This post was originally published on Claire Crisp’s blog.
I confess that I’m conflicted. Now, this isn’t a new phenomenon for me; I’m actually conflicted quite a lot. But today I find myself especially conflicted as the parent of a disabled child.
In particular, I feel torn between two opposing views, both of which I partially resonate with. And many days I’m not sure how to live in that uncomfortable space pulled between the two.
One view is perhaps nicely captured by this post over at the Huffington Post, written by another parent of a disabled child. Here’s just a snippet:
We hear it on occasion from strangers, kudos for parenting Max. Chances are, if you’re the parent of a child with special needs you’ve heard it, too, especially that well-worn phrase “God only gives special children to special people”…. What I don’t need is acknowledgment from strangers who assume we rock just because we’re raising a child with disabilities…. Putting a halo over the heads of special needs parents could actually do kids harm.
(In passing, I remember a similarly structured event a few years ago. My wife was doing something with friends on a Friday night, so I was taking our three kids to our son’s flag football game. I had all three of them at McDonald’s and at least two people, seeing me with my young kids and with no wife in sight, felt the need to tell me “you’re such a good dad.” Part of me thought that if I was such a good dad, I wouldn’t be feeding them McDonalds. Slightly more seriously, I wondered “I’m a good dad because I’m spending time with and feeding my kids?” Um, no. And I couldn’t help but think that if I’d been female rather than male they wouldn’t have said anything or even had that thought.)
There is much in this kind of response to being the parent of a disabled child that I want to reject. The theology in it is horribly problematic. And I’m not a good parent simply for having a disabled child.
Or, expressing a similar view, see this post by Miggy, who I think is a wonderfully blogger and advocate. (Miggy interviewed me about my son a few years back, which you can read here.) Miggy and her daughter ‘Lamp’ both reject pity as the proper response to Lamp’s limb-difference:
Pity stems from judgment. Pity looks down on you and judges your life and your circumstances to be so far gone that it must be completely incompatible with happiness. Pity assumes the worst. It seems to me that empathy and perhaps sympathy tend to happen as we listen to others, as we hear where they are coming from and respond accordingly, i.e. mourning with those who mourn. But pity isn’t listening, it isn’t responding or interacting, pity only judges. And that judgment is usually damning…. To tell Lamp you feel sorry for her is to tell her she’s not enough, that there is something intrinsically wrong with her, that she is not capable, that being herself is a negative thing and on and on and on.
Do not pity us, this line of thought goes, because pity involves a negative or condescending judgment of someone’s value. Pity, on this view, is a negative emotion that often leads us to be contemptuous of another’s experience. This line of thought is what’s behind the title of a book that I’ve been reading the last few months, both for my own sake and as part of my scholarly work: Joseph Shapiro’s No Pity. It’s the history of the disability rights movement in the United States and beautifully—and heartbreakingly—illustrates how our society looks down on and undervalues the lives of those with disabilities. Shapiro, much like Miggy, wants nothing of pity.
So, on the one side, I feel the weight of those that ask not to be pitied—because pity as a kind of judgment about the value of another can be a weapon. It can be a weapon to divide, to exclude, to further isolate people and their experiences. Historically, it has often been used to justify oppression and to rationalize mistreatment. And especially because this view—the view that pity is bad—is so often rejected by those who are themselves disabled or those who love and care for those who are, it’s a view that I want to take very seriously.
But I have to confess that I’m conflicted because I can’t entirely endorse the kind of antipathy toward pity expressed in that view. I can’t endorse it, in part, because of my own experience being the parent of a disabled child. Parenting any child is often difficult; but there are experiences involving our son that are especially difficult. There is a difference between our son and his sisters who, in their typicality, effortlessly pick up skills that he’s had to work for months or even years in therapy to develop.
I can’t fully endorse the rejection of pity because I know parents who have uprooted their lives, given up better jobs and nearness to family, to move to new locations that would be better for their disabled children because they had better access to healthcare or therapy or. Granted, many parents make sacrifices for the good of their children. But there are certain sacrifices that are more common for parents of disabled children.
