By Elspeth Slayter, MSW, PhD
That overweight and obesity among adults with intellectual disabilities are matters of great concern is not up for debate. Information about the prevalence of both obesity and overweight (and related factors) are well documented in the literature (Spanos, Melville, and Hankey, 2013; Stancliffe, Lakin, Larson, Engler, Bershadsky, Taub, and Tichá, 2011). However, what has really caught my attention as of late are data suggesting a relationship between type of living arrangement and both overweight and obesity (Tichá, Hewitt, Nord and Larson 2013). Specifically, it appears that the more ‘independent’ a person’s living arrangements are, the more chance there is of becoming overweight or obese. As the sibling of a fairly independent community-based person with an intellectual disability, I am not surprised to read this finding. With my sister’s independence comes the dance of balancing choice and health – a dance I sometimes think I am more interested in than she is given our regular conversations about Twinkies – and treadmills.
While our conversations are ostensibly about a popular “snack cake” and exercise equipment, they are actually an exercise in what can be called “choice management” – or – what I often fear is my lackluster implementation of support for self-determination. I, as many siblings likely do, work hard to take supporting vs. instructing roles in my sibling’s life. This is never more challenging for me than in the face of my sister’s health status realities. I would wager that siblings, parents, residential staff and individuals with intellectual disabilities alike experience this micro challenge in the practice of honoring self-determination. Therefore, the goal of this essay is to use one sibling’s perspective to relate findings about independent living, obesity and overweight back to the more theoretical realm in which we consider a guiding principle in this field – the “dignity of risk” concept coined by Perske (1972). In this essay, I will provide an example of a “choice management” quandary, review a best-case scenario resolution and make recommendations for how to move forward as a field on this matter.
Let me start with an example of a “choice management” quandary. My adult sibling is actively battling her weight. Extra small in stature, the pounds don’t have many options for spreading out across her tiny frame. As the pounds add on, she strains to walk up the three steps into my apartment. At night, I can easily hear her labored breath in the guest bedroom. These moments are tough to for me to take. She is well aware of her “weight problem,” as she puts it. Each week brings her proud report of hours spent on her treadmill in her residence, “at least 45 minutes per day,” she tells me. The glow on her face at this admission permeates the telephone line, and I can feel her happiness. Of course, I reassure her that this is “fantastic” and say things along the lines of “I wish I could say the same for me, I’m so proud of you!”
Despite this self-directed success, I know that no matter how much my sibling walks on the treadmill, her absolutely necessary use of atypical antipsychotic medicines will not hinder the regression of her significant girth. I’m not even sure that that exercise will assist her in her cardiovascular health – so much of the damage appears to me to be done. But the fact is, my sibling’s weight problem ventures beyond medication side effects, my sister is downright hungry. Hungry for the food she wants, when she wants it – and as much of it as she can get. “I love this food,” she said the other day, on her third slice of birthday cake. While some of her hunger is likely driven by medication side effects, my sibling has also made it clear that overconsumption of “her favorites” is also a choice. This, in turn, likely relates to her challenges in connecting current actions with future outcomes. And it is in this realm that our field’s efforts at health prevention, health literacy and fitness clash with staffing realities – and the implementation of human rights around the dignity of risk and self-determination concepts. In our family’s life, this realization all came to a crashing head when it came to one topic: her choice of Twinkies, the popular “snack cake,” 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. There we were, siblings, in the supermarket one day. Our mother was dead – our father was terminally ill and I was in loco parentis. 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, she 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 my sister. I chose the fruit route – and made a plea for cantaloupe. “But I do not want cantaloupe, I want Twinkies!” she declared in an overly-loud voice, her pointer finger standing straight up, “they taste good with milk in my 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!”
Glowering at each other, neither of us were likely surprised by her strident response. “It’s my ‘human right’ and you can’t stop me,” her back stiffening. I recalled that my sister 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, my sister 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?”
Agitated, my voice now met my sister’s 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. The parental tone did nothing to further our détente. Her voice even louder now, my sister 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 with milk. It is what I eat for breakfast. I want it for breakfast.” 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, this term was first used 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 [sic] individual from experiencing risk that is essential for normal growth and development.” (Perske, 1972: 24)
But here’s the question – where is the line in the sand? 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 the acquisition of ‘prudent’ risk taking in order 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 and residential staff 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 my sister and I face is fraught with the not-sibling, not-parent confusion we navigate, but this is likely parallel to staff-consumer relations as well.
