Friday, April 18, 2014

Education - Individualized; not-sameness

I've been writing about work and inclusion this week. I actually began the week by writing against the sheltered workshop model and celebrating a Rhode Island decision. But as I clarified in that post, the goal isn't to end all sheltered workshops, but to end the default slide into segregation that dominates the work-life of people with developmental/intellectual disabilities.

We've seen that default slide end in education. When I was a child, I never saw kids with disabilities. That's just not an option anymore and we are all better for it. That doesn't mean, however, that every child should be fully included all the time. I wrote this:
There's no one pathway forward. The key is, as always, inclusion; not same-ness. For some people, a segregated controlled environment is absolutely essential for making progress in education or work or anything. My son is one of those people. In First Grade, he spends about half the day in a special needs room and half the day with his class. Although philosophically I am deeply committed to full inclusion, it's not the right thing for Nico right now. He needs the social interaction of a full class, but he also needs the quiet, controlled environment in order to work on his math, spelling, reading, and writing.
With that in mind, here's historian Margaret Storey in the New York Times, a DePaul professor and advocate for the same principle for her daughter.
A Civil War historian, I never thought I’d use the word “segregationist” to describe myself, but my daughter’s public school has changed all that. I’m not talking about racial segregation — her school is one of the most economically and ethnically diverse in our town. I’m talking about self-contained education for children with disabilities, which, in the United States, is increasingly rare.
My daughter is 10 years old, but as dependent on others as a 12-month-old. She cannot speak, but communicates volumes with her eyes, vocalizations and gestures. It can take a while to “get” her, but once you do, you’ll never forget how deep she is, nor how much she understands.
My daughter’s school challenges the idea that children with disabilities are best served by being educated alongside non-disabled peers. But the idea that inclusion is best, I would argue, is in danger of hardening into a dogma that risks re-stigmatizing children with severe or profound disabilities.
The dogma is very concerning. Nico is flexible, but needs some segregated space. Story's daughter, on the other hand, needs isolation. We can't let the laudible growing focus on inclusion undermine her needs. Storey continues:
The alternative of a special school is hard for some parents and educators to embrace. As one mother reflects, “Sending a child to a separate school can feel like a surrender, as if you’re giving up on keeping a child in the community.” I see this stigmatization all around me — most recently, in the mother who had to fight to have her nonverbal, significantly cognitively delayed child placed in a specialized school over the determined resistance of district authorities.
But there is an alternative: destigmatize these children and the special schools they need.
My daughter loves to learn, but to do it, she requires specialists trained to teach a child whose memory and cognition are affected by multiple daily seizures and loads of dulling medications. She needs a setting where the student-to-teacher ratio is low, the expertise of the staff very high, and one that has the resources necessary to pay for that intensive support available. There is no shame in this.
There should be no shame at all. Stigma is always a mistake. And yet she's right, our oscillation from segregation to inclusion has become a kind of dogma. Storey finishes:
We still need self-contained special education schools, and we need them to be rigorous and well-funded. Only when we honestly admit that we need these schools can we get down to the hard work of educating kids with disabilities, no matter what the setting. We cannot truly celebrate the diversity of people with disabilities if we fail to acknowledge the diversity among people with disabilities, and rise to meet the varied needs of all.
I'm really glad the NYT published this and hope we can extend the call beyond this piece.

Once again, I offer my manta: Inclusion, to the extent inclusion is appropriate, not same-ness.

That mantra includes Story's daughter and her need for a special school, with rigor, without stigma.

4 comments:

walkersvillemom said...

Thank you for sharing this story! I've experienced the pushback from the academic/disability theory side and inclusion has definitely become dogma in some spaces. It saddens me that we go from one extreme to the other without stopping in the middle ground to explore all different kinds of perspectives, needs, and experiences.

GirlWithTheCane said...

I was talking about something like this in a blog post recently...about how equality doesn't always mean that everyone gets treated the same, but that they have equal access to the resources that they need to succeed (whatever the definition of "success" is). And yes, if a student's educational needs and social needs are truly better served by being in a self-contained special education environment, then there should be absolutely no shame in that. The dogmatic positions, on both sides, don't serve anyone.

My beef with those types of environments when they're within other schools is that (at least in Ontario): 1) They're not well-funded to begin with and support staff are being constantly scaled back, and it's so easy for them to become more about managing disabled students than actually educating them, despite everyone's best efforts - there just aren't the resources to give everyone the attention that they need. 2) The classroom becomes the students' social world - not that it's bad to have other disabled students as their peers, but when disabled students in general aren't encouraged to be a part of wider school life, or offered only minimal opportunities to so do...that one room is so, so small.

Often it seems like supports are allocated and programming decisions made according to what the school's needs are, as opposed to the student's, and that's very frustrating. Boards' hands are tied somewhat because there's so little money...but it's the students that need the support that are losing out, and it's unfair.

David Perry said...

Yeah. When beginning to write about work, I really thought I'd be hammering on the Fair Labor act and sheltered workshops, which are often a real problem. As often the case, nuance is the real lesson. Individualization.

David Perry said...

I totally agree with this (where's the post? I really liked your Awareness days post; we're on the same page there). Nico has a well-supported environment in which he does most of his academics in a separate room, but has hours a day of full social and some educational inclusion with his class. We're going to have to work hard to keep that level of inclusion as we go forward, but it seems possible.

The key is that my wife and I have 2 good incomes and bought a house in a school district that is reasonably well funded and has a special ed director whose PhD thesis was on "the parent's voice in the IEP process." This is an enormous privilege and moving to a good school district is not a universal plan.