I’m a little embarrassed to admit this…
I have a sociology degree. I’ve spent countless hours and classes researching privilege, inequality and marginalized groups. I’ve taken classes specific to race, gender, religion, migration, ethnicity, socioeconomic class etc. My mom worked at a deaf and blind school for years. She is easily the kindest person ever, treated every child she ever worked with as capable, and lovingly encouraged them all to be their best self. My high school boyfriend’s sister is deaf. And also in high school I worked with disabled kids for a semester, for a class designed to help intermingle mainstream and special education. So on the whole, I’d say by the time I was an adult, I’d had some meaningful interactions with disabled people.
Fast forward to my life now and raising my autistic son. I’m ashamed to admit how little I associated privilege and inequality with disabilities until I actually had to start advocating for my son. My ignorance is incomprehensible to me now. How did I not see it before? I mean, we have the Americans With Disabilities Act, right? Oh, wait that happened in 1990? Wow, only by 1990 did we realize it’s wrong to discriminate against people with disabilities. And while the Act has made accommodations a requirement, it’s done little to reshape our lens and attitudes toward disability. That’s disheartening.
But people’s attitudes have changed over the years, right? To some degree, my heart still believes yes. Not that long ago though, I overheard a conversation between two adult males who were discussing a disabled coworker and how he walked. One of the men was making some pretty nasty comments, and the other (thankfully) didn’t agree with him. My heart still dropped though. How can a grown man in 2019 still be making such ignorant statements? I was infuriated that he would dare to make fun of someone for how they walked when it clearly couldn’t be helped. That’s disheartening.
My son’s disability is largely invisible. At first glance, he looks like any other little boy you might meet. If you watch closely you might pick up on his autism by how he walks or flaps his hands — if you know those are signs of autism. His world experience, however, is vastly different from other kids not on the spectrum. Sensory sensitivity is a real thing, and it presents some major challenges for us. I have to be hypervigilant about any outing for potential triggers. Is it going to be noisy? Too bright? Too crowded? Does it smell weird to him?
If he does get triggered and has a meltdown in public, I get to endure the scathing looks of strangers who don’t know anything about him or me or our situation. The message I receive is, “Control your kid.” “If Mom would discipline him, maybe he wouldn’t act out like that.” “I would never let my kid act like that.” I feel you shaming us, and it’s incredibly isolating. His meltdown is not bad behavior, it’s an uncontrollable reaction to being overwhelmed, and I can almost guarantee that he’s suffering more than anyone witnessing it. And I assure you, I’m not “allowing him to act up.” If anything we rarely leave the house except for planned and routine activities, or activities that can occur in the self-contained environment of my car.
I didn’t realize how inaccessible the world is to people with sensory issues until I had to live it. And you know what? I’m ashamed I never considered it before. Like most people, my idea of accessibility was limited to the obvious like wheelchair ramps. Because I hadn’t considered the wide range of impairments that could present challenges. How do you interact with a receptionist or cashier if you are nonverbal? I realize how even with an expanded perception of what constitutes accommodation, there’s still a lot I probably don’t consider because I have the privilege of not experiencing the need for it.
That’s just scratching the surface of everyday living. I haven’t even touched on some of the stigma still associated with special education. If the environment of a mainstream class isn’t conducive to my son’s learning, I don’t want to force him to fit in, I want to put him in an environment where he can succeed. Or discrimination in the workplace. Disabled people are capable and have a lot to offer, yet still experience high rates of unemployment. Or the limited representation of the disabled community in the media and (not always, but still) the pervasive stereotypes that persist in how disabled people are portrayed in TV and film. Why is the person with the eye patch the villain? Why are we so uncomfortable with disfigurement? Why is disability often portrayed as a pity story?
Above all else though, disabled people are just that — people! While we each have unique experiences that shape our world view, we all want love, social acceptance, opportunity, fulfillment and human connection. It’s hard to understand someone who is different from you, but it’s so worth it. My son is easily the most charming, smart, beautiful and interesting person I know. And I’m grateful to him for widening my perspective every day.