I am Amelia's sister. Amelia is a woman with an intellectual disability (ID) and co-occurring mental illness. My story is one of a sibling of a person with ID, a story that focuses on my struggle to internalize and implement the “social model of disability” in my life with Amelia. The social model, which drives much of disability policy in this country, posits that disability is a social construct in which the limitations of disability come about because of society's views rather than by any of the inherent characteristics of any given person's disabilities. As a result, this model suggests that interventions should focus on social–societal change as opposed to encouraging a person with a disability to fit into society. Disability policy edicts premised on this model embrace the concepts of community inclusion, normalization, self-determination, and the dignity of learning from every day risk. Growing up with Amelia, these concepts were not unfamiliar in our Yankee-driven family context.
When Amelia was a little girl, my parents were fiercely protective of her right to live in the community and to learn by making her own way in the world, despite her challenges with severe self-injurious behaviors. Over time, Amelia's challenges have reduced in incidence but increased in severity, often extending into outward aggression. In light of this reality, I believe that our family took more of a paternalistic approach to Amelia's “care,” borne out of a fear for her safety, despite our dreams for her independence. All the while, Amelia has had the luck (and the parental advocacy) necessary to maintain a life in the community, although sometimes it felt as though we were skating on the edge of disaster. Currently, my family is in transition from parents who parent Amelia, to a sibling who is both a sister and has some parenting roles to play. A difficult dance and a difficult balance, this process has heightened my awareness of my views on the implementation and operationalization of the social model. I am writing this story because I do not see much of my experience reflected in the academic literature, and I feel this story is illustrative of the unspoken challenges faced by many families. This story documents my personal journey toward acceptance of the social model. I start in Maine, an appropriate setting, given its fiercely individualist Yankee culture, a culture most definitely centered on self-determination and independence.
Telling the story of how Amelia and I spent our childhood Augusts in the wilds of northern Maine inevitably yields to riotous laughter combined with furrowed brows and eyes wide with disbelief at my parents' idiosyncrasies. It all starts with my very Yankee grandfather, whose ancestors farmed and fished in Maine for two centuries. In the 1950s, spurred on by his somewhat paranoid fear of the “red threat” of Communism, grandpa purchased 400 acres of swampy woods on a remote northern lake. Planning to build a bomb shelter for the family, grandpa solicited my father in cutting a road through the forest, a prospect involving lots of tree felling, wood splitting, and gravel shoveling.
After completing all of these tasks without outside help, my grandpa started in on crafting a bona fide bomb shelter out of steel-reinforced cement blocks. The Red threat–induced paranoia had resulted in fortress-like construction with narrow slits for windows, as if for rugged cowboys to rest their guns, laying in wait for the inevitable “Red savages” of my grandfather's favorite cowboys and Indians movies. Perhaps he, like so many other Americans, fantasized about the independent lives of pioneering cowboys. Nonetheless, the shelter was seriously ugly, an eyesore on an otherwise serene and almost empty lake in the middle of the woods. The dragonflies, loons, and frogs seemed to protest its presence with quiet sounds each evening. As my mother used to say, “You couldn't blow the damn thing up.” As senility set in, grandpa lost interest in the project and eventually had to enter a nursing home, much to his, and our family's, chagrin. Stacks of leftover cement blocks and steel rods were left amid crates of Spam, canned Chase & Sanborn coffee, and stacks of Reader's Digest in the dank, dark, and mildewed space, remnants of his now-waning forceful independence and proud self-determination.
A few years before the nursing home entry, my parents were married and chose to spend an extended honeymoon building a log cabin just through the swampy forest from the bomb shelter. Although my father insisted on pouring a cement foundation himself, the 10′ × 16′ cabin had no plumbing, no electricity, and, without a doubt, no telephone. The cabin's accoutrements included hand-hewn plank shelves, rudimentary furniture, and a cast-off, rusty pot-bellied stove salvaged from the local dump. Our outhouse was a convenient hop–skip–jump through the forest. Maintaining this existence every August I can remember, my parents cooked all meals over an open fire set near the lake.
All of this was a highly unlikely prospect for two highly-educated engineers from vastly different socioeconomic backgrounds. My mother hailed from a Los Angeles–based, well-off European immigrant family who never forgot their struggle to “make it” from rags to riches. She did, however, struggle for self-determination in her efforts as a chronically ill, female researcher in the ablest, sexist world of academia in the 1960s and 1970s. Conversely, my father had grown up in New England with staunchly French Canadian and working-class roots, forever impacted by the individualism-necessitating ravages of the 1930s. Despite the differences in their upbringing, they found a surprising shared passion for this wilderness setting and the independence it demanded. Clearly marching to the tune of a very different drummer, my parents personified self-determination both at the lake and in embracing their dreams, despite significant social disapproval. In retrospect, I believe that my parents were likely reveling in their isolation from the ravages of a sexist and classist academic life along the lines of the hippy-inspired “tune in and drop out” mentality. My parents' peaceful and remote, albeit somewhat eccentric, spot became the site of our August existence.
