Access Matters

I’m sorry to have to admit that, for most of my life, I was pretty oblivious to issues of accessibility and disability rights. It took exploring adoption through a special needs program to begin to open my eyes, and it took adopting a child who actually has a medical need that is considered a real disability for me to begin to truly see. And I’m still learning – but I see more than I used to see.

Everywhere we go, everywhere we look, there are barriers to access.

Do I want to go to a park? Do I want to take my kids to play at a playground? Do we want to go to church (did you know that churches are exempt from the ADA?)? Do I want to sign my children up for a group or activity? Do we want to hire a baby-sitter to watch our children? Do we want to take advantage of the childcare advertised as being provided in conjunction with an event?

Because one of the members of our family has a disability, none of those activities are ever straightforward for us. Every single one requires advance planning, maybe scouting out a location, maybe explaining our situation to whoever is in charge.

Even the language that we, as a society, use to talk about disability and access is often awkward. I cringe when I hear the phrase, “wheelchair bound.” Does this look like a child who is “bound” to and restricted by her wheelchair?

I’d argue not. FangFang’s wheelchair is an amazing tool that allows her greater access to the world around her than she would otherwise have. Without it, she would have almost no “social mobility” – the ability to move herself around in public places. At home, she is quite mobile – she can butt-scoot or crawl to get herself almost anywhere, including up and down stairs – but butt-scooting down the aisles of Target isn’t exactly within our social mores. It’s true I could put her in a stroller, but in that situation, I’m pushing her around, and she has no control over where she goes. At four, just like other four-year-olds, she wants to have some freedom to explore her world, and it’s entirely appropriate for her to have that. That is what her wheelchair offers for her.

FangFang knows there are things that other kids her age can do that she can’t. She doesn’t often communicate that it bothers her…but when we find ways to facilitate her participation and her independence, her excitement is palpable. She has been potty trained for months, but because she doesn’t walk independently, and she’s so tiny, she has always relied upon me to assist her in the bathroom, even as she has seen her younger brother use the bathroom on his own. This week she received a custom-made step-stool, a modified version of this one, that allows her to be almost entirely independent in the bathroom. She is beyond thrilled.

It’s true, providing for access is expensive. It’s almost never efficient. But don’t the lives of people with disabilities matter? They’re people, right? My daughter who doesn’t walk independently is still a person, still an image-bearer of the Living God, worthy of respect and dignity, right? And my friend’s daughter, who is deaf? And another friend’s son living with HIV? We, as a society, should not be setting up systems that perpetuate exclusion. None of us benefit from that situation. Right? Do you believe that with me?

I hope you do. But sometimes I wonder. Maybe other people don’t? If they did, would it be this hard?

It breaks my heart that I am going to have to, at some point, teach FangFang to advocate for herself in a world that, in so many ways, is not built for her. I am so thankful for the ways in which we as a country have grown in inclusion – for the ADA, for IDEA, and more. But we still have so far to go. And as hard as the mental back-and-forth is for me, the mother of a child with disabilities (I need more help – I literally cannot do X unless someone else helps me; but who am I to request additional help, beyond what everyone else gets, when I know people already have a lot on their plates; what should I do here?), I am committed to the fight, for my child and for those who come after her; would you like to join me? I don’t want them to have to fight so hard. And I wear my new shirt to remind myself of the future for which I’m fighting.