Of twinkies and treadmills: On obesity prevention and the dignity of risk

Three twinkles snack cakes
These snack cakes, known as Twinkies, launched a battle in the supermarket aisle! (Note for Screenreaders: Image shows two golden snack cakes with creamy white filling in the center of one, which is broken open)

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

Social model or medical model? How to implement one or the other in a group home setting

Graduate social work students at Salem State University were asked to reflect on the ways in which they approach their work with clients with disabilities. Specifically, they were asked to reflect on what aspects of their practice were “under” the medical model of disability and which were “under” the social model of disability. Students were first introduced to the medical model of disability, in which the person’s impairment was the focus. Then, students were introduced to the social model of disability, in which society is seen as the disabling factor as opposed to the part of the person with the impairment. In order to begin to re-visualize what social work practice with a client with a disability would look like, students were asked to answer the following question:

“How can social workers approach the needs of people with disabilities without perpetuating the negative impacts associated with the medical model of disability? Provide a case example and then describe how you could/do/would engage in medical model-informed practice and social model-informed practice with that client.”

By Daniel Fraser, MSW Candidate

Salem State University

Where I work at a group home for people with intellectual disabilities, we have a client, who for the purposes of this discussion, will be referred to as H.I. Several years ago, H.I. began to feel uncomfortable standing or walking on her own, or with a walker. She feared she will fall and hurt herself.  A wheelchair was provided for her, as a way to make her feel more comfortable with her mobility.  However, staff were encouraged to get H.I. to stand up and walk with assistance of a walker, instead of allowing her to remain in the wheelchair on a full-time basis.  Each time a staff member would attempt to encourage her to stand up and walk with assistance of a walker, H.I. would become upset, and refuse to attempt to stand up. It is noteworthy that H.I. is able to transfer herself from her wheelchair to other locations, such as a recliner, her bed, or even the toilet, but that is the extent to which she feels comfortable enough to stand on her own.

When I first started working at the home, the director tried to implement a plan where H.I. was supposed to transfer herself from the toilet seat to the shower seat, each time she went to take a shower (she needs full assistance in taking a shower).  Each time staff went to implement this protocol, it caused a great deal of stress for H.I., and she would refuse to take a shower.

Taking the social model approach, it would have been better for all of the staff members, the director included, to talk to H.I., and find out whether she would rather use her wheelchair to get around, or if she would rather try walking with the walker.  By doing this, we would effectively eliminate the barrier of using a walker or walking on her own, that separates H.I. from the mobility which she chooses (Shakespeare, 2006).  Allowing H.I. to choose the way that she would prefer to move around would also give her more of a sense of independence, and make her feel the power of being able to make her own decisions.  Discussing her option of mobility would also likely take away any behavioral consequences that resulted from staff trying to implement the protocol of having her stand up and walk when she does not feel comfortable doing so.

By taking the approach that was implemented by the director, we were taking part in medical model thinking.  I believe that according to disability studies writer Tom Shakespeare, by not giving H.I. the choice of using the wheelchair to move around, and also by trying to get her to walk from the toilet seat to the shower seat, we were in essence, trying to eliminate an aspect of her disability, in order to fit in with what we wanted for her instead (2006).  By taking this approach, we also encouraged the behavioral consequence that resulted, along with adding more stress to an already stressful situation for H.I.

It is argued that one of the main limitations of the social model is that it essentially further disables someone who is already disabled, by not properly identifying the disability (Shakespeare, 2006).  By doing this, we are taking away part of the person’s identity, and more or less telling the person that even though they may have a disability, they should not recognize that disability.  In the case of H.I., if we do not encourage her to at least attempt to stand up and walk on her own, or with the assistance of the walker, it could lead to much less leg functioning, which could further impair her functioning.  So essentially, by not encouraging H.I. to move around without the assistance of a walker, and just continue to use the wheelchair, we could potentially be further disabling her.

It is a complicated situation, but it helps to look at H.I.’s situation through several lenses!

Shakespeare, T. (2013). The social model of disability. In Ed., Davis, L. (2013). The Disability Studies Reader, Fourth Edition. New York: Routledge.

