I birthed and raised nine children; I homeschooled all of the children some of the time; I figure I’ve shopped for, prepped, and cooked well over 21,000 meals. But the most demanding expenditure of my maternal energy has been in advocating for my child with Down syndrome because the issues involved are so large, encompassing freedom, justice, shared humanity, and the rights of the individual.
I’d like to make a distinction here; this energy expenditure is not required intrinsically because my child with special needs demands off-the-charts input and attention. There are certainly some differences between raising him and my other children, but few and not terribly taxing. I’m talking here about the energy required on my part to help him interface with a world that is often not open to including him and occasionally downright hostile to the idea. I’m talking about how certain individuals’ attitudes—based on fear, lack of exposure to people with disabilities, and various preconceived notions—pose the biggest hurdle, and thus the biggest energy suck on the part of the disability rights advocate.
Aside from some settings that are reliably safe and welcoming, such as the precious Special Olympics program, many ventures into the big wide world require:
*convincing others that my son can be a full and eager participant in whatever class or experience they’re offering.
*persuading the gatekeepers that having him in the class or whatever will require nothing or very, very little from them beyond what they already do.
*begging and bargaining for his inclusion in things, experiences, settings that really don’t need to be all that exclusive—I’m not talking here about admittance into a neurosurgery program.
Including him does require kindness and an authentic commitment to the value of human diversity—not a “commitment” that celebrates racial and ethnic diversity, diversity of gender preference and sexual orientation, but stops short at neurodiversity and genuine inclusion of people with a variety of disabilities.
I’ll share three experiences.
I
My son was hospitalized for a heart condition at four weeks old. The heart condition had a high association with Down syndrome, so the neonatologists ordered the blood test that determines whether or not a child has DS. So when the blood test came back and I learned that, yes, my son had Down syndrome (and the delivery of the diagnosis was terribly artless—that’s a story for another day), I was in the hospital, where I had taken up residence to be near my baby. Anyway, once I got the news, it became my task to deliver that news to others.
The first person I told—and I was testing the waters here, how was I going to do this, what was this going to be like?—was the hospital chaplain, who happened to be someone I knew socially. Here’s how it went:
Me: The bloodwork came back. R has Down syndrome.
Chaplain (her face crumpled like a piece of aluminum foil at the news and she started crying): Oh, no!
I remember thinking at the time that her reaction was over the top. The news was difficult, yes, but it wasn’t that bad.
(To be fair, I think the chaplain would have responded more professionally if we hadn’t known each other outside of the hospital setting. But still.)
My point: This was my early introduction to the reality that I was going to have to caretake others in their interactions with my son, that as a society we profoundly lack any kind of fluency in meeting disability with openness and grace, so I was going to be constantly on duty, performing acts of cultural translation between the disabled and nondisabled worlds. Let me say that, over the years, my performance in this role has been uneven. Sometimes I get tired.
II
When my son was four, I started him in small group swimming lessons at the same pool where my other children had learned to swim. In the changing room after a lesson, we found ourselves next to one of the other boys in my son’s group, a neurotypical boy about four years old. The other boy’s mother was toweling him off and helping him get dressed, just as I was doing with R.
The other boy pointed to my son and said to his mom, “He’s weird.” My son was unfazed by the comment, but my innards liquefied. My innards liquefied, but I had no idea what to say. So I said nothing. The other mom also said nothing. I felt so frantic for my child that I feared my heart was going to audibly crack into pieces.
Later, I thought I might have said something like, “Weirdness is in the eye of the beholder”—obviously a deeply bizarre thing to say to a four-year-old. Or “Thank you,” but I wouldn’t have really meant it because the kid did not mean weird cool, he meant weird weird.
What would have really helped me would have been the other mom saying something like, “Everybody’s got their something.” Just to make it possible to speak words after her child’s statement about my son. Then maybe I could have said something. But that’s a lot to ask of the other mom, I think. I wonder what earlier me, before I had a child with a disability, would have done if the tables had been turned. I think I probably would have said something, but it would have likely been wrong or awkward, something like, “No he’s not,” something to make it all go away. These situations are complicated, but if there were some way for me to wordlessly communicate to the other mother, “I’m dying over here. Can you toss me a lifeline?” maybe I could have emerged a little less exhausted and battered by it all. (I actually think that I did communicate wordlessly that I needed to be thrown a lifeline. But that mom would have had to have been listening with her heart to hear it. That can be hard to do when an external situation becomes difficult to navigate.)
I have no answers here, only bumbling questions. I’m sure there are many parents of children with disabilities who handle these situations much more gracefully than I, with the big picture in mind and all that. I’m just sharing my own oafish experience.
III
There’s a place near where I live, Hidden Villa, a nonprofit, 1600-acre organic farm and wilderness area that offers summer camps and other programming. Here’s Hidden Villa’s mission statement from its web site:
Our mission is to inspire a just and sustainable future through our programs, land and legacy.
All of Hidden Villa’s programming emphasizes social justice and environmental stewardship. Some of my children had attended the summer camps and really loved them over the years. I knew that the summer camps worked hard to be inclusive, as I had met families whose children with autism attended and enjoyed the camps.
So when I got an email from Hidden Villa announcing a two-week, nature explorers day program in the spring one year, I communicated with the contact person for the program, explaining that I would like to enroll my son and that he had Down syndrome. Given the openness of the summer camp program, I considered sharing my son’s diagnosis a formality.
It took quite a few days for the program contact person to get back to me: They couldn’t possibly include my son; they weren’t equipped to include anyone with Down syndrome.
We had a couple of back-and-forth emails. I was trying to understand their fears and concerns. Were they afraid he would hurt someone, bite someone, kill someone? Were they afraid he would soil himself, couldn’t take care of his own toileting? Were they afraid he would expose himself, or otherwise behave inappropriately? Were they afraid he couldn’t follow directions? Were they afraid he would wander off? Were they afraid he would drool? They didn’t have to worry about any of this stuff with R. For the record, my son is mild-mannered, cooperative, attentive, enthusiastic, and was completely toilet trained by two years old; they would have been lucky to have him in their damn class. I tried to imagine and address their concerns, though I never got a clear statement from them of what their concerns were, so I was kind of playing the game blindfolded.
This is a foundational problem. If you are unwilling/”unable” to include a person with a disability in your programming, and you are unable to articulate why, you throw up an obstacle that I, as the advocate for my child with a disability, simply can’t hurdle. I can’t INTUIT the dimensions of your issues, or their boundaries, or their nature. If you can’t get specific about your concerns, we can’t enter into a dialogue, and we get nowhere. If you have a vague, generalized revulsion with respect to disability and people with disabilities, or, if you have had absolutely no experience with or exposure to people with disabilities and are scared at the idea of initiating that kind of exposure—but you don’t tell me this; you only tell me my son is not welcome—we all lose. But let’s be clear—the one who loses biggest is my son, because your inability to language your experience means he doesn’t even get a chance.
I communicated with the contact person from the summer camps. Was exclusion of children with disabilities now a Hidden Villa policy or something? No, the camps were not associated with the day programming, and they continued their policy of generous inclusion.
So then I was left with this: Did I want to go to the mat over this one? Fight it to the finish? Because clearly they were wrong. Maybe, by pushing for inclusion of my child in this situation, I could change minds, educate people, make a difference. I considered proposing an in-service for Hidden Villa staff, conducted by my son with Down syndrome and me.
I chose not to pursue it, and it was a decision based on the economics of energy and the finiteness of time. The irony of a place whose mission statement emphasizes the inspiration of a “just future” was not lost on me. I just didn’t have the oomph to take it to the finish line.