“Twinkies for Breakfast” to be published in an anthology on sisterhood!

Sisters-prelim-cover-460x684-sharpI am thrilled to announce that a new version of my essay, “Twinkies for Breakfast,” will soon be published as a chapter in the anthology entitled: Sisters Born, Sisters Found: Voices on Sisterhood from Around the Globe.  This anthology is edited by Laura McHale Holland.

Here is a preview of my essay……

Sometimes, I’m not just my sister’s sister. I haven’t met many others with such a problem. In our case, Amelia has an intellectual disability, and since our parents’ deaths, I feel the pull between my sibling role and de facto parental role. The dictum in loco parentis never quite felt so real before. Navigating the waters between sister and parent has become a regular challenge for me—especially when it comes to Amelia’s desire to eat Twinkies for breakfast. It all started three years ago when I became the “point person” for my sister’s home visits as our father was nearing the end of his life.

We were in the junk food aisle at Stop n’ Shop. I was not happy about this. The fruit aisle had been a total bust, as had been the cereal aisle. With her hand hovering over a package of Twinkies, Amelia turned to me with a dark look. Those pushing their shopping carts by us in the cramped supermarket aisle scurried away, sensing an argument in the air. People generally don’t take kindly to those who look different; in this case, those with an intellectual disability such as my sister. And nobody likes a family argument in public.

As an adamant professional advocate for the right to self-determination for people with intellectual disabilities, there I was, struggling with my sister’s food of choice for breakfast. In my head, I calculated the location of my line in the sand vis-à-vis the distance to a full-blown tantrum from Amelia. I chose the fruit route and made a plea for cantaloupe. “But I don’t want cantaloupe. I want Twinkies!” she declared in an overly loud voice, her pointer finger standing straight up. “They taste good with milk and tea.”

My counter argument came out as my arm angled to my hip. “But, Twinkies,” I stammered, “that’s, that’s just not breakfast food!”

Both glowering, neither of us was likely surprised by Amelia’s strident response. “It’s my ‘human right’ and you can’t stop me.” Her back stiffened.

I recalled that Amelia was a regular attendee at her group home’s human rights training sessions. The concept of human rights in day-to-day life choices is a central goal for all community-based people with intellectual disabilities who live in government-supported settings. In describing her activities at such meetings, Amelia acts out the role-playing she engages in. Generally, this involves standing up for one’s rights in decision-making at all levels—from self-defense and job choice to food choice. “On the one hand,” I thought, “this human rights training is totally right on. But on the other hand, how could they let a person with pre-diabetes eat Twinkies, of all things, for breakfast?”

I grew agitated. “It’s my house, and my wallet, and we don’t eat Twinkies for breakfast at my house!” My voice now met Amelia’s in decibel as I attempted to impersonate a parent, now that our mother was dead and our father was so sick. The parental tone did nothing to further our détente.

Her voice, even louder now, became more adamant: “They let me eat it at my house. I went to my human rights advocate. I eat one for breakfast with tea and milk. It’s what I eat for breakfast. I want it for breakfast.”

Freeze frame. This seemingly simple incident in the grocery store is actually about the foundation of modern disability policy writ small and large—the implementation of the “dignity of risk” concept coined during the de-institutionalization era by disability studies scholar Robert Perske, who first used the term in “The dignity of risk and the mentally retarded” published in Mental Retardation in 1972. In the article, he challenged disability system workers about “going overboard in their effort to protect, comfort, keep safe, take care and watch … this overprotection can … consequently prevent the retarded [sic] individual from experiencing risk that is essential for normal growth and development.”

By reflecting on the potential gain from experiencing day-to-day risk, Perske championed the need for people with intellectual disabilities to be able to take such chances as well. While I doubt that Perske thought much about Twinkies for breakfast, he did comment on the need for the acquisition of “prudent” risk taking to avoid what could be a “crippling safety.” Perske’s commentary has informed the disability service community to think deeply about how to best support people with intellectual disabilities living and working in the community. And yet, I wonder, have families really had the conversations we need to have about the nitty-gritty of the implementation of the dignity of risk, say, when it comes to Twinkies? Of course, the situation Amelia and I face is fraught with the not-sibling, not-parent confusion we navigate.

“Well,” I thought, “here I am, on the front line of implementing this important principle, as it relates to Twinkies for breakfast. “Somehow,” the cynical sister in me thought, “we’ve taken a wrong turn on this human rights stuff.” The disability civil rights professional shuddered in horror. Taking a deep breath—and a new tack—I posed this question to Amelia. “Okay, I understand and agree that it is your right to choose Twinkies, but will you at least also have some fruit, and think about how Twinkies impact those sugar levels the doctor warned you about last week, you know, because of how you’ve been feeling sick sometimes?” As her pseudo parent-figure, I felt compelled to lecture, and yet I also felt like a hypocrite, failing in my chance to effectively implement the dignity of risk.

Met with a studied and confident silence, Amelia turned away from me as she defiantly placed three packages of Twinkies in the shopping cart. So, as many parents have likely done, I bought the Twinkies to avoid a scene in the grocery store. And, needless to say, Amelia had her Twinkies for breakfast the next morning, with tea and milk.

While Amelia has since moved on from Twinkies to Count Chocula’s best, we do continue our discussion of her “sugar problem” and the importance of healthy choices, but the process is slow. I find I’m often stumped about how to support my adult sister on making her own choices, as I believe a balance must be struck between supporting the “dignity of risk” with the need to support a person’s health “security.” Or, maybe that’s just an overprotective sister talking. While many sisters may have such debates, when the power differential is so extreme the dynamics shift radically.

So, when I find myself struggling with Amelia over such issues as Twinkies, I look back to Perske to guide me. Recently, in looking over his seminal writing on the topic, I found Perske addressed overprotection in a way that challenges the reader to look deeply within: “Overprotection can keep people from becoming all they could become,” he wrote in his 1972 article. “Many of our best achievements came the hard way: We took risks, fell flat, suffered, picked ourselves up, and tried again. Sometimes we made it and sometimes we did not. Even so, we were given the chance to try.”

Drawing on my memory of this passage in my toughest moments with Amelia, I’m more able to step outside of myself. It’s taken me too long to realize that much of the learning that needs to be done is learning on my end—not Amelia’s. While my health-focused conversations with Amelia go on, I’ve learned to back off and respect my sister in ways I never thought I could. And in turn, Amelia has, on occasion, surprised me by asking for cantaloupe at breakfast.