The Disabled Woman's Guide to Pregnancy and Birth

[lightreads]

The Disabled Woman's Guide to Pregnancy and Birth by Judith Rogers

My rating: 4 of 5 stars


A full-service book from pre-conception to post-partum, written based on extensive interviews with a cohort of women with disabilities.

I picked this up thinking there might be something for me here. It turns out none of the interviewees share either my major or minor disability issues, but I found this so interesting, I skimmed through it anyway. This book would be particularly useful for a woman with spinal issues, or any of the neuro-degenerative disorders, or amputations, or paralysis, or fibro. In fact, I bet this would be an invaluable resource, since the experiences of others are one of the very few reliable resources pregnant disabled women have. If nothing else, this book proved just how lacking the research is; it cited studies where it could, but it would usually be with a lot of caveats about how this was conducted in the sixties oh and the study population was ten people oops.

So I'm kind of rating this positively just for existing. It is good in its own right, though dated at this point. But it is thorough and well-intentioned, and it has that particular body frankness that a lot of disability writing does. There's something refreshing about a series of disabled women describing in hilarious, graphic detail all of the bodily substances that came out of them during labor. You don't see that in a lot of pregnancy books.

Still, dated. And quite heterocentric. And full of great advice about all sorts of practical issues like dealing with muscle spasms while pregnant, or transferring in and out of the wheelchair in the third trimester, or adjustments that may need to be made to prosthetics as pregnancy progresses, and on and on, but less good on, hm. On some of the trickier, more fraught stuff. Like, the book would throw out a series of anecdotes about the horrible way many of these women were treated by the medical profession – this one was forced to have a caesarian because her doctor did not believe paralyzed women can give birth vaginally (they can) and refused to do the relevant research, this one was threatened and not allowed to leave the hospital because she couldn't prove she could feed her baby with the inaccessible tools on offer even though she had perfectly functional accessible solutions, that one was abused by nurses when they discovered she was incontinent, this one was pressured repeatedly to have an abortion because her doctor did not believe she could care for a child, and on and on and on. And the book's response to that will be like, "so find a medical professional who is educated regarding your disability!" Um. . . . Wow. That's, like, step zero to the complex set of legal/interpersonal skills and emotional resilience a person needs to navigate these waters.




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Comments

[the_rck]

I wish I'd had something like this when I was first considering having a baby. I had a good role model in the form of my then psychotherapist who was post-polio and the mother of three grown children. Of course, I also had negative input from within my family-- My step-father said that disabled parents were guaranteed to, at best, be neglectful. Fortunately, everybody else, my siblings and my mother, told him he was wrong and out of line.

I tried to do research into resources for parents with disabilities and found very, very little. Of course, my primary disability is psychiatric (anxiety), so it's a different set of problems, and I can pass. Even the fibro can be hidden if I'm careful.

[lightreads]

Tbh, there still isn't a lot out there. This is one of only two nonfiction books I know of, and I did not like the other at all. There are a couple of memoirs I can think of -- Anne Finger's, in particular, was really helpful to me -- but it's all obscure, small press stuff. And there's an org called Through the Looking Glass, but it, like all the books I'm thinking of, is really directed at physical disability. So yeah. Basically mentors are it, and just throwing yourself out there.

[the_rck]

I think I wouldn't have dared if I hadn't had Lena as an example. She told me I could do it, and I believed her (and I have done it. My daughter is eleven now). We had to hire someone to come in once a week to clean and change my daughter's sheets. I couldn't handle the sheets on the crib at all.

We also had to teach our daughter early how to climb up on her own changing table. Once she reached 20 lbs, I couldn't lift her, and I had real trouble being down on the floor to change a diaper. Fortunately, she was a skinny little thing, so I could still lift her as late as eighteen months.