Until then, we had thought that as the white parents of an adopted, Asian child, our biggest challenge would be nurturing a positive and healthy racial identity. Now, we realized, there would be additional parts of her emerging identity we’d need to support, without personal experience to guide us.
Fortunately, I’d already learned an important lesson while preparing for the adoption. When you’re different from your child in some fundamental way, you really have to listen to adults who have “been there.” Hearing from adults who’d been adopted by parents of a different race had given me a feel for the complex feelings my daughter would likely develop about her race, our race, and where and how she fits in to a society where racism is part of everyday life.
So when physical and learning disabilities entered the picture, I knew it would be equally important to get the perspectives of adults who grew up with similar challenges and are navigating the world independently now. Just as I learned more about racism and how to respond to it from transracial adoptees, I needed to learn more about “ableism” from disabled adults.
The "ableist" view is that nondisabled people are the norm in society, and people who have disabilities deviate from that norm. So a disability is something that must be overcome. It is a mistake, a defect, or a failing, instead of a natural part of human diversity, like race, ethnicity, gender, or sexual orientation.
At first I assumed I could not possibly be an “ableist,” at least not a really bad one.
But after listening to the voices of disabled people themselves, I realized that ableism can be incredibly subtle, and that unlike racism, ableism indeed had infiltrated my own thoughts and assumptions, even about my own daughter.
For one thing, at least at the outset, I was preoccupied with “fixing” her dyslexia. I was driven by an almost maniacal obsession to ensure she become a good reader, whatever it would take. If she had to be tutored for hours a day or we had to take out a massive loan to afford a specialized school, we’d do it. The most important thing was that she learn to read well so she could achieve academic success.
It was only after I read a book by a highly educated, wildly successful adult with severe dyslexia that I realized the “ableism” inherent in my approach. My thinking was based on an assumption that my daughter’s happiness could only be guaranteed if she could learn to become a good reader, which would make her “normal.”
In fact, numerous people with dyslexia have done quite well, despite having very low reading levels, because they recognized and leveraged their many other strengths, and they took advantage of the use of assistive technology. I should no more think of “fixing” the dyslexia than I should about having my daughter’s eyes or nose surgically altered (something that would never enter my mind).
I had other reactions that were also ableist. For instance, I felt heartbroken when my daughter would report to me that she’d been excluded from activities with other children, like playing tag at recess, because she couldn’t run on her weak legs. I was crushed for her.
But after talking with a friend who has used a wheelchair since he was a child, I realized my excessive despair was more about me and my own value judgment about the importance of being able to run, about being “normal.” She was actually much more upset about being left out than she was about the activity itself. My friend reassured me that given my daughter’s confident and outgoing personality, the likelihood was that most of the time, she’ll be more than capable of drawing other kids into activities and games that will work for her. So far, he’s been absolutely right.
I now recognize that not only had I been completely oblivious to my own ableism, but I was also unaware of the stereotypes and low expectations disabled people often confront on a daily basis. My friend who counseled me about my daughter’s social challenges, for example, has a Ph.D., teaches at a university, and is an accomplished wheelchair athlete. Despite his abilities and achievements, he told me, people make inappropriate assumptions about him because he’s seated in a wheelchair. Strangers speak to him in a baby voice; waiters at restaurants ask his wife what he’d like from the menu; and random people congratulate him on accomplishing what for him are ordinary tasks, like grocery shopping or getting out of his car.
Hearing my friend’s stories and tuning in to the voices and feelings of other disabled adults sometimes makes me feel uncomfortable, because I realize that I have said or done things that reflect an ableist view. I feel ashamed, notwithstanding my good intentions. I also feel sad and even envious sometimes that a person who shares my daughter’s disability understands her better than I can – that I’m missing out on an important source of connection with her. And of course as I open my eyes to the injustice awaiting her as an adult, I feel angry and helpless.
But what’s the alternative? That I remain blissfully ignorant of insidious forms of ableism and unwittingly cause my daughter to internalize them? That because of my anxiety or discomfort, she grows up thinking that she is defective? That to protect myself, I fail to prepare her for the unfair assumptions and stereotypes she may face as she gets older? Not a chance.
I need to listen carefully to disabled adults, whose wisdom and experience challenge my assumptions and help me see how our society disables people. My daughter is perfect just as she is, and my job is to make sure she knows it.