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.

 

Spring Break Excitement…Or Not

You may be wondering what a family of six that is saving money for a fun summer trip (as well as continuing to rebuild the emergency savings account that was wiped out with the last adoption!) chooses to do for spring break. It turns out…not much. Well, that’s not exactly true. We’ve been doing a lot – it’s just that none of it is particularly exciting.

In fact, with the exception of a blissful 36 hours in which everyone in our home was fever-free, we have had at least one sick child every day for the last 11 days. We’ve had runny noses, coughs, and fevers, and yesterday we added a confirmed ear infection to the litany of afflictions. The downside of having a lot of children is that illnesses can slowly make their way through them, one at a time, rendering at least portions of the family home-bound for long periods of time. We’re thankful it’s not worse, but this is getting pretty old!

In a way, it’s been nice that the weather has been so yucky – 40s, maybe 50, cloudy, rainy, and muddy. At least we haven’t felt like we’re missing out on much! Even though this week is Matt’s spring break, the kids and I are plugging away at school. We may as well do school now, when weather is yucky and everyone feels bad, so we have more time to enjoy the fun, warm, sunny days when they arrive.

dinner table school

We also have a number of medical needs in our family, and poor Matt is at my mercy this week, as I’ve scheduled as many appointments and meetings as possible to try to avoid having to drag all 4 children to everything. So far we’ve tackled an eye doctor appointment for one child, a meeting about access to our church’s children’s programs for one of our kids, an unexpected pediatrician appointment to confirm the ear infection, a cardiology appointment for Matt, and we tried to do an endocrinology appointment for two of our kids…but, for the first time (which actually might be impressive, given the number of appointments we have? or maybe it’s still just depressing) I had the day wrong, and they told us our appointment is actually tomorrow. Sigh. Tonight I’ll meet with another adoptive mom to talk some adoption stuff, and tomorrow we’ll do the actual endocrinology appointment and hit a physical therapy appointment. It’s all stuff that needs to be done…but it’s not exactly Disneyworld 😉

I am thankful that we live in an era in which medical care is readily available. I’m thankful for our high quality health insurance that allows us to pursue that care without worry. It has not escaped my notice that not everyone has that right. My child who woke up with an ear infection doesn’t have to suffer longer than necessary. And since we need to take care of all of these specialist appointments, it is so nice to be able to do it during a week when Matt is around. This is part of what life with a medically complex child and others affected by various medical issues is all about. We knock out the appointments, do some school around them all, and try to get in some bits of family fun, as well <3

I hope your spring break is more exciting than ours – but also that if you are a family who has weeks like this, filled with a never-ending stream of appointments, that you can see the grace in the ability to do that, too.