I'm not speaking to you
Was there ever a time when you weren’t speaking to someone and pretended they weren’t there? You would ask someone else to relay the message but not actually talk to the person, even though they were right next to you?
That happens to me on a daily basis. People talk to whoever is with me about me but usually not to me even if I answer them. They just ask questions about me through my assistant. Some people don’t know me or my capabilities but instead of assuming I can communicate, they assume I cannot.
Many times, I have had people talk to the person whoever I’m with or they talk around me instead of talking directly to me. This is especially when I am ordering something like coffee or a sandwich. I will tell them what I want and then they will look at my assistant and wait for her response. This makes me feel like I am not even there or that I am some sort of inanimate object like a tree, that cannot respond or engage with people at all. Sometimes it makes me feel invisible even though I am there.
I'm blind, not deaf!
Although I can laugh about it now, I remember a time when I was in high school, I was in the elevator changing classes with my aide. We were as always chatting it up. Another person got on the elevator. She commented to my aide about how beautiful my hair was. Except for the gray hair lol it was beautiful.
I said, “Thank you.” This startled the person and she said “Wow, she actually talks?”. I thought that was a strange comment since I had seen this woman before in the hallways. As she got off the elevator I felt like shouting but said quietly, to my aide, “ I'm blind, not deaf.” We both burst out laughing and it changed my mood immediately.
Not so fun summer internship
Another time I’ll never forget was when I worked an internship one summer for the Independent Living Center in Rockland County. For those of you who don't know Independent Living Centers are supposed to provide services that assist people with disabilities to live fully integrated and self-directed lives. They assist with all aspects of living, learning, and earning.
They are supposed to promote independence
They are private, not-for-profit organizations, that are supposed to be run by a majority of people with disabilities and staffed primarily by people with disabilities. They are service and advocacy centers that do not run residential programs or operate in places where people live. The philosophy of independent living is to maximize opportunities for choices and growth through peer-driven support and self-help. They are supposed to be the voice of people with disabilities and the disability rights movement in local communities across New York State. I say supposed to because this one clearly wasn't.
Just tell me what to do
This was my job, I was the employee. I attended all the meetings and interviews to get the job. The staff at the Independent Living Center would tell my aid what they wanted me to do. They would not tell me what they wanted or how I was supposed to complete the task. When I would ask they would look at me as though I was a tree with fall leaves. Something to look at but not talk to. This was my first work experience and they knew it. On my first day, I was trying to explain my disability and the type of accommodations that I would need. No one would listen. They were just talking to my aid the whole time, and even though I was the one explaining it, they would direct their answers or any questions they had to her and not me. This was especially disheartening since this agency’s purpose is to foster the independence of the disabled.
Hold it up so I can see it
I was tasked with making a flier for a backpack campaign. This is no easy task for a blind person, let alone someone who has never had a job before. I knew it was going to be a challenge but not like this. I had to make a flier for a backpack fundraiser. I discussed with my job coach the wording and types of pictures which should be included on the flyer. My job coach located all the pictures and placed the wording on the flyer. She then put the piece of paper down flat in front of me and said “ What do you think of this Allison?”. That prompted me to ask if she could hold it up in front of me because I couldn’t see the flier. She looked right at my aide and said “sure” but instead of picking the flier up to show me, she just moved it forward a little on the desk to show the aide.
She was asking my aide her opinion
Why was she showing her and not holding it up as I had asked? I asked her to hold it up in front of me several times. I asked her to describe it to me, but she kept showing it to my aide. My aide at the time was just there for my physical needs, she had no opinion or response. She was not my advocate or voice she was my assistant.
Busy work
Since the visual thing wasn’t working they decided to have me call different agencies, bus companies, and general emergency providers to ask what services they provided and did they want to be included in this resource guide they were preparing. This was great, I could do this, I prepared and got approved a standard statement to ask each person.
There was only one problem. After the first few calls, I started getting someone's voicemail. I hadn't thought of that. I asked my supervisor what phone number I should use for callbacks. They told me to give these companies my cell phone number! I knew this was not a good idea as I only worked 3 days a week and it was my phone. How would these companies know I was legit if when they called back they got my voicemail? "Hey, this is Allie leave me a message". Real professional huh? I came to find out that they already had this resource guide, it was just busy work.
Talk to me, I am not a tree
I understand people mean well and are trying, but if I answer, talk to me! If you ask me a question or if I give you the answer, Please be so kind as to Talk to me, I am not a tree. If you don’t understand me, I will gladly repeat what I said, that is within reason. But please don’t expect my aide to talk for me. I have worked really hard to be able to not only be understood but to talk in the first place. I may not be able to see you, but because of that, my other senses are heightened and when you do talk to me, don’t talk to me like I'm five years old and make me feel like a baby, talk to me like you would any other twenty-five-year-old adult. Ask me if I saw the latest trend on TikTok or what I think of Taylor Swift's new album.
Thank you for reading until the end!
This is the view from my wheelchair, where miracles can make a difference. Always Strive for the Impossible. Come back next week to see if you are one of THOSE providers and hear more about my experiences and The View From My Wheelchair.