By: Emily Beitiks Understandably, there is a deep distrust among people with disabilities of nondisabled people that comes from a history of interacting with “do-gooders” (who are SO proud of their efforts to help disabled people, so long as the recipients of their help are unopinionated and passive) to nondisabled practitioners found in education, medicine, and elsewhere who aim to normalize disabled people and cure their differences. Though I get the underlying reasons behind the question I so often receive of “What brings you to do this work?” I must admit that despite being a pretty forthright person otherwise, I rush through my answer and stumble. Typically, it sounds something like this:
My mother has a degenerative disability, Multiple Sclerosis. She had it before I was even born, so disability is very personal to me.
Hearing this, some then assume that my mother was a disability activist, but she wasn't. Others thank me for my generous work to help those “less fortunate.” Ick. Not only does it clump me in with the problematic “do-gooders,” but it also neglects the fact that it’s my paid work. Fortunately, I derive a lot of personal enjoyment from the work, but it’s a job nonetheless. Do people tell accountants how generous they are for helping others with their taxes? Most likely not.
We assume they do it to make a living. Because I often feel misunderstood, it’s finally the right time to address an important question how do I want people to take it when I share that my link to my mother brings me into doing disability work?
What I avoid saying, out of fear that it’ll sound disingenuous or just too sappy, is that having a disabled mother made me a better person.
Emily at age 5, her mother buttoning her shirt, an activity that she has since done many times for her mother.
It taught me:
Interdependence: Don’t get me wrong, my mother did a TON for me (case in point: she made my lunches. In high school!). However, our relationship was less one-directional than it typically is for mother to child. I knew that sometimes her body crapped out on her and when that happened, I had to help out, whether that meant tying a shoelace or helping lift her back up after a bad fall. All of this made me feel useful, which increased my confidence. I was not burdened.
To stop caring so much what other people think: While maybe not a loud and proud disability activist, my mother got really good at fighting for what she needed despite the stigma of disability. I watched this grow in her as I grew. When I was a child, she was able to pass and hide her disability if she wanted to, but gradually she started to walk with a cane, then a walker, use a motorized scooter and then a wheelchair. I watched as she increasingly decided to stop caring if people stared at her, to shoot back a sassy response when people assumed she was my “grandma,” or to ignore questions, like my high school biology teacher asked in a parent-teacher conference, “What’s wrong with you?” I remember a summer concert at Yerba Buena Gardens where we showed up hours before to secure a spot with good visibility. Just before the show began, a group of latecomers squeezed into the open space in front of us, and then stood up when the music began, completely blocking her view. She didn’t hesitate to start telling them off, but they couldn’t hear her, so she pressured me to make some noise on her behalf. I was terrified, but then.. it felt good. They listened, they sat, we watched the show, and I walked away having had a first taste of activism (and a victory no less!).
Disability rights benefits me too: When I was pregnant, for example, I took full advantage of elevators and disabled seating on public transportation (read my past blog about this). When I push my kids in a stroller, I seek out curb cuts. Growing up with someone who used such features makes me more knowledgeable about what’s out there, which I benefit from as a nondisabled person, but would particularly call upon if I later acquire a disability. While many nondisabled people greatly fear that disability will one day happen to them, I’m fortunate to have one less worry (leaving me with more time to think about climate change). Emily's mother holding Emily's daughter.
My whole “being alive” thing is cool: It’s not just that having a disabled mother made me a better person...It’s what made me a person at all. When my mother was diagnosed, she immediately felt her story being written for her with doctors predicting exactly how incapacitated she’d be by what age (predictions that were we can now say were grossly inaccurate). So she pushed in the other direction and decided that what she really wanted to do was have another child, even though she was 40, which was (and is) also stigmatized. Countless women with disabilities have had their reproductive rights taken away, through physical and social restrictions, and haven’t been able to do what my mother was fortunately able to do. So while I’m obviously biased in the matter, I think it’s a good thing that I was born.
So maybe I struggle so hard to give my elevator answer and articulate why growing up with a disabled mother brings me into this work because I simply have too much to say. Working to educate others about the ways that people with disabilities promote positive social change helps ensure a future where other disabled parents will be allowed to start families. In addition, disabled children will see those parents and gain an increased sense of what’s possible. As someone who has benefitted from knowing disability, this mission is deeply satisfying for me to be a part of.