Monday, January 10, 2022

What is the policy toward cleft palate people where you live? Who created it? Who administers it?

This morning, it occurs that this fundamental question hasn’t been answered in my city, my county, my state, my country. Are the clefted an interest group, a needs group, an identity, a resource, a “problem?”

A possible starting point. In my Pacific Northwest city, if you go to a dentist needing an upper plate, they direct you to the Faculty Prosthodontics center of the medical division of the state university. Parents having a newborn with a cleft are directed to Children’s Hospital in this city.
By contrast, the Disability Rights Washington website, according to a Google Site Search, does not mention “cleft,” “palate,” “hare,” “lip,” or any combination of these terms.
The United States has public programs structured for needs groups, such as the elderly; and members of an identity having perceived needs, such as minorities, women, and LGBTQ people. The first is general, public, and neutral, such as the statement beginning the Constitution: “We the People.” Social Security and Medicare do not suggest that elderly people are more worthy than the young; only that their reduced earning capacity and increased medical expenses need the general solution government can provide.
The second solution, in terms of identity, is less desirable from the standpoint of democracy.

The first problem for clefted people is that there is little or no unified social or governmental response to our civil rights needs, or our economic needs. By contrast, the civil rights needs of minorities are addressed, for example, by the Civil Rights Act of the sixties, by directed court attention, and by minority assistance programs. Do Faculty Prosthodontics, Children’s Hospital, and Disability Rights Washington coordinate? It is left up to the clefted person to figure out where to go.
Cleft people’s civil rights problems are suggested by the public attitude of the familiar “I don’t care if it h-words the Governor”(1) slur. I asked an attorney who specializes in “disability discrimination cases in higher education” if she knew of any cases where the courts had addressed the pervasive public discrimination against clefted people. Her emailed response evaded the issue. A 2013 post in this blog cited an ADA: “There's case law out there regarding people commenting and gesturing against race and religion. But ... there's nothing out there regarding disabilities.”

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Initial thoughts concerning what an initial program for the one in seven hundred who have a cleft might address:

1. Provide a clearinghouse where people having a cleft can contact each other
2. Provide someone clefted people can contact to evaluate incidents which may be discriminatory
3. Provide a resource for determining if effective action can be taken to counteract discrimination
4. Resources who can intercede for targeted disabled people. Could pro bono legal assistance be leveraged when civil rights may be being infringed?
5. Counteract the pressure clefted people are under to keep silent
6. Develop a cleft discourse (example: Should pervasive negative reaction to clefted people, where found, be described as “cleftphobic?”)
7. Promote public awareness that cleft people have exactly the same rights as minorities, women, and LGBTQ people
8. Determine what legal precedent exists where cleft civil rights may have been violated



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(1) In this slur, the American public doesn’t imply that the worst fate for the Governor would be to wake up as a person of color, but to wake disfigured by a cleft.
In the politics of identity, victim status is what counts. The public seems to regard disfigurement as a greater disadvantage than race.

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