Bus Rides and Back Rooms: Autism, Family, Meaningful Occupation & Life Transition

Bus Rides and Back Rooms:

Autism, Family, Meaningful Occupation & Life Transition

Pamela Block, Hope Block and Barbara Kilcup

Society for Applied Anthropology Meetings, Santa Fe, New Mexico, March 19, 2009.

Hope Block, my sister and co-author of this paper used to ride the bus several hours each day to get to school. No, we didn’t live in rural Alaska, we lived in Southern Rhode Island within a few miles from our local public schools. From the early 1970s until the late 1980s, Hope was bussed to a private, segregated, Easter Seals-funded special education facility in East Providence, Rhode Island, called Meeting Street School. Even if traveling directly from our house to the school, the ride would have been somewhere close to an hour in length. However, after picking up my sister first, the driver of the small-bus weaved through neighborhoods throughout Southern and Central Rhode Island picking up other children and arriving at the school after somewhere in excess of two hours of driving. As Hope says, “It was a lot of wasted time.” At the time, Hope had no way of telling us she was spending so many hours on the bus. We found out, because the school hosted “siblings” days every summer and on those days my younger sister and I joined Hope on the bus. At some point we complained about the length of time on the bus and our parents asked the bus driver about it. She told them that since Hope was the quietest, she tended to pick her up first and drop her off last. I believe after our parents’ inquiry that the bus routes were adjusted and Hope had a faster trip. I suppose 2 hours a day is better than 4 hours per day of rush-hour travel on the bus, but still quite a strain on her. To this day she has very low tolerance for traveling when there is any kind of interruption or congested traffic.

I mention this because my own time on a school bus during this same period was probably about a total 30-40 minutes a day. Except under extraordinary circumstances, the daily bussing of a disabled child to a remote location is less common nowadays. Children tend, if not to attend the closest public school, at least to a school in the same district. Opportunities exist, even if limited, for inclusion in typical classrooms and interaction with typical students. Our mother and co-author, Barbara Kilcup, worked as a special education teacher in Newport Public Schools 1975-1998, switching to teaching kindergarten from 1998-2003. In the time between sending her own disabled child to a segregated school in 1970, and hosting disabled children in her typical kindergarten class more than 30 years later, Barbara witnessed a profound change in the educational opportunities available to disabled children. Although Barbara’s special education classes were officially self-contained, she always advocated for what was then called “mainstreaming” and slowly changed her position to that of a support and resource for students who were increasingly placed in regular classrooms, for at least part of the day. In fact, her switch from special education teacher to kindergarten teacher took place when she was told her contained classroom was being closed, and she was to transfer to another school. Rather than accept this move, she opted to become a kindergarten teacher in a school of her choice that practiced total inclusion and allowed her to advocate for disabled students from the other side of the fence.

Segregated or not, in 1970, Barbara was lucky to have a place willing to educate Hope for free. Publicly funded education of disabled children was not mandated until 1974. Hope was referred to Meeting Street School at age 3 where she received early intervention and schooling. Her motor planning difficulties were perceived to be the result of visual impairment. At first she was placed in the so-called deaf-blind unit. During these years, she was evaluated by Children’s Hospitals in Philadelphia and Boston. She was diagnosed as having mild to moderate mental retardation with autistic tendencies. According to Grinker (2007), it was common in the 1960s for parents to be told that their children had mental retardation, rather than autism. At the time so little was known about autism that mental retardation was seen as a less stigmatizing label. Children with mental retardation could be “trainable” or even “educable.” For autistic children prior to the 1980s there was no such expectation. Hope never developed the ability to speak because of her motor planning problems.  She never could articulate more than a few sounds. Meeting Street School was the best place available at the time.  Barbara says the programs that they offered, particularly for parents, prepared her and other parents to be advocates for their children.

Sibling days at Meeting Street School were a great deal of fun. For part of the day we got to meet other siblings to share stories and peer support. We participated in disability awareness exercises. They were the classics that disability rights activists groan about today: walking with a blindfold and picking things with socks on our hands. For part of the day we followed Hope to some of her classes and therapies. We played with the big balls and climbed a little stairway in the therapy room. One year Hope’s class performed Romeo and Juliet for us. Hope was Juliet’s nurse. One of the days was always devoted to some fun community-based activity outside the school – usually an amusement park. I remember leaving with a positive impression of Hope’s school. Her teachers and therapists seemed young, super nice and appeared to genuinely care about her. To this day people sometimes walk up to us and re-introduce themselves as a former teacher or therapist. There even seemed to be a sort of early version of disability pride and self advocacy. Certainly it was a place where you could be comfortable having physical differences, though maybe I’m over romanticizing. One down side was the bus ride.

