Monday, August 28, 2017

Parenting Kids with Disabilities: Inclusion vs. Accommodation

Previously on Parenting Kids with Disabilities:  Introduction / Accepting Your Child's Diagnosis / Helping Your Kids Accept Their Diagnosis / Accepting a Subsequent Diagnosis / Presuming Competence / Surgery / Adaptive Equipment / Public Interaction / Adapting / What You Can't See (Invisible Aspects of CP) / What Ableism Looks Like / Identity

Dear Parents,

"Inclusion" sometimes feels like a dirty word.

It's not supposed to be.  It's supposed to be this great thing.  This policy that means everybody benefits.  But when you are the kid being "included" and you know that nobody wants you there, because you "go so slow"?  It doesn't feel great.

I think it's because inclusion is usually something people have to do, not something they choose to do.  It often means more work for a teacher, and maybe it means kids have to spend time around a kid they usually wouldn't spend time around.

The thing is, as a former "included" kid, we can tell.

We can tell that we are a letdown.  The reason the rest of the kids can't do X.  The reason plans might change due to lack of accessibility.

When we grow up, we are keenly aware of the continual expectation to justify our worth.

Because being included means that we, and people like us, must have sufficient use and value to nondisabled people. We must constantly prove that our benefit to you outweighs the inconvenience of having us in your classrooms.  Not because we are human and deserve an education.  We are included because of what we can do for the nondisabled public.

Honestly, it feels gross.

ATTEMPTS AT INCLUSION:

In school, there were two places where "inclusion" felt especially forced, and especially isolating.  Gym class and recess.  And while not a lot could be done about the perpetual state of inaccessible playgrounds in the '80s, gym class was another matter.

It started with me doing adapted warm ups.  If the class was in a unit on team sports like floor hockey, I was either expected to join in with my crutches (a nightmare) or relegated automatically to the sidelines to "keep score."

I cannot tell you how many times I have been scorekeeper in gym class.  It's truly the most boring thing.  I watched all the other kids play and got to note when each side got a point.  When we played kickball, I was automatically assigned a "runner."  Running was the whole point of kickball.  Sometimes, I was in a completely different location than my classmates working on separate exercises altogether.  The complete opposite of being included.

So why am I talking about this in a series meant for parents?

Because I hope to shift your focus from inclusion to something that truly helps disabled kids feel a part of things and that is accommodation.

WHAT'S ALL THIS ABOUT ACCOMMODATION?

Everybody needs accommodations.

They do.

As nondisabled people, though, you don't need to think about all the ways you are automatically accommodated in society.  You can get into buildings.  Into bathrooms. Doorways are usually wide enough for you to fit through without trouble.  You can play sports if you want to.  You can travel without worrying if you'll be able to bathe or get into bed in the hotel.  Without worrying that your way of moving through the world might not arrive with you at your destination.  That it might arrive broken.

When your kid with a disability is out in the world, they are in a place that is not built for them.  And just because inclusion is the policy does not mean your child will be included.  It does not mean they will feel included.

As a kid, I didn't always know what kind of accommodations I needed in a given situation.  I just wanted to be able to participate in as similar a way to everybody else as possible.

WHAT CAN YOU DO?

If Possible, Send Adaptive Equipment Options on Gym Days:

If your child uses various adaptive equipment, and it's possible for you, consider sending options with them to school on gym days.  That way, if they're watching a movie in gym class, your kid having their crutches wont be a big deal.  But if they're playing kickball, they'll have their walker.  And if the kids are playing floor hockey, your kid can have the stability of being in their wheelchair.

Communicate with Your Kid's Teacher(s):

Let your child's teachers know about your whole child.  How they best learn.  What they need to be successful in the classroom.  If your child has an IEP, check that it is being followed.

Communicate with Your Kid:

Ask them what works best for them in a given situation and take them seriously when they tell you.  Work on skills like asking for help when necessary and regular kid stuff, like how to ask another kid to play with them.  (Sometimes this social stuff gets missed when your kid has a disability.)  You can do this by playing.  Have your child's doll or action figure ask yours if they want to play.

When Possible, Give Your Kid a Heads Up About What is Coming Next:

If science class means your kid is going to be going outside during class, that's something your kid will want to know so they can start thinking about how they can adapt.  They may need time to get used to the idea of doing something new.

If there will be a field trip or any new environment that your child will need to navigate, ask their teacher about the possibility of sending a video or pictures.  (Is your kid going on a field trip to somewhere that has a website?  Ask for that, and look at pictures and videos with your child.)  For nondisabled people, who have no trouble navigating in a new environment, you likely don't need a heads up about these things because you already know things will work for you.

Being able to see physical places and details beforehand can help you and your child figure out ways they can move from place to place in as stress-free a way as possible.

Find Ways for People at School to Meet Your Child Where They Are:

Know that just being in a classroom with typical kids is not enough.  Your kid is going to want to feel wanted there.  Welcomed there.  But often your kid might be left out.  One of the best things other kids can do is to ask yours if they want to play or be in their group for a project.

If your kid is comfortable, you could go in and speak to the class about your whole child.  Addressing disability is necessary, but so is discussing all the ways your child is just like the other kids in class.  Normalize disability and emphasize it is not sad.  That your child is used to living the way they do, and it feels normal for them.

[I love this picture, because it shows just how seamless accommodating can be.  My sis and I are 16 months old.  I'm in a baby walker, and my sis is standing next to it, having brought a doll for us to play with together.]

No More, No Less:

Keep in mind that, likely, all your kid with a disability wants is to experience school in as similar a way to their peers as possible.  No more, and no less.  So keep that in mind when considering accommodations.

Ask yourself questions:

What is the goal?

What accommodations does my child need to successfully attempt or accomplish this goal?

Involve your child in these conversations.

If your child is nonverbal, know it is still possible to include them in conversations that concern them.  You may have to rephrase questions (maybe to a yes/no format, for example). Remember that behavior is communication.  And remember that your child may need time to process your questions and / or think about what their answers are.

But as your child is the one who needs the accommodations, don't forget to involve them.  Listen.  And respect whatever they are able to communicate.

Accommodating your child's needs communicates respect for them, whereas inclusion often feels like it is rooted in a reluctant sense of duty.  I think all of us would always rather be treated with dignity, than as an obligation.  I hope these tips help you make the world a bit more accessible for your child.

2 comments:

  1. I agree! This is why I like how my college says "accommodation" rather than forcing "inclusion" Its acknowledging the disability.

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