Disability is the last acceptable prejudice.
Given that unlike race or gender, disability is an identity that any person, even those with years of able-bodiedness behind them, could end up inhabiting unexpectedly and without choosing to, one might think that people would be especially sensitive to how disabled people are dehumanized and marginalized. But even people who consider themselves progressive, who rail readily against racist or anti-feminist language, retain a blind spot when it comes to how they talk about people with disabilities.
“Ableism”— a bias against disabilities and people who have them, which often assumes that disabled people aren’t really like other people (we are cast as heroic or pathetic, rarely as mostly ordinary) and that life with a disability is always tragic, or at least the cause of such obvious daily suffering that it should be avoided at all costs—is a word I wouldn’t have used for most of my life. But after writing about disability for more than 10 years, I’ve seen ableism too often to ignore it.
A progressive author jokes about juggling midgets. When I point out that this is offensive, he asks sincerely, “Should I have said ‘little people’ instead?” Another time, he tweets that people who have made a foolish decision should be put on the “short bus,” and when readers decry that language, edits the tweet to say that they should be lobotomized.
A friend posts an inspirational video about a woman with multiple sclerosis who claims that she can still walk, rather than using a wheelchair, because of her self-designed diet and exercise regimen. The video is introduced with the comment, “You can choose to be healthy.” I respond that the post is ableist; it implies that all people with disabilities need do is make better lifestyle choices to nip our impairments in the bud, and is ignorant of the fact that for many disabled people, wheelchair use is not a sad last resort, but a welcome tool enabling greater independence and mobility. My friend and other commenters are truly mystified by my perspective.
A writer posts an essay on a popular parenting site about how her mother’s physical disability renders her unable to grandparent the way the writer wants—unable to babysit, carry, and play actively with the writer’s toddler. The writer notes that her mother has bought them baby equipment and interacts with the child down on the floor, which is accessible to both grandmother and child, but focuses on her own grief that things aren’t how she wants them to be. The subtle ableism in the piece bothers me—the writer states that her mom was a good parent “despite her difficulties,” and assurances late in the piece that she is indeed grateful for what her mother can do feel tacked-on. It doesn’t help that the writer insists in the essay, and in a response to my polite but critical comment, that there are no online resources for how to care for a child when one has a disability—which is simply not true. As a reality check, I send the piece to a friend who regularly writes, speaks, and posts videos about how she and her husband, who both use wheelchairs, care for their two active children. Am I being too sensitive here? No, she responds. And once again, she adds, it’s clear that loving someone with a disability doesn’t guarantee that a person won’t adopt ableist assumptions about how the world should work.
This past week, I witnessed less subtle, more sickening ableism at work in the comments to a New York Times opinion piece by Sheila Black titled “Passing My Disability on to My Children.” It was a terrific piece, and one I could relate to because Black’s genetic condition has similar symptoms to mine (short stature, musculoskeletal impairment, and pain). I have written in in my book and elsewhere about the wrenching ethical and emotional questions that accompanied our decision to have biological children with a 50 percent chance of inheriting my bone disorder, osteogenesis imperfecta.
Many comments on the piece were horrifying—I know, I know, don’t read the comments. I shouldn’t, and didn’t, expect any different. But given that the New York Times has a progressive, liberal audience and at least some comment moderation in place (it’s not YouTube), the number of offensive comments was depressing. Readers called people with disabilities burdens on their families and the state, and special education a “stain” on municipal budgets. Many commenters made sweeping, assumption-laden statements about all of the disabled people who are stagnating in their lonely lives wishing they had never been born. A disproportionate number of people with disabilities are indeed unemployed, poor, and isolated, but this is a result of deficits in our willingness and ability to provide support, not an expression of some innate existential despair that automatically accompanies life with a disability. I responded to one commenter who invoked the “thousands” of people wondering “Why did this happen to me?” by saying that I dared him to find a dozen, much less a thousand, people with disabilities who would express such regret for their own existence. Another reader called Ms. Black selfish for bearing children with a form a dwarfism, given that people with dwarfism are discriminated against; I responded that discrimination is not actually our problem, as disabled people, to fix by rendering ourselves obsolete. And then I stopped reading and responding because doing so was too sad.
The question of why disability is the last acceptable prejudice among otherwise progressive folk requires an essay of its own, but I can suggest a few reasons. This prejudice is, of course, rooted in centuries of human civilizations that have seen people unable to survive and thrive without assistance as a liability to families and societies, and that define the “good life” solely in terms of economic productivity and independence. (I’d argue that such definitions are as anti-Christian as they come, but that’s also another essay.)
These days, bias against disability is also rooted in cultural mores that favor DIY approaches to everything, including our health, and are distrustful of traditional authorities, including doctors and Big Pharma. We are prone to revering so-called natural cures over medical ones—never mind how confused this argument is, given that many traditional medicines are derived from natural sources and, as essayist Eula Biss put it so well in her book On Immunity, “the use of ‘natural’ as a synonym for ‘good’ is almost certainly a product of our profound alienation from the natural world.” We begin to see those who require traditional medical interventions to survive and thrive— drugs, equipment, surgeries—as living compromised, unsatisfying, powerless lives because they’re not fixing their own problems with their own resources, as any empowered 21st century person should do. We turn to trendy diets and punishing exercise routines with the convert’s zeal that finally, we’ve found the key to optimum health. We begin to believe that physical and cognitive impairments can be overcome, or at least minimized, with enough effort, empowered self-determination, and the right combination of herbs and foods and fitness routines—an argument that my friend’s video about the woman with MS made explicit. As I wrote several years ago for Sojourners:
[A]ll it takes is one post about how honey and cinnamon will cure arthritis to make me feel like a fool duped by Big Pharma and the medical establishment, when all along the answers to my health problems were sitting in my pantry. Besides giving dubious health claims street cred, the Internet allows self-appointed gurus to spread an insidious social hierarchy, in which health becomes the measure of one’s willpower, smarts, and achievements, an indication of whether you are living rightly or wrongly.
