money well spent

My son Nick, a first grader, looked over my shoulder as I thumbed through Facebook on a recent snow day. He saw a picture of a classmate standing bundled in the snow. He knew her name, so I asked him about her. I’ll call her Jane.

I like to ask my kids about their classmates. I like to nose around in their relationships at school, to get a feel for how they’re interacting with their peers and  what sorts of issues and non-issues are floating around. I’m a nosy mom.

“Do you like Jane?”

A smile hit Nick’s face like sunshine as he answered promptly and cheerfully. “Yeah!”

“Do you play together sometimes?”

“Kind of.”

“Do you ever play with her on the playground?”

“Kind of… she has a helper.”

I know Jane’s a child with a disability or two, but I don’t really know how her abilities and behaviors are affected.

“Do you ever talk with her?”

Nick unexpectedly made a sad face. He shook his head no, and he wouldn’t answer me aloud.

“What’s wrong, Nick?”

He shrugged.

“Is she non-verbal?”

He still just looked at me.

“Does Jane talk?”

With that question, it seemed he decided I was going to get it, so he finally answered. “Not really. She makes some noises and does this sometimes.” He flapped his hands a little.

“Does that bother you?”

“Of course not!”

He looked at me like I was daft to ask.

“Do you like having her in your class?”

“Yeah,” he answered without hesitation, and then he explained to me a bit about how Jane has a helper with her in class so she can do things, and sometimes she does hand-over-hand writing, just like he had to do through much of kindergarten. He also pointedly informed me, in a sort of remonstration, that Jane is not the only child who needs extra help in the classroom. He mentioned a couple kids with behavior issues, chattered about special ways teachers and aides work with them, and didactically made sure I wasn’t singling Jane out as being especially challenged.

* * * * *

There was a time not so long ago that I would have said I was proud of Nick for his attitude toward Jane, but I’ve come to realize that pride is a patronizing, almost offensive, attitude in this context. Why should I be proud of my child for looking at a human being with a disability and seeing… a human being?

We sat quietly for a moment, and I decided to take it up a notch.

“Nick, do you know that there was a time not so long ago that Jane probably wouldn’t have been allowed to be in the same class as you?”

His mouth fell open in an exaggerated expression of shock, and he yelled in my face, “WHY?”

I winced. Nick has a decibel disability. He was apparently born without volume control.

“Because she’s different. Grown ups would have said she doesn’t belong in the same class as kids like you.”

“WHAAAT?”

“People with disabilities would have been put in separate classrooms, or even in totally separate schools. In some schools they wouldn’t have even been allowed to come in the same school doors as kids like you, so you wouldn’t have even known they were there.”

Nick was disgusted. He couldn’t believe a world like that could exist.

“People would have said that if someone needs a helper in the classroom, she shouldn’t be there.”

“That’s so wrong!”

“Do you think your class would be better without Jane there?”

“NO!!”

By now my daughter Jesse, a fifth grader, had joined our conversation. Jesse copes with an anxiety disorder and OCD and Tourette’s. Jesse is sometimes beset by coprolalia, one of the most offensive manifestations of Tourette’s.  Jesse has a long history of therapy and treatment; she takes meds for the anxiety and tics; and she has an Individual Education Plan at school that ensures she gets much-needed special ed support and accommodations. As a result, she’s doing really well, and most days you wouldn’t know she’s anything but neurotypical.

I went in for the kill.

“There was a time when kids like Jesse wouldn’t have been allowed to be in a regular classroom.”

The kids were silent and shocked. It seemed like it was a lot to take in.

I gave it a name. “But some of our schools have changed a lot. We call it inclusion. An inclusive classroom, where all different kinds of kids can learn and play together. Do you like having inclusive classrooms?”

You know what the answer was, my dear reader.

* * * * *

Don’t think for a minute that I’m suggesting my incredible parenting and saintly values are turning my kids into inclusion champions in the schoolyard. I’m not even remotely that good. Frankly, I didn’t even have any idea what the concept of “inclusion” meant when Jesse started tormenting her teachers in preschool. I spent most of those early years apologizing and ducking my head in shame. And yet here was my young son now, instinctively embracing the heart of what inclusion is all about.

