Chromosome Disorder Outreach

Thanks to Velvet Martin for posting a link to the following video from CDO; her daughter Samantha features.  What do people think of the message here?  Community building around chromosomal disorder?  A humanization of the dehumanized who “look kinda funny”?  A tacit complicity with the medicalization of human variation (via the notion of “disorder”)?  All of the above?  Something else?

Can you imagine a version of this video labeled not in terms of chromosomal variation (duplications, deletions, rings), but in terms of the facial and body features that result–long face, bigger nose, displaced cheekbones?  Or psychological characteristics, or other functional variations (can do this, can’t do this)?  What difference would that make to the questions above, if any?

One thought on “Chromosome Disorder Outreach

  1. I agree with your suggestion that perhaps this video is “a tacit complicity with the medicalization of human variation (via the notion of “disorder.”) Saying that there is hope, help, and the need to not go unnoticed seems to me, more of a fight against chromosome disorders themselves than it is a fight against dehumanization and discrimination. (Surely identifying individuals by their particular disorders is less than effective in eliminating stigmatization and creating inclusive communities.) For this reason, a version of this video labeled in terms of variations that most people do not tend to see as disorders that need to be faught against (like having a big nose or being a certain race) would probably have a very different and even opposing effect. I assume that many people would not recieve well the idea of a big nose or a particular race being so stigmatized and interpreted to be so definitive of a person that their first name ought to be sympathetically placed next to the number of centimeters of their nose or the shade of darkness of their skin, and that it should influence the community of people to which they belong. I think that when it comes to disability, this sort of attitude is better accepted and apparently even promoted because to a certain extent, many people do not fully reject the medical model of disability in order to adopt a strictly social model. Therefore, such chromosomal variations are not seen as human variations (like facial features and skin color) but as human deficiencies (i.e “disorders”). Hence the belief that hope for those “inflicted” with certain disorders lie in their knowledge that overcoming their disorder is a possibility and that there are others who share in their burden/pain. In sum, I think that in order to justify the “rightness” of the treatment against disability suggested in this video, the medicalization of certain human variations cannot be wholey rejected.

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