(As promised, we return to our look at the condition called Aphasia in a conversation with Ellayne Ganzfried of the National Aphasia Association.)
Ellayne Ganzfried wanted to be a teacher, but a hiring freeze in New York steered life in a completely unexpected direction. Ganzfried, Executive Director of the NAA, has had a lot of unexpected surprises along her career path, all leading to work she loves—helping raise awareness for people with aphasia.
Forced to explore options other than teaching, nothing stood out until a counselor made her a proposition. “The college I attended in Brooklyn, attempting to correct the local accent, required a speech screening to decide if a student should take classes in public speaking…after I read the passage my advisor asked my major, which I hadn’t decided. She promised to exempt me from the public speaking class if I took a course in speech-language pathology. I told her she had a deal, and once I started taking the classes I fell in love with it.”
From there, Ellayne went on to become a Speech-Language Pathologist, doing direct clinical work as well as administering several speech and hearing programs in New York and Massachusetts.
Her arrival at the NAA is another story of networking and coincidence. While a member of the Council for Academic Accreditation of the American Speech, Language, Hearing Association in 2006, a colleague who was a board member of the National Aphasia Association, got an email stating the director of the NAA had resigned. “She relayed the information to me, and I said ‘Oh, I’m sorry. That’s terrible.’ Then about five minutes later she turns to me and says, ‘Well, maybe you would want the job.”
Although Ellayne wasn’t looking for a position, it turned out to be the right thing at the right time; her speech and language background in conjunction with her administrative skills perfectly fit the goals of the NAA. At that time, the organization needed new leadership to foster its growth. “They were at a crossroads, and I was able to come in and use some of my ideas to help them move forward.”
According to Ellayne, at that time having leadership with a speech-language background seemed helpful for the NAA. Previous directors had strengths that could bring funding to the NAA, but other kinds of talents were needed. “Because I had a background in speech-language pathology I could help raise awareness of the organization [within that field]. Many speech-language pathologists were not aware that the National Aphasia Association even existed. That was my step one.”
The NAA’s biggest challenge has been lack of awareness about aphasia in the general public. Because people don’t know what aphasia is, they’re not so willing to embrace the cause or support the work until it touches them personally. Many people leave hospitals not even being told that their condition has a name and that resources are available to improve their situations.
“We work to overcome the isolation,” Ellayne explains, “Over 70% of people with aphasia cannot return to their previous jobs, and because communication is so important, there is the problem of isolation and depression.” Because the NAA is small non-profit, we don’t have a national spokesperson, a face to identify with the work with aphasia. But Ellayne reminds us that the face of aphasia is everybody.
The national association provides an umbrella of support for local groups like SCALE (see the Perspectives www.aphasia.org The NAA also has information for a variety of languages and cultures.published on October 5) in Baltimore, providing a conduit of education, information, and resources for people with aphasia and their families. They offer resources like an 800 number/hotline where people can call their office in Manhattan from all over the world as well as a website
Tied in with that is their State Representative Network, which coordinates resources of every state and every location and provides general information about aphasia. Approximately 200 volunteers also provide information to people with aphasia or their families in their specific geographic areas. These include both professional such as speech-language pathologists, social-workers, and physicians as well as persons with aphasia and caregivers. NAA also has a national registry of aphasia community groups, listed by states, with a direct focus for people with aphasia. Group activities and programs are listed on their web site and the NAA publishes a quarterly newsletter that features “Groups/Programs of the Month.”
At present, the NAA consists of a staff of two, so they rely heavily on the volunteers as representatives of their programs and centers. Despite over a million Americans having aphasia, most people have never even heard of it. There is even an Aphasia Bill of Rights, adopted in 2006.
The NAA continues to make progress in raising awareness about aphasia. June is, proclaimed each year since 2007 by Congress. Local groups are encouraged to highlight their activities, and a poster and theme for the month are sent to the various centers across the country.
The NAA coordinates regional conferences, provides speakers to speech and hearing groups and related organizations, and aphasia awareness training for emergency services providers and first responders. “We received a grant from the Christopher and Dana Reeve Foundation in 2007 to train police officers, firefighters, and EMTs in New York, New Jersey, and Connecticut.” The outreach opportunities for this program are phenomenal, she believes, because it gives the association a chance to educate people who might be unfamiliar with the condition (at least its origins and opportunities for partnerships to deal with it), and it opens channels for fundraising and collaboration throughout the country. The program began in New Hampshire and has been so successful that it is now in more than 25 states including Oregon, Ohio, Texas, and Michigan. The NAA continues to work with local aphasia centers, hospitals and emergency-response institutions to expand the program.
One of Ellayne’s most memorable projects, though, was the co-production of an off-Broadway play about aphasia called “Susan Yankowitz, the play provided a unique way for the NAA to educate through theater. The play ran for four weeks in the spring of 2010. Ellayne would love to take the show on a national tour, partnering with local programs and centers. “Right now, we’re trying to work with SCALE and with Loyola University to bring the play to Baltimore.”.” Written by
Ellayne reports that fundraising has been a struggle. “We have products that we sell at conferences and via our website, such as the aphasia handbook, a wonderful guide for people with aphasia and their families…But most of our funds come from individual donations. We don’t get any government funding. We may periodically get grants, and we do a couple of fundraisers a year. Last year our fundraising was tied in with the play, so the opening night of the production [of “Night Sky”] was our fundraising event.”
In addition to the possibility of taking “Night Sky” on the road, the NAA was recently contacted by Second Stage Theater, who planned to revive another play about aphasia, “Wings,” first done in 1978 and later nominated for a Tony Award. Written by Arthur Kopit as a tribute to his father who had a stroke and aphasia. “He wrote the play as an homage to his father, but also to speech-language pathologists because he really appreciated what a speech-language pathologist had done for his father.”
The play opened on October 24 and runs until November 21st, at Second Stage Theater. We posted a story last Thursday about the benefit performance on November 2nd, but the NAA is still encouraging people to attend the show as an opportunity to learn more about aphasia and the partnerships that help people with aphasia thrive. The NAA can be contacted at 800.922.4622 or at firstname.lastname@example.org for tickets and information.
Summing up, Ellayne wants people to know that “aphasia can touch anybody and it does touch so many. It is so important to be aware of it because in the blink of an eye, it can befall anyone and your life can be changed. I think what people don’t understand is that a person with aphasia is still the same person on the inside. In spite of the difficulty with language, their intellect remains the same, their ability to be participatory hasn’t changed.”
Written by Cate Richard. Interview and additional research by Christopher Gardner.
Written by: Cate Neilson