Because I’ve acted as a professional advocate for people born with norm-challenging bodies, quite a number of strangers and familiars have been writing to ask me what I think of the “Ashley Treatment.” Nine-year-old Ashley’s parents decided to remove their severely cognitively-impaired daughter’s uterus and “breast buds” and put her on high-dose estrogen therapy in an effort to keep her small and, they say, free of the discomforts of menstruation and adult breast development. They say this is for her sake; it’s all about Ashley’s quality of life.
For years I’ve been offering ethical and evidence-based critiques of surgeries and medicines designed to make more socially normal those children born with atypical genitalia, conjoinment, and similar conditions. So I suppose the people writing to me have expected me to condemn the treatment outright – to agree with David, a man with cerebral palsy, who writes on his blog, “I am Ashley. And you are Ashley, too.” Instead as I’ve listened to this story, I’ve found myself thinking about how I’m like Ashley’s parents.
I’ve been thinking about formula and daycare and pull-ups, and how I am a selfish mother. I’ve been thinking about that because I don’t believe Ashley’s parents’ protestations that “the Ashley Treatment” (as they themselves dubbed it) is all about their daughter’s well-being and comfort and not about their own. I know that’s what they are supposed to say – that they are doing it only for her. When I became a mother, I learned this was the line I was supposed to toe: I do everything for my child, and never, never anything that might put myself before my child. Heck, I learned this while I was still pregnant. Try having a glass of wine with dinner in public when you are eight months pregnant, and you discover that people will go to pretty extreme measures to make sure you understand Motherhood Means Selflessness.
I tried being a selfless mother. It almost led to disaster. I didn’t enjoy breastfeeding very much, but I stuck to it because I believed all the pamphlets people gave me about how good breastfeeding was for my baby. I still believe breastfeeding is best for babies. But in my case, breastfeeding meant severe sleep deprivation; at five months, my son was still feeding every two hours around the clock, in spite of every intervention I tried to make him feed less often. I thought I had to keep doing it, for his sake. Let’s just say that I realized I had to stop when I found myself under his crib curled up in the fetal position, unable to stop crying. I had enough cognitive function left to realize I was clinically depressed and suicidal, and that this was probably from sleep deprivation resulting from my attempts to continue breastfeeding. I weaned him, guiltily, and went to bed. My husband took over with formula. In a week I was my old self, and my husband was sleep-deprived and very out of sorts.
Then my son was really slow to learn to be dry through the night. My friends and pediatrician told me what I had to do: Take him out of nighttime pull-ups and let him wet himself in his sleep, so he would wake and learn not to sleep through peeing. They said within a few weeks – within a few months at most – he would be dry. I knew my son wanted to be dry, I knew it would probably be good for him to be dry. But I couldn’t take the treatment. I knew if I had to get up and change him and his bed every night, I would be unable to go back to sleep (my postpartum depression ruined my sleep cycle), and within just a few days I would soon be sleep-deprived and depressed again. I’d have a whole new round of “postpartum” depression. I would have tried to pass the duty on to my husband, but I knew perfectly well that if I heard him up, changing child and bedding, I would wake up enough not to go back to sleep. Move to a hotel for a few months while they worked it out? I don’t think so.
Now, I know the literature about how a depressed mother is bad for a child. So I could have justified my decision to keep my son in nighttime pull-ups by saying it was for his sake; he didn’t deserve a depressed mother. But the truth is I just didn’t want to be depressed. It’s no fun. So I kept my son in pull-ups for a very long time, far longer than most parents would. And I knew it was for my own sake, really.
Avoiding depression and having a drink now and then while pregnant aren’t the only forms my maternal selfishness has taken. When my son was in daycare, sometimes there was a day when I didn’t have to go to work, and I put him in daycare anyway, just so I could take myself shopping for unnecessary, pretty shoes, go out to a grown-up lunch, take a nap, and read some mind-candy magazines. I also travel more than my son would like, and more than I really must to keep my work going, but I do it because I really like my work. And while it’s true that babies who sleep better appear to be happier, and that helping a child learn to go to sleep and stay asleep on his or her own is good for the child in the long run, all parents know that the real reason we struggle to get kids to sleep through the night is our own sanity, our own well-being.
I remember I was in a meeting once about the surgical normalization of children when a feminist, disability studies philosopher declared, “No parent would ever choose a normalizing procedure for a child for any reason other than believing it was truly in the child’s best interest! We only do what is right for our children.” I couldn’t believe this is what feminism got us to. I protested that I was entitled to a little selfishness, thank you very much.
So how am I like Ashley’s parents? I’m selfish sometimes. Sometimes at the expense of my child.
That is to say, I’m sure it is true that keeping Ashley small will make it possible for her to be more actively involved in family matters, and maybe that would be good for her. (It’s hard to know, given her cognitive function.) As a teenager, I helped care for our own family’s “pillow angel” for years. My maternal grandfather had advanced Parkinson’s, and my mother decided to keep him home with us long after he lost the ability to communicate, long after we could tell whether he understood or even sensed any of what was going on. We tube-fed him, diapered and changed him, lifted him out of bed into a wheelchair using a hoist, set our alarms every night to get up in the wee hours of the morning, turning him to avoid bedsores. It sure would have been easier to keep him more involved in our daily lives if he had been smaller and thus easier to move. But mostly it would have been easier on us. We would have been less physically exhausted, we would have risked fewer injuries to ourselves, and we would have needed fewer people to come into our private space and help us sometimes. I’m not sure it would have been unreasonable, considering how much we were giving (and giving up) to care for him, to make him smaller, especially if we could have done so without causing him pain and suffering.
The problem I see with Ashley’s parents is less their decision than their dishonesty about it. Would menstrual pain and adult breast development really be so painful for Ashley that they warrant hysterectomy and mastectomy? Unlikely. It sounds more like Ashley’s parents find they have their hands full enough – literally – and they can’t handle any more. They don’t want to handle any more. I get that. Why not just be honest about that?
Because we’re not allowed to be selfish parents and selfish caregivers of people with disabilities, that’s why. And yet I can’t help but feel that if we were honest about this, then we could have a much more honest discussion about why we might choose for others genital normalizing surgeries, conjoined twin separations, growth hormones for “idiopathic short stature,” and “the Ashley treatment.” And maybe if we had that more honest discussion, we wouldn’t choose them so often. Maybe then we’d do a better job figuring out how we are really weighing best interests, and see that sometimes it isn’t the patient whose suffering we’re supposedly preventing – that it isn’t always the putative patient who need an intervention.
- Alice Dreger