What do you get when you mix the taboo nature of discussing sexual intimacy with the social stigma surrounding intellectual and developmental disabilities? The answer: a heck of a lot more problems than you might think.
I would like to start this piece with a brief exercise one of the health teachers at my high school conducted at the beginning of sex ed. Repeat after me: PENIS. VAGINA. PENIS. VAGINA. Why do you think she would make a room of teenagers yell these words in school? Isn’t that inappropriate? If you think it is, you proved my point from earlier. Sexual intimacy and anything loosely related to sex are currently incredibly taboo topics. To help break down the air of discomfort surrounding such topics, that health teacher did something many are afraid to do: she spoke openly and encouraged others to follow suit.
One could argue these topics are not to be spoken about simply because we are taught to not speak about them. A child can ask why their anatomy is different from their siblings, but they will often be met with shushes or roundabout answers. In many cases, there is no reason for this reaction other than traditional values. Those same values are often times what causes conflict in regard to sexual education in public schools.
My sex ed experience at a public school was mediocre at best. I can recall learning about male and female genitalia as well as the common sexually transmitted infections. Contraceptive tools were discussed but the take-home message was always “abstinence is the best form of birth control.” Consent was not taught nor were the proper ways to actually engage in sex, just that if we did it we should do it safely. This is the public school sex education experience I received as a non-disabled teenager. Seems quite lacking. And if this is what I received, what is the experience of children and adolescents with intellectual and developmental disabilities?
Working in a behavioral school for boys with emotional, developmental, and intellectual disabilities gives me an interesting perspective. The school serves boys aged, in my experience, between seven and eighteen years old. They age out of the school at eighteen despite the progress they have made and still need to make. These students come from any district in Massachusetts and can be of any race and ethnicity. Typically, the school serves a diverse population. They are taught the same subjects most other students in the country are taught just with more academic and therapeutic support. However, these students are not always provided with a health class.
I worry greatly about this institutional deficit, partly due to my own ableism. These students are receiving very little, if any, sexual education during the school year from our faculty and who knows what they see on the Internet and what their families and friends are telling them. As they get older and begin to develop their curiosity, I am worried that they might not always have a reliable source of sexual education. With that, the concept of consent is often discussed but not in relation to intimacy. I don’t know if the connection between consent and sexual activities has been made or if it ever will be in this school setting. I don’t know if some of these students would understand the magnitude of these topics. I’d like to think these kids can do anything, but from what I’ve seen I don’t know if I would feel confident in their understanding. I wish I could feel otherwise.
Confronting my personal ableism has been difficult, but I know it will benefit myself and others in the social work field who do the same. It’s important and necessary to challenge our own ideas. Gaining experience in areas which we hold biases towards educates us more accurately. Critically examining our personal ableist ideas pushes us to gain a different perspective. Through this difficult process, I feel empowered to advocate for a stronger sexual education program for these students and others in similar settings. I would not have developed this drive without looking inwards and confronting my ableism. I encourage all to do the same. Who knows what the next revelation might be?
Editor’s note: This reflection comes at a time when it is recognized that only three U.S. states explicitly include special education students in their sexual education requirements despite high rates of sexual abuse in this community. Specifically, the disability community experiences sexual abuse at seven times the rate of the non-disabled community according to the Department of Justice. Read more about this in a recent Op Ed by Cammie McGovern.
Max Goldberg is an MSW student at Salem State University. He completed his undergraduate degree at Roger Williams University, studying Psychology with a focus in Clinical Psychology as well as a minor in Professional and Public Writing. Previously, Max has held a range of roles in multiple educational settings. Upon completing his graduate studies, Max aspires to work with the Deaf community as an advocate and educate the hearing world on the various issues d/Deaf people face.
One of my duties as a group home worker certified by the Medication Administration Program (MAP) is to accompany my clients with intellectual disabilities to doctor’s appointments. My clients often state that they feel more comfortable having me go into the examination room with them during such appointments. In my experience, nurses and doctors most often direct their questions to me rather than speaking directly to the client in the room. While in these appointments with my clients, I now realize that most of the time I take part in ableism, by answering any questions posed by the nurses or doctors, instead of referring them to my clients. There are times when I am aware of this happening, yet, I still answer the questions. However, there are also times when I repeat the question asked of me by the nurse or doctor, to my clients, to have them answer the question for themselves.
