What I found most striking about the disability readings was the emphasis on visibility in determining how well a specific disease was received. In Susan Cahn’s case, her CFS was often met with skepticism because it did not manifest observably. Even doctors didn’t want to put stock in her self-reported symptoms because they could not be verified by sight. This kept her from being ridiculed for her disease but it also prevented her from fulfilling a claim of disability in the eyes of the public. Ostracized from both the world of disability and the world of the able-bodied, Cahn was forced to carve her own niche and navigate the terms of a disabled identity while also battling a serious illness. By refusing to acknowledge her struggle, the medical community and Cahn’s peers put even more stress on an already disabled woman. They refused her full participation in society and a meaningful embodied experience.

Andrea Avery’s claims of sickness were rarely quetioned as harshly as Cahn’s. Her rheumatoid arthritis was able to manifest itself in extremely visible ways (except during adolescence when it was confined to her wrist) that made her disability known to the casual observer without any need for disclosure. Rather than be disabled and ignored like Cahn, she was constantly harassed for her difference. Inclusion in able bodied society and interaction with able-bodied individuals was limited for Avery by those who turned her disability into something abject – a measure against which their own embodiment and health could be reaffirmed.

If these are the options available to those with disabilities, no wonder the rest of us non-disabled folks are so terrified of being infected! To be disabled in our society is to either be ignored or stigmatized. The minute somebody comes out with a formal announcement of their illness it becomes an identity. I don’t say “their identity”, simply because it isn’t. The otherized view of disability comes from outside the disabled person. The identity created for them by the able-bodied is a cruel amalgamation of medical scrutiny and social misconceptions that aim to eventually reduce the disabled to symbols and sub-human beings. This restricts the full potential of disabled people and in many cases keeps them from occupying the same arenas (although they may be fully capable)  that the able-bodied are assumed to dominate.

The stigma of disability also keeps those in need from seeking treatment. On a personal note: My mother has had rapidly progressing arthritis for years and has refused to go to the doctor until recently, hoping that if she ignored it for long enough it might go away. Now that she has joined the ranks of the disabled, her visibility has become very important to me. I want her to be able to speak openly at work and with friends to let them know what capabilities she possesses and those she doesn’t. I worry that ignoring the disability and continuing to perform tasks (like heavy lifting) that cause her pain will quicken the deterioration of her health. Until society is able to recognize the disabled as those with differences instead of those who are fundamentally different, some will continue to be excluded from full participation and others will be kept silent. This is what needs to change

Advertisements