Another was that Hope never had a formal reading program.  An attempt was made to teach her sign language, but because of her motor planning issues, this was unsuccessful.  Various communication boards were tried and were helpful. We also tried a few augmentative devices, which she eventually stopped using, either because they were complicated to use or were easily broken. Despite the lack of focus on literacy, I remember that Hope was always fascinated with alphabet books, credits at the end of movies and our Speak-n-Spell electronic game. I remember that computer voice saying “That is correct” and wondering what word she got right. At the time I did not believe her capable of literacy and wondered how she could get a word right without it being written out for her to see and copy. I know better now, but at the time I joined the rest of my family in believing her official diagnosis of mental retardation, and did not think her capable of literacy. In any case, Hope’s school recognized her as being pretty smart, even if her family did not. I remember their frustration when their communication strategies did not translate outside of school contexts. For whatever reason, they did not succeed in helping her find a communication style that would allow her to share complex thoughts. I think they blamed us for not consistently applying their communication strategies, which we (or at least us kids) never understood very well. I think Barbara was as frustrated as the school therapists, but the rest of us merely used Hope’s lack of complex communication to confirm our own preconceptions about her capacity to think and communicate. In 1988, when she turned 21 she “graduated” to a sheltered workshop less than 15 minutes from our mother’s house. At least the long bus rides were over.

Away at college, in the midst of my own life transitions, I was out of the loop, but Hope and Barbara were not at all happy with the sheltered workshop. Hope did not complain, but the tasks she was given were boring and repetitive. She put items like soap or screws into little boxes or bags. She had an allergic reaction to the soap. She brought home paychecks that were a fraction of minimum wage. In the sheltered workshop, the workers, (the so-called “clients”) that could talk well and read were at the top of the hierarchy. Those with no literacy and no ability to speak were at the bottom. So Hope was considered among the lowest functioning workers by both the staff and the other workers. Hope states, “[it] was awful. I hated the place. I was always treated like a stupid person and poorly.” As Barbara tried with increasing frustration to get the staff to see things differently and offer more varied options, the staff responded by moving Hope to the so-called “back room” where people who did not fit the mould were gathered (in other words, the people classified as behavior problems or incapable of self care and/or meaningful communication and occupation). Barbara was told this would allow Hope to receive more “individualized” treatment. Barbara hit the roof.

At around this time an early pilot Medicaid waiver program was offered, called Community Supported Living Arrangements (CSLA). Barbara and Hope worked with an advocacy organization called PAL (Parents for Alternate Living) to apply for this funding. Some people applied for homes, Hope applied for the chance to engage in meaningful occupations. She wanted to work and play in the community and leave the institutional setting of the sheltered workshop. Aaround 1992, she got the funding, switched to an innovative community-based service provider, and eventually was able to leave the sheltered workshop. For the first time since she was three years old, Hope no longer spent her days in an institutional setting. One of the consultants or administrators for the CSLA suggested that Hope try facilitated communication, a controversial form of supported typing that slowly allowed Hope to gain the ability to share complex thoughts. I do not have time to go into detail about this controversy here, but provide a thorough discussion in our 2008 paper (Block, Block & Kilcup 2008, Biklen 2005, Kliewer et al. 2006, Rubin et al. 2001).

So, how do I render meaningful this collection of experiences from the perspectives of anthropology, disability studies and occupational science? From an anthropological perspective Lakshmi Fjord has suggested that I explore the relevance of kinship. Hope’s family played a double role of advocating for her, helping her get unstuck and rendering visible the previously unspoken and thereby invisible injustices. We had the ability to communicate and protest bus rides and back rooms, and this proved essential at key moments. Yet simultaneously, some members of Hope’s family were more conservative with regard to perceptions of intelligence, capacity to communicate, and function. We “knew” Hope. We “knew” the limits of what she was capable of, and this influenced the way she behaved with us, and the opportunities we afforded her. Her immediate family eventually came around to an understanding and belief in Hope’s capacity for complex communication. The perceptions of extended family members remain more dubious. Though Hope’s recent willingness to type at family gatherings has helped.

From a disability studies perspective, I could provide a Foucaultian analysis of how the structures of institutional power have shaped my sister’s life (Erevelles 2005, Foucault 1979, 1980, Hughes 2005, Tremaine 2005). She was classified and shunted to what was considered the appropriate institutional placements. Though not residential, she was forced to travel far from home to receive even a rudimentary education that did not prepare her for adult life in her community. Yet this formulation is incomplete, because clearly, as stated above, there existed a space for protest, advocacy and self-assertion. There were alternatives to institutional settings. Even within the institution, teachers and therapists advocated on Hope’s behalf, trying to make us see potentials for Hope that we may not otherwise have recognized. They advocated within their institution and with us for the use of technologies and techniques that stretched our perceptions and imaginings of who Hope was and who she could become.

