Butler County Board of Mental Retardation and Developmental Disabilities (Fairfield, OH) Beyond the Usual Definitions of Intellect: The Social Construction of Successful Marriage in Lives of People With Mild Mental Retardation [Video], by Nancy Fliessler. (Available from Filmakers Library, Inc., 124 East 40th Street, NY, NY 10016)
Fliessler's new documentary “Lifestyles of the Poor and Unknown” is an insightful view of the social construction of “successful marriage” and of the relevance of such marital relationship to the lives of people with mild mental retardation. Its main characters, Marni and Kris, not only explore and reflect on how they operate together as a loving couple but also explain how they make their marital and disability relationships both compatible and “real.” They give us a deeper sense of this exploration by introducing vignettes from their daily lives displaying their domestic routines, their feeding and caring work, as well as their sheltered employment. They also immerse us in their culturally inclusive communities, where everyone belongs and everyone is welcomed unconditionally. Shared activities such as cooking, eating, or even walking for a good cause are only some indicators of these positive inclusive interactions at their home, in work settings, and neighborhoods. Viewers learn that it is not only important for individuals with disabilities to have a safe home, and meaningful friends, but that it is also important to have opportunities for rejuvenation; the times that will allow them to refresh and collect themselves and to revitalize their honeymoon intimacy. Segments from the documentary about the couple's planning process and then actually showing a blissful holiday vacation on a glorious subtropical island speak to that importance.
Thus, in the bigger picture of this gripping documentary, Fliessler addresses the notion of functionality as she shows all the competencies needed for independent adult living for individuals with mental retardation: daily living, occupational activities, and personal–social skills, including leisure and recreational. As such, this documentary could serve as a functional curriculum for the premarriage counseling process for individuals with mental retardation. In many situations the premarriage counseling of people with mild mental retardation might be conducted under the auspices of people in the helping professions with little or no contact with this special needs population and, consequently, whose knowledge of pertinent issues relating to this group is lacking or nonexistent. In this documentary the filmmaker addresses the problem of “how to” fashion premarriage counseling by providing first-hand knowledge and skills as modeled by the married couple with mental retardation.
There are many other compelling contributions and lessons that can be learned here. First, the documentary adds to the small body of literature on siblings of individuals with mental retardation. Moorman (2002) wrote about loving and living with a sister with mental illness and protecting her from the outside world. Weaving a lifetime of memories and reflections with relevant research, Neugeboren (1997) gave an account of the survival techniques for coping with his brother's “mental madness.” McHugh (1999), in her remarkably poignant and wise memoir, offered helpful advice and company to her brother who had mental disabilities. Fliessler, as the director of this documentary, consciously chose not to be an active participant, but her persona as a concerned “sibling keeper” is woven into the narrative of the whole documentary. She is the one who initiated the idea of making this documentary to increase her sister's self-advocacy opportunities. She is also the one who encourages her sister to search for a more meaningful and satisfying employment because she strongly believes that work is a very important part of her sibling's life. Within her tale of sisterly love, however, Fliessler did not shy away from the discussion of some of the troublesome aspects of their sibling relationship, such as painful feelings of resentment and anger toward her sister's lack of enthusiasm for Fliessler's successful graduation from college or her sister's accusatory feelings of her being smarter. These honest and ambivalent feelings only enrich our understanding of the standards of real acceptance and love between siblings when a disability is involved.
Furthermore, the documentary provides an insight and critique of stigmatization of individuals with disabilities. In this century, people with intellectual disabilities were victims of euthanasia, a practice that was offered to protect individuals with intellectual disabilities from a cruel world into which they did not fit, and in which they could not survive with dignity, if they could survive at all (Taylor & Searl, 1987). The institutionalization of those “deemed defective,” provided models for moral truths and social ethics in the past (Taylor & Searl, 1987). Although laws such as The Americans With Disabilities Act, Public Law 94-142, Individuals With Disabilities Education Act, SSI, Medicare, and Medicaid have been passed for fuller acknowledgment of individuals with developmental disabilities, the stigmatizing assumptions about these individuals have not changed much. As Marni acutely observed, with a mind-set to look for defect, we generally continue to treat individuals with developmental disabilities negatively. We have a tendency to be pessimistic, resentful, and most of all, accusing. In her own words:
The problem with being handicapped today is that people automatically think that there is something wrong with you. It is as if they have already have labeled you as different because you have the handicap . . . or as if that's all my fault and my life was a big mistake. . . . I absolutely despise being called mentally retarded and I hate being treated like I'm special or something.