Soon after my parents built their log cabin, they adopted my younger sister from South Asia. Within months, my mother recalls feeling sure that “something was wrong.” Over time, they came to know that Amelia's now-established diagnosis of moderate mental retardation was likely fetal alcohol syndrome. Amelia evidenced a strong and engaging sparkle, sense of humor, and zest for life but was also all-too prone to deep, dark moods that ended in dangerously self-abusive daily tantrums. Despite a house full of Amelia's blood stains, broken furniture, and shattered nerves, my parents were horrified by the realities of institutional life for people with IDs. Perhaps fortified by the independence that their Maine world required of them, they fought to keep Amelia at home and off of the “Thorazine shuffle” of drugs, despite the challenges of this prospect. Although support from our immediate community was not always consistent, it played a vital role in Amelia's ability to participate in community life. As I look back now, it was a difficult and chaotic time for all four of us, fraught with visits to and from social workers, doctors, neurologists, behavior therapists, and the like. Our August sojourns to Maine became a respite—my parents commented that “things were better” for Amelia up there away from society. Things eased up a bit for all of us, yet our extended family was not supportive, with one grandparent insisting on referring to Amelia as “the Asian” and another commenting that my parents were “raising (us) like savages,” the latter of which my parents took as a point of pride.
Ignoring those familial concerns, a calm of sorts descended on us as we decompressed from our suburban life. Schooled by my pseudosurvivalist parents, Amelia and I spent our days identifying trees and learning about which mosses, lichens, and berries were edible, able to be made into a tea, and so forth. We spent our mornings wandering in the woods and splashing in the water, with evenings fishing, and dinner emanating from whatever we caught. Aside from my mother's necessary insulin, we lived almost entirely off of the land, learning how to catch our own bait; make furniture; conjure a fire even in the rain; navigate the wild woods by compass, sound, or sun; and much more. Amelia and I were equal partners in this effort, with expectations of both of us to rise to the occasion each in our own way as we engaged in this antisuburban, antibourgeois instructional adventure each year. Looking back, I believe that this society-free experience allowed Amelia to gain a confidence in her abilities that could not have otherwise happened in what she refers to as her “real world.”
Over the years, Amelia bounced from school to school, was sexually assaulted, suffered the early loss of our mother to cancer, gained an amazing second mother and three stepsiblings, had money embezzled from her bank account by staff, aged out of the educational system, moved into a shared living situation on her own with staff support, had several somewhat exploitative friendships with nondisabled “friends” in the community, and found a supportive and loving boyfriend. Throughout this process, my parents worried for Amelia's safety but consistently fought for her right to work in a community-based, nonsheltered setting, which she did, very happily and successfully. All of this happened despite the home-based context of Amelia's day-to-day challenges with self-injurious behaviors and more psychiatric hospitalizations than I care to count. As Amelia's aggression has evolved into increasingly outwardly-identified behaviors, she had numerous contacts with local law enforcement. All of a sudden, Amelia as an adult did not seem to be as embraced by the community who accepted her differences and helped to rear her. We wondered, “Is there more acceptance for children with disabilities than adults?”
Fearing for Amelia's safety and well-being, our intuitive, Yankee-driven embrace of the notions of self-determination and independence were seriously challenged. Very concerned with Amelia's ability to manage her own well being in the context of the freedoms afforded her by the state system in which she lives and works, the original fierce independence around their choice to keep Amelia in the community to learn and grow from that experience turned into what some in the disability arena described as paternalistic and controlling. How could we secure a safe existence for the girl with the sparkle—if we could ever find her again—we wondered. We asked for supervision, oversight, and control. We did not get much of that. We wanted more and more safety as we saw less and less of our sparkling Amelia. We did not see her in the person who refused to go on walks, attacked staff in a local fast food franchise, or broke into a local church during a funeral, screaming obscenities all the while. Was this our Amelia, the person who we saw spending hours watching television who had an ever-increasing waist size and ever decreasing breathing capacity?
Yet, through all of this, the August trips to Maine still happened for Amelia. And what happened up there still felt like a miracle. Amelia created daily rituals for herself, uncharacteristically rising at dawn to launch the canoe into the lake for solo “quiet time.” Whereas hygiene and exercise were at best an afterthought in her non-Maine world, Amelia bathed on her own accord and swam at least twice per day. Spurred on by her love of the Special Olympics, Amelia prepared for a local “fun run” during a summer festival. Each day, she jogged (slowly, laboriously, continuously) around a 2-mile stretch of woodland path in preparation for the piece de la resistance, the crossing of the finish line.
