my beautiful daughter, who is transgender, is also autistic. tho each of these facts of her life and mine presents its own special set of circumstances, neither has thrown me exactly ‘for a loop’.
then, recently i received a call from the geneticist. i hoped it was about finding out what sort of nastiness is behind the juvenile polyposis syndrome, a condition which necessitates yearly colonoscopies, and removal of the constantly arising polyps.
being transgender has caused only few issues thus far; acceptance by others as a girl, frustration at having the ‘wrong spare parts’, and wishing she could have the gender-reassignment surgery already are about the extent of it.
dealing with being autistic is a bit harder. there are tantrums, an inability to self-calm, problems with transferring things from short to long term memory, rigidity in ritual behaviours, ocd…that sort of thing.
whereas the juvenile polyposis syndrome is understood to carry along with its diagnosis a significantly increased incidence of cancers.
so it had been my hope that the request by the geneticist’s team for ziona to submit a sample for study, that it would be to find out which of the known gene mutations or transcription mistakes was the cause of this potentially life-threatening condition.
but as it happened, the request was for ziona to be part of research into the effects and phenotypical expressions in people who have a translocation of genetic material from its assigned chromosome to another chromosome.
in the interest of furtherance of knowledge about what such thing might have to do with her developmental delay, (she is very high-functioning and only delayed in ways explained by her autism) we decided to become part of a scientific study that will research the manifestations, if any, in relationship to these various translocations of genetic ‘stuff’.
the chief geneticist, who hadn’t seen ziona since she had been living as the girl she is, looked at her file in his lap. he made the notation “transgender” without any explanation on my part, since his colleague had briefed him. but no sooner than he’d made the notation he told me that there was no way to tell what had caused ziona to be transgender.
i let him understand that i knew that this was just a study about the relationship of translocations and developmental delays. feeling a bit miffed tho, that the study was addressing things that are least problematic in our lives.
after we got home i began to read the voluminous explanations of participation and signed the consent forms. but as i did so, i couldn’t help but wonder what would happen if a relationship is proven? what if it were possible to determine if such a translocation were likely to occur? would there be some who would terminate a pregnancy if a blood test revealed a likelihood of this translocation?
many of my friends in the lbgt community are of the opinion that should a test be proved to predict a baby’s sexual tendencies before it is born, some folk would see it as good cause for abortion. and, after all, since in some parts of the world having a boy is so preferred to a girl that female infanticide still happens, is it any stretch at all to imagine what it will mean when science is able to determine such matters aforehand?
today, some people do terminate pregnancies when it is known that the child has spina bifida, or down’s syndrome. but is it ethical to disclose information that may result in such a decision?
some will argue that birth-defects should be an exception to ethics regarding disclosure because such things result in life-long hardship and suffering for the child as well as expense to the parents and/or society. but there are those who believe the same thing is true of gayness, or transgender; that they are undesirable birth defects.
what will it mean for society as a whole if the quest for scientific understanding turns into a virtual practice of a kind of eugenics that would rob the world of people who are different?
as for me, i can’t imagine my world without this creative, autistic, transgender daughter.
so, although we decided to participate in the study, to further scientific knowledge, it is my highest hope for the sake of our world’s future, and the sake of those who will inhabit it, that compassion and wisdom will advance as well, else science will become the gateway for ‘cleansing’ the human race of some of its greatest attributes.