Recently I brainstormed thoughts on initiating a public program to assist cleft palate people after the K-12 year existing programs, which basically help parents of babies born with a cleft get the needed corrective surgery. (I may post the initial rough draft of those ideas soon.)
Those existing programs are vital, but there doesn’t seem to be anything to help us after we reach adulthood, and find ourselves dealing with a mainstream society which doesn’t treat us very well at all, while generally pretending we don’t exist. There’s not much thinking about cleft palate around to go on. Earlier posts on this blog have referenced Sociologist Erving Goffman’s applicable reflections on stigma, the “spoiled identity,” which results in “reduced life chances.” (1)
Example, from Wikipedia: “Goffman's book Stigma: Notes on the Management of Spoiled Identity (1963) examines how, to protect their identities when they depart from approved standards of behavior or appearance, people manage impressions of themselves, mainly through concealment. Stigma pertains to the shame a person may feel when he or she fails to meet other people's standards, and to the fear of being discredited—which causes the person not to reveal his or her shortcomings. Thus a person with a criminal record may simply withhold that information for fear of judgment by whomever that person happens to encounter.” (There’s a big difference between people having a cleft palate which doesn’t affect the lip, nose and face, who can “pass” and live more or less normal lives, and those who have a visible birth defect and encounter social obstruction at every turn.)
Reasons a program needs to be initiated:
1. There don’t seem to be any programs now
2. Identifying and establishing means of contacting members of the local population of cleft palate people (so those who want to can form a community, for example)
3. Setting up and publishing gatherings for CP people, so they can socialize, share information, advocate for their cause, compare strategies for dealing with disability discrimination, contact their legislator, etc.
4. Contacting candidate foundations for financial support for the various aspects of this trial program, including: 1) A counseling program; 2) Legal assistance (example: At a party a community college instructor who was a person of color got on my case, called me “funny looking” and generally degraded me and caused the other partiers to back away from me. An attorney on retainer could advise if a civil right had been violated, if the instructor had violated educational institution policy, etc.) 3) A possible ombudsman program that could assist CP people being bullied in the public schools; 4) Publications, such as How to deal with fear, anxiety, bewilderment, depression caused by pervasive social abuse; 5) Identifying or initiating relevant sociological studies (for example, Is there statistical data concerning discrimination cost - Has a relative income level comparison for CP/mainstream people in comparable populations been done? If not, finance the institution of one.)
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(1) Previous post Reduced Life Chances: “Goffman [says] (1). “The term stigma, then, will be used to refer to ... a special kind of relationship between attribute and stereotype” (2). Observing that “the person with stigma is not quite human” (3), Goffman explains that the our unconscious assumptions lead us to “exercise varieties of discrimination, through which we effectively, if often unthinkingly, reduce his life chances.”
Goffman also echoes Rosemarie Garland-Thompson, noting that stigma reduces a person in the mind from being a “whole and usual person to a tainted, discounted one” ... stigmatized people are vulnerable to invasions of privacy, with perfect strangers feeling comfortable starting personal conversations.”