The miracles did not end there. Amelia spent hours picking blueberries—the tiny wild variety that I find so frustrating to interact with that I can never pick enough for morning griddlecakes, much less a whole pie. Amelia could supply dozens of pies after patiently picking berries for what to me were interminable hours. Focusing in on Amelia's ability to concentrate in this manner, on a whim, my father showed Amelia how to clear brush and asked if she would like to help make a path along the lakeshore to Blueberry Point, one of the spots she spent hours picking the ripe berries and only accessible via canoe. Like a fish to water, Amelia quickly got the hang of brush clearing, doggedly cutting a path on her own terms, with limited support from Dad and my very supportive stepsister. Amelia worked for hours at a time, of her own volition. Most of all, her dark moods rarely surfaced. Amelia seemed to embody a clear sky and a calm soul. We celebrated this, “the Maine effect,” and had unending, happy conversations about Amelia's annual transformation. The self-inflicted bloody noses, hair pulling, and skin-picking tantrums that we feared on a moment-by-moment basis at home were but rare visitors at the lake, usually occurring toward the time when we were to return to the real world. The Maine effect magic seemed to vanish as soon as we got in the car for the 12-hour ride home. Slumped in her seat, her face reverting to a dull, flat, jaw-slackened stance, Amelia usually said something along the lines of “I wish I lived here all the time,” a heartbreaking impossibility given the realities of funding, interstate placement compacts, and proximity to family.
During the last few years of all this, I finished my doctoral work, which included some exposure to disability studies. In this coursework, I found myself wrestling all the while with my own paternalistic and protective attitudes that flew in the face of those who embraced the “hip” social model of disability. My professors and close colleagues constantly challenged and encouraged me to learn about the social model of disability. Although I was fascinated to learn about the social history of the disability rights' movement and the concepts that drove it, I felt resistant to the idea that these concepts could be implemented or operationalized in a way that was safe for someone like Amelia. I think my professors and colleagues were sometimes taken aback by these views of mine, but their questions to me set a foundation of questions in my own head, in subtle ways I did not realize at the time.
One afternoon, floating in the canoe in the middle of the lake, perhaps searching for inspiration in what Ann Morrow Lindbergh (1955) titled her book, A Gift From the Sea, I listened to Amelia cutting her way through the brush on the way to Blueberry Point. Full of several slices too many of her latest blueberry pie, I started to think about how Amelia's level of engagement with life and her exuberance about choosing what to do and when to do it were hardly visible back in the real world. I realized that in the freedom of Maine, where we were not surrounded by the strictures of American social life and expectations, Amelia seemed to feel free to make her own reality, to be her own person in making choices and contributions to the world. I sat up fast, almost capsizing my canoe, and realized: this is the manifestation of the social model of disability in its purest sense, just minus the society part. Here, Amelia makes society fit her instead of fitting in through attention to social norms and cultural rules. Look at the difference, I thought. Look at her joy and clearly evidenced sense of fulfillment and purpose. As if she were reading my mind, Amelia called out to me from her workspace on the shore, “Yoo-hoo, Liz! Yoo-hoo! I LOVE Maine, you know I do! I feel GOOD here. When are you coming to walk on my path?” Sadly, her words provided bittersweet clarity for me that I had yet to walk on her path, metaphorically or physically, but that this might be possible after all. As I paddled toward the shore to embark on Amelia's path for the first time, I wondered whether Amelia and I could clear a path from Blueberry Point right on into real life.
Even though this question remains largely unanswerable back here in the real world, I now find that it guides me in my efforts to support Amelia in her community-based work and home life. Now, in my in-between role of not-sibling and not-parent, I am trying to find ways to build our communication around implementing a better and safer way of life for Amelia as we grow older. I struggle with my role in Amelia's life on a daily basis. What is right? What should I do and not do? What should I encourage her to do, maybe lose some of that extra 100 pounds? Should I encourage her to do anything at all? Although I still struggle with feeling protective of Amelia and, I suppose, therefore, with being paternalistic, my canoe-based “a-ha moment” is ever-present in my mind, centering me now in my role as Amelia's sibling supporter. In these moments, in my mind, I often find myself in the center of the Maine lake, thinking about Amelia's path. Amelia and I have developed our own way of talking about how to live the Maine effect in her real-world life, although this is not always an easy prospect. Recently, I have noticed that there is a quiet, ongoing metamorphosis in Amelia in her real world. For example, Amelia has convinced her new housemates and staff to take nature walks as well as to consider the prospect of canoeing in a local river. Amelia was also the first to comment that our aging father, now living with Lou Gherig's disease, also benefits from the Maine effect, in that he is much more able to function happily in his isolated lakeside setting than at home in the suburbs.
Recently, in her annual progress meeting— while celebrating a year mostly without hospitalizations or interactions with police—the conversation drifted toward my ongoing concerns with major hygiene challenges, during which I made a reference to “people with mental retardation.” Mental retardation is the term now known as intellectual disability. Surrounded by her beloved circle of support, including a therapist, case manager, house manager, and workplace supervisor, Amelia stood up and said, “Hold on a second, Liz, stop the press!” A bit taken aback at first, I said, “Okay, what's up, Am?” to which she replied, “I am not that word. I am not that word you said. I am a human being with special needs, so you can call me ‘special needs’ and that is my word and my choice. And can we please stop talking about hygiene and talk more about that camping trip that I want to go on with staff, you know, like what we do in Maine?” I felt myself rejoin Amelia's lakeside path again after stumbling into the brush. As the meeting went on, driven by Amelia's choices, I sat back and thought, “Okay, so, I guess it's working! Maybe living the social model is possible for someone with Amelia's challenges, and I am feeling okay about that!”