It’s been a passion of mine that people with disabilities have a say in the way they are able to experience the world. For too long, we have been expected to be passive observers of life.
I have been silent for 13 years, and my voice – my life – have become the advocacy I needed. Now that I’m able to communicate, I can’t stop raising the topics near and dear to me, like presuming competence and allowing people with disabilities to be active participants in the decisions that affect their futures.
I remember standing on the corner of a busy NYC street and thinking how close I came to missing that beautiful frenetic that lives in that amazing city. That energy lives inside me too! I want to travel the world and see everything it has to offer. That [Odd Fellows] trip made me realize that with the right supports, anyone can experience that vibe too.
In the future, I want to do everything anyone else wants: to go to college, get a girlfriend, have a job, go to a bar for fun, and live in my own apartment. It’s going to look a little different, and I’ll need support in getting there, but I know I will some day.
A presentation at the 2018 Breaking Barriers Conference in Redmond, OR during the session, “Ideas Worth Sharing.” Transcript follows below.
I’m here today to share my thoughts on what the phrase “presuming competence” has meant in my life. I’d like to begin by telling you a bit about my life so far.
When I was three and a half, my parents clued into the fact that I was different. I guess I played with toys in ways that were different from other kids. Given that they were talking in Serbian and Lithuanian, my parents noticed when I stopped talking altogether. It worried them, but not me – I had bigger concerns. Like the wheels on a particular toy car that I loved to spin and spin. Or the way the sun would shine in the dining room on the wooden floors. Or I could spray the hose in such a way that I could see it break into individual droplets. These were precious secrets I kept to myself.
I also kept secret how hard it was for me out in the real world. It was so confusing and loud, and there were no rules that made sense to me. I was probably a complete brat, but it wasn’t intentional. My parents would try to engage me in games, but I just couldn’t understand what the point was. I felt ashamed, even at that young age.
As I got older, I still couldn’t handle most of the environment around me, and felt so frustrated. It was like the world, which was so normal for everyone else, would not or could not slow down enough for me to process all the sensory input I was receiving. You see, I find that I am overly tuned into all the sensory stimulation happening around me. If you were to close your eyes right now, you might see what I mean. You can hear papers rustling, people sighing or coughing, the squeak of a chair, people talking nearby in the hallway, and maybe if you really listened, you might hear the electricity of the lights flickering.
Now add in the visual component: how the lights add shadows to certain parts of the room, or how there’s a person with a really interesting face sitting nearby, or how a certain participant reminds you of that guy from Fred Meyer.
Let’s not forget the distraction of touch. You are super tuned into how soft your t-shirt is, or how tight your shoelaces are. You feel the hardness of the table underneath your elbows. You feel the weight of your bottom on your chair. It seems like you can almost feel gravity.
Most distracting of all, you can see people’s emotions in bursts of color, and music appears that way too. It’s like a sensory orchestra is going on in your head, only not for anyone but you. And no one understands or sees that this cacophony of noise is parading down the middle of your brain’s highway.
Instead, they think you’re dumb or mentally retarded. They try to help by drilling you over and over with lessons on eye contact and imitating block stacking; and all the while, you are not allowed to do those things that bring you comfort and reduce your stress. Instead, they use them as rewards for completing something on their agenda. It goes on for minutes, then hours, then months.
All that time, I knew I had the tools inside of me. These included the ability to reduce all sensory input to only one or two channels. Having this ability meant I was able to focus on what someone was saying, even if I didn’t appear to be listening. I also learned to triangulate my hearing so that a background sound, like a conversation between two other people, could act as a buffer so that the focus of my attention could stay in my sights. I would hardly expect that other people would have recognized what I was doing, so I can’t blame anyone or any therapeutic approach for not reaching me.
The key that unlocked my abilities for people to notice was learning to letterboard. Having the ability to share what was on my mind was life-changing. It was the difference between having things done to me versus my having a say in how I chose to live my life. I meant that I was finally able to decide how I would conduct myself in everyday choices: what I thought about a topic at school, how I would spend my time, and what hopes and dreams I wanted to pursue in the future. Most of all, being able to communicate meant I had a brain with independent thoughts and desires that no one but me owned. It was wonderful to finally be acknowledged as Niko and not as my mom’s son with autism or as that client someone saw twice per week. It was like starting a brand-new life with powers that I had only dreamt about. I can’t describe it in any other terms except that it was a miracle.
And the biggest miracle of all was being treated with respect and dignity. From having no voice to suddenly being a full-fledged member of my school community and family was a drug that has fueled me to making the most of every day. I cannot take anything for granted because I know what it’s like not to have anything at all. I will approach every day as if it’s the first day I gained my voice, and thank my mom for never giving up on finding a way for me to communicate. It makes you think, doesn’t it? Where would I be today without her stubbornness and perseverance? I learned about the phrase, “presume competence,” from her. She is the first one to admit that she hadn’t been presuming much, and now, she is the one pushing me outside my comfort level every day. She asks my opinion; she makes me do things I used to skirt by from doing because I was autistic; she takes no shit. I couldn’t be happier for it.
So I say to all the parents here today, as well as the teachers and therapists, to keep trying to find your child’s voice; keep making them contribute to your family’s dynamic; keep believing in their competency. I promise you will not be disappointed.
Right now I feel great about myself, but there are so many times when I feel like crap because I’ve done something wrong, and I’m getting yelled at for it. When it’s something any other 16 year old would get in trouble for, no biggie. But so often, it’s related to my autism. For example, when I repeat the word “Okay” over and over, and everyone is yelling at me to stop repeating, or when I cut an important piece of paper. These are times when I feel terrible about being autistic. I wish I could control these better and not piss everyone off.
It’s been explained to me that this where my anxiety/OCD and stims overlap, and that’s why they are trying to get me to stop; to lift the needle off the record, if you will, and form a different response to stress. But it’s so hard, and it also hurts my self-confidence. Very often, I want to yell back at people, “Is there anything I do right?” I am loved, but like all relationships, that love can be complicated. I hope that as I make my way in the world, I can get a better handle on my anxiety and allow myself a break from feeling crappy.
I hate people watching over my shoulder as I talk. I prefer that we have a conversation between us and not be eavesdropped upon.
I also hate when someone takes my letterboard and tries to talk to me. I know I make it look easy, but it takes training and patience. Grabbing my letterboard is akin to sitting in someone’s wheelchair or trying someone’s hearing aid.
Also, I hate it when someone tries to talk to me when my support person isn’t there. Really hard and unfair to me.
I hate when someone doesn’t want to have a conversation with me on the letterboard. It’s ableist to insist I talk to you verbally.
Check me out! I’m going to be in Disability Power PDX. How about that? I spent yesterday laid up with the worst stomach ache I’ve ever had, and today I found out I was selected to be in a disability rights group. Life is funny.
I’m pretty excited to be a part of it because I think this is exactly the time for disabled people to voice their concerns. We are under assault for needing supports that allow us to be independent. We are needing to convince others that we should be included in our communities. Not only are we having to take this advocacy to the streets, but we are having to take it to the courts, to the voting booth, and to the right people who will listen. I hope this advocacy will have the effect of bringing people together on issues of importance to people with disabilities, and not further divide us.