Daniel Fraser is a candidate for the degree of Masters in Social Work at Salem State University’s School of Social Work. He holds a B.A. in Social Work from Salem State University. He hopes to do clinical work with students who have varying degrees of cognitive and intellectual disabilities with his career. Mr. Fraser has always enjoyed helping people out, and since joining his current place of employment, has really found his niche, where he can help people, and advocate for independence within the disability community. Mr. Fraser can be reached at d_fraser2@salemstate.edu.

Moving beyond “fixing” people: Social work practice with people with disabilities

Graduate social work students in Dr. Elspeth Slayter’s courses at Salem State University were asked to reflect on the ways in which they approach their work with clients with disabilities. Specifically, they were asked to reflect on what aspects of their practice were “under” the medical model of disability and which were “under” the social model of disability. Students were first introduced to the medical model of disability, in which the person’s impairment was the focus. Then, students were introduced to the social model of disability, in which society is seen as the disabling factor as opposed to the part of the person with the impairment. In order to begin to re-visualize what social work practice with a client with a disability would look like, students were asked to answer the following question:

“How can social workers approach the needs of people with disabilities without perpetuating the negative impacts associated with the medical model of disability? Provide a case example and then describe how you could/do/would engage in medical model-informed practice and social model-informed practice with that client.”

By Ndia Olivier, MSW Candidate

Salem State University

Working on a boarding high-school campus, I have the opportunity to be exposed to different students. During my first year, one student, in particular, stood out. J.M. was a breakout basketball star and had dreams of going to the N.B.A. Unfortunately, in his junior year, he was in a terrible car accident and as a result was paralyzed from the waist down. Everyone on campus was affected by his accident because J.M. was such a bright presence on campus and when he came back, he was a different person. He was less interactive on campus and lost his love for basketball.

The adults who were working with him every day were so fixated on the medical model, they wanted to “fix” him as much as they could so he could be ‘normal’ again. They suggested to his mom to take him to the best doctors who specialize helping people who are paraplegic learn to walk through virtual reality. They were not focused on his direct needs because they did not ask him, and that was detrimental to his recovery.

In using the social-model informed practice, the adults working with J.M. should have discussed with him how he saw his recovery going. By placing the focus on him rather than his disability, J.M.’s confidence in recovering could have been more positive than negative. Disability studies scholar Tom Shakespeare discusses the importance of focusing on the individual and not the impairment in order to create a confident space (Shakespeare, 2016).

One of the limits in the social model approach, however, is the idea that individuals with disabilities should disregard their impairments. More specifically, it is stated that “the social model so strongly disowns individual and medical approaches, that it risks implying that impairment is not a problem (Shakespeare, 2016 p. 218)”.

The medical model is helpful when we are utilizing action practices that are suggested by the person with the disability and not the people around them who are looking at it like a problem that needs to be corrected. As social workers, it will only benefit the clients we are working with if we are their advocates and find a balance between the medical model and the social model.

Shakespeare, T. (2013). The social model of disability. In Ed., Davis, L. (2013). The Disability Studies Reader, Fourth Edition. New York: Routledge.

Ndia Olivier
This is Ndia Olivier, an MSW candidate at Salem State University’s School of Social Work. (Note for Screenreaders: Image shows a confident Black woman in a yellow dress who is smiling and standing in front of a river)

Ndia Olivier is a candidate for the degree of Masters in Social Work at Salem State University’s School of Social Work. She holds a B.A. in Psychology from College of the Holy Cross. She hopes to do create change and be an advocate for the voiceless with this career. She wanted to study social work practice with people with disabilities to learn about a population she was unfamiliar with. She is striving to be a well-rounded social worker and learning about one of the minority groups in our society and becoming more self-aware, is key. Ms. Olivier can be reached at ndia.olivier@gmail.com.

“Letting” people who are non-verbal communicate in their own way: A challenge for social work practice

Graduate social work students in Dr. Elspeth Slayter’s courses at Salem State University were asked to reflect on the ways in which they approach their work with clients with disabilities. Specifically, they were asked to reflect on what aspects of their practice were “under” the medical model of disability and which were “under” the social model of disability. Students were first introduced to the medical model of disability, in which the person’s impairment was the focus. Then, students were introduced to the social model of disability, in which society is seen as the disabling factor as opposed to the part of the person with the impairment. In order to begin to re-visualize what social work practice with a client with a disability would look like, students were asked to answer the following question:

“How can social workers approach the needs of people with disabilities without perpetuating the negative impacts associated with the medical model of disability? Provide a case example and then describe how you could/do/would engage in medical model-informed practice and social model-informed practice with that client.”