After reading more about ableism, and the different life experiences explained by the authors of Disability: A Diversity Model Approach in Human Service Practice (Mackelprang & Salsgiver, 2015), I am more aware that my actions in the doctor’s office with my clients is a form of ableism. As such, I am playing a part in the compartmentalization of my clients. It is known that those in the medical profession often tend to compartmentalize persons with disabilities, and not recognize people with disabilities as having the same basic human rights as they have, rather they tend to look down on people with disabilities, almost treating them as someone who is less of a person than them (Mackelprang & Salsgiver, 2015).
Looking back, I can now also see this was something I noticed when I first became certified to administer medications. The very first time I opened the medication book for my clients, I saw the list of medications they had to take, and it seemed to be endless. I remember thinking to myself when I saw the list, “there is no way one person should have to take such a laundry list of medications,” along with thinking, “I wonder how many of these medications counter-balance one another, cancelling out their effectiveness.” Since I have learned about it, I can now see these long lists of medications as a possible result of the application of the medical model of disability (Mackelprang & Salsgiver, 2015). It may be controversial, but it is my belief that my clients are likely only on these medications as a way to either attempt to cure their disabilities, or to speed up the euthanizing process.
Self-awareness of ableism is important, because as social workers, we work toward providing ways for people with disabilities to live their lives as independently as possible. By taking part in ableism, we are continuing to carry on this stigma about people with disabilities, that they are not competent enough to be able to care for themselves, and give their own answers to those in the medical profession.
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 firstname.lastname@example.org. Mr. Fraser can also be reached via social media at @disabilitysw on Twitter.
I never thought that my part-time job as a waitress could possibly inform my social work practice in any way. Recently, in my disability and social work course, I was asked to consider my own ableism. After some reflection, I realized that, unfortunately, I have recently engaged in ableism at my job. While waitressing, many times during the day, a person with a disability will come in either on their own or with a family member or friend.
One time in particular, it was a busy Saturday, and a young man and his grandmother came and sat down at my table. I went up to them and said hello. When the young man began to speak to me, I couldn’t understand what he was saying. He started to point at the pictures in the menu and he was making grunting sounds. I looked towards the grandmother and blatantly asked, “Do you know what he wants?” The grandmother gave me a strange look, pointed towards her grandson and said, “He will tell you what he wants, he can do that, you know.” I looked towards the man, feeling ashamed of myself, and apologized. Then, I asked him what he would like to drink. He took out a book of pictures with words underneath each picture. He flipped through the book until it got to the page with drinks and food on it. After looking and looking for the right picture, he finally pointed to one picture in particular and looked up at me and smiled. And I said, “Would you like a root beer?” He politely nodded and smiled at me and then pointed to a picture of popcorn and signed the word for please. I said, “Ok, why don’t I get your drinks and I’ll grab you some popcorn as well.”
In reflecting on this incident, I can see that I engaged in what Mackelprang and Salsgiver (2015) called “compartmentalization.” Compartmentalization is meant to stereotype people with disabilities and to place them in a ‘predominated’ category Indeed, many times before I have seen a person with a disability enter the restaurant and if they cannot speak, the person who is with them will speak for them to make things more convenient for the wait staff. After some reflection, it should not matter how quickly the person can tell me their order, nor how they do it. Rather, they should be allowed to order in their own way and on their own. I did not take the time to see that this young man could order on his own and that he did not need the assistance of his grandmother. Mackelprang and Salsgiver (2015) comment that “pity places people with disabilities in a totally powerless position. They are not in control of their own lives. They are childlike. They are dependent…” (Mackelprang & Salsgiver, 2015, p. 113). This relates to what I have observed in myself. I saw that this young man had a disability and I stereotyped him with other persons with disabilities I had seen, when in fact he was not dependent on his grandmother, he was quite independent. Since then, I have taken the time to stop and analyze how I talk to people and to not rush through my day without thinking about what I say, or how I am thinking about a situation. Although our society is structured in an ableist way, making us all susceptible to ableism, I do not want to behave in an ableist manner. Rather, I want to be someone who supports people with disabilities.
