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IDENTITY AFTER SPINAL CORD INJURY
The development of a peer group identity is particularly important for adolescents and young adults. As teenagers struggle to differentiate themselves from parents and adult authorities, to gain self-sufficiency, and to “find” themselves, identifying with and fitting in with a peer group is of paramount concern. Defining oneself as “different” (from adults) paradoxically requires a definition as “same” (as peers). Teenagers of every generation develop styles of clothing, music, and language that distinguish them from adults – and then demand from other teens a strict adherence to these new group norms!
While teenagers may struggle at times with the pressure of having to fit in, they nevertheless gain a great deal of support and self-esteem from identifying with their peer group. Teenagers with spinal cord injury often can develop a positive self-image by interacting with other disabled teenagers. A young adult with spinal cord injury can mentor a teenager to help him or her cope with changes in appearance, self-image, and identity. Some hospitals have special support or therapy groups for younger adults and teenagers with spinal cord injuries, or they may be able to arrange peer counseling for a teenager who is getting ready to leave the hospital. After going home, teens can get acquainted with peers who also have spinal cord injuries – for example, by becoming involved in wheelchair athletics or camping trips for teenagers with disabilities.
Part of the shift in group identity after spinal cord injury, for teens and adults alike, occurs through the adoption of new language and new labels. You and your fellow patients, perhaps without thinking about it, may have begun referring to yourselves as “paras” or “quads.” Some people with spinal cord injury refer to themselves as “crips” or “gimps,” turning these previously stigmatizing labels into expressions of unique identity and pride, in much the same way that some gay people use the word “queer” or teens use “grungy” and “raunchy” as positive descriptors. You may also find yourself adopting a new slang vocabulary for the equipment that is so much a part of your life – vents, chairs, caths, TEDs, and a host of other medical abbreviations and acronyms that describe your injury and its functional consequences. Finally, you may discover from your new “in group” a language that describes non-disabled people in “out-group” terms, such as “walkies” or “a.b.’s” (able-bodied). These shifts in language are all part of the process of differentiating oneself and integrating the new variables of disability and (for some people) minority status into one’s personal identity.
Along with these changes in self-labeling or self-identification may come changes in your perception of specific aspects or consequences of your disability. In the initial period after spinal cord injury, especially if the injury was traumatic and the disability sudden, changes in bodily appearance, function, and mobility are typically seen as symptoms of illness, needing to be cured or fixed. Like a broken arm or a stomach virus, the initial effects of spinal cord injury are often viewed as alien, not part of oneself, temporary and erasable. Indeed, in many cases, some recovery of function does occur over time and some symptoms disappear totally. But for most people with spinal cord injury, some degree of disability is permanent, and many patients leave the rehabilitation hospital with significant impairments.
As you become increasingly aware that some impairments or limitations may not be fixable, you may find it harder to maintain a separation between your “real” or “normal” self and your disability. The psychological challenge at this point is to make the transition from seeing the disability as alien, not the “real me,” something to be overcome, to seeing the disability as “part of me,” an aspect or characteristic of the self, something that does not have to be eradicated.
Alicia, a young woman with quadriplegia since the age of fifteen, described the reaction when she and her boyfriend announced their engagement. Her future mother-in-law said, “We like you but we don’t like your circumstances.” Alicia replied, “I am the circumstances.” As shown by her simple but eloquent reply, she had incorporated spinal cord injury into her personal identity. In effect she was saying, “If you like me, then like my disability – because it’s part of me and I’m part of it.” This process appears to be one of incorporating or integrating the disability as a characteristic of oneself, while simultaneously relinquishing the perception of the disability as a symptom or illness. Put another way, it is the transition from being a patient (sick, damaged, broken and dependent) to being a person (with the variety of attributes, strengths, and weaknesses that all humans have).
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