Thoroughly Modern Messy

You may have seen a story go viral, where a mom sent a letter to the physician who had encouraged her to terminate her pregnancy after Down syndrome was diagnos...ed. Her response to him, after having her beautiful baby Emmy, was BEAUTIFUL but it's so, so important that we educate doctors accurately so they can educate their patients accurately. For me, that's the only way I think we advocates can be trusted and respected. Enough rainbows and unicorns. Let's just be honest -- it doesn't mean I would change a THING! <3

"We shouldn't be impelled to feel guilty for our needs or coerced into resolving them through suicide. It's a matter of achieving life with dignity, not death w...ith dignity. And in a civilized world, welcoming and accommodating all people will always be a better option than urging some to get out of the way."

I've learned that writing my truth means looking back later and realizing that truth may have changed. Which is OK. I just have to be willing to call myself out... on it.

New from CNN: On abuse of children with disabilities by their teachers, the problems with surveillance as an answer, and systematic ableism. Please share.

"A 5-...year-old African-American boy, a student in the special education program at the school, had been suspended by his belt from the top of the blackboard. According to the child's grandmother, the boy was screaming. The culprit wasn't some bully picking on a disabled child. According to news reports, the boy's teacher was punishing the boy for misbehavior. Worse, it wasn't the first time she had used this horrific, terrifying, method.

Mark your calendars for Tomorrow, Wednesday, April 20th at 1pm, EST for a FREE webinar that will introduce the work of the National Down Syndrome Adoption Netwo...rk, which maintains a registry of families who want to adopt a child with Down syndrome within the United States. The National Down Syndrome Adoption Network provides information to birth families who may be seeking alternatives to parenting as they prepare for the arrival of their child, provides support to families who wish to adopt a child with Down syndrome, and provides a link for agencies that are seeking adoptive families to provide loving homes for children with Down syndrome of all ages. During the webinar, Stephanie Thompson, Director of the National Down Syndrome Adoption Network, will explain the adoption process and what it takes to become an adoptive family.

Having a child with a disability doesn't make me automatically brilliant on ANYTHING to do with disability. But it does make me more aware of my lack of knowled...ge. When the image of the packaged, pre-peeled orange went viral, I snickered, too. Thanks to Tim Villegas for helping me see this in an entirely different light.

I wrote an essay masquerading as a review of Michael Bérubé's new book on intellectual disability and fiction: The Secret Life of Stories.

"Ordinary fun-house m...eta-nonfiction aside, intellectual disability also provides the ethical core for this text, much as it does for so many of the fictional works. Throughout, Jamie Bérubé is present. Jamie’s discovery of what stories are opens the book. Jamie’s continued contemplation of stories reappears throughout, either explicitly or implicitly. In the final pages, I suspect he is especially present during a sober discussion of Lennie Small, the disabled character in Of Mice and Men. In the state of Texas, Bérubé reminds us, a disabled individual can be sentenced to death if their “mental capacity […] exceeds Lennie’s.” Suddenly, how we interpret literary representations of intellectual disability becomes a literal matter of life and death. Bérubé writes, “the interpretive stakes are always high when the subject is intellectual disability, because the stakes are ultimately about who is and who is not determined to be ‘fully human,’ and what is to be done with those who (purportedly) fail to meet the prevailing performance criteria.” I can’t prove that Bérubé was thinking about his son when he wrote that sentence; I can only tell you that as I read, I was thinking about mine."