A significant motivation in my own writing about life with a disability has been to push back against prejudice by telling my story. Mine is not a straightforward story, neatly packaged to provide a consistent narrative of what disability is and what it means.
I tell my story of a life richly and happily lived to counteract the prevailing narrative that life with a disability is one of unending suffering, pain, and regret, that the lives of people whose bodies and minds don’t work according to our notions of what is good and normal are not as valuable, productive, or desirable as the lives of people with perfectly healthy bodies and minds. People with perfectly healthy bodies and minds, of course, don’t actually exist, and even the most able-bodied among us today could end up with a disability tomorrow.
I tell my story of a life that is indeed scarred, and not just physically, by pain and limitations that can make life really hard. I tell this story to counteract the prevailing narrative in some corners of the disability rights movement, where advocates insist that disability is entirely socially constructed, that bodies and minds that hurt and impair people’s ability to engage in the most basic of human activities are simply one more value-neutral expression of human diversity. I’ve been chastised for describing—and grieving—the pain and difficulty caused directly by my and my daughter’s shared disability, pain that exists regardless of how other people see us or how accommodating our community is; some have seen my honesty as devaluing all disabled lives and playing into cultural narratives that identify disabled people as burdensome, better off dead or never born at all.
I tell my story to let people know that I am grateful for my life and all of my children’s lives, including the daughter who inherited my bone disorder. I know that much of the strength and wisdom she and I possess stem directly from our experience of disability, and I am grateful for that too. At the same time, I hate the very real pain and limitations we live with, and if I had a magic wand to wave to make them go away, I’d use it. Some disability advocates find that sentiment offensive, but it’s simply the paradoxical truth.
In the musical Hamilton, Aaron Burr says, “The Constitution’s full of contradictions!” and Alexander Hamilton responds, “So is independence. We have to start somewhere.” In the face of entrenched prejudice and misunderstanding about disabilities and the people who live with them, we have to start somewhere. I’ve chosen to start by telling my story, with its contradictions, over and over and over.
So it is with some grief and trepidation that I’m publishing this as my last post for my Patheos blog. For the foreseeable future I won’t be writing regularly, about my story of disability or anything else, here or elsewhere. I’ve decided for the sake of my family’s finances and to be honest, my own sense of worth and motivation, to return to a regular full-time job. In just a few days, I will begin work as an office manager/assistant to the rector at a local Episcopal church—not mine, but one I know fairly well.
While I will always consider myself a writer and expect to still write an occasional article, and maybe even another book, realistically, I’m unlikely to have the time to write frequently. I’m also relieved to turn to a different kind of work.
My writing in recent months has stagnated, as is clear from how seldom I’ve posted here in 2016. The state of the professional writer is another topic that deserves its own essay, so I’ll just say that the frustrations of this work have sapped my energy for it: the dearth of paid writing jobs in an online world where readers expect free content and editors can find aspiring writers willing to write for free in return for a nebulous promise of building the writer’s platform; the fact that even paid writing jobs are rarely well or fairly compensated; the enormous lag time between when I write something and get a check for it (as long as 6 to 8 months in the case of some print publications); and the fact that because Patheos bloggers are paid based on page views, the only way to get paid regularly for my posts here is to write stuff that gets lots of clicks. In today’s market, that means quickly considered “hot takes” on the news of the day, controversial opinion pieces, or easily digested, short, image-heavy slideshows. That’s not what I want to write, and not what I’m good at writing. I’ve spent far too many hours sitting at my laptop avoiding the hard work of putting ideas into words, because I’ve lost sight of what concrete, measurable difference doing so will make in my career and my family’s life.
I think the hardest thing for me to leave behind (for now) is the opportunity to tell my story in the face of ongoing, often unrecognized, bias and misinformation about what it means to live with a disability. I’m encouraged, though, when I remember that the thousands of words I’ve already written are still available to those who want to read them; I was gratified when one commenter on the New York Times piece mentioned my book by name and encouraged others to pick it up.
I’m excited by the possibilities of this new job to energize my working hours, not to mention help pay for things like summer camp and college. No matter how I’m spending my working hours, I remain committed to telling—and believing—the better story.
My web site will remain up, and I plan to redesign it to incorporate a blogging function, so that I can occasionally post something. For now, my professional Facebook page will stay up as well, although I will use it mostly for sharing other people’s content instead of my own. I’m still maintaining a mailing list, which you can join by sharing your e-mail under the “E-mail Newsletter” section, in the right sidebar of my web site (at my author site at www.ellenpainterdollar.com, not this blog). If/when that next book happens, I will use the newsletter mailing list, my web site, and my Facebook page to let you know. (If you sign up for the mailing list, I promise you won’t get frequent e-mails from me, and I won’t share your contact information.) Thank you for supporting my work by reading, sharing, and commenting on what I’ve written here and elsewhere.