The History of Derbytown SHHH/Hearing Loss Association of Kentuckiana … or How It Took Us So Long to Get This Far

 

The beginning

   Derbytown SHHH (the initial name of Hearing Loss Association-Kentuckiana) had its origins in 1984 when Virginia (Ginnie) Mason, a Louisville woman who was struggling mightily with progressive hearing loss, wrote to Self Help for Hard of Hearing (SHHH), a national organization that is now called Hearing Loss Association of America, to obtain a list of people in the Louisville area who subscribed to the organization's monthly magazine, "SHHH Journal," which is now called "Hearing Loss." Of the approximately 15 people she contacted, only three women responded—Carmel Schoenbachler, Betty Shannonhouse, and Melanie Magruder. These women met for the first time in December 1984 and continued to meet monthly, just the four of them, for more than two years. Although it was SHHH that initially brought them together, they did not think of themselves as part of the national organization; instead they thought of themselves mainly as a support group. Meetings consisted mainly of complaining and commiserating! No doubt that is a stage that most people who lose their hearing need to go through. Names for the group were suggested, but no name was ever really chosen. One that Ginnie Mason thought up was quite original—HUSH (Help Us Hear). Of these four women, only Melanie Magruder remains in what became Derbytown SHHH. Betty Shannonhouse moved away after about two years, and Carmel Schoenbachler moved about a year after Betty did. Ginnie Mason remained with the group until sometime in the early 1990s, when she too moved to another state.

 

Getting organized

   In 1987, Carmel, Ginnie, and Melanie attended a speech reading class that Barbara Eisenmenger at the University of Louisville and some of her students were conducting. Also in the class were Judy Rogers, Adele Loring (Judy's mother), and Layne Michler, all of whom decided to join our fledgling group. At Ginnie's suggestion, the group was finally given a name, Derbytown SHHH, and Barbara was persuaded to be the group's professional advisor. Barbara is still with the group and was often the only reason the group kept going! Soon afterward, Reva and Marvin Kruer joined the group. Ann Rosenbaum and Lois Straus also joined early on.

  Still, the group remained primarily a support group. Communication was difficult. There were no captioners then, and no one knew sign language. No one had a TDD or even knew anything about them. Email and the Internet were still in the future, and few people had a computer at home, anyway. Because there was no way to communicate effectively, getting speakers was mostly out of the question. Still, in retrospect, some progress was made. The group received twice-yearly lists of prospects from SHHH national and faithfully wrote letters inviting these people to meetings. Few new members were gained this way, however. By 1989, officers had been elected: Melanie Magruder became president, Judy Rogers was vice president, and Reva Kruer was secretary-treasurer. The group began a letter-writing campaign to get the television stations to caption their local news. It wasn't long before one station began captioning its news. Captioning had been in the works at that particular station before we began writing the letters, so Derbytown really can't take credit for that. However, the other stations followed suit and began captioning their news within about a year. Several members bought TDDs (the huge, noisy ones from the early days) and thus had a way to communicate with each other between meetings, although we still couldn't communicate with hearing people as there was no relay. But the clunky TDDs were quicker than writing letters and postcards to each other. Melanie began sending out a rudimentary "newsletter" (or more often than not, just a postcard!) on a monthly basis.

 

Moving along

  Theresa Kidwell (then Queenan) joined Derbytown SHHH in 1990 and was elected president of the group in 1991. Her vice-president was Layne Michler, and her secretary-treasurer was Ann Rosenbaum. Theresa continued to send out a newsletter and then persuaded Roland Fowler to take it over. As editor, Roland put out the group's first professional-looking newsletter. Theresa remembers that SHHH national was very picky about the way the newsletter was printed (a copy was sent to them each month), and Roland had to abide by their stylistic rules. Theresa had more contacts in the HOH/Deaf world than most of us and was able to get speakers for some monthly meetings; other meetings were "rap" sessions that were issue-oriented, not just the "complaining and commiserating" of the early days. All these were good changes. Theresa says, "I just know I was able to keep the group going and that is an accomplishment for all of us who have served as president."

   Theresa was also the SHHH representative on the Kentucky Commission on the Deaf and Hard of Hearing (KCDHH) from 1990 through 1995. In 1994-95, she was president of the commission.

   David Bayersdorfer followed Theresa as president in 1993. Theresa became vice-president, and Lois Straus became secretary-treasurer. David continued to get interesting speakers for our monthly meetings, most notably executives from the local television stations. We had some success in getting them to improve their captioning of the local news. David improved communication at the meetings by getting a loop system (assistive listening system) with money from an anonymous donor. Barbara Eisenmenger, our professional advisor, also used an overhead projector to summarize what was said at the meetings. Many people preferred the loop system; others did not benefit that much from it and preferred to read what was written on the overhead projector.

