Neurodiversity

Caregiver angst writing

The recent explosion of the #youmightbeanautismparentif tag on Twitter and the Stephanie Rochester case are two good reasons to spend some time thinking about the “caregiver angst” genre: writing by parents and caregivers about pain, stress, grief, worry, and exhaustion—all usually assumed to be associated with caring for someone with a disability.

A lot of the writing on this theme is blatantly offensive and inexcusable (people with disabilities are a burden, are ruining my life, are keeping me from living the life I was supposed to have, etc.) A less hateful version includes the writing about how painful it is to watch the suffering of someone you love.

Writing about a difficult, isolating experience can help other people feel less alone. I did a lot of this kind of writing when I started this blog. Many people find catharsis and community in writing about their struggles as a parent.

But I am not interested in catharsis or community for one group at the expense of another whole community’s safety, and I have come to believe that a lot of the caregiver angst writing contributes to an unsafe environment for people with disabilities. There’s always a way to write about your life without reinforcing damaging ableist attitudes — as long as you (1) think through the ways in which ableism informs your experience as a caregiver, and (2) take the time to put your experience in context when you write about it. Unfortunately, most of the writing I’m talking about (including much of my own writing from a year ago) does neither.

s.e. smith’s recent essay on Pity Porn and Social Responsibility helped me understand why the lack of context to most caregiver angst bothers me so much: it reframes societal problems as individual problems.

smith uses the example of a newspaper’s charity fund appeal for a “family in need.” The story includes photos of sad hungry children, and at the end it asks readers for a donation for food or Christmas gifts. But it does not examine the societal problems that lead to food insecurity—hunger is framed as an individual problem with an individual solution. Give some cash, and then disengage.

Most parenting blogs are not fundraising appeals or advocacy writing. But they are full of personal narrative—lots of story, very little context. Most of them are not in the business of social analysis, proposing solutions, or issuing calls to action. It’s a different writing style, and it has a different formula and different goals.

There is nothing inherently wrong with personal stories, of course. But the cumulative impact of all these stories without social context is to reinforce the dominant narrative about what it’s like to care for someone with a disability.

Context is the difference between saying “I’m exhausted,” and ”I’m exhausted because our HMO offers no services for pediatric mental health, but forced me to fill out reams of paperwork and wait months to get appointments with a dozen gatekeepers, each of whom is 90 minutes away from me on public transit, just so they could tell me they actually don’t provide those services anyway.”

The first statement (“I’m exhausted”) describes an individual problem. It ignores the role that institutional structures play: a health care system driven by profit; an educational system designed for the able-bodied and typically-wired; an economic system that assigns zero value to the work of raising children and requires parents to work for pay to survive; the segregation, exclusion, and resulting invisibility of people with disabilities, which frames disability as a rare and tragic stroke of bad luck rather than a normal part of human diversity; the American belief that everyone “deserves” a life free from the “burden” of caring for another person.

These are collective problems, societal problems, and my exhaustion would not exist, or would at least be very different, without them. When I write about exhaustion without acknowledging that context, I reinforce a particular set of beliefs about people with disabilities—ideas that are damaging, dehumanizing, and already way over-represented in the media. It’s the set of beliefs used to justify the abortion of babies with Down syndrome and the abuse and even murder of children with disabilities, because it is widely perceived to be “so hard, so painful, such a burden” to care for them.

I am not placing the blame for Stephanie Rochester’s murder of her son on negative writing about autism on parent blogs. It’s much more complicated than that, of course (more here and here). Stephanie Rochester was mentally ill, and postpartum depression likely played the biggest role. But the context surrounding the murder includes all the societal problems I described above, and caregiver writing that does not examine that context contributes to the problem.

And so, back to #youmightbeanautismparentif on Twitter—the ultimate no-context medium, in which every tweet is a tiny personal narrative.

Not every tweet was offensive. Some parents had positive, goofy, sweet, or proud things to say about their kids. But a very unscientific random sample over the course of just a few hours also included these:

● #youmightbeanautismparentif you worry about the toll caring for your child 24hrs a day FOREVER will have on your marriage

● #youmightbeanautismparentif you say TGIM instrad of TGIF

● #youmightbeanautismparentif Ur child is non verbal, and when you hear other autistic kids speak, u wonder if you drew a short straw :/

● #youmightbeanautismparentif you cracked a front tooth when you clenched your teeth to avoid yelling at your kid who was on your last nerve

● #youmightbeanautismparentif You never think you’ll be partnered again because no man will want to take on the extra responsibilities of Autism

● #youmightbeanautismparentif you’ve given up hope of a full night’s sleep

● #youmightbeanautismparentif you’ve stopped buying things for your house because you know whatever it is will be wrecked within an hour

● #youmightbeanautismparentif watching your 3 1/2 year old flap breaks your heart

This last one, in particular, desperately needs some context. There is a big difference between saying “It breaks my heart that my child is autistic” and “It breaks my heart that my child—who is perfect exactly the way he is—will grow up in a world that sees him as less than human; that will define him by his “deficits,” rather than his strengths; that will bully and shame him into modifying his behavior; and that will force him to internalize judgments made against him until he loses his sense of self.” But without context, this tweet will almost certainly be read as “I’m sad that my son is autistic, because that’s an inherently sad state of affairs.”

I know lots of parents felt a great sense of community from the Twitter exchange. The positive tweets probably outnumbered the negative ones; I didn’t have the stomach to read and count them all. But I don’t feel a sense of community from a group of people venting about how awful it is to have a kid like my son, about how autism has ruined their lives. It makes me sad, angry, alienated, and confused about whether there’s a place for me in that community at all.

The solution is not to gloss over, sanitize, or stop writing about difficult times. Everybody has bad days, and we all have the right to describe our experience. But I have come to deeply regret my own past failures to examine the context behind those bad days.

What I’ve learned from my mistakes is that I’m no longer interested in reading or writing about exhaustion, stress, and grief without also addressing the context that gives rise to these feelings. Context places blame for our struggles squarely where it belongs, and eliminates the possibility that it will be mistakenly assigned to our children.

Sarah Schneider blogs at Kitaiska Sandwich.

Caregiver angst writing appears here by permission.

Sarah Schneider on 12/21/11 in featured, Language | 3 Comments | Read More