JaeRan disability

Comfort

One of my favorite snacks when I was growing up was a piece of bread, lightly toasted and buttered, with cinnamon and sugar sprinkled on top. In a way it’s a surprising favorite food for me, because I’m not much of a bread person in general and even today I rarely eat bread in any form. Cinnamon toast was a standard after-school snack. I was good with restraint – I liked my bread barely toasted golden brown. My mom kept the butter in a butter crock so it was always room temperature and spread easily without tearing the toast. A light dusting of sugar and cinnamon was all I needed. Comfort.

I like coffee, I like toast, and I like the Bay area, so when I came across this headline, A Toast Story: How Did Toast Become the Latest Artisanal Food Craze, from a friend’s social media site, I had to check it out. But what I thought was going to be a story about hipsters and the over-priced “craft food” industry was instead a deeply moving story about mental illness, community, and comfort.

I encourage you to read this piece. Having spent two years working with people with schizophrenia-related disabilities, I have a particularly soft spot for people who are afflicted with this disability. It was through working with this population that I learned just how razor’s edge the line is that can separate “us” from “them” and learned to really see people with dignity and acknowledge their gifts and talents.

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JaeRan adoption, disability, naval-gazing, practice

Pain and empathy

This past week in the New York Times Magazine I came across this article, The Hazzards of Growing Up Painlessly, about a teenager who has a genetic condition that makes her unable to feel pain. Coincidentally on the same day I read this blog post by a Korean Adoptee, Joy Lieberthal. Joy writes, “It is so bittersweet to realize that without the pain, there can be little in the way of true joy and I struggle to make sense of the idea that oftentimes in adoption, this paradox exists time and time again.”

I’ve been thinking about this concept a lot in the past few years. I’ve talked about it in terms of something I’ve noticed frequently with adoptive parents who tend to over-compensate for the pain and trauma their child has experienced by attempting to eliminate pain in their children’s lives. One of the things I found most interesting about the story of people who do not feel pain is that some question whether or not these folks that can’t feel pain can also feel empathy or emotional pain.

The idea that empathy is driven from being able to relate to someone else’s pain based on one’s own knowledge of pain is fascinating. Roland Staud, the doctor who treated the teenager profiled in the NYT article, wondered if the connection between feeling physical pain and emotional pain would affect the teen. Author Justin Heckert writes, “[w]e sometimes experience emotional pain physically — Staud used the tried-and-true example of heartbreak, how the end of a romance can cause a physical pain — and he wondered if the relationship between the body and emotions also goes the other way; if a person lacks the ability to feel physical pain, is her emotional development somehow stunted?”

As it turns out, Ashlyn Blocker, the teenager at the center of this article, does cry and does react to others’ pain, even if she can’t describe hurt or pain. Is it true that to experience joy once must feel pain? Is it imperative to have a physical understanding how pain and suffering feels in order to be able to develop empathy? This study on folks with Congenital Insensitivity to Pain (CIP) and empathy found that those with CIP relied on their (what I imagine must have been learned) empathetic skills to imagine others’ pain.

In the past I have used the analogy that when we experience “growing pains” both physically and emotionally that it is a time of development and growth; like Joy, I have always subscribed to the idea that to know happiness and to be empathetic, one must have known pain personally. I have told adoptive parents who describe the ways they try to take the pain involved in adoption away that they can only provide a “soft landing” for their child because you can’t take away or prevent pain, and that it’s a normal part of growing as a human being – and further that those who don’t experience “growing pains” don’t “grow.” But this article gave me pause; clearly there are those growing and developing without first-hand experiencing the “pain” associated with growth; however I am still left curious about how pain is defined; and if the brain still reacts to painful stimuli even if it doesn’t tell your nerves to react.

How much is empathy a learned concept that can be taught or modeled by parents and how much is it a factor of our own experiences? And in what ways does this impact social work?  How schools of social work teach empathy for students who haven’t experienced much personal experience with pain or suffering?  On the other hand, how do we help students that have experienced trauma, pain or suffering to be reflective of how their own experiences impact the way their empathy is triggered and/or applied?

JaeRan disability, insider/outsider, the profession

Determining “best interests?”

I was recently part of a discussion that focused around disabilities and social inclusion and since then I’ve had a bunch of thought rattling around in my mind about how we as social workers determine what  is in someone’s “best interests.”

The basis of all of these thoughts comes down to this: at what point is a person considered so vulnerable and unable to “speak for themselves” that it is appropriate for the service professional or social worker to act against their own code of ethic (advocating for self-determination) and take away the option of choice because it was determined to be against that person’s “self-interest?”

We must negotiate that line or continuum, not just a daily basis, but multiple times in our interactions with, and decisions regarding, vulnerable persons. Our professions are pretty good at giving lip service to “empowerment” and “advocacy” and “self-determination” until we decide that the “client” is not acting in their “best interest” (according to OUR standards, of course) and then we step in to “protect” them.

