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Including My Son With Autism Is More Than Having Him Watch From the Sidelines

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I recently attended a concert my son was a part of. We went in excited, hoping to watch our son perform with the rest of his group, but what we experienced left us heartbroken.

My son needs assistance, and the organizers promised he would be included. At that time, I had no idea of the extent of that inclusion. He arrived on the stage with his class, was there for maybe two minutes, and was then pulled out. While his entire group took the center stage, he was made to sit on a bench in a corner and briefly play his part right there, from that bench. I had to insist to send him back on the stage for his next performance, but he was promptly removed again. The concert went on for another 30 minutes or so.

That picture of him sitting on that side bench crushed our hearts. He sat away from the rest of the kids, tucked in a corner, ignored and excluded for an event we had been looking forward to — one he had been looking forward to — for a performance he had been practicing every day for. This was supposed to be one of those keepsake occasion — his first concert! Yet it turned into an experience we want to forget.

Although the organizers later admitted this should not have happened, this incident got me thinking: What should inclusion look like?

Inclusion is the new buzz word. Every organization talks about it and takes pride in adding the word to it’s profile. But do they actually understand it well enough?

Sometimes people with the best of intentions do not get inclusion right.

A lot of times, inclusion means no more than allowing an individual with different abilities to stand in the same room as other neurotypicals. That’s where inclusion ends. It should not. Actually, that’s where the process of inclusion should start — standing shoulder to shoulder with everyone else.

There is a long road from being in the same room to being treated the same.

Inclusion is not just a set of protocols. It’s a mindset. When you “presume competence,” it’s inclusion. It’s not inclusion if you assume that a person with different abilities is incapable and start on that premise.

If you let a child with a disability play in the traditional playground but fail to make that playground accessible or sensory-friendly, it’s not inclusion.

It’s a pretense of inclusion.

If you raise eyebrows over the cost involved in making a playground accessible but never batted an eyelid when a new traditional playground was built, you are missing the point.

If you are an inclusive school, don’t just design programs to improve the learning experience for the mainstream kids. Think about ways to improve the quality of experience for kids who do not get to voice their opinion as well. Think inclusive.

Counting everyone as counterpart and not categorizing them based on their diagnosis is inclusion.

Inclusion is providing everyone the same opportunities to succeed and allowing them the freedom to fail and try again, and still not losing faith in them simply because of the diagnoses they have.

If you offer inclusive employment but the only inclusion we see is behind your front desk just because it will look good on your brochure, then stop! When a disabled individual is not simply used as a picture boy for your inclusion efforts, but you actually ensure equality of treatment, then it’s inclusion.

If you offer inclusion as a favor, don’t.

Inclusion is a right, not a privilege.

Inclusion should be empowering.

Before you think about inclusion, you need to think about the people you’re doing it for. You need to think about that child who is sitting on the sidelines and think about why his inability to communicate his feelings makes him invisible and dispensable for you. You would need to change perspective if you want to be inclusive. You need to think about the dreams and aspirations of not just one, but of all — including people who might not be able to verbally share their dreams. You need to believe in the people whom you want to include. Shed your prejudice and stand in a place that gives you a better vantage point.

Don’t try to be inclusive because it’ll makes you look good. Be inclusive only if it comes from your heart. Try to be inclusive because you understand and accept people for who they are. Support inclusion because you respect the differences and the uniqueness and not question or doubt it.

The idea of being inclusive is very different form actual inclusion. When inclusion efforts are implemented without a soul, there will always be people sitting on the sideline, watching the rest — in the same room, but not sharing the same stage.

Getty image by takasuu

Originally published: May 14, 2018
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