Susan's Blog

Friday, December 15, 2017

Subtle and Overt Exclusion of People with Disabilities

At some point, I remember the joy I felt when I realized that I could drop Nat off at a given social group outing or event without staying, without a one-to-one. To be honest, my happiness was in part because it was easier for me, but I believe that Nat also enjoyed the freedom from the buffering aide. (Ahh, that universal burning resentment we parents and self-advocates feel about having to worry about the one-to-one accommodation for the extracurricular activities! Particularly joining in the “Neurotypical People” social activities. It’s almost always on us to find someone who understands our guy and it’s almost always up to us to pay for this accommodation. Only occasionally does the organization provide and pay for the aide but it is rare.)

I’m not saying Poor Me here. This is not about any sort of self-pity about all the stuff I gotta do as an autism parent. This is not on the autism. Or Nat. I’ll do anything for Nat, I’m his mom, that’s the contract I signed on November 15th, 1989 — no ink, just my soul. No, this is on the organizations who should follow the ADA, Americans with Disabilities Act of their own volition, or even better: simply provide it because they want our guys to take part alongside their peers, for God’s sake.

Why are we still in this phase of social cluelessness? I’ve been fighting this fight for Nat ever since he started having social anxiety and struggles to adapt to this stupid irritating sensory overload we call The World. Since he was three. That was 1992, folks.

There are still times when Nat can’t attend an event or outing. No one says directly “Oh he can’t handle it.” No one would dare. Well, actually, a few times they dared. And I am going to call them out right now: CASE Collaborative in Acton, Massachusetts did, and they are a special needs school program. Certain Speech/Language organizations did. Our local elementary school did (the principal said, “Oh he would be so bullied here,” in such a concerned voice. I kid you not). Jewish Big Brother and Sister did. They deemed Nat’s needs too intense for them. These places always claim they didn’t have the ability to train. Or the resources.

An elephant — particularly a mother elephant, like Dumbo’s mom who literally brought down the roof on those bastards — never forgets.

Are you — special needs organization, public educational institution, specialist, sports venue, theater — inclusive — or not?

If you don’t include, don’t you dare put it on him, if you can’t plan ahead for the appropriate accommodations. You are breaking the law but special needs parents or self-advocates might not have the resources, time, energy to take you to court.

Where is the Special Needs Fairy Godmother when we need her?

Excluding Nat usually happens in a more subtle manner. I learn about the circumstances of the particular event. I hear a few warning words like “hmm, is it for him?”  And then it is up to me to decide. Yes, it is up to me because if I ask Nat he will say “yes,” even if he is not in a place where he will be comfortable with the way the event has been structured. I know him, I know he will not think ahead about the parts he won’t like — he is just like me in this way. All I think about is, “Yay! I want to do this!” and I rush in and then — whoa, I can’t handle this.

Sometimes exclusion isn’t even about needing a better ratio of staff to participants. Sometimes the transportation will be a problem. For example, Nat will get anxious going somewhere in someone else’s car. Sometimes. So depending on how his anxiety has been, I might decide not to send him out this way. Or sometimes the problem is that the transportation will be making an extra stop. Nat hate extra stops. Or circling for a parking space is too hard for him.

I believe that organizations planning events must think ahead — ask the self-advocates or the caregivers ahead of time — what the issues might be and plan accordingly. And then do it. Pay for it yourself, don’t put it on the person-to-be-included. Or compromise, split the cost. It is as simple as that. Inclusion does not mean allowing people with disabilities to participate at your sufferance. Inclusion means being a team of equals, figuring out together how this thing can happen happily.

And let me just add that sometimes people are completely sincere in wanting to include and they are beautifully receptive to input. You can tell when it’s going to work. We very recently had a very good experience with a lot of hard work on both sides figuring it out and making it happen. I am so grateful for the mensches of this world.

But until you learn how to do this, you will not get to be with this guy. Your loss.






















Long story short . Seems that the teacher took 3 of the 7 students to the movies . Yet only a few weeks before took them all. In the process of getting a PDT meeting but no date yet. Nothing by next Friday there will be an IPRC request first day back .

That’s my straw.

— added by Farmwiferwo on Friday, December 15, 2017 at 1:29 pm

I agree wholeheartedly.

Our problem for the past year has been getting an outing lined up – no small feat – registration, transportaton, aide and then my daughter’s anxiety gets so bad that she has a full blown panic attack and won’t go at the very last second. It’s heartbreaking to see her internal conflict, it heartbreaking for us who are trying to have an outing ourselves. It’s a challenge we have been trying to overcome with every tool in the toolbox and nothing has helped. Our lives are getting smaller by the day.

— added by Susan on Saturday, December 16, 2017 at 2:09 pm

Their loss, yes indeed. The surprising thing here are those organizations who were founded on helping and accepting and being accommodating to young men like Nat and Matthew but we are told nope, nope, too much of this or not enough that. Can’t help you. Then they utter those two magic words: WE’RE SORRY. Uh-huh. I just know you are. Can you imagine St. Jude’s telling a parent: we try to cure cancer, just not THAT kind of cancer? So Sorry! And you actually think I am buying that bullshit?

— added by Sharon Jones on Tuesday, December 26, 2017 at 7:08 pm

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