How Growing up with a Disabled Mother Made Me A (Better) Person

Visitor — Thu, 23 Jun 2016 21:41:51 +0000

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.

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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.

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Remembering Paul through His Books

Visitor — Mon, 22 Oct 2012 20:33:38 +0000

By: Catherine J. Kudlick, Director of the Paul K. Longmore Institute on Disability

Ok, I think as I start to unpack boxes of books to load them onto my funky olive green Ikea bookshelves that I brought with me from UC Davis where I used to teach, I’m not and never will be Paul. So I’ve got to build this new thing that somehow honors Paul’s memory while being true to my own unique contributions. I brighten. I get it: I’ll never be Paul Longmore. Fair enough. I can do this, even missing him.

Then I start to load the books onto the shelves, and I’m sobbing. I’d decided to blend his and mine, figuring it would be the basis of an excellent library of books devoted to the critical study of disability, especially those related to history. We have many of the same ones, so there were duplicates, not always of the ones I expected. I imagine each of us reading our respective copies, me two inches from my nose and often with a magnifier, him leaning up against the podium in his dining room or stretched out on his bed. Did we puzzle over and appreciate the same passages? Did he, like me, own many that he hadn’t read but hoped to? Flipping through the thick pages of a hefty blue tome, I couldn’t decide if it was sadder to hold a book knowing that it had been read or realizing that it never would be. Either way, I wasn’t ready for this kind of intimacy. I turned my back to the large ground-floor windows of the Institute feeling very vulnerable and exposed. Then I looked up at the books again, “the friends!,” my favorite professor of undergraduate days used to call them. Paul was there, alright, urging me on with every book I pulled out of a box.

And even for ones that seemed to have proper places, who was to say that my proper places resonated with what others would expect, let alone with what Paul would have wanted? I ultimately decided on a loose schema that placed individual disabilities like blindness, deafness, madness, cognitive disabilities, survivors of polio in their own groups. Most everything was history, but I had sections about thematic topics like law, gender, theory, policy, work, entertainment, religion, bodies, disease, medicine, rehabilitation, sports, and international. But I’d also created a section on life writing, so where to put the memoir by a deaf guy who served in the Peace Corps in Zambia? And where to put writings by Peter Singer, the respected Princeton philosophy professor who has argued for euthanasia for some people with disabilities: in ethics or next to the histories of Nazi doctors?

Realizing that the books would be in the Institute’s public space, and knowing the disability community as I do, I even fretted over which shelves should contain which categories of books. After all, no one deserved to be on the bottom shelf, just as no one was entitled to be on top. What message was I sending by placing deaf histories above blind ones or placing books on AIDS next to gay history rather than close to studies of race? And what would someone in a chair see vs. someone who walked? Not all books were within easy reach, which could be considered a form of elitism. What of people who could see none of the books, what would they want to know or have to say? And what if I’d inadvertently caused offense by placing two newly warring titles or genres next to one another?

“Cathy, oh PLEASE!” It’s Paul Longmore taking a spin in the new Institute, sucking on his ventilator tube, somehow making it clear that the sounds are about exasperation rather than respiration. “You’re going to piss someone off no matter what you do, so just put the books on shelves already and get down to the real work of launching this place!”

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Paul K. Longmore Institute on Disability - personal

How Growing up with a Disabled Mother Made Me A (Better) Person

Remembering Paul through His Books