People like Marni and her husband Kris, however, come to define themselves differently than the general public commonly believes. They picture themselves in a more positive and humanistic way. They are content, passionate, and joyful; in short, they are human beings for whom love like many other things is same as for others. Here are two extracts from the documentary in which they both declare their love to each other. Marni said, “You are my world Kris. Everything I do evolves around you pretty much. You are mine everything. I love you,” and her husband, when asked what he loved about his wife, responded with words equal to Marni's passion, “She is such a caring individual. She makes the best meat loaf in town. And she is easy to talk to. And she is very funny. Marni Ellen Jamieson I love you.”
Yes, disability enters into the process of their definitions of themselves but not in the deterministic way that is commonly held. Just because “we are slow,” as Marni many times referred to the limitations of her own disability, does not mean that they have lost something, artistically, spiritually or socially. Bodgan and Kugelmass (1984) explained that when individuals such as Marni and Kris say that they have a disability, they do not do so to deny it, but they give it a less differential meaning. “I can't read too good. . . . I can't ever drive or buy a car” Kris honestly admits. The awareness of their own limitations helps them set up their own realistic goals and make efforts to achieve them, if given the chance and having the right role models. Here is how Kris clarified his pragmatic approach to his disability and his future aspirations: “Steve Wonder is handicapped. Christopher Reeves has a disability. . . . I won't give up either. That's part of life. You can't be judging everyone for the way they are. So I take one day at a time.”
The absolute jewel of this documentary is the notion that not only the able-bodied but also those with disabilities can laugh; and what is more important, they can also be the initiators of humor that provides a critique and represents the insider's resistance towards the dominant culture's ideas about disability. Individuals with disabilities have been described as manifesting limitations in symbolization, abstraction, and conceptualization (Norris, 1971). This lack of quantitative abilities was reported to interfere severely with the appreciation and comprehension of humor (Zigler, Levine, & Gould, 1966). Those who were perceived as capable of comprehending humor were very often denied an ability to create humor (Ickering & Pickering, 1987). In this new documentary, humor has been used by persons with disabilities to speak about their views of disability and of the world they live in. That is, people with disabilities are not poor, tragic, unknown, and hopeless cases, constantly bemoaning their fate, but on the contrary, they are incredibly inspiring individuals who are capable of using humor to overcome stereotyping attitudes and the limitations related to disability. To cite one example, Marni teases and imitates her sister's film-directing skills when she takes on the task of creating the “tapeholick club” which will involve taking her video camera everywhere she goes, including picking up her social security check. The probable dialogue between her as “a client of the helping system” and the helping professional might sound like this one, “Can you help this poor, helpless soul? [Laughter.] Yes, we can. It will take only few hours [laughter].”
The documentary has one regrettable weakness, though; a direct discussion of disability and gender issues is missing. Personally, I find the notion of the social construction of disability and gender stigma intriguing. Lloyd (1992) argued that the female/disabilities “plus” factor” shapes the disadvantageous reality of women with disabilities. For example, in terms of education, they are expected to play domestic roles at the expense of academic qualification; in terms of employment opportunities, women with disabilities are much more often unskilled workers in comparison to men with disabilities; at home in wife–husband relations, women are expected to depend on men. Further, according to Lloyd, women are trapped in a paradoxical constellation of “being nowhere”—ignored by the disability movement, “invisible women,” and ignored by the feminist movement, “invisible disability.” It would be interesting to hear from the main characters of this documentary about their own perspectives on the issues raised by Lloyd.
In conclusion, this documentary demonstrates the power of the sociology of disability to teach audiences about lifestyles they thought they already understood. It overcomes the stereotypes that have hampered analysis of a married lifestyle—work and home, leisure and love, limitation and choice. The film director's method provides a model for qualitative work, linking individual experience to social structure and giving full weight to individual agency without losing the sight of marital constraints related to the presence of disability. For all its strengths, I recommend purchasing a copy of the movie for your own use.