I posted about this earlier this week. The comedy special where the comedian made a joke about people with Down syndrome. And I’ve read the responses by the comedian’s supporters.
Remember how I’ve talked about taking the “red pill”? About learning things that I didn’t know that I really needed to know? For five years, my eyes have been truly opened to the just purely discriminatory treatment of people with disabilities. And how horrendous that it has actually been for people with Down syndrome. The “r” word? Yes, it’s hurtful. But it’s a red herring. It’s a distraction. It’s a thing that people can cling onto. “Don’t be so sensitive.” “It’s just a word.”
There are still countries in our world where children with Down syndrome are immediately sent to institutions after they are born. There are countries in our world where toddlers are tied to a bed because it’s easier to “control the children” with developmental disabilities. There are countries today who take these same children, when they turn four years old, and send them to adult institutions. Imagine little Mia in an adult institution. At her age, she would have already spent a year there. There are countries in our world that still just let children with cardiac conditions go untreated and die.
It wasn’t all that many years ago in the United States when doctors wouldn’t bother treating the cardiac, pulmonary, gastric, and other conditions that go along with Down syndrome, and they let them languish in institutions and then die at young ages. Fourteen was a good life expectancy.
I watched a special once about a deaf woman with Down syndrome who was sent to a mental institution because her pediatrician told her parents it was the best place for her. So at seven years old, they left her there. She was ripped from the only home she had ever known and was sent to live away from her family on a doctor’s advice. There were notes from that institution that when she asked for a box of crayons, she was told that she was “too retarded to color.” Her twin sister ended up saving her from the institution as an adult after her parents passed away, brought her to California, where she was finally loved and cared for. She became an outsider artist, creating the most beautiful fabric sculptures. But those sculptures still captured a woman traumatized by years in confinement.
A few years ago, a man with Down syndrome was suffocated by off duty police because he “resisted arrest.” Meaning, he didn’t understand their command for him to leave a movie theater because he was following the directive of his caregiver to stay in his seat and wait for her to come back. He died screaming for his mother. He died over a $12 movie ticket because the police weren’t trained to handle developmental disabilities.
It wasn’t that long ago that Mia wouldn’t have been allowed in a typical classroom, where she is thriving today. I would have been told that it wouldn’t be worth teaching her because she would never learn. Karen Gaffney (a speaker and self-advocate who swam a relay in the English Channel) told a story about how her parents were told by a doctor that she would never learn to walk or talk. And thankfully, her parents didn’t believe it.
What we have done as a society to people with Down syndrome is criminal. It truly is. The harm we have inflicted on a group of people because they happen to have an extra chromosome has been catastrophic. And the fact is that it’s still happening. There are still places where these horrors still exist. Where children are told they are too “retarded” to be a member of society.
So, yeah, I guess I’m sensitive. Because my daughter deserves better than that. Because Mia should be able to walk out of her house without worrying if someone is going to call her a name just because she has slanted eyes and a flat nasal bridge. That people will determine her value because of her chromosome makeup. She deserves to be heard. To be appreciated. To be valued. And I will make sure of that, don’t you worry. But that’s not enough.
Because I want her to live in a world where people fight less for the right to use a derogatory word and fight more for people to be loved.