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Did you ever have an experience where someone chooses to say something that you find offensive? What if you were the only person in the room who was offended? It happens to me all the time, and is usually related to some disability-related comment or attitude about what it would be like to have some additional challenge in life. I know the person making the comment doesn’t mean any harm to me personally, but I believe these instances of ableism are examples of how far we still need to go in terms of reaching true equality in society.
For the most part, ableism brings forth different meanings depending on who you ask to define it. A person with a disability will readily be able to give examples of times when they were discriminated against because of their disability. On the other hand, if you ask their parent to give an example, they might have other instances to share that are bigger than what the person with a disability mentions because the person who experiences the hurtful prejudice may find that it’s rarely one occurrence but rather, the sum of many over time that leave the lasting memory.
Even more disparate might be the understanding of ableism by your average American. They might totally blow off that there is pervasive discrimination against people with disabilities or worse, they might not care because they value the lives of able-bodied people more.
There was one summer not too long ago when I was too old for camps and too young to be working for money. I think my mom got the idea from someone she sort of knew that there was this place in Vancouver where I could volunteer twice a week. It was a secondhand store sort of like Goodwill, but way shabbier. The proceeds went to the local animal shelter. There were about two or three employees – the rest were volunteers. I did have an interview, and the volunteer coordinator who led it was never seen again. I couldn’t get a sense of who worked there regularly – there always seemed to be someone new.
I think I spent a total of 30 hours that summer having a blast at ReTails. My position entailed straightening all the videotapes and making sure that the clothes were hanging in the right direction and weren’t falling off the hanger. This was my dream organizer job! I used to get in trouble at the library for organizing the videos according to how *I* thought they should be organized. At ReTails, I was in charge of them, and I can tell you, they were where they were supposed to be.
Hanging clothes was also a lot of sensory fun because the hangers were similar, and they looked so orderly all lined up. I had someone supporting me (sort of like a job coach) who would answer questions from customers who tended to be a little weird and eccentric. He would interface with the rude people who were just unhappy in general.
I think what I took away from this opportunity was an appreciation for the people who keep stores looking so organized and pretty. Most of them go unnoticed, but boy, do you notice when their work is not performed. It gave me a respect for work that is essential but underappreciated. It also taught me about myself and the need to play to my strengths instead of what someone said I should be doing. There is dignity in a job well done, even if it is organizing shelves.
My experience at ReTails showed me that I needed to find a job that let me put my autistic gifts to work. I know I need to cut back on my organizing at school and wait until my shift at Trader Joe’s to straighten things. I believe this is going to be the new normal for me as I get older: to find jobs to let me be my authentic self.
I am here today to talk to you about my employment journey. Although I have only been working since February, it has been a bit of a long process to get to this point. First, I’d like to tell you a little about myself and my autistic experience.
I have always been autistic. Having this atypical brain as long as I can remember has been a source of both pride and frustration. Let’s start at the beginning: I went through a lot of therapy. ABA, speech, OT… You name it, and I was probably subjected to it. That period of my life was not terrible, but I didn’t get any say in what was done to me. How different was it, really, from other kids my age? Well, not many get to make life-changing decisions or know that they are constantly learning, but I did. I knew it all the time through the clipboard that the team scribbled notes on and the bimonthly clinics where they discussed my progress on goals. I knew I was different from other kids, but it wasn’t until I was older that I realized how much. Most people get to play when they’re little, but my play was tracked. Most kids end up with memories of school and their peers, but I remember only playing with college students. It was truly the most bizarre childhood. Now I think I would have been fine without all that therapy, but it’s not something that’s readily accepted – to go without therapy when you’re little and autistic. However, it’s in the past, and I bear no ill feelings towards anyone because I know they were only trying to help me.
About the time when I started attending a private ABA program, I discovered Trader Joe’s. It’s our Saturday stop, and where we get most of our groceries. It’s a place that appealed to my love of order and lining things up. When I was there, I felt understood. My need for order was met with its calmness and perfectly lined products. Let me explain: there is nothing in this world that brings me more satisfaction than really organized rooms. That’s not to say that I can’t handle disorder: you should see my school setting! But my autistic brain gravitates towards order. It’s how my autistic brain navigates and creates rules that make sense of the world.
