Penny Richards is a Mom who sees the bigger picture. In addition to posting about cool stuff in the world of disability studies, geography and history at the Disability Studies blog, Penny also shares the positive side of parenting a child with disabilities. Thanks, Penny, for sharing your views in today’s interview!
Tell me a little about yourself and your family.
I’m Penny Richards, I’m married to Peter and we have two children, Jake and Nell. Jake’s turning 13 in a few weeks, and Nell is 8. We live in Southern California. My husband works in the aerospace industry, and I have a research scholar affiliation with the UCLA Center for the Study of Women.
Tell me more about son’s disability. When did you first learn of his disability? Was it at birth or later?
We became parents in North Carolina, where we were grad students–I was half-way through my dissertation when Jake was born. Because he was born at a university hospital, his various apparent physical differences raised all the red flags, and by the end of his first week, we had his diagnosis–a rare chromosome disorder. We didn’t really have a prognosis, though, which was probably for the best. No choice but to stay open and wait and see what he would do, with love and support.
How did you go about making the decision to write about your son? What do you personally get out of blogging/commenting about him and his issues?
For a long time, I didn’t write about him, at all. I learned pretty early on that parents need to be very careful about presuming to speak for their kids’ experiences, and that parents (especially, I guess, mothers) have to expect some skepticism in the disability community. I didn’t want to appear to be using Jake as my “credential” to talk about disability history. Because he’s not!
But I also appreciated the parents who did write–especially Michael Berube. I read his Harper’s piece on Down syndrome when I was pregnant, and again when Jake was first born, and it made a huge difference in my processing of all the news I was hearing. I realized there was a competing responsibility to be out there and talk about our lives a bit. It can’t only be the horror stories, right?
Now I think I’ve built enough record in the field that there’s no question of my credentials. I hemmed and hawed, but decided to mention Jake in a book discussion in Disability Studies Quarterly a couple years back, because my response to a particular children’s book hinged on the illustrations resembling him. I still don’t write about Jake much on the Disability Studies blog–but I don’t think he’s any secret, either. If a story like the Ashley X controversy comes up where my status as Jake’s mother seems relevant, I’ll mention it; if we do something as a family that would interest readers (say, visit an accessible playground, or go to a celebration of the ADA’s anniversary), I might even include a picture of us.
How has your son’s disability affected you as a person and as a mother? What did you do right? What do you wish you had done differently?
Jake’s my first, so what kind of mother would I have been otherwise? I’ll never know. He’s very social, which I tend not to be, so he probably brings me out into the world more than I’d choose on my own– and that’s a good thing. Relocating to California in his first year was a good move for us, because Jake likes to go out for walks, a lot, and that would have required more planning (and clothing!) in another climate.
I know I probably wouldn’t be doing disability history without him–which would be a shame, because it’s been an exciting field to watch and join for the last decade, and it’s really well-suited to my training, working with family papers and school records and such.
What do you want other parents fighting the same fight to know?
I’d want all parents to enjoy their kids! It can’t be all about chasing therapies or calling meetings or phoning insurance companies. Those are parts of the work of parenting, sure, but they’re not the meat of it.
It has to be about sharing the joys of life, exposing your kids to the amazing world they live in, building relationships, having adventures. I know that sounds sappy, but I also know I feel like I’m really in the mom-groove with my kids when we’re part of something bigger, something wonderful, together. I don’t relish the banshee-mom-from-hell aspects of raising a disabled kid–it’s really not me, and it’s not fair that every little thing seems to require it. I face the hassles and put a lot of work into resolving them, but only so we can get back to our routine fun more quickly.