A Human Advocacy

Sometimes I feel fear when I ponder Schuyler's future, but with that fear also comes something that looks and feels very much like hope. It's the hope that society can undergo a kind of sea change.
09/30/2013 03:51 pm ET Updated Nov 30, 2013

Ten years ago, my daughter, Schuyler, was diagnosed with a neurological disability. A decade ago, I joined a club no one wants to join, and I began to see how this world works for those who are different. How it works, and sometimes how it doesn't.

When we look at the traditional model for disability rights, a persistent theme of segregation emerges.

Successful programs like Miracle League or the Special Olympics are vital, and countless people with disabilities have benefitted from their good work. But does this represent a good model for social interactions with the disabled? We separate, with the good intent of providing quality, specialized services to those with different needs. Even under the best of circumstances, however, our segregated disability community often feels like the Island of Misfit Toys. When we step back and examine this persistent segregation, we often feel disquieted. It offends something inside us. We imagine looking over the fence, and we know better.

I see this gentle but real segregation in the life of my 13-year-old, who has a rare brain malformation called polymicrogyria that manifests in developmental delays and an inability to verbally communicate. Schuyler had difficulties making social connections in middle school, so her special education teacher connected her with the school's HOPE program, in which neurotypical kids get class credit for spending time socializing with and mentoring classmates with disabilities. At a glance, things have improved. During our regular weekly lunch visits, Schuyler seems happy, and her HOPE friends are always nice to her. She is often greeted by other kids, typical kids, and things are clearly much better than they were before.

But there are cracks. The conversations still take place largely without her. The lunch table where they sit is set conspicuously apart from the rest. I once watched two of the HOPE girls quietly jostle for a seat at the table; the loser sat next to Schuyler. As a parent, it's hard to watch something like that. As a former middle schooler, I think I understand it.

What does Schuyler receive from this interaction? More to the point, what do the neurotypical kids who sit with her get from it? Class credit? A sense of self-worth, of having done something good for someone else? Even if it's more than a superficial pat on the back, does it enter the realm of real human interaction? If it falls short, when good kids fail to cross that gap, what's the impediment?

If we decide a model of inclusion is optimal, there are some significant advances we have to make. We need to grow, as a society. That means you, and really, it means me, too.

Equality has always lived at the heart of every great civil rights struggle. What differentiates the disability community's fight for equality is this: for the disabled, equal doesn't mean identical. True equality for the disabled won't mean their lives will look exactly like ours. Those worlds will manifest quite differently, and unlike with other equality movements, they will require just as much (if not more) work from those of us on the outside.

When we start to think of disability rights not as education or accommodation problems, but rather as human rights issues, the inequalities suddenly don't simply feel inadequate. They feel wrong. We are a people conditioned to fight unfairness and injustice. We don't always respond when unfairness strikes at large groups of our fellow citizens. That can feel daunting -- too big for our small advocacy. But we are mobilized by individual stories of unfairness.

And that's how real change begins, on a human level.

To go further, we have to ask ourselves some important questions. What does it actually mean to be human? What does our concept of humanity look like around the edges, where the manifestations of disability challenge our concepts of human interaction? If you can't communicate in a traditional way, how can we build a relationship? If your perception of the world around you is alien to me, or if your interactions with others operate under rules unknown to me (and perhaps even unknowable), how can we still make those human connections?

If there is a way, it almost certainly involves expanding our own definition of humanity, and our own ability to acknowledge and truly understand the intrinsic humanity of the disabled. Not to coddle them with soft language or protect them from a hateful world, and certainly not to elevate (and thus separate) them with talk of heroes or inspiration or God's little angels.

When I examine all the interactions in my own life, it's with my daughter that I find myself developing the closest, most authentic, most real relationship. And it's one built not so much on words, which can be difficult for her, but largely on shared experience. It's important to me that much of that experience takes place in her world, sometimes internal and sometimes very much not, and on her terms. Knowing Schuyler means loving her without expectations of adherence to a societal narrative.

Authentic human relationships. Friendships without pity and lacking power imbalance. Unconditional love, not the kind you might feel for a beloved, well-tended pet, but the kind of love built on mutual fascination. The kind that comes from real listening. This is the path to real advocacy. This is the real work, the kind where changing the world mostly involves changing ourselves.

When I look at my daughter, I see the possibilities. Sometimes I feel fear when I ponder Schuyler's future, but with that fear also comes something that looks and feels very much like hope. It's the hope that society can undergo a kind of sea change, one in which people like Schuyler do better than receiving a place of their own at the kids' table, brightly decorated but still "Other," and instead find a seat at the big table, with the rest of us.

It was for Schuyler that I stepped out of my selfish circle of me and began thinking about what it really means to advocate for someone I love, and for others like her -- those for whom love is important, but not enough. I'm still working out what an effective advocacy could look like. I suspect I'll never stop learning.

In the end, I think it will happen, for no other reason than because it's simply the right thing, the decent human way to treat each other. And the dirty little secret? It's not the disabled whose lives will be transformed the most.