loud!

    Cheers,
    Tim

    • http://www.ellenpainterdollar.com Ellen Painter Dollar

      Yes! And in a related sense, think about how many Biblical stories are about highly unsavory things. Somewhere in those unsavory stories about genocide, adultery, and murder are truths that we need to live a life of truth, grace, and love. That’s why I think we need to be open to many kinds of stories in order to see the important truths that they point to.

      • DaveP

        > That’s why I think we need to be open to many kinds of stories in order to see the important truths that they point to.

        I agree. But I think we also need to keep in mind that stories have consequences, and consider whether the stories we choose to repeat will have the consequences we intend to occur.

    • DaveP

      > It gets me why some people think they can pick and choose for others what stories are appropriate to tell.

      That’s the only reason Christians think that Jesus is God. The New Testament writers could easily have filled the same number of pages with a daily catalog of all of Jesus’s bowel movements. But they picked and chose differently.

      > God is, among other things, about story for crying out loud!

      God is all about specially picking and choosing for others the stories that are appropriate to tell.

      For example, please cite a single reference to one of the roughly 10,000 bowel movements Jesus would have had in a lifespan of about 30 years. A more accurate exploration of Jesus’s bathroom habits would have done a lot towards making him more human, but they would have to cut stories that made him more God-like.

      Just as including stories about aborting Down syndrome children means cutting stories about keeping Down syndrome children; people can handle only a finite number of stories.

      Notice how I’m not making a judgment about whether aborting Down syndrome children is good or bad. In fact, if you consider it a good thing to abort Down syndrome children, then it would be good to displace stories about keeping Down syndrome children with stories about aborting them.

      • http://timfall.wordpress.com/ Tim

        So Dave, when I said I couldn’t understand why some people feel free to tell others what stories are appropriate, I suppose I should have said that God is the exception. He can tell anyone what to do. But the rest of us aren’t God, so with that amendment I will let my original comment stand.

        ;-)
        Tim

  • DaveP

    > But the rest of us aren’t God, so with that amendment I will let my original comment stand.

    Actually, I’d really enjoy hearing a sermon on “The 10,000 Bowel Movements of Jesus: Where Were They Then, And Where Are They Now?”. :)

    Historical note: the Dead Sea Scrolls have some pretty amusing rules regarding bowel movements. If I remember correctly: the only property owned by members of the Qumran community were a cloak and a spade, bowel movements had to be at a minimum distance from the community, and defecation was not allowed on the Sabbath.

  • http://olderthanjesus.blogspot.com Alison Hodgson

    Thanks for having this conversation, Ellen. I have a son with a multiplicity of special needs. My brother is a filmmaker and is doing a short documentary about my boy becoming a man. I was a terrible interviewee. I am ruthlessly honest with family and friends but I was very careful about what I said on camera. I realize what I say helps tell my son’s complex story first and foremost to him. How important is our parents’ belief in us.

    In living, the answer is the two part invention of mourning our sorrows fully and continuing to hope, still.

  • Theodore Seeber

    “No one is going to hear those stories and say, “See?? Little boys are so difficult. People should terminate pregnancies with little boys so they won’t have to deal with all this hard stuff.””

    Don’t be so sure. In a culture where sanctity of life is almost unheard of, there most certainly ARE people who will do that. Just as there are people who abort every girl they see on the ultrasound.

  • http://OneFamilyManyFaiths.blogspot.com Y

    Bravo! What you say here also applies to our myths about marriage and child-rearing, in general. It seems to apply to relationships with “God” too. Thank you for your insights.

  • mpope

    i was stopped at a red light in front of a Catholic parish while a bright and festive wedding party was making its way from the church to the sidewalk. There was a handsome young man in a sharp-looking suit coming down the steps, surrounded by a small throng of lovely young women– both bridesmaids and guests– all of them cheerful and chatty.

    it was a mesmerizing sight– the light turned green and the driver behind me honked his car horn for me to move on.

    as i drove through the intersection, i started to cry. i cried so hard, i had to pull over a few blocks away.

    that wedding scene was the single moment of grief i ever felt about my daughter, who was then, 2 months old, asleep in her car seat in the seat behind me. it’s the only grief i have ever experienced about her Down syndrome. the grief reached far and deep inside of me. it felt like it could be devastating. i cried for a while. i prayed. and then i drove home.

