My son has struggled with traditional schooling for some time now. He finds it physically overstimulating, mentally understimulating, and emotionally overwhelming. For years we have tried different strategies to help him adapt to the realities of his circumstances. Kids have to go to school. Individuals have to learn to participate in non-preferred activities. We all need to understand that there are things we are forced to do, whether we want to or not. (More on this in a future post…)
We’ve tried reasoning with him, checklists, consequences, bribes, medication, therapy. Nothing has worked – in fact, pretty much all of these strategies have backfired, making him more and more resistant to compromise or compliance. More recently, I had an epiphany, and it changed the way I look at the situation. Basically, I realized that what we’d been trying to change in my son was his brain function – to make him ‘fit the box’. My son is neuro-atypical. He is gifted and diagnosed with ADHD. He has “a lot of markers for ASD (autism spectrum disorder), but not enough for a diagnosis”. Allow me, for a moment, to lead you through the series of thought experiments that changed the way I look at this.
Make Your Best Team
Imagine, if you will, that you need to put together a team of twelve individuals to participate in a series of unknown challenges. Your job is to put together the best team you can without knowing the participants. You will choose based on certain characteristics, which will randomly select people for your team. For each characteristic, your total needs to come to twelve. You may choose specific numbers, representative proportions, even proportions, or random selection. Once you’ve entered your choices, a computer will randomly assign members to your team to meet the specifications you requested. Here are the characteristics you can specify:
Gender – how many male, female, other?
Race – how many of each race?
Eye colour – how many of each eye colour?
Height – how many average, above or below?
Age – how many in each category – child, adult, senior?
Ability – how many in wheelchairs? Blind? Deaf? Learning disabled? Autistic? Able-bodied?
If you haven’t yet, take a minute to think about how you might structure your team, before you read on.
Now that we have our team, we begin our challenges. First up… wheelchair basketball. How’s your team doing? A team with even one person familiar with using a wheelchair will be miles ahead of a team without, because that person can offer expertise to the others. Second challenge… braille. How are you doing now?
Many people have an implicit bias toward ‘normal’ – we assume that the challenges will be geared toward the majority. When I’ve asked people these questions in person, most were pretty comfortable with an even representation of gender and race – those categories that have had a lot of attention in our lifetimes. Most said eye colour wasn’t relevant. But imagine if this had been asked during Hitler’s reign – perhaps then eye colour might have been a deciding factor. Where people had a lot of difficulty was when we got to the ‘ability’ section. People suddenly realized that this was going to get hard. If I make spots for all of these different disabilities, it doesn’t leave me a lot of spots for able-bodied team members… hmmm. And so we reveal how much we are socialized to value ‘normalcy’, how much we value physical and mental ability, and how easily we associate the two.
What if neurodiversity could be seen as a strength in the right circumstances?
Creating a New Settlement
Imagine that we are sending a human contingent to settle Mars. Now imagine that most of the settlers are blind. The society that was set up would necessarily cater to blindness. As a sighted person, it is hard to even imagine what that society would look like. I have ideas about how I might set up a society that caters to blindness, but I am acutely aware that my suggestions come from a sighted framework and are shaped by accommodations we currently use to facilitate the inclusion of blind and low-vision individuals. Presumably, starting fresh would allow systems to be built around lack of vision. What we CAN imagine is that blindness would immediately cease to be a disability and might even become an advantage. (As an example, I have a friend who is deaf, with cochlear implants. She often refers to ‘taking off her ears’, which allows her to function in situations where a hearing person might be overwhelmed or even incapacitated.) In our new settlement on Mars, blindness would be akin to my current ‘dis-abilities’: I don’t have a tail and therefore don’t swing well from trees. I don’t have echolocation and therefore can’t navigate in the dark. But nobody counts those as disabilities because no one else can do those things either.
Back here on Earth, we talk about disability as a problem within an individual. “Oh, that’s too bad – he’s blind” or “It must be so difficult being blind.” However, we’ve just seen, in our Mars example, that in fact the disability is not the blindness itself, but rather the barriers enacted that make life on Earth difficult for those with low or no vision.
What if neurodiversity is not a disability, but that there are barriers that make full inclusion in society more difficult for those whose brain wiring differs from ‘the norm’?
An Inclusion Model
Let’s imagine another resettlement. This time we are sending two different contingents to settle two different parts of Mars, where every settler has a voice in planning. The first contingent is made up completely of individuals of ‘sound body and mind’. The second is intentionally made up of people with many varying abilities and disabilities. Which group do you think sets up a ‘better’ society? Examine your bias – what makes the society ‘better’? My own guess in this thought experiment is that the first settlement would get up and running more quickly, mostly reproducing improved forms of the systems left on Earth. However, I imagine the second settlement having more resilience down the line, as they would build with all of those varying abilities in mind. Theirs would be a more inclusive society, with a more universal design. They would be better prepared to deal with new challenges that arise in the future. I imagine a society built more on empathy, compassion, and tolerance, and one where people were valued for a wide range of contributions.
What if people’s worth and contribution were measured by their strengths and what they can offer, instead of their proximity to normal or ideal?
Neurodiversity as a Strength
Canadian society tends to recognize cultural diversity as a strength. We value and include people from all over the world, and we celebrate the various cultures that can be found across our country. We know there is still work to be done, but we pat ourselves on the back for our tolerance and open-mindedness.
What if we applied that same model to neurodiversity? What if we recognized that we NEED people who think differently? What if we believed that we could learn something from people who see the world in unique ways? What if, instead of TREATING neurodiversity, as if it were a disease, we LISTENED to the diverse wisdom that comes from people with brains that function in different ways?
Everyone who meets my son finds him fascinating. He is a true outside-the-box thinker. What makes him AMAZING is that he doesn’t look at the world the way most people do. He refuses “to be a sheep.” But what is frustrating is that everyone wants to hear what he has to say, but only if he presents it the way everyone else does. His talent is being different, but we’ll only listen to him if he changes to become more like everyone else.
What if we shift from a pathology paradigm to a neurodiversity paradigm? And that is the topic of the next post…
Out of the Well 