Getting to the point where I am able to understand how to deal with all the illogical aspects of people and society as a whole has taken me years. I used to be so overwhelmed by all the sensory stimulation and noise from the people around me. They would talk too loudly or wear too much perfume or have a distracting habit which would prevent me from being able to pay attention to what they were saying. And don’t get me started on eye contact! That was painful, almost a physical revulsion. We autistics use so many different ways of picking up cues that such a direct line of communication feels like a straight shot of heroin into a vein. Not a high, but more like an electric shock to the system. How I hated the drills where I would have to make eye contact for seconds at a time! I used to be so resistant to that work, but couldn’t tell them why. Now eye contact is no big deal for me, and I think I use it pretty well.
Finding a way to communicate has made all the difference in the world. It made it possible for me to attend school and get a job, only I have to have more supports than my peers. But is that so terrible? I think it makes for a more interesting world. I mean, I think we need to make space for everyone who wants to work and has a special interest or skill. It takes some coordination and a lot of patience from everyone, but ultimately, it’s so worth it. I wish I could have started at the age of twelve in what was the start of my Trader Joe’s obsession!
Having an education means nothing if you don’t use it in your professional life. At least, that’s what seems logical to me. Why go to school in the first place if you can’t do something later in life that interests you?
I remember a video I watched about Fairview Training Center in Salem and the people who lived there. I think that place was like hell on earth, yet the people who were eventually placed in community housing when it was being closed still managed to be positive and hopeful about their futures.
This is our strength as a community. We often don’t get the education that our non-disabled peers get; we don’t get the jobs that are meaningful to us; we don’t get to live on our own and experience what that feels like. But we still keep hope that things will get better. I think this comes from having heard the message of not being good enough all our lives. I mean not being good enough students to belong with the other students in a regular class; not good enough athletes to play on a regular team; not good enough friends to be invited to someone’s birthday party.
When you hear that message enough times, of course, you start to believe it. And a hope springs from that place – a hope that someone will see past those imposed limits and move with you into a new purpose. One that values you as a person and sees your disability as a part of who you are but not your entire identity.
Nothing feels better than having someone value you as a person rather than a disability. It is remarkable that in this day and age, we still have people who don’t feel like first class citizens in this country. My biggest fear is that we are returning to a time where people with disabilities are relegated to the outskirts of society and have even fewer choices of where to work, live, or go to school. This would be disastrous for millions of people with disabilities and their families. Leaving us out of the conversation about our futures has to become something our community no longer tolerates. People with disabilities need to inject themselves into discussions on every level: local, state, federal, and even internationally. We are the largest minority group in America – let’s start acting like it.
It is so important for us to be visible in the community. I like to think of being at work as an act of rebellion. You might wonder about that description… Just think about how many disabled people you see in your community – I mean, those of us who have serious challenges that impact our ability to be independent adults. I bet you don’t see them very often, do you? I know I don’t, and I look for them constantly because I am a striped unicorn surrounded by horses. I want to be part of a herd, any herd, but especially part of one that knows exactly what it’s like to be a unicorn. That feeling of belonging is the main force driving me onward and motivating me to try new and uncomfortable things. I want so desperately to belong to a group of people who, in turn, have my back. Not out of pity or because they get paid to care, but people who love me and value that which I have to offer. I bet that those of you here who have a disability feel the same.
I am so glad to be able to share my thoughts with you today and connect with other advocates around disability issues. Yes, I mean it when I say advocates. Because that is what you are when you live the life you want without apology. That is who you are when you are out in the world where your disability is on display, and you are totally fine with it. I have days when I wish I could blend into the herd and not be the most autistic person in the room. Totally normal, and with a girl by my side! Alas, that still hasn’t happened, but I am a patient guy.
It seems like I should be satisfied with what I already have, but I am not. I want to have what my peers take for granted: a good job and the white picket fence where my wife’s planted some beautiful flowers that we enjoy on the way to taking our kids to school. I am no different from you in my desire to be loved and offer love to someone else. I ask each of you here today to dream that dream for yourself or for the people you work with so that they may attain it someday. It is incredibly important to believe in the future of people with disabilities and that they be given a chance to have the very outcomes that we all desire.
