American Action Fund for Blind Children and Adults
Future Reflections Convention 2016 NOPBC CONFERENCE
by Kim Cunningham
Introduction by Laura Bostick: Kim Cunningham is president of the National Organization of Parents of Blind Children (NOPBC). She has a great understanding of the program and a real-life appreciation of the theme of our conference, "Transitions: Where You Are, and Where You Want to Go." She has been leading us on the path of progress, and she has a remarkable vision of the future of the NOPBC.
Kim joined the NFB in 2007 after attending her first national convention. She has served on the board of the Texas Parents of Blind Children (TPOBC) for nine years, including serving as TPOBC president. Kim's husband, Bobby Cunningham, is a stalwart behind-the-scenes NOPBC supporter. You will meet him and come to know him as our official photographer.
I am humbled and honored to stand before you today as the president of the NOPBC. Thank you to all my Federation family members who have mentored me and my family on our journey.
Twenty-four years ago I heard the words, "Your daughter has a severe vision loss." Surely the doctors were talking to another family! I didn't sign up for this! I actually turned around to see if there were other people behind me--but no, the message was meant for me. The doctors were doing what they could, but nothing would slow the progression of the disease. In that moment I transitioned to become the parent of a blind child.
But actually I transitioned to become the parent of a legally blind, low vision, partially sighted child. Everyone seemed afraid to say the B word. The social worker at the hospital said to me, "Kim, you will need to advocate for your daughter. You will be her eyes."
I knew what the word advocate meant, but I had no idea how to do it. My head was reeling, and I had no idea what the social worker was talking about, but I nodded instead. Together we set up a support group for the NICU [neonatal intensive care unit] families. We talked about programs and organizations that could help babies and children with disabilities. We cried together and laughed together. Our group became a family, supporting each other through good times and bad.
But this wasn't enough. Soon I took my daughter home, and we transitioned to a family of five, with three kids--one of whom was legally blind, low vision, partially sighted--but not blind.
Then one day I had a meltdown. I cried to think of the hard life my precious daughter was going to live as a legally blind, low vision, partially sighted, not blind person. But I decided that was not going to happen on my watch! That day I transitioned into advocate-in-training--also known as Mama Bear! [Laughter] I promised my daughter I would do whatever I could to ensure that she had the tools to lead the best life to the best of her abilities.
The days grew into weeks and the weeks into months. I watched my little girl keep making progress developmentally. I saw more of what she could do than what she couldn't. I attended every conference, social event, and training I could find. I learned about IDEA, the Individuals with Disabilities Education Act. I learned about technology, and I met many families from across the US. I learned a lot of good things--informative, helpful things. But I also learned that the professionals made a huge distinction between being blind and being legally blind, low vision, partially sighted. If you had some vision, you were deemed a "visual learner." If you were blind, you were deemed a "Braille reader." I always thought it strange that professionals would force my daughter to use her weakest sense.
In my daughter's fourth-grade year, I began to notice how much trouble she had completing her work on time. It took forever for her to read visually, even with magnification. She was often told to sit and listen while the other students were engaged in fun activities.
Fast forward to the sixth grade, and I now transition to full-time advocate for my daughter. I quit my job and determined to be a constant pain until someone would listen to us. The school was going to follow the IEP and provide every accommodation listed! At this point I transitioned to the other B word. [Laughter]
I realized that the school was relying on the TVI (teacher of the visually impaired) to provide what my daughter needed. But the TVI didn't know what to do, because she was "emergency certified" and had no formal training! Our IEP meetings were mostly unproductive. The IEP team would look at me like deer in the headlights. Time was running out. We were more than halfway through my daughter's K-12 education. I was in panic mode.
During the summer of 2007 my daughter and I attended our first NFB convention in Atlanta. I had heard of the NFB, but I didn't think it was for our family. After all, my daughter wasn't blind. But nothing ventured, nothing gained--and off we went.
During almost every conference and training I had previously attended, I found there were only a few blind adults around. "Where are all the blind people?" I'd ask. "They have to be somewhere." Can you imagine my surprise when we walked into the hotel lobby on Day One of our first NFB convention! Jackpot! [Cheers] There were a few thousand blind people, all in one place! And they weren't moaning and groaning about their disability. Everyone was going about doing what we all do--attending meetings, eating dinner, and socializing with friends. Yes! This was what I had been searching for!
I was full of questions. How did these blind people reach this level of independence? How could I offer my daughter the same opportunities? Everywhere I went, people were tapping their canes.
During those first few days of convention, I attended as many workshops as I could. I heard Anil Lewis talk about high expectations for blind kids. I thought, Oh my goodness! Did he really say that? I'm not the only one? There are others who believe in my daughter's abilities?
I learned that Braille is a tool for all who have vision loss. Braille isn't reserved for the totally blind. I learned that most blind people have some vision, and that nonvisual skills would be crucial on my daughter's path to independence.
One speaker used this comparison: "When we meet a wheelchair user, we don't ask how much paralysis he has. Many of us know wheelchair users who aren't paralyzed. They still have the need to get around in an easier, less strenuous way. The same concept applies to people with vision loss. Braille and the cane are tools in your toolbox. You don't have to be totally blind to benefit from the use of these tools." Wow! These people really got it!
I learned about all the programs from the NFB training centers and our programs offered by the Jernigan Institute. I met Dr. Cary Supalo, a blind chemist. He had a grant to teach blind high school students to complete chemistry independently. He actually flew to my daughter's school, provided her with the equipment she needed, and instructed her classroom teacher on teaching chemistry to blind students.
I also met many blind college students who gave us advice on attending college as a blind student. They told us about rehabilitation centers such as the Louisiana Center for the Blind, the Colorado Center for the Blind, and BLIND Inc., where my daughter could learn the skills that blind people need to live bold, independent lives.
No one cared that my daughter had some vision. The skills of blindness would allow her to live the life she wanted. My belief in the message was so strong that I knew I had to share my knowledge with other families. Soon after I left the NFB convention, I joined the Texas Parents of Blind Children. I wanted to be the messenger of hope, not despair. So I transitioned to a board member, and a few years later I became president of Texas Parents of Blind Children.
Today I stand before you as the formerly lost mother who has transitioned into a strong advocate for all families of blind children. This past year I was appointed president of the NOPBC. I am now surrounded by other families who are equally as devoted to all families of blind children across the United States. I now embrace the B words, blind and Braille.
I will forever be grateful for all the words of wisdom I received from the NFB. I followed the Federation's advice. This past December my daughter graduated from college with a degree in elementary education. [Applause]
If you find that your story is similar to mine, I want to offer you words of encouragement to find your voice and advocate for your child. I hope you all transition to become families with high expectations. I pray you find that this week offers not only a convention, but a family you can be a part of. We are all dedicated to changing lives. Together we can change what it means to be blind.