Daily Living With Autism #13 — Worldly success measures needn’t apply

white and green scrabble tiles on the table

Warning: What I’m about to say may sound downright offensive, especially to a group of “news heroes” who were recently featured in the local dailies. Please know, however, that “illuminating” is my intent for this post. Not offending.

I call the group I mentioned “news heroes”, not because they were publicly acknowledged for their grit and determination (which they were). I call them so because that’s how time and again the media portrays acts of courage and resolve. Especially by persons you rarely hear of — as in, persons with disabilities (PWDs) and/or special needs.

In addition, how the media portrays such heroes often becomes a feedback loop to the rest of society. It reinforces erroneous perceptions society might have of PWDs.

Okay, sorry. I’m getting ahead of myself. Let me backpedal a couple of weeks to when we first heard about this group of news heroes.

Is Success All About Climbing Every Mountain?

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Late last month, a group of 10 Singaporean participants successfully ascended the peak of Mount Fuji, Japan’s tallest mountain. While many have scaled these heights before, this group was different. They comprised folks in their 20s and 30s who had a range of special needs like autism, global developmental delay, and Down syndrome.

These Special Needs Ambassadors of Singapore’s YMCA made the climb accompanied by 16 caregivers, coaches, and volunteers.

Called the YMCA Special Needs Inclusive Challenge, this event started in 2019 when a similar attempt was made. Unfortunately that year, the weather prevented the group from summiting Fuji. So this recent success was definitely a huge thing, especially when Covid derailed plans the last three years to try again.

Sounds great so far, right? Nothing but congratulations should be in order, right? Especially when the participants completed 12 weeks of intensive training beforehand to prepare for it, and sacrificed so much to reach the peak. As a parent of a child with special needs, surely I too would congratulate these wonderful folks (and I do), right? Surely I hope one day my son can climb peaks, win trophies, or invent revolutionary devices that impact the world, right?

What’s society’s response to success?

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Instead, the thought that crossed my mind was what response society would have to such heroic news. I say the range of responses would be (at “best”) an “Oh wow, fantastic!”, or (at worst) “…” (cricket sounds). Two chat groups I’m part of on WhatsApp proved this point. One chat group comprised a sizeable community of special needs caregivers like me. The other is a smaller chat group with friends who are non-special needs and non-parents (save for me and my wife).

Someone in each of these two groups shared the news when it first broke. Other than a couple of ‘likes’, the rest of the group stayed pretty much, as I suspected, silent.

In other words, this news seemed to matter very little to the world.

In my opinion, there’s a bigger narrative working behind the scenes here. The one about what constitutes worldly measures of success.

Worldly measures of success…not again!

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Pause for a moment and consider. What if society knows there are special needs persons who successfully climb the highest mountain, swim the widest ocean, or skydive from 10,000 feet above sea level?

For that matter, what does it mean for the special needs community to know that one or more of their own have achieved such feats? Feats that those without special needs, or non-PWDs, regularly achieve.

The thing is, this pursuit of excellence in ‘extreme’ endeavors, is just feeding back into what the rest of the world considers as success markers or measures — climbing mountains, swimming oceans, graduating from Harvard, etc. But who in the world dictated these as the measures for success in the first place?

My pet peeve with these grand achievements isn’t that they aren’t in themselves grand for the individuals. They are. And they should be celebrated without a doubt. After all, in the case of this group of news heroes and their supporters, so much time, resources, and valiant effort have been put in. So they certainly deserve their recognition.

But I contend that publicizing such accolades to the world simply reinforces stereotypes. The kind society at large deems noteworthy achievements that show one belongs. Is that really worth it for the rest of us, PWDs and non-PWDs alike, who might be more “middle-of-the-road”? The majority of us could be “winning battles” every day at the homework desk, walking 5,000 steps to stay healthy, or engaged in any number of small insignificant moments. Yet no one else gives a hoot.

Not unless it involves fireworks. Or, in this case, the tallest mountain in Japan.

To be accepted, you must be “normal”

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In a 1995 interview with Mr. Norman Kunc, author of Ready, Willing & Disabled and Being Realistic Isn’t Realistic, the international advocate for disability and inclusion shared an insight that blew the top off my own innate assumptions about Persons with Disabilities (PWDs).

[Born with cerebral palsy, Norman Kunc is a sought-after consultant and speaker on a wide range of educational, disability, and social justice issues]

Early in the interview, Kunc reflected on his struggles during his initial years of therapy as a kid:

The implicit message that permeated all my therapy experiences was that if I wanted to live as a valued person, wanted a quality life, to have a good job, everything could be mine. All I had to do was overcome my disability. No one comes up and says, ‘Look, in order to live a good life you have to be normal,’ but it’s a powerful, implicit message. Receiving physical and occupational therapy were important contributors in terms of seeing myself as abnormal.

When I think about the years we spent sending our son C, with moderate autism, to various therapies ranging from speech to occupational therapy (OT), the messaging for him is subtle but ever-present: Son, you have to do all this because you’re not normal.

As his parents, we unconsciously bought into that unspoken, entrenched societal narrative. And so we hop from one therapy to another in an attempt to normalize C.

Son, if you’re reading this now and understand all that’s been said so far, please allow me to apologize. I should do better by you. Worldly standards and measures for success and acceptance needn’t and shouldn’t apply to you, nor PWDs (like that group of news heroes). In fact, they shouldn’t even apply to anyone, especially if the goal is to arrive at some kind of societal acceptance that’s predicated on unfair success measures such as climbing a mountain.

The Competency/Deviancy Hypothesis

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At the start of this post, I warned about the possibility of offending the YMCA Special Needs Ambassadors heroes.

Let me say again, if you the heroes ever read this, that it’s not my intent.

My intent is only to illumine what I’ve recently learned from the Norman Kunc interview. A concept from psychologist Marc Gold called the Competency/Deviancy Hypothesis. Simply put, it states that the more competence an individual shows, the more deviance (abnormal behavior) will be tolerated in that person by others.

That means the therapies and interventions caregivers and parents send PWDs to, are simply to ensure they demonstrate more normal behavior. The kind that society can tolerate.

What does that say about society?!

What does that say about caregivers and parents like me?!

Right now, it just means that if I’m hoping to continue advocating for more inclusivity in society for my son C’s sake, I might need to start by overhauling my own biases about what is or isn’t normal behavior.

For C’s sake, I hope I find “success.”

3 thoughts on “Daily Living With Autism #13 — Worldly success measures needn’t apply

  1. I don’t think it’s offensive! I agree with many of your points! Success looks different for everybody, even more so for people with special needs. There isn’t one look of how success should look like.🤔

    1. Hey thanks so much for visiting and for affirming my post. I just hope we can all learn to better embrace differences. Starting with ourselves and those around us.

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