The First Memory That Made Me a Disability Advocate
“Why would someone, who is not disabled, become a disability advocate?”
— this is the unasked question I see in some people’s eyes when I talk about Accessibility.
I tell you why.
People with disabilities are quite busy with their everyday lives alone. It includes barriers that the majority of us wouldn’t think about. Even basic tasks might turn into a challenge, like taking notes at school, watching a movie online, fill in a mandatory form, order a pizza, or buy a ticket for public transport.
These shouldn’t be difficult situations, but they are for some. I saw these challenges and I chose to join the squad and be a Voice. I found it unfair that those who already deal with barriers on daily basis, are the only people who are expected to speak up and advocate for themselves.
There are so many stories that led me here, and I’d love to share more about the moments that made me to be a Disability and Accessibility Advocate.
It was the very first music theory session of our freshman year in Conservatory.
I was one of the nerdy younglings sitting in a room quietly, not knowing others yet, waiting for the teacher. We were in an almost complete silence, staring at our exercise books, doodling, or taking advantage of time and getting prepared for other classes. (Yeah, one of those weird moments when shy musicians still don’t know each other…)
The room was filled with those oldschool, russian-style tables and chairs, enough maybe to seat 20 people, that hardly left any free space to move around.
The class should have started a couple of minutes ago. I heard some rhytmic noise coming from the hallway, like someone was hitting the wall with a piece of plastic in rythm. The noise came closer, it sounded like one of the drummer kids passing by while casually rehearsing for their class on the wall. Nothing special for a conservatory. But then, the same noise didn’t pass, but started knocking on the door, and now I heard it from inside of the room. Then it stopped.
- “Is this music theory class, first year?”
- “Yep, this is it.” —answered someone helpfully.
We turned our heads to check who was it. It was supposed to be a short look, but then, it turned into a kind of group-stare:
The guy who entered, used a white cane.
The guy —Tom by his name— entered the room and tried to find a seat, continuing to use his cane, orientating himself to the back of the room. “Knock-knock-knock-knock”- we heard the noise again as he was slightly touching the objects around, so he could find a way ahead.
The whole group was staring at him in silence for some heavy seconds. Apparently, we found it hard to process that a person who is blind, is moving around by himself, right there in our building. Maybe this sounds weird, but we had almost zero inclusion in education back in time — this was indeed a unique thing to happen.
So, Tom was trying to find a seat.
He didn’t really ask for help for two reasons: he was a bit shy and also he wanted to show us that he was capable of doing things by himself. He was thumbling in those old, russian-style school chairs, while the rest of us were sitting frozen and looking at him as he tried to get in. We were SOOO clueless about the whole situation. Finally, one guy saved the day, asked him if he needed help to find a seat, and walked him to the closest empty chair, while another classmate moved one chair in, so he could sit closer to the door.
When he sat down, the teacher also came in.
He explained what the class was about, summarized the main topics and rules, and we jumped right in the middle of theory with him instructing us to open our books and to take notes.
We heard the sound of a big metal object puffing on a desk, then loud typing.
Tom started to use a Braille typewriter.
We turned our heads like a group of meerkats. It was noisy! Also, we had never seen “that thing” in our lives. Luckily and intelligently enough, most of us quickly accepted the fact: this is the way he could take notes, and we were okay with that. It’s normal, he has to study later somehow…
“I can’t hear the teacher” — commented someone suddenly.
“Gosh, are you serious?”— I was screaming inside to that insensitive kid. I didn’t say it out loud, unfortunately, and nobody else did. I had no words back then — and honestly, I still feel bad about that.
And because of that comment, Tom stopped typing. I guess he started to memorize the class materials.
He was was told million times that he is the one who has to adapt — so he voluntarily gave up on something that was a necessity for him, just to make things more convenient for the majority with no barriers around.
We finished the class, and I felt that something was really off that day. I found deep simpathy towards Tom for being considerate. Also I felt a serious amount of anxiety about the comment of that guy, and the silence of the teacher, the class and myself… “why didn’t we speak up for him?”
One week passed, and Tom came to class with a more silent and simple tool: a tiny plastic Braille frame.
This tool — as he explained — helped him to hold the sheet of paper and worked as a guide to add holes in Braille with a sharp tool. He said that today he preferred to bring this one instead of the typewriter, so he wouldn’t disturb people anymore.
I understood only later that the typewriter was way easier for him to use, still, he chose to switch to this one. He did the favor to the group — the group who basically had zero difficulties with accessing the class materials.
But that’s how it was. And the year went on.
One day when we met earlier before class, we started to chat about the instruments we played.
Tom told me about the harp, how he practiced and memorized music without written music sheets, based on listening to the pieces multiple times on a vinyl player he had at home.
When it was my turn to talk about my instrument, the oboe, I became a bit confused. The first things that came to my head for the description were the colors and shapes: the ebony of the wooden body, the silver of the buttons, the lengthy shape of a wind instrument and the lightwight brown color of the mouthpiece.
“Am I supposed to use the color names at all? How should I describe something for him, with attributes he have never seen? — that was my huge concern inside.
But he solved my problem by asking me:
“Can I see the oboe? Do you have it with you? I have never seen one before.”
It was so helpful. It turned out that I’m not just allowed to use the words “see” in his presence, but it is a normal thing even for him to say.
People who are blind also use the words “see, watch, look” — the only difference is in the way of their perception, which goes through their hands or through verbal description.
“Sure!” — I said and I put the open instrument case into his lap with the pieces inside, so he could take them out easily and examine them by touch. He was checking every single detail carefully, I also explained to him how to put it together, how to hold, and how the keys and the reed work.
Long time, decades passed since then.
We grew up, he skipped music but he became a dancer, a world traveler, a sensitivity workshop-leader.
Our frendship still keeps up until nowdays, we catch up every once in a while on phone, sometimes we bump into each other on the subway or on the tram, or have a coffee together somewhere.
During all these years I learned some things that now sound so obvious, but I had to experience them by myself as nobody ever explained:
- when I meet someone who is blind, I’m the one who has to go to him and say hi, and also I should say my name - I can’t expect anyone to recognize me only by voice in a noisy environment;
- it doesn’t make sense to ask him of the whereabouts of the lightswitch, even if he is familiar with the place (thanks to God, he has a good sense of humor);
- instead of offering to lend a good book, I should offer my free time to read it to him, or I should simply download it for him as an audiobook;
- I have to take lead when I want to shake hands, or toast with glasses of drinks.
Some time ago when we met, we talked about old times, and it seems that even 20 years later, he still remembers dearly the day when we talked about musical instruments.
Luckily, the memory someone being supportive, remained stronger than an insensitve comment.
This was one of the core memories also for me, that lead me to be more conscious about untold difficulties of people around me. But no, this was still not that top moment when I became a Disability Advocate.
We will arrive to that too, soon.