 

Gathering steam

   Mary Lee Nelson, a relatively new Derbytown member, became president in 1995, because as Mary Lee jokes, "I was the only person who would do it!" David Bayersdorfer moved down to vice-president. The secretary-treasurer position was split; Theresa Kidwell became secretary, and Lois Straus remained as treasurer.

   A lot of good things happened when Mary Lee took charge. For one thing, she saw the need for real-time captioning, and found a captioner, Teri Hockersmith, who was willing to donate her services to caption our meetings. We had been meeting at Harvey Browne Presbyterian Church, but the rooms there were not equipped for captioning. Mary Lee discovered that the Metro United Way Building downtown had a projector for captioning, and we began meeting there. The room cost $25 an hour, however, and Father Fowler at Holy Trinity Catholic Church offered to pay for it until we could find a free meeting place. Teri Hockersmith eventually moved to another state, but the captioners at McLendon-Kogut Captioning agreed to take turns captioning our meetings for free. They are still with the group, and we are very grateful for their faithfulness.

   Mary Lee worked to expand and update the chapter's newsletter. Jay Kidwell, Theresa's husband, began editing the newsletter during this period. Also during this period, Roland Fowler developed a Derbytown web site.

   During her term as president, Mary Lee, a teacher of the deaf and hard of hearing, was active on a state level. She served on various committees in Frankfort at KCDHH and the Kentucky Department of Education. In all of these committees, her concern was getting attention to the needs of hard of hearing children, who were often lost in the shuffle. After serving as Derbytown president, she was appointed as the first state coordinator for Kentucky SHHH groups/chapters. She set up a state web site to connect 300+ Kentucky SHHH members and also wrote and edited a state newsletter.

   Mary Lee set up the chapter's first official election at the end of her term so that we could become an official SHHH chapter. Carla Frizzle was elected president. Carla wrote the bylaws for the chapter and sent in the application for chapterhood. Donna Sorkin, who was then Executive Director of SHHH national, was in Louisville in November 1997 and came to our meeting to present a chapter charter. It was a memorable meeting!

   Carla's vice-president was Louise Wisdom, Mary Mahorney was secretary, and Judy Rogers was treasurer. Carla was a very capable president, and we had some interesting meetings during this period. This was also a time when we become more aware of educating the public about hearing loss and advocating for our rights.

   Louise Wisdom was elected Derbytown president in 1999, and became a KCDHH commissioner as well. Reva Kruer was vice-president, Hazel Tucker was secretary, and Judy Rogers remained as treasurer. At this time, Melanie Magruder began editing the newsletter.

   Louise was soon challenged with finding a free meeting place, as Holy Trinity Catholic Church's funding commitment was running out. The group began meeting at the Louisville Free Public Library, which has a room that is equipped for captioning.

 

Making a difference

    During her presidency, Louise focused on educating community service providers about hearing loss, particularly health care providers, policemen, firemen, and librarians. Captioning of the local news continued to be an issue of concern for the chapter, and Vice President Reva Kruer worked hard on getting local stations to improve their captioning. She arranged a tour of WHAS-TV for Derbytown members so they could see how captioning was done in the studio. In May 2000, Paula Esterle organized an outreach activity in conjunction with Better Speech and Hearing Month. Many volunteers from Derbytown worked with Jewish Hospital's Healthy Lifestyle Centers, Easter Seals, Derbytown's professional advisor Barbara Eisenmenger (with University Audiological Associates), and other local hearing aid dealers to offer free hearing screenings to the public and raise awareness of hearing health issues. In August 2000, Melanie Magruder wrote an article about what medical personnel can do to make communication with hard of hearing patients easier. Mary Lee Nelson put it on the Kentucky SHHH web site, and a small portion of it was included in the Kentucky Hospital Association newsletter.

   By this time, Derbytown was well into public education and advocacy. Paula Esterle was invited to attend the leadership training course at the SHHH national office in Bethesda Maryland, and thus was well prepared when she was elected Derbytown president in 2001. Dale Hottle was her vice president, Melanie Magruder was secretary, and Judy Rogers was once again elected treasurer.

   Paula continued with the community service provider education plan that Louise Wisdom had begun. The confusing, sporadic captioned coverage of the events of September 11, 2001 prompted Derbytown members to contact area TV stations about the situation and to stay in touch with them afterwards. Along with KCDHH commissioner Trish Freeman and other members of the deaf and hard of hearing community, Derbytown members lobbied for legislation that mandated health insurance coverage for hearing aids for those aged 18 and under. The bill was passed in 2002.  Paula Esterle and Merle Williams appeared on the radio show "Savvy Seniors" to address hearing loss. Paula, Judy Rogers, Jayan Thomas, and Ed Schickel made a presentation to HUD on the necessity of accommodating persons with hearing loss. In August 2003, Derbytown members volunteered to staff the KCDHH booth at the Kentucky State Fair, where many folks learned how to contact SHHH and received free hearing aid batteries, which proved to be a major draw.