    the handsome young man on the sidewalk, coming out of the Catholic wedding, surrounded by lovely, attentive young women, had Down syndrome. attentive and chatty as the young women were, he would never marry any of them.

    a few moments after my daughter was born, my husband, baby and I were suspiciously abandoned by the entire birthing room team– except for one nurse. when i looked down into my daughter’s face, I told my husband, “she has Down syndrome.” the nurse began talking a mile a minute about proper diagnosis and the need for karyotyping and blah blah blah. i interrupted her, “no. she has Down syndrome.” the nurse stood there stunned and silent. My husband looked at our girl and said, “Yeah. i think she does.” we both looked at the stricken nurse and said, “It’s OK.”

    she said, “Really?” and she started tearing up. we said, “Really. she really has Down syndrome and it really is OK.” the poor nurse rushed out of the room sobbing.

    recently (almost 7 years later) the local Down Syndrome Support Team called me and asked if I had any suggestions about what to put into a packet for doctors called, “telling your pregnant patient about a Ds diagnosis” the question: what can doctors do to help deliver the diagnosis of Ds to their pregnant or newly birth patients? I wrote, “Have balloons and a cake.” They didn’t include that suggestion.

    When it comes to people-grappling-with-Ds-diagnosis stories, I’m no help. i think it’s because i had a friend when i was growing up who was quiet, kind, and smart. she thought i was funny. she had Ds. as a grown up, i still have friends who have Ds.

    Down syndrome isn’t a disease. and without the least romantics, i even have a hard time calling it a disability. i don’t hate it at all. i do hate cancer and AIDs. because i know people who suffer, i also hate Crohn’s disease. and mostly i hate– that’s HATE– addictions, which , seem to me, to be the most viciously frustrating disability suffered by so many people these days.

    but of all the stories– the ‘I overcome’, ‘ I grapple’ , ‘I am being crushed by this’, etc.– which stories are helpful to me personally? the stories where the guy gets on his knees, and when he gets up, he’s determined to do good.

    the stories where the guy’s grappling results in a resolution to do evil (followed by no repentance) aren’t helpful to me at all. in this, I’m not influenced by some romantic notion of disability. I’m influenced by the Gospel.

    • http://www.ellenpainterdollar.com Ellen Painter Dollar

      Thank you for these thoughts. Lovely.

  • Karen

    Stories about the difficulty of living with or raising children with disabilities are important for one reason no one has mentioned: the purely optimistic stories are lies. There is a very good reason English speakers describe these conditions as “disabilities,” and that reason is that the impair a major living function of the person who has them. They are not insurmointable by any means, but they exist, and those tasked with caring for sufferers must understand that fact. I’m sure that most people with DS are kind and loving. I am also certain that a significant number never learn how to use the toilet by themselves. Parents of DS kids have to know this and be prepared for it.

    I used to work as a lawyer enforcing the Texas Law requiring that public accommodations for people with disabilities. I found that I got the most cooperation when I presented exactly and realistically why the accommodations were necessary, instead of the rosy “Blindness is No Big Deal!!” fantasy usually shown by advocacy groups. People with diasabilities and their families need a lot of help, and if we only talk about the flowers and sunshine and rainbows part of their lives, they won’t get that help. I have to think that the best things DS advocates could do to reduce the number of abortions resulting from prenatal tests is to make the actual, physical, day-to-day lives of the kids and their families easier. Better schools, better accommodations, MORE HELP, flexible job schedules and good medical care are more important for this than 5,000 repetitions of how kind and sweet some individual DS kid is.

    • http://www.ellenpainterdollar.com Ellen Painter Dollar

      My guess is that many families with kids with DS would agree that talking about day-to-day realities, including the need for help and accommodation, is vitally important. I think some are afraid that by doing so, by talking about how difficult things can be WITHOUT help (or even with it!), they are feeding into the idea that life with DS is so hard that termination of pregnancies with DS fetuses is preferable. But yes, I fundamentally agree with you that ALL stories need to be part of the conversation, the stories that talk about that parents tell about the pleasures of life with their children and the ones they and their children can tell about how much better things can be when they get the help they need.

