Facts and Phenomenology on Disability Module 6
The first type of experience involves the particularities of living with atypical embodiment or functioning. Questions about this kind of experience are often framed as what-is-it like questions: “What is it like to” have moderate or profound deafness? use a wheelchair to move? be legally or totally blind? be unable to hold or manipulate objects with one's hands? have atypical speech? have a learning disability or a mood disorder? Such questions are sometimes requests for factual information about how one manages tasks with one's disability—“how do you do x if you are in a wheelchair?” In other cases, they are requests for self-reports about the phenomenological experience of being in a particular state—“what does it feel like to get around in a wheelchair?”
People accustomed to their impairments may have little to report about “what it feels like” to have them, in part because absence of a function or a sense may not be something they experience as such, and because their atypical ways of functioning or sensing may not, in themselves, be affect-laden—it is what they do un-consciously, until it is called to their attention. The experience of atypical functioning or sensing may be far more salient for someone getting to know a person with a disability than it is to the person herself. It may also be highly salient to a person who is recently impaired, trying to function without limbs or senses that she used to have. But the experience of loss and frustration becomes less salient with time, peer and professional support, as she gets more immersed in going about day-to-day life.
Even when people with disabilities do report about what “it is like” to have their impairments, those reports may vary considerably. The most obvious reason is that there is tremendous variation in the sensory, physical and functional states of which “impaired” or “disabled” people are capable. A person who can see but not hear has very different sensory experiences from a person who can hear but not see, who in turn has very different experiences from a person who can see and hear but cannot move his legs. This point should be obvious, but it is worth stressing, because it underscores the fact that the labels “disabled” and “impaired” do not track a distinct phenomenological experience.
Moreover, even two people with the same impairment label might give different reports of how they do things or how they feel as they go about life with their impairment This could be due partly to differences in the character or extent of their impairment—not all people labeled “deaf” are deaf to the same extent. Further, their experience of life with impairment may vary with the kinds of activity they engage in, and how they regard their impairments as affecting their opportunities for self-fulfillment. Opportunities in turn may be influenced by all the factors, unrelated to impairment, that affect everyone: the family and neighborhood in which one grows up or now lives; one's disposition or personality; the financial resources at one's disposal; or one's education, religion, sex, or race. Moreover, people's experience of living with an atypical function sometimes may be difficult to distinguish from their experience of stigma and discrimination.
Despite these differences, the experiences of living with diverse impairments have one thing in common—they are likely to be ignored, or given insufficient weight, in the design of the physical and social environment. Unlike new acquaintances, planners and policy makers may pay little attention to “what it is like” to get around with atypical functions. In constructing buildings, transit systems, and work schedules, they often fail to listen carefully to what people with various impairments say about their experiences of daily living. Those experiences cannot be adequately simulated by spending a day in a wheelchair or walking around with a blindfold—indeed, the confusion and disorientation that non-disabled people experience in simulating impairments is a very misleading guide to the way people with disabilities experience and negotiate the activities of daily living. Moreover, in learning about the experiences of living with atypical functions, planners and policy makers cannot take any single impairment as representative. The experiences of people with different impairments differ as much from each other as they do from the experiences of nondisabled people. As the human variation model emphasizes, the very diversity of impairments poses an important challenge for an inclusive society.
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