I won’t wear a safety pin so your family can know I’m good. As singer, songwriter Lou Reed so aptly put it in his song Bus Load of Faith: the goodly hearted made lamp shades and soap.
My son lives with Down syndrome. He is among a group of people we are trying very hard to eliminate. My concern is not with woman who choose to abort a fetus who tests positive for Down syndrome. I’m prochoice. My concern is the messengers with the most money, most concision and the least emotional attachment. I’m talking about the medical and scientific communities supported in part by profitable genetic testing companies, all touting the same compelling message: people with Down syndrome are defective. That message trickles down to where my son lives day-to-day.
Six reasons—from the intuitional to the mundane– I know people cannot be depended on to defend my son:
1. The speech therapist: Behind closed doors you strapped my then 2 year-old son in a chair so only his head and legs could move. You sat calmly next to him while he screamed, crying for help, his head drenched with sweat. I discovered you accidently when I arrived early to school. Hearing blood curdling screams I opened a door to discover your handiwork. How many other administrators, teachers, therapists and parents walked down that hall before me ignoring my son’s screams?
2. To the school district: Your preference on putting children with Down syndrome in self-contained classrooms condemns them to exclusion. It also allows you to not learn or facilitate inclusive practices in school. So when my child is not reading in school it is his fault.
3. The Superintendent: Our school district’s former Superintendent told my husband and I: “If you tell anyone this I will say you are lying. I can’t do anything to these women until they retire.” The question asked to him by me is: “Why do you allow employees to bully and infantilize my son?”
4. The new neighbors: They moved into our building a year ago. They are nice white people (I’m being quite sincere here, they are nice and they are white people) who talk about what the NAACP thinks about charter schools and the horrors of genetically modified food. They do not however have any curiosity about why their daughter is allowed to attend the daycare across the street where my son is not welcomed.
5. The graduate student: Thank you not very much for telling me you learned in school that my son, who you do not know, is very retarded and has behavior issues. When you shared: “You know, they get very upset,” I wanted to slap you silly. So it must run in our family.
6. To those who wonder about my son’s socialization: We are in our third year of homeschooling where my son does read quite well, thank you very much. I get asked on a regular basis by family, friends and strangers in a concerned tone: “But, what about socialization?” To which I’m going to start saying: “How many of your kids have friends with Down syndrome?”
Maybe before we think about telling strangers what kind of people we are we need to honestly contemplate that question deep within. Tip: A safety pin will not help you do the right thing.
My six reasons are not a definite list. The definite list can be found in my memoir: Not Always Happy: An Unusual Parenting Journey to be published May, 2017 by Central Recovery Press.
This is my first post as a weekly columnist at The Good Men Project—although I have published here several times before. I hope to offer in the weeks to come a mix of social commentary, narrative advocacy, interviews and frank unsolicited advice.