I didn’t teach him that. Rather, inclusion at school has created an environment where my children don’t really comprehend its absence. Inclusion at school has taught me that my own children are welcome, whatever challenges they may face in the years to come; and thus school inclusion has taught me to believe my own disabled child deserves to be included. Inclusion has moved me from a place of patronizing compassion and sympathy for others, and guilty shame for myself, to a place of co-equal acceptance and mutual empathy. Inclusion has taught my children and me that different is same, and same is different.

Equal.

Inclusion doesn’t happen because one day people wake up and say, “hey, let’s include everyone, no matter what their abilities and needs are! Yay!! Inclusion!!”

Successful inclusion takes effort and commitment and advocacy and good laws, of course; and it takes creative, educated thinking to identify and develop accommodations, modifications, and therapeutic tools. But also in the crassest sense it takes money, which most families raising children with disabilities don’t have enough of. We rely on private health insurance to cover the costs of treating our children’s unique disabilities and providing interventions and therapies to improve the quality of their lives; and more of us have been able to do that now, thanks to the ACA. When that’s not enough, we turn to public resources like Medicaid. We look for help in our public school systems too, through special education programs and occupational therapists and speech therapists and school counselors and whatever else we can get our hands on. Those resources are funded through school budgets but also in part through Medicaid.

Is it taxpayer money well-spent? Of course it is (even leaving aside social justice issues and basic human decency), and not just for the individuals who rely directly on these resources. Anyone who thinks Jane is the only one benefiting from inclusion — including the therapies and modifications and aides that make it possible — is living in a narrow, dark tube. Jane’s inclusion benefits all the children and families around her just as much as it benefits her, short term and long term. 

Nick isn’t having a better experience at school because he’s learning to “tolerate” Jane. He’s having a better experience because Jane, his peer, is a unique, fully formed human being in his classroom. He’s learning broader skill sets in human interaction, thanks to diversity. How will he treat kids who are mean or kind? Kids who are hostile or bullied? Kids who are verbal and non-verbal? Kids who learn quick and learn slow? Kids who can sit still and can’t? Kids from different ethnic and cultural backgrounds? Kids who have visible disabilities and invisible disabilities? The last is just one more in a long list of questions we ought to be confronting as we grow up.

Someday, as an adult, Nick will enter the workforce. He may have a boss, an employee, a co-worker, or a client with a disability. How will he handle it? Before inclusion, he likely would have been facing that question for the first time as an adult, with a jarful of ignorance, bias, and misinformation.  With school inclusion, right from his earliest memories, Nick will have experiences that inform his thinking and decision-making, that will help him make intuitively respectful, wise choices in how he engages with people.

I can’t readily put a price tag on that. But I know the number would be high, really high.

* * * * *

It’s easy to wring hands about the sometimes astronomical dollar costs of providing therapies and services for people with disabilities, at taxpayer expense. I haven’t dug too deeply into the justifications for moving to Medicaid per capita or block grants, but I suspect that this is a big part of the problem: some people just don’t think it’s right to put too much tax money into one person. They’d like to cap it.

For my part, I find it easier to wring my taxpayer hands about the costs of not providing needed services. There are plenty of resources out there for you to find, if you want to, about how much more it costs on the fiscal front for our governments not to include, empower, and enable people with disabilities. And no one can really quantify the moral cost to a society of having people with disabilities living in dehumanizing institutions or abandoned to the streets, unable to find employment, unable to live independent and healthy lives because we’ve failed to provide them basic supporting resources. I’m with Nick in feeling a sense of disgust that this is even up for debate.

So I’m trying not to be swallowed by despair, as we watch American leaders start to tear down Medicaid and the ACA, which have been instrumental in supporting people with disabilities as they strive to live fully enabled, human lives.  I’m trying to stay focused on the day-to-day, right here in my tiny world in Wisconsin. I’m thankful that I live in a place where regular kids like Jane and Nick can be in a regular school together. If Jane requires a little or even a lot more assistance to make that possible, so be it. Someday it might be Nick who needs an extra hand. Allocating money to need doesn’t mean Jane is unfairly getting too much.

Allocating money to need makes equal inclusion possible, and therefore it is exactly what fairness looks like. It makes Jane and Nick equal children in our society, just as they are equal humans in our species. And I’ll always take equal over a tax break.

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