When my son was born, he was perfect — ten little fingers, ten little toes; tiny, exquisitely formed features. He was the most beautiful thing I’d ever seen. He and I were like other mamas and babies in that way. While I believed then (and still believe now) that he was the most perfect and beautiful baby ever born, I’m fairly certain that is a sentiment held by most new mothers.
As he grew, I began to realize that aside from being the sweetest, most magical cherub of all time, he was different from other babies. As far as appearances went, he looked like a typical, adorable baby, and he did many typical, adorable baby things. He beamed gummy smiles at me, laughed, kicked, grabbed his toes, peed on his dad, and screamed like a tea kettle when he was unhappy.
But as the months came and went, he remained unable to sit up without support. At 8 months, he still had no interest in eating solid food. When most babies were learning to walk, he was still devoted to the army crawl and wouldn’t crawl on his hands and knees until after his 1st birthday. When he was 8 months old, I called early intervention services to request an assessment. He qualified for services for a gross motor delay. It would be another six months until we received a tentative diagnosis of cerebral palsy.
I’ve always believed in kindness and treating all people with respect. But if I’m honest, I have to confess that I spent most of my life with a certain amount of discomfort around people with disabilities. I didn’t know what to say to them or where to look. Did I ignore the fact that they had a disability, or did I acknowledge it? What was rude, and what was sensitive? I had no idea how to act, and it made me feel awkward as hell.
About four years before my son was born, I stumbled into a job in a vocational rehabilitation program working with adults with developmental disabilities. If I hadn’t really needed a job just then, I may not have taken the position. Aware of my own discomfort, I wasn’t sure I could handle it. Unbeknownst to me at the time, not only did this job become one of the best experiences of my life, but it also helped prepare me to raise a child with a disability.
During my time in that position, I learned about disability laws and the history of oppression experienced by people with disabilities. I learned advocacy. Most important, I got to know people who experienced profound disability and learned their stories. These people became incredibly dear to me, and my comfort around them grew. I learned to communicate with people whose speech I couldn’t always understand. I learned that regardless of IQ or physical ability, every person on this earth has something important to offer. I learned — truly learned — that all people are entitled to their dignity: to be seen, heard, valued, and given a say in decisions affecting their lives.
Ableism refers not just to the discrimination experienced by people with disabilities, but also the construct of society’s institutions by and for the typically abled. Ableism doesn’t get much press, even though according to the 2010 census, nearly 1 in 5 Americans experiences disability. Racism, sexism, and ageism are terms we are all familiar with. Society has come to recognize that the oppression of people based on their race, gender, or age is legally and socially unacceptable. Movements for civil rights and women’s rights over the past several decades have helped secure protections for individuals against discrimination based on protected class. While also members of a protected class, people with disabilities tend to be overlooked when it comes to discussing the isms.
One reason disabilities are overlooked may be that, in our society, we do a pretty effective job of making people with disabilities invisible. For example, name a television show featuring a character with a disability. Better yet, name a character with a disability whose storyline doesn’t revolve around the fact that they have a disability. Even more difficult, name a character with a disability who is also played by an actor with a disability.
The point being, if the only character you can think of who meets most of these criteria is Chrissy from Daniel Tiger’s Neighborhood, it’s not only because you’ve watched each episode approximately 7,322 times; it’s also because Chrissy is one of the very few characters on TV who has a visible disability, and whose disability is treated as incidental. The lack of representation in the media of people with disabilities represents one form of ableism. The fact that Chrissy, our beacon of disability in an otherwise able-bodied media landscape, is not even a real person but a cartoon character is the cherry on top of the ableist sundae.
Ableism appears in myriad other forms: From the overt, disgusting mockery of a reporter with a disability by the Heir of Slytherin during his presidential campaign to the lack of accommodations in public spaces. While laws like the Americans with Disabilities Act (ADA) and the Individuals With Disabilities Education Act (IDEA) are intended to ensure people with disabilities are not discriminated against, freedom from discrimination is not necessarily synonymous with inclusion. Designing restrooms with one extra-large stall, for example, is not the same thing as intentionally designing a restroom to be inclusive of people with varying abilities.
