by Marianne Dunn
From the Editor: Marianne Dunn is the parent of a blind child who wrote to thank the National Federation of the Blind for the work we are doing for her blind daughter and for all who are blind. Not only is her article a wonderful testament to what we try to do, but it captures the spirit of giving that is necessary for us to continue to grow, both individually and organizationally. Here is what she says:
I am the parent of twin teenagers who are blind due to retinopathy of prematurity. Elizabeth and Michael are now fifteen years old, and each has had the opportunity to attend programs at the Jernigan Institute over the past year. Most recently Elizabeth, who likes to be called Lizzie, has participated in the Braille Readers Are Leaders Community Service Award competition, which recognizes the use of Braille in community service. Regardless of whether she receives this honor, she has been a winner many times over in ways far more important than she or I could have imagined. As a result Lizzie and I have both felt compelled to write about this experience from our positions as parent and contestant. We’ve chosen the title “The Gift of Giving,” to convey our personal experience of what we have come to learn is one of the key tenets of the NFB’s mission in advancing the capabilities of blind people and in correcting misconceptions about blindness.
By way of background, we are relative newcomers to the NFB. I had heard of the organization growing up because it was one that my parents supported as veterans of WWII, aware of soldiers returning home with blindness. It was also familiar because I grew up in a Baltimore suburb before my family relocated to Michigan. Though it’s fascinating to observe the way life builds connections for us, I could never have predicted that blindness or the NFB would come to factor so significantly in my life or the lives of my children.
My awareness of the NFB remained fairly remote when my children were young. In Michigan we are fortunate to have two groups that support parents of blind children: POBC and MPVI or Michigan Parents of Children with Visual Impairment. For a variety of reasons my primary affiliation as a parent of blind children has been with MPVI though we have attended a few NFB of Michigan state conventions over the years and have enjoyed many friendships with adult Federationists.
Though membership in the NFB was years off, the Federation spirit was beginning to be formed quite early for Lizzie and Michael. As preschoolers they joined me, along with Michigan Federationists like Fred and Mary Wurtzel, to protest at Michigan State University in an effort to reverse the school’s decision to close its premier training program for teachers of the visually impaired. Michael and Lizzie, huddled together in their Burley stroller, could be heard shouting, “We’ve got Braille; we need teachers!”
While I consider myself fortunate in the support I found through my affiliation with MPVI, as my children have grown, the focus has shifted appropriately from my needs as their parent to their own needs in becoming stronger self-advocates and independent young adults. They now assume more of the decisions for the paths their lives will take and for the identity they wish to form as members of the community of blind adults.
Enter the NFB. Lizzie attended the LAW [Leadership and Advocacy in Washington] Program last April, returning home more inspired than ever to champion the cause of those facing unfair treatment or prejudice. She had taken part in the Michigan Youth in Government program, but the opportunity to advocate at the national level was a thrill for her. We are strong social justice advocates, and her participation at LAW reinforced this. Michael attended the Computer Science Academy last October and was struck by the personal interest that both President Maurer and Mark Riccobono conveyed to him and other attendees in ensuring that the goals of the Federation apply in a direct way to them as blind youth. It is evident that the Federation’s goals of self-determination and advocacy are becoming more fully integrated for them both.
Lizzie and Michael attend East Grand Rapids High School, which ranks consistently among the top performing schools in the nation. This coming fall every student will be using a digital device such as a laptop, iPad, etc., in class to augment instruction. Both Lizzie and Michael had questions for their principal regarding the accessibility of the instructional sites that will be used in the classroom. They have decided to draft a letter to each member of our school board and send it along with a copy of the joint letter from the Departments of Justice and Education, (DCL, 2010), requiring that technology be accessible in K-12 as well as postsecondary education. It was through the NFB that we learned about this communiqué, and we received a copy of it from Jernigan Institute Director of Education Natalie Shaheen. Lizzie and Michael will follow up their letter with a presentation to the school board to ensure that members are apprised of existing law as it relates to technology and web-instruction at East Grand Rapids. It is exciting for a parent to witness such self-advocacy. However, I’m not certain that Michael and Lizzie would feel as empowered as they do regarding their plan had they not attended programs at the NFB and experienced first-hand the value the organization places on them as young blind adults deserving of equality in all aspects of life, but especially in their education.
