Isn’t there an old sports adage that goes something like “the best defence is a good offence”?
I assert we need to adopt this strategy with our advocacy and awareness raising in Canada as we face the impending arrival of prenatal screening in Canada.
I’m so pleased to be a member of the CACL Values and Ethics Task Force, their leadership, and partnership with People First of Canada (in a time when leadership is hard to come by on this sensitive and divergent issue) has made me proud to be Canadian.
We have had the opportunity to see into the looking glass, watch the use of these tests spread across the US, and the uptake on their use increase. We have watched (largely in silent horror) as the new prenatal screening tests for Down syndrome (Trisomy 21) as well as Trisomy 18 and 13 (Edwards and Patau syndrome) and the potential to eliminate some 64 other prenatally determined conditions (which science speculates will be detectable sooner rather than latter )capture the imagination of medicine and popular culture because we think we may be able to create a human family which no longer includes, what the public perceives as “the horrible suffering of enduring a disability”.
In my meetings with the SOGC (Society of Obstetricians and Gynaecologists), I had the opportunity to review an embargoed copy of their draft position statement on these new testing technologies. While largely unclear on who will pay for the tests and who will be STRONGLY encouraged to avail themselves of the technology…the writing is on the wall.
Here is what I would like…Instead of playing our usual-appalled and outraged card AFTER the tests have been cleared for Canadian use, and AFTER the medical associations have toolled and tinkered with the language in their guidelines to make it bland enough in order to lull the Canadian public into thinking these tests make the world somehow more sterile, safe, and less “broken”…
Lets do something
Lets meet with these organizations, professional medical groups, and societies.
Lets devote our conferences, committee’s and task forces to these discussions.
Lets talk no more of TV stars, special segregated places, sports or classrooms.
Lets support Self Advocacy organizations to develop position papers and to talk about the impact this culling of the human family has had on their experience in the world.
Lets own the discussion.
Lets take it away from those who would use the prenatal elimination of disability in the world to further their own private and justice denying agendas.
Lets talk about the right to fair, accurate, balanced and timely information for women in Canada
I am travelling to Washington DC for the DSAIA (Down Syndrome Affiliates in Action) conference Wednesday to make two presentations to the majority of Down Syndrome groups in the US.
I will be privileged to watch and learn from their “March on Washington” when hundreds of local representatives from disability groups in the US will meet with their State designates, governors, and senators on Capital Hill regarding the legal and ethical protection under the law that women and people with disabilities deserve as it relates to prenatal screening.
I will share with them the momentum gained by People First of Canada, CACL and like-minded organizations on the closing of institutions, of these organizations that are brave, strong and willing enough to devote resources, for conferences which will address -square on-these issues.
Let’s do it.
Lets keep doing it now, before it’s too late, before the die has been cast.