Ableism is implicit in our attitudes: When we feel sorry for people who experience disability or assume they need or want to be “fixed,” we are practicing ableism. When we ask what happened to cause their disability, as though we are Dr. House (hey, another TV character with a disability!) and have devoted ourselves to solving their medical mystery, we are practicing ableism. When we assume that because someone has a disability their quality of life is less than our own, or that they are incapable of caring for themselves, we are practicing ableism.
Ableism is also rampant in the language we use. It’s 2017. It blows my mind that not everyone has received the memo that the R-word is an ableist slur. Jokes about riding “the short bus” also demonstrate ableism and are rather crushing in their cruelty toward children with disabilities.
Children of the ‘90s in particular have a hard time relinquishing claim to the word “lame.” Even complaining about your crazy mother in-law carries ableist connotations regarding mental health. Now, I know what you’re thinking: “Hold up, Snowflake. You’ve taken this PC crap too far.” You were probably with me through the R-word, and maybe you could see my point about the short bus. I know it hurt when I suggested that you should take “lame” out of your vernacular. And I know that you will struggle to find an adjective to replace “crazy.” But here’s the thing: If you’re using a word as a synonym for something negative, then you are, by default, ascribing that negative connotation to the original meaning of the word.
I am not calling for a ban of the word “crazy,” or suggesting that it’s an appropriate term to use when describing people who experience mental illness. I offer it to illustrate the ways we come to appropriate certain terms with little concern for the subtext that language carries, and how that language reflects the way we regard certain groups of people. For example, “spaz” and “gimp” are other words that are demeaning to people with disabilities that people use frequently without realizing they may cause offense. The form of cerebral palsy my son experiences is called “spastic diplegia.” “Spaz” is short for “spastic,” and as a term mocks the involuntary muscle spasms that many people with cerebral palsy and other neurological conditions may experience. I have no doubt that most people wouldn’t throw the term around casually if they truly understood the meaning and impact that word carries.
I know that being challenged on some of these ideas can be hard. Our first impulse is to feel defensive. “GTFO. I’m not a bad person because I use the word ‘lame.'” And you’re right, you’re not a bad person because you use the word “lame.” However, we should all challenge ourselves to look at the world through a new, more equitable lens. Because once you become aware of some of the inequities people with disabilities face, you will begin noticing them more and more. And the more you notice them, the less your conscience will permit you to contribute to them.
If you’ve made it this far with me I’m glad, because one last, important thing to talk about is the concept of “person-first language.” That means that people with disabilities are just that: people with disabilities. They are not disabled people. It may seem like semantics, but it is important that we see people who experience disability first and foremost as people, rather than defining them by their disability. Having a disability is just another way of existing in the world; it’s neither bad nor good, it just is.
One of the most prevalent forms of able-bodied privilege is that those of us who are typically abled generally don’t have to think much about disability. And because of that, it’s not something we talk to our children about. When our kids notice the differences in other people, our first instinct seems to be to hush them. Most of us were raised not to point, or stare, or ask questions about people who are different from ourselves, or even acknowledge those differences.
But one of the most beautiful things about life is that we are not all the same. Some of us have red hair. Some of us speak Japanese. Some of us are 7-feet tall. Some of us have cerebral palsy. Some of us are total weirdos who hate cilantro. The point is that we are all different, and that’s not something to ignore — that is something to celebrate.
So when your kids notice the man in the grocery store with the prosthetic leg, or point out my son’s shiny gold walker and ask what it’s for, please don’t tell them to be quiet or pretend you don’t hear their questions. Answer them. Be matter of fact. If you’re embarrassed, your children will sense that and internalize it. Be direct, and honest, and answer what you can. Don’t be afraid to admit that you don’t have all the answers. By modeling respect for all people and normalizing differences, we teach our children to respect all people, and to see a bit of themselves in everyone. Helping our children develop that ability to empathize with others will only contribute to making the world a better, kinder, more equitable place.
To learn more, visit www.stopableism.org.