Saturday, February 13, 2016

Pay here for inclusion I

Hi. I know. It's been a while and lots has happened (cough The Mighty finally having to look at the shit job they've been doing, cough, among other things), but I'm actually not here to address any of that. Plenty of folks have done such an amazing job on many of the current topics that my half-assed is not needed at all. No way.

I'm here to talk a little bit about inclusion.

But not really about inclusion, not in the traditional way anyway.

The research that supports meaningful inclusion for all and rejects any self contained settings as inferior and worse for all kids, is out there. Plain as day. And there's nothing that I can do, but support inclusion for all with all of my might. Because of my kid and her peers, the disabled, the gifted, the typically developing, the shy, the extroverted, the athletic, the polite, the artistic, the strange, the weird, the wonderful and the plain, the cute, all of them. All.

But the general message of the importance and benefits of inclusion is not really what I'm about today. Although it always is.

Today I need to say something about inclusion that keeps insidiously making it into a privilege, some sort of service that some are entitled to, invited in for, that's afforded to those who either qualify or whose parents have enough resources and reserves, mental and financial, to ensure it happens - both on paper and in reality.

I need to tell you a story about a disagreement I had on the telephone today.

The bridge-burner-never-talk-to-her-fucked-up-ass-again that I am, I still know a lot of folks. I do lots of things where I meet people who are themselves disabled or who have disabled children. Most of them I'm pretty in tune with and we are often passionate about the same things:

Acceptance, meaningful inclusion, and equity.

Oftentimes it can be defeating to have to realize in conversations how far there is to go, but mostly it's also really excellent and always reassures me that there are plenty of folks who'll have my kid's back and whose backs she'll have once she's a little older. Sometimes, we even start things. Good things that focus on elevating disabled voices and take the lead from disabled advocates.

We're doing an inclusion 101 workshop for parents of very young children, so the kids can find community and the parents can learn about their kids' rights in the school system. Informal, nice, cool, networking, no one's left in the dark about ADA or IDEA, which we've unfortunately experienced is far too rampant, or hits you in the face like a brick on the eve of your kid's third birthday and sends you reeling. We will talk, answer some questions, and eat some cookies.


Or so we thought.

I reserved a room from the local library system and we set out to plan the invite flier and content of the workshop. So awesome, right? Connecting with likeminded parents and taking the "individual battle" down to a minimum with the backing of folks with a similar vision. This is NOT, after all, about fighting an individual battle, but working towards a system change, making a difference in lives besides the ones you meet at the breakfast table. Perfection, I'm telling you.

We are reaching out. Because we have precariously connected with other parents and count ourselves lucky. We want to spread the camaraderie, maybe even to educators.

Then the library got back to me:

"Sorry, rooms at the library are limited to non-profit clubs and organizations"

What? If someone's paying me for anything, I'm definitely not cashing the checks. I mean, I do fancy myself like a mix between a mean psychiatrist and a supportive life coach with a dash of a drunk pastry chef thrown in there, so there's that, but it's not exactly something I can be printing on business cards anytime soon. Not even if I'm willing to put things like 'Killer of your benign dreams, with chocolate' on it. I am so not employed. I just got my Green Card.

"But you are a business," they said when I called them. The lady on the phone and the person who had vetted our reservation, whom I could hear in the background.

"You are advocates for inclusion. That's a paid service. You are a business."

What? What? What?

"No. I'm not employed by anyone. I just want to talk to other parents about how to understand ADA and IDEA better, how to write their kids' IEPs in ways that support inclusion, how to collaborate with classroom and school staff, how to make it more likely for their kid to be accepted, truly included, and better supported in the actual community that they live in."

"You're a business. Are you going to offer a free, introductory workshop and then contact people to offer your paid services?"

"What paid services?"

I don't even do laundry at my house. or bath time. I think a lot though, about several different issues and whatnot. Maybe someone wants to pay me for that?

Big sigh.

Could it be that inclusion as a civil right isn't really as clear as we think it is, or nearly as clear as we think it ought to be? Why would a public institution immediately jump to the conclusion that talking to people about how to have their disabled children better included in their neighborhood schools is a paid service? That being an advocate for inclusion is a job, not a passion, or part of a value system. That inclusion is something that is achieved through an excruciating process that involves hiring and paying people, not something that is the responsibility of the schools, the community at large, to ensure.

What does that then say about the individuals who are not currently included in their schools, communities, or the society? Who we've chosen to not belong. That them or their parents aren't wealthy enough to pay for inclusion? That inclusion is a privilege reserved for those with the money and the resources?

As it would turn out, there is an incredible amount of very sad truth in that last paragraph. And we don't confront, talk about, face, revisit or anything that nearly enough. We still continuously frame inclusion as something that disabled children must qualify for, be granted, or afford. We discuss ways of playing the system rather than changing it. And all to often we accept segregation as inclusion.

Even the librarian "knew" that.


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