I’d like to share a story about a time when I felt the normalcy of that dream. I was fifteen, and a lot of my fellow classmates had started experimenting with drugs and getting romantic with other students. I wanted so badly to experience both of those things, but also worried what pot would do to my autistic brain. I had a good friend who was also a bit of a troublemaker and smoked cigarettes at the time. We cut out of class a bit early to go to a nearby park and hang out. I felt so normal and accepted, which was foreign to me, actually, but I loved feeling like I was someone’s confidante. I loved it so much that when we finally returned to school, I told Stormy, my paraeducator, that I’d smoked cigarettes and not to tell my mom. Of course she did, and the blow up I was expecting never came. Instead, my mom was, bizarrely, excited and proud. She thought it was a great milestone of sorts! Like her, I was pleased to have a friend who accepted me for who I was and didn’t try to make me normal.
That’s how I feel about Trader Joe’s. They’ve known me for years and know I’m autistic, and hired me anyways. I believe I was hired because the company respects the diversity of its employees. They have taught me new skills while keeping in mind that I may need more time and different roles from other employees. The thing is, this approach works! After all, we are not robots, and possess different skills and interests. A business is smart if it recognizes that and plays to people’s strengths. Trader Joe’s definitely does that! On any given day, you’ll find me stocking orange juice or facing granola bars, two of my favorite activities. My team knows that as long as I can do these things, I am happy and willing to do almost anything else. For example, I really don’t care about the tea section, but if I had to, I would organize it so that I could do the orange juice. Again, it’s all about what motivates you to do your best.
Earlier this month, I learned an important lesson about flexibility. With it being the start of school, suddenly I could no longer work Tuesday and Thursday afternoons. There was a miscommunication with work, and when I showed up for work on Friday, I wasn’t on the schedule. They said I couldn’t clock in, and I lost my shit. With every cell in my body, I wanted to work, to return to the place that celebrated my consistency, especially after a long and hard week. And I couldn’t. For a while after that, my reaction was one of feeling like I’d done something wrong. And my mom put it this way: while it sucked, it also gave me the chance to experience when stuff like that happens, and in her work experience, it happened a lot. So now I will probably react less harshly when snafus occur, and will hopefully take them in stride.
So there you have it: the start of what will be a long and prosperous work experience. Charging forward is my modus operandi, and I will make my workplace a better place for autistics. Most importantly, I will change the tone of the conversation about the benefits of hiring people with disabilities. I was part of this conversation in the beginning as a marginal player – now it’s my turn to lead it forward and shape my future into what I want it to be. Please join me in making this possible by advocating for fair and appropriate jobs for everyone. Thank you.
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.
My favorite teacher was the person who taught me how to letterboard, Elizabeth Vosseller.* She is a speech pathologist who led a training in Seattle in 2013. She changed my life, as you can imagine! She was the first person who treated me like I was intelligent and capable of learning. Within ten minutes of working with her, I understood what she wanted me to do, and I was so excited to finally – FINALLY – be able to communicate that I would have done it all standing on one foot if she had asked me to.
Never underestimate the power a teacher’s determination can have on changing a person’s life! Reaching for new horizons is something we can all benefit from.
(* of Growing Kids Therapy Center in Herndon, VA)
I might not know how to do something, but that doesn’t mean I don’t want to do it. For example, I want to do the dishes, but I forget the steps. It would be great to have a visual example nearby so I can reference the steps on my own. I hate when someone gets impatient with the way I am doing it – I’m trying to remember! I have to mimic the right steps over and over in order to create that routine. Luckily in my job, there’s a lot of repetition.
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 like how I spend my free time. I come home from work or school, and after I go through my routine of putting away my lunch items, I go upstairs and cut paper. It’s the most relaxing activity I can think of. No one makes me stop or try something else. I might want to try something else some day, and hopefully I will get support for it should I need it. I feel lucky that I have a pretty busy life right now, and have little down time. Keeping myself busy with activities that feed different parts of my life it’s so important. School and work and the gym each feed a different need my brain and come together to make me feel complete. The only thing missing is a girlfriend.