A Voice for Our Children

A Voice for Our Children

American Action Fund for Blind Children and Adults
Future Reflections Winter 2016 PROGRAMS
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A Voice for Our Children
by Christina Kuckie-Roberts
From the Editor: At the end of January each year, Federationists from all over the country arrive in the nation's capital to take part in the annual Washington Seminar. They visit the offices of legislators, seeking their support on issues of concern to the blind community. At the 2015 convention of the NFB of Illinois, Christina Kuckie-Roberts spoke about her experiences attending Washington Seminar for the first time as part of the Parent Leadership Program (PLP) sponsored by the National Organization of Parents of Blind Children (NOPBC).
Good evening. My name is Christina Kuckie-Roberts. I have four children. My oldest, Christopher, has been blind since birth. He also has autistic tendencies and related behavioral issues.
I've been involved with the NFB ever since Christopher was asked to speak at the [Illinois] state convention about his experience in the BELL Program three years ago. My weekend at convention opened my eyes to the vast possibilities that are out there through technology and other resources. Most of all, I realized how much I didn't know.

Last fall I received a phone call from our state president, Denise Avant, asking if I would be willing to participate in Washington Seminar. My first thoughts were, Attend a convention and learn more things? Awesome! Sleep in a bed all by myself, with no children and no dogs? Double bonus! I had no idea what I was in for!
A few emails went back and forth, and the Illinois team had a kickoff call. It was at that point that I began to panic. I felt completely unprepared. Previously I hadn't concerned myself with getting to know my representative in Congress. I hadn't thought there were issues that concerned me on the table. Boy, was I mistaken! I learned on the call that we were going to request our representatives to vote on legislation that would affect our blind community. I thought, What? There is legislation out there that affects my child? Time to start studying!
I followed the links that the NFB provided, but still I felt a little lost. I Googled each item and was happy to find some firsthand accounts of how the issues affected individuals. Okay, I was ready to prepare my speeches!
However, the harder I tried to write, the more I found that I still had questions. At the airport awaiting my flight, I still worried that I was going to make some disastrous mistake at my first Congressional meeting.
When I arrived in Washington, DC, I met my roommate, Jennifer Duffell-Hoffman. Jennifer is from South Carolina and has two sons with progressive vision loss. She is a veteran of Washington Seminar. In our first hours getting to know each other, I told her how completely unprepared I felt. She tried to put me at ease, and she held my hand as we started off to our parents' seminar.
Arranged through the Parent Leadership Program (PLP), the parents' seminar was educational and inspiring. I was able to meet and ask questions of NFB members to prepare myself better for my upcoming meetings with the legislators. More importantly, I met parents who were pioneers for equality in their states. For example, I met two women who fought their state because of the lack of services provided for blind children. They actually had to leave the parents' seminar early, as their legislation was being voted on at the state level. When they began their work, these two women did not yet have an NFB parents' group in their state. They are now the founding members of their state's parents' chapter. That is just one story of the inspiring people I met. All of the parents I met were inspiring for what they are doing within their states, often with very little local support.
As some of you know, I am blessed with the services Christopher has received from the Naperville [Illinois] school district since he was seven years old. We receive unlimited support from the team that works with him. His team includes everyone, quite literally, from the janitor to the principal, the retired husband of a teacher, and the band director. I often feel guilty because my son is blessed with unlimited support from his school district and its staff, while so many other children have so little. My son uses an iPad, an iPod, a refreshable Braille display, and more, yet another NFB of Illinois mom had to fight to have a Braille sign installed on the door of her child's school bathroom.
The more parents I meet at seminars or on our Facebook groups, the more I feel that we have no idea what services our children need, much less how to obtain them. Compound our lack of knowledge with a school district that is underfunded, or worse still, with a caseworker or teacher of the visually impaired who is undereducated! The NFB has brought us together to help each other along this journey.
Before I attended Washington Seminar, I thought the most I could do was to tell other parents exactly what services my son receives and urge them to push their school districts to provide their children with the same. At Washington Seminar I had a voice to speak for our children's futures. At my first few meetings on Capitol Hill, I did my best to give a short personal description of my family and why I was there. Then I would lay out the facts as I had memorized them. As the days passed, my team members and I altered our conversations with the legislators to include things we learned from each other. I was definitely feeling comfortable with the issues.
The meetings were becoming a bit routine--until my final one.
We were talking with a particularly condescending congressman regarding HR188, the TIME act, which would ensure that workers with disabilities are paid the minimum wage. Teammate Annette Grove took the lead during this meeting, and the congressman clearly didn't agree with us. At one point, in order to defend his position, he used an example, speaking disparagingly of a group of "disabled" people who dismantle hard drives. For me, his comments became a personal attack on my child.
"I'm sorry, but I work for a leading investment firm," I told him. "We pay our IT employees full salary to dismantle hard drives. Are you telling me that, even though my child has the ability to dismantle the hard drives, he doesn't deserve to be paid the same salary because he is disabled?" At that point, he stuttered over his words.
I walked out of that room furious! In that moment, I understood what this was all about.
That is what I learned from the Washington Seminar itself. Now let me tell you what I learned from the people I had the opportunity to be with through that week. As most parents know, we do our best to teach our children how to function. As a parent of sighted children, there is a lot I take for granted. Without being formally taught, children learn to pour a cup of water, to press the buttons in an elevator, or to find the pool at a hotel. Spending the week in a hotel full of Federationists taught me how to be a better parent to Christopher. My new friends from the Illinois affiliate were quick to let me know when I was being too helpful. I was able to discuss openly with them how to know when to help and when to be patient. I learned that it was okay to let Christopher bump into someone; it happens.
At dinner, I learned to ask for the waiter to read the menu aloud if a Braille menu is unavailable. I learned to listen for the dings of the elevator to indicate whether it is going up or down. While riding the elevator, I learned that Christopher can tell which floor he is on by counting the dings. If he loses count, there is usually a floor plaque with a Braille number to read when the door opens.
I learned that Federationists from every state are a great educational resource for me and for Christopher. They are willing to help me guide Christopher as he learns how to navigate the world. They are our friends.
Thank you.

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