Focus on Chapters: Mass AG Bell
by Evan Brunell
Navigating a child’s journey through hearing loss is a daunting task for parents, who have to work with a variety of hearing and education professionals to ensure proper diagnosis, optimal access to sound through hearing technology, and access to sufficient education and services for language development, literacy and learning.
Just as important is the need to successfully socialize children and teenagers who are deaf and hard of hearing. Everyone, regardless of hearing status, has an inherent need to belong and connect.
At the 2013 AG Bell Listening and Spoken Language Symposium, AuditoryVerbal in the United Kingdom reported findings that showed children with hearing loss work with less information than their peers with typical hearing during play and other informal activities. This is significant because 90 percent of what typical young children learn is through overhearing (Cole & Flexer, 2011). Regardless of how well a child who is deaf or hard of hearing can succeed at honing their listening skills, they will always have challenges in being able to successfully overhear others. AuditoryVerbal found that during a typical “successful” play session, 80 percent of children with hearing loss experienced a breakdown in communication.
With these factors coming into play for a child with hearing loss, most of his or her language is learned from adults, not other children, and ideas are discussed concretely instead of abstractly among peers, AuditoryVerbal notes. Children who are deaf and hard of hearing miss out on learning informally how to comfort, negotiate, advocate and participate, which can affect emotional growth and have an impact on confidence and self-esteem.
Children and teenagers can also have difficulty making friends with peers with typical hearing due to public perception of hearing loss and uncertainty from peers on how to communicate. Research shows that 77 percent of children and teenagers with typical hearing do not know how to communicate with someone with hearing loss, and over a quarter (27 percent) would not even try to talk to a peer who is deaf or hard of hearing (UK’s National Deaf Children’s Society, 2002).
As children enter the teen years, they struggle with feeling “normal” regardless of hearing status. Those with hearing loss are even more at a disadvantage, so imagine how powerful the feeling of normalcy must be to a child or teenager with hearing loss to connect with a peer, bonding over shared experiences and frustrations.
Teens Jamie S., Ted H., Jeremy G., Jeremy W., Olivia H. and Kim D.
enjoy Mass AG Bell's 2014 fall mini-golf event in
credit: kasey kodack
The Massachusetts chapter of AG Bell (Mass AG Bell) understands the importance of fostering social connections between children and teenagers who are deaf and hard of hearing, and shapes its chapter activities around social events. Mass AG Bell typically holds six to eight events per year, also volunteering time and resources to the Clarke Schools for Hearing and Speech as well as the biennial Northeast Cochlear Implant Convention held in the state.
A teen participant at the Clarke Schools’ Explore the Outdoors camp found the social connections particularly helpful. “I learned I’m not the only person who says ‘what?’ multiple times when talking to people,” she said. “I didn’t feel awkward when I took my hearing aid off at the beach or when I was not hearing most of what people were saying.”
The chapter’s success goes beyond connecting peers with hearing loss to one another. Reverberations can be felt throughout the entire family, when family members connect with one another. Lori Glassman, a Mass AG Bell board member and parent of a child with hearing loss, said that her family participated in chapter events so that the whole family would be exposed to adults, teens, younger children and babies with hearing loss. “Even Corey, a sibling with typical hearing, needed to know he’s not the only one with a brother who is deaf. He needed toshare stories about being patient and his brother’s awesome speechreading skills.”
In order for parents to be notified of social events that may interest them, Mass AG Bell sends out regular emails and maintains a public calendar of events occurring throughout the state, regardless of whether Mass AG Bell is involved. The chapter sends out quarterly newsletters, and its website (massagbell.org) holds additional information and resources, including a blog.
Events vary between recurring and one-time events. There is an annual Winter Skate Party in which parents and children enjoy skating on a hockey rink and networking with each other. Despite a snowstorm threatening the event in February, Mass AG Bell saw record turnout. In addition, a mini-golf event is held every September to encourage children to keep in touch as the new school year begins, since many of them are typically the only student in their school with hearing loss. Other events held in recent years include sailing lessons, college or minor-league sport games, canoeing and hiking.