I can’t fully endorse the above view because I’ve seen how many schools systematically exclude the disabled. I’ve seen the countless hours that are often needed to fight to get a school to even give a kid a chance in a general-ed classroom despite the protections that are supposed to be afforded by state and federal law. I’ve seen the way that districts uses parents’ ignorance and trust to avoid having to do what the law requires for special-ed, and then use guilt as a weapon when the parent actually begins to push back.
I can’t fully endorse the above view because I don’t think that pity is always a bad emotion, even when aimed at other people. I think it can be, but that’s because I think that pity is often misunderstood. To pity someone isn’t to look down on them, or to think their life isn’t worth living, or to suck away potential, self esteem, encouragement, or enthusiasm. Pity isn’t contempt; at least, it needn’t always involve contempt.
Following the theology of Thomas Aquinas, we might think that “pity is grief for another’s distress.” Thought of in this way, pity isn’t as obviously problematic. I realize that my son’s disability causes him distress. Back before he could talk, you could see him struggle to communicate with us. And many of our friends realize that his disabilities cause our entire family distress at times. It’s not bad for them to realize this. Aquinas connects his understanding of pity to a number of virtues, including compassion (literally ‘to suffer with another’) and misercordia (to have a ‘wretched heart’ over what another suffers). For Aquinas, love and friendship involve caring about what the other cares about—rejoining in what they rejoice in and being hurt by what hurts them. This is why Aquinas sees pity as a part of the virtue of mercy, a part of love.
This understanding of the emotion of pity isn’t bad, so long as it is properly understood. Rather than looking down on the experience of the other, it calls us into solidarity with them. It motivates us to be willing to help mitigate their sorry if we’re able to. Extra grace or patient given to parents of children with disabilities (or other hardships) need not be condescending. It can simply be a result of recognizing that perhaps their situation has been harder or more demanding than it would otherwise have been because of that disability. And even when much of that difficulty is primarily caused by a society that doesn’t understand or respond well to disabilities, those difficulties are still real. If we think of pity this way, we’ll see why Aquinas connected it with the emotion of compassion and, so long as we’re rightly attuned to that emotion, the virtue of compassion as well. We are disposed to suffer with others when we’re properly distressed by their sorrows and moved to work on their behalf to alleviate those hardships that we can.
Disability sometimes involves hardship. It took our son years to be able to eat independently, especially with utensils. It wasn’t until he was almost five—and after three and a half years of weekly speech therapy—that he was able to say “I love you, dad.” Four syllables that we didn’t know if would ever come, especially since so many individuals with his condition never develop speech. He’s been in therapy of some sort or other—and sometimes, three or four different kinds a week—since he was about six weeks old. It causes us distress. Distress in terms of our time. Distress in terms of our financial resources. Distress in terms of opportunity costs in everything from eating out to what we can do on vacation to where we live.
I’ve walked the grounds of the Idaho State School and Colony with my son, where he likely would have spend his entire life had he been born 30 or 40 years earlier. I’ve read Christmas in Purgatory, which describes how we treated disabled individuals in this country in the 1960s and 1970s (and, according to a friend that worked at the Idaho State School and Colony, even into the late 1980s.) I’ve seen the crushing fatigue that all the therapy and pushing and advocacy causes for individuals and families. The self-doubt and second-guessing that the struggles cause in their lives.
So part of me sees that we needn’t think that pity is always a bad thing. However, as I said at the beginning, I’m conflicted. I know that I don’t speak for all those who love people with disabilities. To be honest, part of me worries that someday I’ll discover I don’t even speak for my son. But until then, I’ve got to do the best I can.
And my best is sometimes less than I want it to be because of the difficulty.
I welcome your love, your compassion, your solidarity. I welcome your mercy. I welcome your recognition that our situation involves difficulty and distress that others’ situations might not.And if you can do all that without looking down on us, without wrongly assuming we have or deserve a halo, without thinking our son lacks potential or that his life isn’t a gift—if you can do all that, then I welcome your pity as well. You are invited to sorrow with us.And I hope that if I ever see you in distress and out of compassion am sorrowed by what you are experiencing, I hope that you’ll welcome mine.