FOURTH NEW YORK CITYWIDE SPECIAL EDUCATION CONFERENCE 2015 Student Panel Discusses Personal Tragedies and Courage By Karen Kraskow
Listening to people talk about their experience with disability often gives us an opportunity to reflect on our own lives. So when Dr. Pola Rosen asked a group of 11-23 year olds “What was the most difficult situation you ever had to go through?” anyone in the audience could take that opportunity to reflect on their own lives. Use this reading to do the same, if you like. Because these leaders–yes, they lead us to push forward in our own lives despite whatever difficulty we see in them– they inspire by their example.
Abigail Lanier, the first speaker on the panel at the recent NYC Citywide Special Ed Conference at Weill Cornell Medical College, entitled Courage and Perseverance Panel told us she was diagnosed with retinitis pigmentosa at the age of 4, which caused her to lose sight gradually. Fortunately she was born into a family where her mother was a sign language interpreter and had a background in deaf education. When in 2013 she was diagnosed with Hodgkin’s lymphoma, she found that the endurance she mustered due to blindness served her well in the path to remission, which she has now achieved. She is currently an audio engineer at Visionary Media, working with artists and musicians with blindness. When asked the second question of the panel, “Where have you found the resources within?” Abigail commented: “I can see here –the support of teachers, and people that are in science, that everyone wants for children and adults with disabilities to live the same fulfilling lives that able-bodied people do.” She is also a freelance audio engineer.
Juan Carlos Reyes, introduced himself as a “Bronx native.” The environment of his initial large school: the line to get inside “winds around the block;” you “go through a metal detector,” then bump into fights within the hallways, segregation by ethnic groups, floors that were controlled by different gangs and sit in a class with 40 kids. A “not-so-focused” student “in my earlier high school years,” he was fortunate to transfer to The Heritage School and eventually (after a masters degree from Teachers College), transitioned to having a career in education, and is currently working for the College Board. Regarding the “resources within,” he commented, this “complete turnaround” … “was made possible by a community … a group of teachers and principals and mentors … who believed in my ability to not only graduate from high school but (to) pursue … higher education and a career.” “Every student deserves the opportunity to go to college;” and “we have the responsibility to prepare every student … and to show them that we believe that they can make it.” ‘I feel it’s my responsibility to pay for my good fortune.” He left us with the message: “I think we need to pay attention to how we train the adults that interact with students - we train the teachers and the principals, but not all the staff in the building are trained to be with students and with the social emotional issues that come with being raised in marginalized neighborhoods.”
For William Vladimir Grace, “the most difficult thing I’ve ever done was … when I was diagnosed as having dyslexia. Every single day when all the kids would go to English class, I would have to go and have a special tutor. … I didn’t know what was wrong with me…. I thought that I was stupid. I thought that something was off.” Then “I went into Windward. Going to Windward really changed my life. It showed me that ‘Yes, I might have a learning disability’ but it doesn’t mean that I’m stupid…. It means that I just take more time to read.” He found that he excelled in other things, like math and science. “So even though it was a tough point in my life, going to Windward brought that whole tough part of my life around, and showed that I can really succeed in life,” he said. When asked “How did you do it? Will answered in one word: Perseverance. It reminded him of his childhood: “When me and my friends would get into play fights, I would always get back up - if I fell down, I would get back up.”
For Molly Roberts, the “hardest part” was “being diagnosed with Crohn’s disease when I was 11,” a 6th grader. “I didn’t know what was wrong … I was tired, I had weight loss … stomach pain. I had to go through a series of tests… and they figured out that I had Crohn’s disease,” and what medication would help. “It took a while to become perfectly healthy and feel like nothing was wrong. A year later, I underwent emergency surgery - getting that surgery was the best possible thing for me, because now I feel great. My resources? …I took all my energy and I put that into helping others. I realized that it was more important to help others (who) have gone through the same thing …, who are still going through it…. To this end, “I created a jewelry company, “Jewelry by Molly Roberts.” and I donate all the proceeds to the Crohn’s and Colitis Foundation and to my research fund at Mt. Sinai Hospital.” I also love to sing and play guitar, …Throughout all of this I always kept performing and singing. The profits from my song “Champion”, that I wrote about Crohn’s disease also go to these foundations. “So that’s really how I’ve overcome obstacles.”
Helena Rubin, 11, calmly recounted that “the hardest thing for me was probably when I was first diagnosed with diabetes …. I didn’t know what it meant … or how it would affect my life. I used to have to take insulin injections almost 60 times a week; now I just have an insulin pump every other day … it’s so much easier. My family now participates in the yearly walk for the Juvenile Diabetes Research Foundation (JDRF), she recounted, and I bake cookies and desserts, including the French Macaroons that were served in the bento boxes for lunch at the Special Ed Conference. “I bake for the awareness of JDRF.”
So when you think of ‘the most difficult situation …” let these young people inspire you to … remember the hurdles … and how they garnered their resources within to surmount them. We don’t often hear the kind of honesty and calm recounting of challenges that these teens and adults shared with us. Their example is a form of leadership.