Hope also found ways to communicate despite the lack of a speech or, seemingly, literacy. In public, she was mostly quiet, and at most used a personal sign language. With her family, she hummed. Her hums could be happy, excited, disappointed, angry, or bitterly frustrated. Different hums for different contexts. When very happy, though with increasing rarity as she got older, she would hum entire songs. Currently, she will only do this on peoples’ birthdays and only the song “Happy Birthday.” Hope also communicated through physical humor and through physical manifestations of passive-aggressive revenge on the people who annoyed her (for example, repeatedly using the toothbrush of a germ-phobic roommate). In recent years Hope communicates through less obscure means. She is at her very best when communicating in public spaces. She speaks to college students, and at professional or activist conferences and family gatherings.

From an occupational science perspective, it is natural to consider the presence and absence of meaningful occupations at different points in her life. For fifteen years of her childhood and adolescence, she probably spent more time riding the bus than any other single occupation --  at least 15-20 hours per week. As Hope says, “a lot of wasted time.” During that time, professionals and family had no need to spend time or energy on her. She was thoroughly shelved – warehoused – processed – systematized. To borrow from some dark interpretations of the anthropological concept of liminality, she spent this time in a prolonged liminal state, “betwixt and between” family and school, engaged in a meaningless, and in times of traffic congestion painfully frustrating, occupation (Deegan 1974, Murphy 1990, Murphy et al 1984, Scheer 1984, Turner 1967). A liminal state is supposed to be temporary and short lived, as is a school-bus ride -- a symbolic transition from one state to another, from family to school life. Yet for Hope, the liminal state, because of its extraordinary duration, took on an “unlife” almost more real than the rest of her life. Occupational apartheid seems a natural label for the segregated schooling (Kronenberg et al. 2005, Pollard et al. 2009). Occupational injustice seems a natural fit to describe the trajectories of dead-end occupations that Hope experienced in her years of being differently educated that lead to her ultimate placement in the “back room” of the sheltered workshop (Wilcock 2006). Yet there are other conceptualizations of liminality that also apply, for example, as a space where protest against social structures and social change was and is possible (Turner 1974, 1986; Willett & Degan 2001).

I have only seen the concepts of occupational apartheid and occupational justice applied in community-based settings. In addition to being a framework to consider new forms of practicing occupational therapy/occupational science they become a means by which occupational therapists can free themselves from the limits of working within traditional institutional settings. I know occupational therapists have played dual roles in upholding institutional structures and championing and supporting deinstitutionalization. Yet one of my colleagues once spoke bluntly to me and my students of occupational therapy’s inability to provide the support needed, in at least one specific regional and temporal context, to ensure the successful re-entry of former psychiatric inmates in the community. “We failed them” she told us, and in those words you could hear an anguish of decades-old guilt and frustration. Though the context was different, I wonder how Hope’s former occupational therapists felt seeing her and other students channeled from school into sheltered workshops – those concentrations of meaningless occupation.

My occupational therapy students go out on their fieldwork assignments and then return to me for a final course in which we place their experiences within a disability studies perspective. I help them to question the process by which institutions may have programmed them to accept routine injustices and policies that frankly violate human rights. They are encouraged not to question authority or a system that frames their therapies within the employer’s and the insurance company’s approved number of sessions and minutes per session. These are newly-minted occupational therapists, trying to understand the conflict between these structural limits and the central trope of the profession that occupational therapy is client-centered. I think, I hope, that through creative subversion, some of them learn ways to bring these conflicting forces into balance. Or perhaps they burn out and leave institutional settings for the more liberated, though less lucrative, community based opportunities. Actually, I’m not sure how liberating these mostly fee-for-service opportunities really are. At least back in the institutions, therapists had decent benefits. However, at least in this framework they have the ability to refuse an assignment.

Where do occupational therapists and occupational scientists belong in such narratives as Hope’s? At the time, I simply was not paying attention, but as far as I can tell none had a starring role either as savior or villain. What role could they have played? What role can they play for the thousands of people subjected to lives in institutional settings? Well, whatever they’ve been doing, even if not quite as strident as what disability rights activists would hope, it is at least more, on a practical level, than anthropologists have been able to offer. I have great hopes for the negotiation between the three fields as we move forward. Anthropology and disability studies providing the critical perspectives and activist threads, while, as Gelya Frank reminds us, occupational therapy/occupational science pulls us beyond thinking into doing (Block, Frank and Zemke 2008, Frank 2005).

 

References

 

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Block, P., Block, H. and Kilcup B. (2008). Autism, communication, family and community. Unpublished manuscript presented at the American Anthropological Society, November 21, 2008. San Francisco, California.

Block, P., Frank, G. and Zemke, R. (2008). Introduction to the Special Issue: Anthropology, Occupational Therapy and Disability Studies: Collaborations and Prospects. Practicing Anthropology, 30(3):2-5.

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