We were in the junk food aisle.  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, my sister Amelia turned to me and gave me a very grumpy look.

A woman pushing her shopping cart by us in the cramped Stop & Shop aisle scurried away, sensing an argument in the air.

As an adamant advocate for self-determination for people with intellectual disabilities, I was struggling with my sister’s food of choice for breakfast, debating where to draw my line in the sand – or whether I should do so at all.  I chose the fruit route – and made a plea for cantaloupe.

“But I do not want cantaloupe, I want Twinkies!” she declared, pointer finger straight up, “they taste good with milk and tea.”

“But, Twinkies,” I stammered, “that’s – that’s just not breakfast food!” My counter argument came out as my hand went on my hip.

“It’s my human right and you can’t stop me,” she said loudly, her back stiffening.  I recalled that Amelia was a regular attendee at her group home’s human rights meeting, in which people role played standing up for their human rights in decision-making at all levels – from self-defense 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?”

Agitated, my voice now met hers in decibel. “It’s my house, and my wallet, and we don’t eat Twinkies for breakfast at my house!” I stammered, attempting to impersonate a parent, now that our parents were dead.

The parental tone did nothing to further our détente. Her voice even louder now, Amelia 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 is 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.” Coined during the de-institutionalization era by disability studies scholar Robert Perske at first used this phrase to challenge 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 individual from experiencing risk that is essential for normal growth and development.”  (Perske, 1972: 24)

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 am doubtful that Perske thought much about Twinkies for breakfast, he did comment on the need for ‘prudent’ risk taking, stating:

“Knowing which chances are prudent and which are not—this is a new skill that needs to be acquired…Now we must work equally hard to help find the proper amount of risk these people have the right to take. We have learned that there can be healthy development in risk-taking and there can be crippling indignity in safety!” (Perske, 1972:24).

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 we really had the conversations we need to have as service providers and advocates about the nitty gritty of the implementation of the dignity of risk – say – when it comes to Twinkies?

“Well,” I thought, “here I am, on the front line of implementing this important principle via arguing with my sister about the merits of a healthy breakfast versus the demerits of Twinkies. “Somehow,” the cynical me thought, “we’ve taken a wrong turn on this human rights stuff.” The disability rights movement supporter in me nearly passed out at this thought.

Taking a deep breath – and a new tack – I posed this question to Amelia.  “OK, 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 sister and pseudo parent-figure, I felt compelled to lecture, and yet I also felt like a hypocrite, failing in my chance to effectively implement of the dignity of risk.

I was met with silence as Amelia defiantly placed three packages of Twinkies in the shopping cart. So, as many parents have likely done, I bought the Twinkies in order 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 – and did give a bowl of cantaloupe a try.

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 am often stumped about how to support an adult with an intellectual disability on making choices, as I believe a balance must be struck between supporting self-determination that incorporates the ‘dignity of risk’ with the need to support a person’s health “security.” Or, maybe that’s just an overprotective sister talking.

So, when I find myself struggling with Amelia over such issues as Twinkies – and more recently dating, sexuality and contraception – I look back to Perske to guide me. Recently, in looking over his seminal writing on the topic, Perske also addressed the disability service community, asking them to look within:

“Overprotection can keep people from becoming all they could become. 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.”  (Perske, 1972:24)

And in reading this passage, I was able to step outside of myself.  I look back at myself and see that it has taken me too long to realize that much of the learning that needs to be done is learning on MY end. While my health-focused conversations with Amelia go on, I have learned to back off and respect my sister in ways I never thought I could.  And in turn, Amelia has, on occasion, surprised me in asking for melon for breakfast.

Perske, R. 1972. “The dignity of risk and the mentally retarded.” Mental Retardation 10:24-27.

Note: The name “Amelia” is a pseudonym and is used to protect the privacy of the author’s sister

Dr. Elspeth Slayter is a Fellow in the Advanced Leadership in Neurodevelopmental Disabilities Program at the Eunice Kennedy Shriver Center of the University of Massachusetts Medical School. Dr. Slayter is also an Associate Professor of Social Work at Salem State University in Salem, Massachusetts.