On January 19, 2017 the National Down Syndrome Society (NDSS) made a statement on their public Facebook page reporting they had met with Betsy DeVos, the nominee for Secretary of Education. This meeting and this post happened in the absence of any prior statements decrying her nomination.
It perhaps goes without saying that DeVos’ nomination hearing was an abject disaster, making plain not only her absolute lack of qualifications to hold such a position but also her complete lack of preparation for the hearing itself. Her lack of qualifications alone should be cause for concern, but her comments on special education and the laws that govern it were particularly alarming.
So alarming that there has been enormous backlash from the disability community and parents alike, a situation creating unlikely allies even among staunchly politically divided individuals. So alarming that one would expect every organization that claims to represent the disability community to stand in firm opposition to her nomination.
Enter NDSS, the self-proclaimed “leading human rights organization” for individuals with Down syndrome. Instead of rallying its community of individuals with Down syndrome and their families, instead of giving us action steps to protest this nomination, instead of releasing a public statement condemning DeVos’ proposed trampling of civil rights, they met with Ms. DeVos and released a cheerful statement.
NDSS claims to be an organization that does not endorse candidates or nominees and inferred that to pass on the opportunity to meet with Ms. DeVos at this time would have been politically detrimental.
No other disability-related organization has met with Ms. DeVos as of yet, but it is reasonable to assume most will eventually work with her if she is, in fact, confirmed. This meeting was in no way politically necessary to ensure a working relationship with Ms. DeVos during her presumed tenure as Secretary of Education. Rather, this meeting and their praise of Ms. DeVos read merely as an endorsement of not only Ms. DeVos but also of her dangerous policies.
Timing is everything, and on this, NDSS got the timing horribly, embarrassingly wrong. NDSS made a political maneuver to place itself in a position of favor, but in doing so gave DeVos’ supporters an endorsement and a cheerful photo opportunity to use as an example of how the disability community supports her nomination.
NDSS went on to “applaud her commitment to special need families,” and stated that DeVos spoke of her “strong support and record fighting for special needs families.” This from a woman who days earlier, under oath, stated she planned to leave IDEA to the states and seemed confused as to what IDEA stands for or does for the disability community.
As the “leading human rights organization” for Down syndrome, we must hold NDSS to a much higher standard than a politically advantageous photo opportunity. That place of honor in this community comes with it a great deal of responsibility and, by necessity, the need for making moves that may not “feel good” but are ultimately right. It means skipping photo ops for hard hitting questions, it means rallying a community to action, and it means speaking truth to power: DeVos has no place anywhere near the Department of Education and this community will not stand for it.
Holding our advocacy organizations accountable for their actions can be daunting, and I feel it challenges our deeply held belief that we must sometimes go along to get along. We do it all the time in classrooms, IEP meetings, community events. After a while, we understand we cannot go in to every situation with our armor on if we want a net positive outcome down the road.
I’m telling you now that this is one time we must have our armor on. We must push back. NDSS is one of our direct lines of communication with the complex governing system up there on that hill. We must hold them accountable and be assured that they will fight for people with Down syndrome, even if that conversation is uncomfortable and doesn’t leave everyone smiling at the end.
Ms. DeVos is without doubt a danger to the civil rights of the community NDSS claims to represent. This goes beyond a mere difference in political opinion or varying ideas of how best to educate our children. There are ways to disagree with her nomination and ways to advocate that do not involve losing all political capital. It involves chipping away at that glossy exterior, though, that seems to accompany most things regarding Down syndrome “awareness.” It involves holding those that govern us accountable for their actions and letting them know that our community’s rights are not for sale.
I implore NDSS to step up and lead as we enter uncertain political times, to model for us effective political resistance when our community’s civil rights are at stake. As our human rights organization, it’s time to move past the photo opportunity.
About the Author of This Post
Meriah Nichols is a career counselor. Solo mom to 3 (one with Down syndrome, one gifted 2E). Deaf, with C-PTSD and TBI, she’s also a gardening nerd who loves cats, Star Trek, and takes her coffee hot and black.