Diversity in Language

By now, this idea is perhaps something you might expect to read in the Journal of Duh, but it’s true that the language we use when we discuss disability can present some incredibly delicate challenges. As parents of children with disabilities, we are constantly looking for the word choices that reflect not just our kids’ reality, but also the dignity and the hope and the possibilities that we hold as a kind of sacred trust.

Like most of the issues facing special needs families, it’s more complicated than it might at first appear. Some things are straightforward enough. Someone with a disability tells you that when referring to themselves, they prefer to do so in a particular way, and that should be honored. A parent may choose to speak directly with their child about their disability, or they might choose to avoid using labels or identifiers that their child might take too much to heart, depending on what they know to be true about their kid. And for the last time, people, stay away from the R Word. That’s an easy one.

Some choices aren’t so simple.

Over the weekend, I found myself in a discussion on Facebook that at first felt like it might turn contentious but quickly became a very productive dialogue. The issues at hand centered on language used by parents about their disabled children, in particular phrases like “broken brains”, but also the tricky question of whether or not parents should publicly discuss their initial feelings of grieving as they let go of their preconceived notions of the child and life they expected to have in order to make that space for the child and the reality they have.

For some, the choice was clear. Phrases like “broken brains” were described by a few as offensive, even vile, and some thought that a kid finding parents’ discussions of a grieving process would ultimately prove damaging to the child.

Like so many things in our community, however, there’s little consensus. All I can do is tell you what I know, from the experience of my family and others I have known.

“Broken” is tricky, and I’ve written about it before. My own feelings have moderated a bit over the past few years. What it boils down to for me is that “broken” isn’t a word that Schuyler really uses to self-identify, so it’s not one I use for her now. And yet, I’ve heard from many people with disabilities, some with the same or similar neurological conditions as my daughter, who use that exact terminology. Are they wrong to do so? Who makes that choice?

As for “broken brain”, that’s another story. Perhaps it is a by-product of having a writer for a father, but Schuyler expresses much of her world through metaphors. Some of them she’s picked up from me or her mother, and others she’s constructed on her own. She describes her condition as a little monster that lives in her head. When she’s troubled by seizures or communication problems or cognitive stumbles, Schuyler often attributes those issues to that little monster. And she describes her seizures as earthquakes in her head. Metaphors give her power to describe and to express her situations. There is poetry in Schuyler’s expressive language.

When it comes to what’s happening in her brain, however, Schuyler doesn’t flinch. She knows that yes, there is something wrong with her brain. We’ve explained it to her in the most direct terms, and she’s seen pictures of it from her MRI. She describes it as a little monster, but she also understands what that really means. My daughter proceeds with her life knowing that her brain is different and that because of that, she needs to work a little harder and needs to accept a little help from time to time.

For Schuyler and her troubling but beautiful brain, the word “broken” ultimately makes it a little easier for her to move forward. Schuyler feels that in some way her brain is broken, and subsequently she knows that her difficulties aren’t because she’s somehow less. She knows that at the very center of who she is, she’s as good as anyone else, and so if she works around what’s “broken”, she’s got a chance to succeed on her own terms. Schuyler as “the kid who can’t keep up for some unspecified reason” is a kid who feels inferior. But Schuyler as “a kid with a broken brain” is a kid who knows that it’s not her fault, and subsequently, she’s free to be a kid who can identify the obstacles and find a way around them.

Does that work for everyone? Does it work for those whose conditions aren’t so easily identified? Of course not. But just as People First Language is essential for some and offensive to others, language is a very personal expression of experience and philosophy. When we look at the ways that people with disabilities and their families express those experiences, I think it’s important to keep that in mind.

As to the grieving issue, it’s tricky. I think it’s a feeling that a lot of parents can either express or keep to themselves, but the emotion itself is what it is. Feeling guilty for having that emotion is nothing but harmful, and shaming parents for having those emotions is useless and cruel.

Now, is it wrong for parents to discuss it publicly? I don’t know. Public discussion of that feeling of grieving does provide one way for families to understand that they’re not alone with that very confusing emotion. I do think, however, that in having that discussion, it’s important to have the WHOLE discussion, not just about the grieving but the eventual understanding of how that grieving is ultimately unwarranted. It’s a process, and understanding it is an important step to moving to a better place.

There’s a lot of worry about how kids will feel if they ever read those things, and about the harm it might cause. I understand those concerns, and I share them.

Ultimately, however, those parents’ written words aren’t happening in a void. If parents are fostering loving, open relationships, then their kids should already have a pretty good idea of what their parents believe. The things they read will have context. I’m sure Schuyler will have opinions about the things I’ve written, but even if she disagrees, I can’t imagine she’ll be surprised. We’ve been having this conversation for years.

And if we disagree? WHEN we disagree? We’ll have those discussions. We’ll find the places where we meet and the ones where we differ. Those discussions with our kids about the differences between our view of the world and theirs? They aren’t exclusive to the disability community. And if we’ve been the parents we need to be, those dialogues, frank though they might be, can be positive. Likewise, if our kids read the things that we’ve felt and experienced over the years and are shocked, I suspect something might have gone wrong long before then.

In the end, I believe that the most critical point is our need to work with young people with disabilities in order to help them take agency in expressing their own feelings about themselves and allowing them to ultimately self-identify. Facilitate those discussions, enable them to happen. And then be ready to listen.

Some of you will disagree with my position on this, as you have over the years. And that’s not a bad thing. It’s not a negative, having that disagreement. From those different perspectives and beliefs and comfort zones, we build community. All we have to do is decide that it’s not as simple as right and wrong, and that our community’s diversity of experience and philosophy is not a weakness, but a source of power.

I believe that can happen.