Future Reflections Special Issue, Extracurricular Activities ADVOCACY
by Nelly Gamino and Alex Gamino
From the Editor: At the 2014 Convention of the NFB of Illinois (NFBI), Nelly Gamino and her almost thirteen-year-old son, Alex, gave a presentation about a recent experience. Alex had been subjected to discriminatory treatment due to his blindness, and the Gaminos had turned to the NFB for advocacy. Here is the speech they delivered at the NFBI banquet.
NELLY GAMINO: I have to start by saying that last night I almost cried when Alex started singing at the talent show. I was not prepared for the deep voice! I hear him speak every day, and I guess I got used to the tone, but singing? Well, that was different! And speaking of his voice changing, that change is what brought on our first real experience of discrimination.
I guess we have been very lucky. For more than twelve years we have found people who looked past Alex's visual impairment and treated him just like any other child. In fact, our experience has been so positive that at first it was even hard for me to identify what occurred with Alex's choir as discrimination.
ALEX GAMINO: I was in the choir for four years, and I enjoyed those four years very much. But then my voice got lower and my director said it was time for me to move up to DiMension Choir, a group specifically for boys in that age range when their voices are changing. My director submitted my name for the auditions. The problem was that the director of the DiMension group did not think I would be a suitable performer because of my vision.
NELLY: A few days before the audition, I got a phone call from the choir director Alex had worked with. She said they wanted to talk to me about some "safety concerns." She asked if we should talk at that moment, or did I want my husband to be present? Obviously I said I wanted all of us to be present, including Alex, as he was the one who would have to follow the safety rules. So we set up an in-person meeting.
The director and the manager started the conversation by telling us how much they loved Alex, how much they had enjoyed having him in the choir for four years, and how well he had been doing so far. But . . . yes, there was the but. But were we aware of how much more challenging the next level was going to be? Had we seen some of that choir's performances? For example, the most recent performance involved singers running down the aisle of the Harris Theater in the dark to get on and off the stage quickly. The manager proceeded to show us a videoclip of it on her phone (yes, she was prepared!) She continued by telling us that the expectations were much higher, not only in singing but in choreography. Choir members had to be able to get themselves on and off the stage safely and independently. Alex might have to sit out of certain performances that would be too hard for him, and they didn't want him to feel excluded.
My husband and I explained our vision for our son, how we expect just as much of him as we expect of our other son who is fully sighted. We said that we don't keep Alex in a bubble. He has learned to ride a bike and to swim, and he has tried roller skating, ice skating, and gymnastics. What happened when he fell while doing those activities? Well, he was expected to get up, dust himself off, and keep going, just like our other son. No, we said, we had no concerns. Yes, we felt that Alex was up to the challenge of higher expectations. Hadn't he proved to them in the past four years that he could function quite independently? He had traveled with the choir to Wisconsin, Nashville, and Kansas City, for entire weekends each time. Never once did they have a complaint about him. Never once did they have to do anything extra in order for him to participate.
We brought up many examples of visually impaired performers. We suggested ideas for how they could accommodate Alex. Nevertheless, we were told to think about it. Did we really want to put Alex through an experience where he might often have to sit out?
We asked to speak in person to the director of the new choir to better understand her concerns and to help her think of ways to accommodate Alex. The choir manager said they would get back to us with a time that worked, but we didn't hear back.
ALEX: In the meantime, my parents sat down with me and basically laid it out. "Alex," they said, "do you want to continue in choir? If you do, we will do whatever it takes to ensure you get the opportunity, but know that you will have to work extra hard to just be seen as equal to the other kids." To be frank, I was already wondering about continuing in choir myself, even before all this came up. I mean, I love music, but going from school in Villa Park to Chicago for choir practice, and then traveling back to Berwyn where I live, was pretty tiring. I was getting more and more homework since I was in middle school. But now I wanted to do choir, if nothing else, at least to prove that I could do it.
NELLY: I followed up with an email, and we were told the DiMensions director would talk to us on the day of the audition. That day we waited for three hours. Alex's name was called, and he went in to audition, but the director never came out to talk to us. We were told things were really hectic and that we would talk during the week.
ALEX: When I went in for the audition, I was very nervous. After all the debating, I wanted to prove myself worthy. When I went in, I saw quite a few others there. I was even more nervous now, because I saw that I had competition. I waited a while, and they finally called me and some others to go in. I hadn't realized that multiple people went in at the same time, but I was like, "Why not?" As we went in and sat down, we were instructed to take turns singing "The Star-Spangled Banner." We each took turns singing a line, and then we sang small parts in small groups. Finally it was over, and I left.
NELLY: A couple of weeks went by, and we still had not heard back, not even about the results of the audition. One day, as I dropped off Alex at the BELL program in Chicago, I ran into Debbie Stein. In passing I mentioned what we were going through. She immediately said, "Let us know if you need our help. We will be more than happy to attend a meeting with you."
That same night Debbie copied me on an email that she sent to the NFBI president, Patti Chang, informing her of the situation. Immediately Patti said, "We will educate them. We are with you."
I followed up again, and I finally got a call back from the same person with whom we had had the first conversation. She called to inform us that the director did not feel Alex would fit into the new group. Furthermore, because his voice was changing, he couldn't stay in his old group, either. She went on to say that it would be best if we found a choir that focused less on performance and show, as Alex definitely had vocal talent. They were on the way to South Africa, but if we wanted to speak in person and discuss in more detail they would be more than happy to do so when they returned.
We sure did want to meet in person! And this time we would bring a member of the National Federation of the Blind with us!
I set up the meeting and informed them that someone from NFB would join us to help address their concerns about a blind person's ability. They did not take the news very well. They said they would be more than happy to speak with an NFB representative at another time to discuss accommodations they might make for blind members someday in the future. Nope, Debbie Stein was going to be right there with me, whether they liked it or not. And I showed up there with my guest.
Somewhere between my notifying them about my additional guest and the actual meeting date, their tune started to change. Sure, they still brought up some safety concerns that Debbie and I were able to address immediately. This was my favorite: "What if Alex falls and breaks his arm while he's getting off the bleachers?" Debbie responded, "I'm sure an organization as large as this, that even takes kids on trips out of state, has insurance to cover accidents." The meeting ended with the choir directors acknowledging the fact that Alex was talented enough to be part of this choir. If we were okay with the expectations they described, they would email us the registration link.
ALEX: My experience with the choir was challenging, not because of my vision, but because of the assumptions the adults made about my abilities based on my vision. Or lack of. The director assumed that since I am visually impaired, I would not perform as well as the sighted kids. Normally I try not to get offended with people's assumptions; I just try to educate them about my abilities. But I was honestly disappointed that, after being part of this group for four years, they would try to discourage me from joining DiMension just because of my sight.
In the end, due to schedule conflicts with school, I was not able to join DiMensions after all. But it felt good to fight back and get the opportunity to take part. I just wanted the same chance as everyone else.