  • http://www.withouthavingseen.com Ryan Haber

    Ms. Painter Dollar writes, “Amy Julia told me, however, that she received some private correspondence from advocates for people with Down syndrome who disagreed with her decision to post the story. The irony, of course, is that 75 to 80 percent of women who receive a prenatal diagnosis of Down syndrome choose termination. So the most common story is, in the eyes of some advocates, the very story that should not be told.”

    But you make an obvious mistake in your sense of irony. The “advocates” who do not want the “narrative” of eugenic selection legitimized are not advocates for eugenic selection. They are advocates for persons with Down Syndrome, and the value of life with Down Syndrome. They are not advocates for created corpses that had Down Syndrome.

    Termination is a euphemism. If you love somebody, and want what is best for them, you do not kill them. You help them.

    My sister has autism, and not the kind that makes you a little odd or the kind that lets you count matches really quickly. She has the kind of autism that makes you crap yourself at the age of 29, the kind that leaves you apparently unable to relate to people in anything like an ordinary interpersonal way, the kind that means you have to be trained kind of like an animal, rather than educated like a child, because nothing else seems to work.

    The mystery of human life is that we never really know what’s going on inside of another person’s head. We talk with people who seem attentive, and at times, find ourselves wondering if perhaps they are actually distracted. People dream and cannot in three hours time report a single thing they dreamed, often as not. Other times, we repeat a task mindlessly and cannot remember having done it, though we never lost “consciousness.” Time and time again, people come out of “persistent vegetative states” only to apprise us of all they were thinking and feeling, of all they heard and saw. I do not know what is my sister Keelin’s head. Even about her own subjective “quality of life,” I just cannot say anything.

    What makes life worth living is loving and being loved. We love Keelin and make her life as good for her as we can. And she, maybe without even knowing it, returns the favor.

    The whole implication that killing Keelin, or you, or anyone else in the womb would be mere “termination of a pregnancy” is a revolting dissimulation unfit for adult discussion. That particular view point has plenty of federally funded advocates of the likes of Planned Parenthood. Chatter about quality of life is, in the context of prenatal screening for the purpose of “terminating the pregnancy” is eugenics, plain and simple. Human beings are not dogs such that we just put down the ones that aren’t purebreds. Advocates for those with Down Syndrome see that. Funny that someone with a disability, of all people, should not.

    All of that said, I agree with the comments above, and one of your other points, that only providing a “Down Syndrome is No Big Deal” perspective is false. My sister’s autism is a very big deal. It has impacted her life in every dimension, and the lives of all her families and neighbors significantly. Any convincing advocacy has to be grounded in truth, because nothing dissuades like a lie found out. Moreover, the whole point is to show the truth, that life – even imperfect life – is good. The quest for an “good standard of living” is based on a false premise if it refuses to tolerate the possibility of a life with hardship. There has never been a life that hasn’t entailed hardship. The means of solid advocacy must be to show the goodness and joy of a life well lived, and to show that such life is always possible, under any circumstances.

    • http://www.ellenpainterdollar.com Ellen Painter Dollar

      “Human beings are not dogs such that we just put down the ones that aren’t purebreds. Advocates for those with Down Syndrome see that. Funny that someone with a disability, of all people, should not.” – If you believe that I am advocating for termination, you have grossly misread this post. I am merely saying that hiding the stories of abortions away is not a way to greater acceptance, understanding, and dialogue around how we can learn to value all people for who they are. We cannot make progress if we don’t understand the truth of what is currently happening. And stories of those who choose abortion are part of that truth, and need to part of the conversation.

      • http://www.withouthavingseen.com Ryan Haber

        Ms. Painter Dollar,

        Yeah, I didn’t think you were advocating for abortion, definitely not. We have to be careful of buying into the terminology of abortion advocates though. Terms like “terminating a pregnancy” are euphemisms by way of glossing over what happened, what was intended. Live birth terminates a pregnancy, as does spontaneous miscarriage. That’s not what a procured miscarriage, an abortion, is.

        • http://www.ellenpainterdollar.com Ellen Painter Dollar

          Point taken. Finding the right words is hard.

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