As a social worker it is important to understand what ableism is and how we each engage in it in our daily lives. If we want to work with people with disabilities we need to understand a person’s rights to dignity of risk, and their right to engage in self-determination. Looking back at that day with the young man who loved root beer, I can tell you all the rest of the meal was much different from how it was at the beginning. I took my time in talking to the man, and only asked the grandmother if she needed something rather than asking if her grandson needed something. After this experience of being called out by the grandmother, I feel I am more aware of how I think about disability in the restaurant and in my social work practice.
Mackelprang, R. & Salsgiver, R. (1999). Disability: A diversity model approach in human service practice, 3rd edition. New York: Lyceum Books.
Sage Lucas is a candidate for the degree of Masters in Social Work at Salem State University’s School of Social Work. She holds a Bachelors in Social Work, with minors in Criminal Justice and Psychology from Salem State University, and Sage also holds a certificate in Childhood Studies from Salem State University. She hopes to continue her career in social work, working in the mental health field. Ms. Lucas chose to study social work practice with people with disabilities because she found a gap in her knowledge as a social work, and wanted to be as well rounded a social worker as possible. Ms. Lucas can be reached at email@example.com
I was moved by these readings. I am also appreciative for the insights and raw honesty of the people who shared their experiences. It is sad that our society has operated from both the medical and moral models of disability, and as such has fallen victim to assumptions about people with disabilities and their experience with sex, love and intimacy. Even though this is not a topic I have given much thought to before, I am afraid that I, too, may have been very ill-informed regarding the experiences of people with disabilities before engaging with these readings.
The theme that I found throughout these readings was that there are two different sets of challenges that people with disabilities may face when it comes to dating and intimate relationships. First, one set of challenges involves the specifics of people’s disabilities, and finding creative ways to overcome them within a relationship. Second, the other challenges appear to be centered around societal views that create barriers to people with disabilities even forming intimate relationships. These barriers can manifest in different ways, whether that be as a result of a lack of respect for self-determination within a residential setting or assumptions on the part of a potential partner when they find out the person they are talking to has a disability, perhaps ending the relationship before it starts. The latter set of challenges are that which social workers should be paying attention to addressing in our work. The more we educate ourselves and others about the presence of ableism, and work to shift the perception of people with disabilities as not interested in or capable of physical intimacy, the first type of challenge become quite manageable.
A common thread through all of this seems to be fear. In his article on the dignity of risk concept, Craig Parson states, “one of the biggest barriers is fear: fear of the unknown; fear of legal ramifications and fear of failure” (Parson, 2008, p. 28). We see this barrier manifest itself within individuals, institutions and the larger society. Unfortunately, this may be the driving force behind laws, regulations, policies and policy implementation that end up creating damage to people. When operating from a place of fear, social workers may deny people opportunities to fail and try something all should have access to. Perhaps social workers neglect to honor people’s rights in the hopes of avoiding a negative situation. This approach can prove to be ineffective in so many ways. In this regard, Ann Thomas has a powerful message in sharing her own story, “but all it takes to remove that fear is self awareness and a conversation with the person who is different” (Thomas, 2015, p. 1). Although this statement sounds so simple, there is so much truth to it. If social workers were to take on this attitude of curiosity and openness, some of these barriers could start to fall away for the people with disabilities that we work with.
Parsons, C. (2008). The dignity of risk: Challenges in moving on. Australian Nursing Journal, 15(9), 28.
Thomas, A. (2015). Dating in a wheelchair: Your problem, not mine. The New York Times. Retrieved from http://nytlive.nytimes.com/womenintheworld/2015/04/08/dating-in-a-wheelchair-your-problem-not-mine/ (Links to an external site.)
Maria Scippa is a candidate for the degree of Masters in Social Work at Salem State University’s School of Social Work. She holds a Bachelors in Social Work from Salem State University. She hopes to continue her career in social work, working with children and families. Ms. Scippa chose to study social work practice with people with disabilities because this knowledge will help her in providing well informed, competent services to families that have a person with a disability. Ms. Scippa can be reached at firstname.lastname@example.org.
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