By Kasey Soucy, MSW Candidate
Salem State University

While working at a disability group home agency, I came to know“ Jane,” a person with Rett Syndrome. Jane was non-verbal and was unable to walk independently. She used a specialized walker to move around. In addition, she developed her own sign language in order to communicate. During the day, Jane would attend a day program. That program gave all nonverbal clients computers that had the “Picture Exchange Communication System (PECS)” system on it. Jane was required to use it at the day program and was also encouraged to continue using it at the group home. Jane would take home the computer, but she would leave it in her bedroom. She did this because she didn’t like it, and was comfortable with her own form of communication. The day program became insistent on Jane using the computer at home, so the director asked Jane to use it. Jane refused to use the computer and threw it across the room because she was so upset about being asked to do so. The day program still required Jane to use the computer so she would comply, however once she was in her home she didn’t use it and the staff did not force her to do so.

As a social worker, and using what I know now from this course, I would first ask whether Jane wanted to use the PECS system. When disability studies scholar Tom Shakespeare was discussing the social model of disability, he pointed out the idea of this practice is to make society adapt to people with disabilities. This could include allowing for people’s own communication choice to be honored or it could include providing accommodations like the PECS system for non-verbal clients. One of the barriers of the social model (Shakespeare, 2006, p. 219) is trying to make accommodations for people with disabilities without choice. The PECS system might work well for one client who is non-verbal, but it did not suit Jane and she did not want to use it. Shakespeare described limitations with the social model-informed practice as assuming there could be a “utopia” for people with disabilities as there would be no barriers. People with disabilities do not all function or adapt the same way so it is unrealistic to be able to accommodate everyone and it is insulting to force accommodations on people with disabilities if they do not want to utilize that specific accommodation. If Jane was given the option to use or not use the PECS system then that would still be utilizing the social model-informed practice because society is making the change for her and not expecting her to change. By forcing the PECS system on Jane, it is reverting back to the medical model practice because the program is making Jane adjust instead of learning Jane’s sign language.

Jane also used a specialized walker. I would engage in medical model-informed practice by acknowledging it was Jane’s body part that was impaired, and therefore disabled her. This is another limit of the social model-informed practice. As Shakespeare (2006, p. 218), the social model-informed practice is so focused on society being the barrier that it does not always acknowledge that a person’s body can also be the barrier. The medical model-informed practice is what helped Jane receive the specialized walker because Jane’s body was the barrier and she wanted to walk as independently as she could. The social model-informed practice can also be used by ensuring there are ramps for Jane so she can have easy accessibility.

From the macro level of social work, I believe we are on the right track with the social-model informed practice, however as Shakespeare (2006) pointed out on page 220, this model is not complex enough to include everyone. Intersectionality does not seem to be taken in to consideration with this model, which is a complicating factor. A strong model needs to be developed to acknowledge the complexities of people and their disabilities. A person’s environment, gender, race and other social identities need to be considered when developing models (which was not the case since the group of activists who rallied for this model were white heterosexual men (Shakespeare, 2006, p. 217)). The first step to be taken by every social worker should be to ask the person with the disability “what can be done to support you?” or “what do you believe needs to be changed so you do not continue to feel oppressed or feel like your voice is not being heard?”

Shakespeare, T. (2013). The social model of disability. In Ed., Davis, L. (2013). The Disability Studies Reader, Fourth Edition. New York: Routledge.

Kasey A Soucy
This is Kasey A Soucy, an MSW candidate at Salem State University’s School of Social Work. (Note for Screenreaders: Image shows a confident White woman in a beige sweater who is smiling and standing in front of a forest)

Kasey Soucy is a candidate for the degree of Masters in Social Work at Salem State University’s School of Social Work. She holds a B.A. in Psychology from Salem State University. She hopes to continue her career with the Department of Children and Families. Ms. Soucy chose to study social work practice with people with disabilities so she can have a better understanding with the clients she works with. She also wants to work with her agency in providing a more inclusive solution for working with people with disabilities. Ms. Soucy can be reached at k_soucy@salemstate.edu.