Maybe this subjectivity is less ethically “sticky” if the client is causing harm either to him/herself or to someone else; but what about those areas in which harm isn’t exactly evident or in which the harm to self or others is much more subtle? For example, this discussion centered around social inclusion and persons with disabilities. More specifically, the conversation began with ways in which direct support staff or professionals working with clients who exhibit these characteristics can “encourage”  social inclusion in the greater community. Someone in this group stated they thought that some of the examples given were more coercive than “an encouragement” and that the people in question (clients) did not appear to have given consent to enter these “friendships” with community members (in fact, it seemed more about the community members who volunteered/mentored the person with the disability than an equal relationship).

Several years ago I worked in a residential group home for persons with disabilities. One of my duties was to take the residents out into the community – for example, to movies, the mall, the library, to parks, etc. Our job was not to “help” the residents “make” friends, our job was to facilitate their interactions in the community. Some of the residents did not want to have friends, in the community or otherwise. They would tell you directly that they had all their social needs met by family members who visited and occasional (and rare) conversations with staff. Part of the lack of interest in socialization had to do with their disabilities, and other parts may have been due to personality or temperament. After the discussion from last week, now I wonder what I would have done if part of my job duties had been to “find” friends for the residents. There seems to be no guidelines for this – helping our vulnerable clients “make friends.” What is the power dynamic in these relationships, when we are basically encouraging volunteer mentors from the community and asking them to befriend persons who are vulnerable?

Either way, if forcing residents who have low thresholds for social interaction and engagement makes them feel bad, do we make them anyway? Could one argue that a client is self-harming [emotionally] if it is determined that a person needs social interaction and s/he refuses?

How do we facilitate choices for clients while also determining what’s in their best interests and subtly (or not so subtly) imposing our views on them? I’m not talking about social exclusion here – I am not advocating that we do not consider the social needs of the people we work with. I am asking about those clients who have low thresholds for social interaction and how much we force it upon them, because we think it is in their best interests?

JaeRan disability, ethics, insider/outsider, policy, practice, privilege, reform, the profession, the system

Treating difference

– otherwise known as the post in which I ruminate on the “other” and whether inclusion or exclusion is the answer.**

We (those of us who fit in to a dominant group) like to tell people who don’t (the other) how they should live. And then we often expect gratitude from them for our generosity in thinking about their “best interests.”

One of the books I’m currently reading is “Developmental Disabilities and Child Welfare.” by Ronald Hughes and Judith Rycus. This book, published in 1998, is a good primer for anyone looking to become more informed about how child welfare professionals need to understand and respond to children in the child welfare system with disabilities. While reading this book earlier today, I was struck by the author’s discussion about the importance of the inclusion of children with disabilities into mainstream settings (here I believe they mostly are referring to educational settings, but could definitely be expanded to all settings in which typically developing children interact).

The authors stress that segregation is a disservice to both individuals with disabilities as well as to society in large, because for the individual it 1) denies the person the opportunity to be part of the same world as anyone else, 2) it sends a message that they inherently can’t participate in the same activities as the rest of society, and 3) singles them out for special treatment rather than treating them as their typically-abled peers.

The disadvantage to society at large is that segregation perpetuates the stereotypes and myths about persons with disabilities, and that society will not recognize the many contributions that are made to society by persons with disabilities . The authors write, “An extension of this myth is that people with disabilities prefer life and activities with ‘their own kind.’ It is true that years of segregation can contribute to feelings of anxiety and fear when a person with a disability is confronted with an integrated environment…This myth is often a rationalization to cover and reinforce our own discomfort in the presence of persons with disabilities” (p.23). Continue reading “Treating difference” →

JaeRan disability, ethics, privilege, reform, the system

Does the benefit of an exposé outweigh ethical problems?

I’m taking a class this semester called Disability Policy and Services. In last week’s first session we saw the documentary, Willowbrook: The Last Great Disgrace, an expose of the dehumanizing treatment of institutionalized persons with disabilities.

We were asked to write a summary response to the documentary. While the film precipitated the world’s attention to the plight of those who were institutionalized, I couldn’t help feeling really uncomfortable about watching the documentary.

The words I wrote in my notebook immediately after the film include: exploited, victimized, re-victimized, hopeless, helpless, sensationalized.

As much as I understand that Geraldo Rivera’s expose did SO much to bring attention to the disgraceful treatment of those institutionalized at Willowbrook and other institutions, the first thought that ran through my mind as the cameras panned on the naked, dirty residents was whether the film was exploiting these residents once again, for the purpose of journalism. Did they have consent? Could they even have elicited consent? Would I want my family member, naked and dirty and running through an institution be filmed for the whole nation and world to see? I understand that the purpose was to highlight how awful the living conditions (if you can call it that) were, but I felt viscerally that they were still portrayed as inhuman.

I am all for the use of journalism to highlight inequity; I just wish it didn’t also sometimes exploit the very persons they are claiming to respect. One more thought – I guess what I’m asking is, to what extent is it justifiable to exploit the vulnerable? We might say the ends justified the means…but that makes me really uncomfortable…I’d love other people’s thoughts about this.

Below is the trailer for the documentary.