When we learned of the Community Service portion of the BRAL [Braille Readers Are Leaders] Contest last fall, Lizzie decided to enter and share some of the ways she engages in service activities, given that service to others through church and community affiliations has always been a priority for our family. The idea of focusing on the use of Braille in these activities was exciting to Lizzie. She and her twin brother are musicians (Lizzie a pianist/composer and Michael a pianist/bagpiper), so they have performed at countless fundraising events over the years, making in-kind donations of their time and talent. The difference I have observed for Lizzie as a result of the BRAL Contest is that she has acquired a new way of looking at these and other acts of service in which she engages. She felt empowered for example, by demonstrating her proficiency with the Braille Music Code to stunned observers, who were clearly impressed by the fact that the blind community has developed its own methods of recording and performing music. As a lector in our church, both she and fellow parishioners gained greater appreciation for the importance of Braille in allowing her to participate more fully by reading scripture from the display on her BrailleNote Apex. A subtle but profound shift in her identity as a young blind woman has been taking place.
Lizzie also served as statistician for her high school girls field hockey team last fall. She used Braille to record all manner of statistics, relayed to her by team members from the bench. Compiling and organizing these data, she then emailed to her coaches a more complete set of game statistics than they ever expected to receive. Team spirit and unity were strengthened as players relayed to Lizzie the action on the field, and a new appreciation for the commonalities between them sprouted. As we all know, one of the most powerful ways to break down barriers of misunderstanding is to experience how similar we are to someone we previously thought of as different.
All of these I consider to be gifts of giving. However, they pale in comparison to the experience for Lizzie of receiving letters from the six different adults who observed or recorded her acts of community service. The Contest requires letters to be submitted by individuals familiar with the community service activity of the contestant. One by one, as these letters of recommendation were received and read, Lizzie felt proud of course, but, more noteworthy, she learned of the significant impact her efforts had had on others and the extent to which these were noted and valued. The contributions she had made became much more tangible and real because of the words of praise and appreciation those letters contained. I observed a shift in the way she viewed herself and what she has to offer to those around her. She has written of the experience and hopes to share with others.
For my part, I am writing to convey the perspective of the parent of blind children and the gratitude I feel for the ways that the NFB lives out its commitment to our blind youth, making gifts to our children of their own time, talent, and treasure, ensuring that a better world and better life lie before them. Through this experience of the BRAL Community Service Award competition, I have come to appreciate more fully how the act of service and the giving of one’s self is particularly empowering for the individuals, such as blind people, who are often perceived by society as requiring aid, assistance, even pity, instead of as the fully participating and contributing community members they can be. I believe the act of choosing to give of oneself is a profound statement of self-worth and serves to equalize one’s position with those around him or her, changing attitudes and perceptions in the only way they can be changed, through action, not just words.
As I consider it, I am struck by the observation that service to others is one of the few areas in a blind person’s life not restricted by the barriers and misconceptions of society. There is no need for legislation or regulation to ensure the right to engage in acts of kindness and service to one’s community. It is liberating to embrace such a notion, and it is what I have discovered is alive and well in the NFB. I am humbled by the commitment shown to my children and all blind youth and the sincere intention, through action, of paving a better way for those coming after. The investment in the future of a blind child is no small gift to a parent. I find great comfort in knowing the Federation will be there, not only to foster the goals of independence, but also to shepherd the philosophy of service. Selfless giving is truly a measure of high character, and it comes from a place of humility born of genuine self-worth and personal confidence--all part of the mission and intention embodied in the NFB as we have come to experience it.
So, while Lizzie was doing the giving, it was she who garnered the gift. Likewise, as her parent I have been given a far more substantial appreciation of the commitment of the members of the NFB to my children and all blind youth; of the many members who dutifully support the organization, sometimes stretching their budgets, so that the blind youth of tomorrow will be better prepared for a life of independence and self-sufficiency, ready to give back to their communities through service alongside their sighted neighbors and coworkers. It’s not only a gift, it’s every parent’s dream.