In the Down syndrome blogging community, something called a “blog hop” is happening this summer, hosted by Meriah, the author of the blog A Little Moxie. The point of said blog hop? To get bloggers, such as myself, to write posts specific to issues surrounding disability. To get us thinking, to get us reflecting, to get us capturing thoughts, feelings, and emotions surrounding disability in a tangible form. I am about a month late out of the gate, so I have some catching up to do. The first post was to be an introduction about our connection to disability. So, here goes nothin’!
My Connection With Disability: An Introduction
My present connection with disability is this guy. This three year old, bundle of energy, joyful, passionate, unbridled little boy who is my firstborn child. Those of you who follow my blog already know how amazing this guy is. For those who are new here, this guy is amazing!
My connection to disability didn’t start when my son Jake was born, however.
Let me preface this post with an admission.
I am ashamed. I am deeply ashamed of what I am about to write about. I have often considered this post, and discarded it before a word could be typed. If I could go back and change my childhood thoughts and actions, I would in a heartbeat.
I was just a kid.
Every week, my parents would load us up in the car, and off we would go. We would pull up to the house, unload, and the kids would be relegated to the basement, while the grown ups would congregate upstairs. My parents would enjoy their couple of hours of study and community with their friends, and all of us kids would play downstairs.
I remember being outnumbered. There were more boys than girls. I didn’t particularly enjoy playing with boys at that stage of life. I really only did it out of necessity ~ to elude the boredom that would ensue if I chose not to participate in whatever game they had concocted that night.
There was one boy who stuck out. His name was Brendon. He was different. He didn’t catch on to our games as quickly. He didn’t “fit” into my paradigm of what a kid my age should look like. So because I feared the differences, I did not like him. I don’t remember ever being outright mean to him, but subliminally I was mean. I rarely spoke to him, I only included him when absolutely necessary or at the urging of our parents. I remember trying to manipulate situations so that he and I did not have to interact.
This boy had Down syndrome.
I am not defending myself here. I have cried long and hard at how inwardly cruel I was towards Brendon (and perhaps outwardly as well, although I seem to have blocked out a lot of those memories because they are hazy at best). I am ashamed of my behavior and wish that there was a way I could go back and change it, redeem myself, make it right. And Brendon, I know you will never read this, but I want you to know how incredibly sorry I am.
I will say this, however. I do not remember anyone ever explaining Down syndrome to me. I do not remember ever having a conversation about it, being able to ask questions, or having any sort of transparency around it. I don’t remember open dialogue, opportunities to ask questions, or chances to learn about him or with him. I just remember that I thought he was different, but there was never any further explanation given.
I hope, pray, beg, and plead with God on a regular basis that the kids with whom Jake already interacts, and will continue to interact with in the future, will be better than I was. That they will be genuinely interested in a friendship with Jake. That they will respect and value him, differences and all. That they will take the time to get to know him, and see him for who he really is, not for how he differs from them.
This starts with me. With us. With knowledge. With information.
Even now, I take every opportunity that I can to talk to the kids that Jake is playing with about Down syndrome. To make it something tangible, something that is a part of their experience, something that they can normalize, absorb, and understand, so that they can treat Jake with the same dignity and respect they would show to any other peer.
I was blind. I am deeply ashamed of that. I am also deeply repentant. Every fibre of my being desires to arm the coming generation with what they need to avoid becoming like I was at that age.
I was blind, but now I see.