What the Gwendolyn Strong Foundation wrote and censored my commentary on:
This is SMA. And this is Jerika's story. After years of pain from the complications of SMA Type 2, Jerika, at 14-years-old, has chosen palliative care for herself. End of life is a hard discussion, and especially when surrounding children. The dialogue gets even more complicated within the disability community because disability alone is no reason to die. But SMA is complicated, and no two experiences are exactly the same. And this decision does not mean Jerika is giving up. In fact, it takes enormous courage to face end of life. In the SMA world, many parents, children, and adults navigate the delicate nuances of this topic, choosing the point at which dignity in dying is preferred. This is hard, but so important to think about with compassion.
And this comment that I wrote was removed from Gwendolyn Strong Foundation's Facebook page:
This is not, not, not, not, SMA. This is depression and hopelessness and frustration and teenage angst. And this is Jerika, one fourteen year-old CHILD's story. Yes, GSF, "end of life is a hard discussion, and especially when surrounding children," but so are discussions about navigating LIFE with a disability, which are rarely had under the medical model. Yes, GSF, "the dialogue gets even more complicated within the disability community" when adults, who run foundations on behalf of us, put a teenager's suicide in a pretty little death-with-dignity package with gentle language. Yes, GSF, "SMA is complicated, and no two experiences are exactly the same," but that doesn't mean it's okay to give up, which is exactly what this child is doing. She's being allowed to give up and die.
Don't say Jerika is "not giving up" just to make it sound more delicate. Yes, GSF, we navigate the "delicate nuances of this topic." What is the topic? Oh, yes, it's suicide. Children committing suicide is the topic and you're packaging it with a nice fancy bow when it shouldn't be packaged at all. Suicide plans should be thrown away and forgotten just as they should with ANY fourteen year-old child who is thinking and talking this way. And finally, not only is Jerika giving up, when you, GSF, package this story this way, YOU are giving up on her as well.