Previously, events used to be targeted specifically to children or teenagers, with some chapter-wide events. Recently, the chapter has had success with events for children of all ages so that younger children can meet older children who serve as implicit role models. The presence of positive role models is also apparent in the composition of Mass AG Bell’s board. Of a nine-person board, five directors have hearing loss. Children and parents gain the ability to see a successful adult with hearing loss who can share experiences and advice at different stages of living with hearing loss.
As president of Mass AG Bell, member of the Clarke Schools board of trustees and the AG Bell board of directors, volunteer, and an adult with profound hearing loss, I understand the importance of social connections among peers. Throughout my work, I’ve attempted to foster and maintain friendships with teenagers who are deaf and hard of hearing in order to serve as a resource as they navigate academic and social challenges.
Despite advances in technology, which have given today’s children who are deaf and hard of hearing the ability to integrate into mainstream society more efficiently than previous generations, I still see a desire among these children, teenagers and young adults for social connections with peers and adults who are deaf and hard of hearing. My opinions are generally solicited in matters of self-advocacy and for problem-solving situations in which there may be unique challenges related to hearing loss.
Recently, I was honored with the Outstanding Advocate of the Year Award by the Massachusetts Commission for the Deaf and Hard of Hearing in recognition of my leadership, service and accomplishments as an advocate for individuals with hearing loss, particularly by fostering social connections for children and youth with hearing loss, mentoring through Clarke Schools, and building a strong and thriving state chapter.
Events held by Mass AG Bell not only benefit the children, they help parents see successful teenagers and adults with hearing loss, giving them hope and a roadmap to success. Mass AG Bell events also serve to connect parents of children with hearing loss in a natural way to share experiences and solicit advice. It is important for parents to have a support network of others who “get it.” Mass AG Bell board members who are deaf and hard of hearing also regularly provide advice to parents, affording them a unique view provided by someone who has had similar experiences as their children. Mass AG Bell intends to expand its offerings next year to further empower parents, as it will begin offering AG Bell’s parent advocacy training courses.
“There is an inexplicable comfort sharing your experiences with other families who are in the same situation.” Glassman adds. “It’s nice to get advice from experienced parents and even more rewarding is to give advice to new families.”
Whitney Meyer (third from left), a professional ice-skater who is deaf,
poses with Mass AG Bell skaters at its 2013 winter skate in
credit: kasey kodack
The confidence children with hearing loss can gain through our chapter’s work connecting peers together can reap lifelong rewards. “Confidence is so vital to their academic success. When students see that they are not alone, confidence grows,” says Kaitlyn Millen, a teacher of the deaf who oversaw Mass AG Bell’s teens program from 2013-2015. “This is exactly why organizations that develop the community of families of students who are deaf and hard of hearing, like the Massachusetts chapter of AG Bell, are a necessary part of the changing landscape of deaf education.”
Children who are deaf and hard of hearing and their parents face challenges on a daily basis in charting a path through life. Mass AG Bell is dedicated to helping children and parents connect with one another, share information, and increase confidence. By doing so, the chapter helps AG Bell further its vision outlined in its strategic plan where families receive support throughout a child's life transitions, and children receive peer support and learn to be self-advocates.
Evan Brunell is a civically engaged businessman who has profound hearing loss and wears cochlear implants. He is a member of the boards of directors of the Alexander Graham Bell Association for the Deaf and Hard of Hearing and Clarke Schools for Hearing and Speech, and volunteers actively in his community. Recently, he was honored with the 2015 Outstanding Advocate of the Year award from the Massachusetts Commission for the Deaf and Hard of Hearing. Brunell served as president of the Massachusetts chapter of AG Bell from 2010-2015. Currently, Brunell represents the fourth generation of his family’s business, overseeing marketing and accounts for three separate companies. Previously, he was a baseball journalist from 2003-2014, most notably as a national baseball columnist for CBS Sports and correspondent for ESPN. Brunell created the first online sports network, presiding over the company for six years. He holds a bachelor's degree in journalism and a master’s degree in public administration from Northeastern University in Boston, Massachusetts.
Source: Volta Voices (2015): Volume 22, Issue 2.
Back to April-June 2015 Volta Voices Magazine