Back in the supermarket, I thought “Well, 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 my sister. “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 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. Met with a studied and confident silence, my sister 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 in order to avoid a scene in the grocery store. And, needless to say, my sister had her Twinkies for breakfast the next morning, with milky tea.
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 am often stumped about how to support my adult sister on making her own prudent 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 have taken to looking back to Perske to guide me. Recently, in looking over his seminal writing on the topic, Perske addressed overprotection in a way that challenges the reader to look deeply 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)
Drawing on my memory of this passage in my toughest moments with my sister, I am more able to step outside of myself. It has taken me too long to realize that much of the learning that needs to be done is learning on my end – not my sister’s. While my health-focused conversations with her go on, I have learned to back off and respect my sister in ways I never thought I could. And in turn, my sister has, on occasion, surprised me in asking for cantaloupe at breakfast. Despite this success, I fear that my influence has changed my sister’s self-determined narratives as they relate to weight. In addition to her self-directed weekly treadmill utilization reports, my sibling tells me a lot about her Friday lunchtime diet – the day she is allowed to choose her meal from a takeout menu at work. Last week she told me “I ate a salad instead of a meatball sub.” The sister in me felt happy yet conflicted, was she parroting my agenda? ethicist in me reminded her to eat what she thought tasted good – but to remember to get some protein as well. I will take this happy medium as a best-case scenario.
It is my hope that this scenario –and the resolution our family found ring a bell for other families – as well as front-line residential managers and staff. After years of observing high turnover, stretched staffing and significant use of relief staff with limited training, our field needs to step back and ask ourselves about how we are implementing the dignity of risk as it relates to obesity and overweight. Do our systems allow us to take the time or space to step outside of our roles in order to ask ourselves about how well we might be doing in the dance of self determination and choice management? How do our training and supervision teams approach such topics – or do they? Is it easier to substitute judgment than to have a difficult conversation with someone who is, say, hell bent on Twinkies for breakfast?
Perhaps the answer starts with looking more deeply at how people with intellectual disabilities think about and experience food, weight, health and choice. In their volume on the ethnography of obesity and overeating, McCullough and Hardin (2013) point out that we really don’t know enough about why people overeat. These anthropologist reference ‘cultures of eating’ – leading me to think our field should consider both how staff, administrators, families and individuals conceptualize the culture of eating for people living in community-based settings with respect to choice management. Moving beyond standard phrases from obesity prevention and health promotion efforts – let us ask ourselves how do individuals with intellectual disabilities conceptualize obesity and overweight and how should this drive our day-to-day actions?
I’m not throwing out the Twinkies in the cupboard just yet.
Anderson, L. L., Humphries, K., McDermott, S., Marks, B., Sisirak, J., & Larson, S. (2013). The state of the science of health and wellness for adults with intellectual and developmental disabilities. Intellectual and Developmental Disabilities, 51(5), 385-98. Retrieved from http://search.proquest.com/docview/1491201301?accountid=13661
McCullough, M. and Hardin, J., editors (2013). Reconstructing Obesity: The Meaning of Measures and the Measure of Meanings. Berghahn Publishers: New York.
Perske, R. 1972. “The dignity of risk and the mentally retarded.” Mental Retardation 10:24-27
Spanos, D., Melville, C. A., & Hankey, C. R. (2013). Weight management interventions In adults with intellectual disabilities and obesity: A systematic review of the evidence. Nutrition Journal, 12, 132. doi:http://dx.doi.org/10.1186/1475-2891-12-132
Stancliffe, R. J., Lakin, K. C., Larson, S., Engler, J., Bershadsky, J., Taub, S., . . . Ticha, R. (2011). Overweight and obesity among adults with intellectual disabilities who use intellectual Disability/Developmental disability services in 20 U.S. states. American Journal on Intellectual and Developmental Disabilities, 116(6), 401-18. Retrieved from http://search.proquest.com/docview/929150701?accountid=13661
Tichá, R., Hewitt, A., Nord, D., & Larson, S. (2013). System and individual outcomes and their predictors in services and support for people with IDD. Intellectual and Developmental Disabilities, 51(5), 298-315. Retrieved from http://search.proquest.com/docview/1491201352?accountid=13661