   Fund raising became a necessity. Judy Rogers took yard sales as her pet project and for many years organized annual yard sales to benefit Derbytown. A silent auction was held at Derbytown's holiday party in 2002, and has become an annual tradition. Derbytown was fortunate in having Hazel Tucker as our very able social chairman for many years and Judy Rogers who, in addition to being the Yard Sale Queen, helped Hazel with social activities and held several offices over the years.

   As more Derbytown members have gone online, we have better communication and have been able to trim costs. Most members now receive their newsletters by email. Mary Lee Nelson started both a statewide and a Derbytown email list and was the webmaster of both the state and Derbytown web sites. Across the country, SHHH leaders can learn from others' expertise through the SHHH leadership email list. Through the Internet, more inquiries come in each month and the officers work to inform people of the advantages of belonging to SHHH, the nation's largest consumer organization for hard of hearing people.

 

Becoming more business-like and media-oriented

   In 2003, Ed Schickel was elected president. At the same time, our long-term state SHHH coordinator, Mary Lee Nelson, resigned and turned the job over to Paula Esterle. Judy Rogers, our long-term treasurer, gave up that job to become Ed's vice-president, Linda Freiberger was elected secretary, and Bob Stuckey took over the treasurer's job.

   Ed, a retired chemical dependency therapist with Seven Counties Services and a former school counselor and assistant principal, had taken the leadership training course at SHHH national and also the Hearing Assistive Technology (HAT) course, and thus was well prepared to lead the chapter.

   Ed's tenure as president was marked by a number of achievements. In addition to overseeing our Hearing Assistive Technology Booth (HAT House) at the Kentucky State Fair, he linked with the American Association of Retired Persons (AARP) and the Offices on Health & Aging to do HAT/Hearing Issues presentations throughout the state, averaging one presentation per month to audiences of 10 to 100. He met with AARP chapters to introduce hearing information and train social workers to work with hard of hearing seniors in retirement and nursing facilities. In addition, Ed and other Derbytown members, notably Paula Esterle and Mary Lee Nelson, worked with KCDHH in changing their web site and the name of the TDD Distribution Program to be more HOH-friendly.

   Ed developed connections with the media, which resulted in a TV story promoting the CapTel distribution and an article on hearing issues in the Health Section of the "Courier-Journal." Thanks to Ed's efforts in securing a sponsor, WDRB-TV introduced captioned newscasts and emergency broadcasts in 2005. The "Courier-Journal" began listing our speaker's meetings, resulting in an increase in attendance from 10-15 to 30-35 per meeting. We moved our meetings from a cramped boardroom at the Louisville Free Public Library to the spacious library at St. Leonard Elementary School.

   Other notable achievements during Ed's tenure were the development of a Newcomer's Folder, which contained information on issues related to hearing loss, and the creation of two new brochures, which were distributed at presentations, workshops, and audiologist's offices. Our board became more active in running the chapter. We rewrote our bylaws and began established committees to take on the workload of the chapter. Membership in the chapter was re-defined to be in line with SHHH National, and we earned our position under National's Non-Profit 501c.3 umbrella. We established a budget process and filed our first IRS report, which will allow us to make grant applications. Thus, the chapter moved into a more business-like position.

   In 2005, Bob Stuckey was elected president. Carlene Ballard (vice-president), Marilyn Fenwick (secretary), and Pat Flaherty (treasurer) were his able assistants. Ed Schickel took an appointed position, outreach director, which allowed him to continue doing the outreach and education projects that he enjoys. Early in Bob's term, the national office, in an effort to better communicate its message and fulfill its mission., changed our organization's name to Hearing Loss Association of America, and (after much discussion!), our local group became Hearing Loss Association of Kentuckiana (HLAK). Of necessity, a good bit of time and effort was spent changing the name in our literature, printing new brochures and other publications that bear our name, and generally letting the public know that we are still here, although under a new name.

 

Making HOH issues more visible

   Bob held a seat on KCDHH at the same time he served as our president, and our group as a whole became more involved in KCDHH affairs, particularly in promoting the interests of HOH people, which often are not the same as those of deaf people. HLAK member Merle Williams was also on KCDHH, representing the Alexander Graham Bell Association. Members Ed Schickel and Paula Esterle often attended KCDHH meetings and offered our viewpoint on various issues.

   During Bob's term, cochlear implants were a hot issue, as many of us had one by this time and were busy working with our audiologist to maximize our hearing with them. Another issue that concerned us during this period was HOH accessibility to emergency notification systems. In June 2006, thanks to the efforts of Ed Schickel, WDRB-TV gave us a spot in a news story about the city's new emergency communication system. Bob Stuckey appeared in the spot and told how deaf and hard of hearing people could be included in the system. Our state fair booth was better than ever, as we partnered with Heuser Hearing Institute, Oticon, and Cochlear Americas to fund and/or staff it. Paula Esterle and Ed Schickel were instrumental in setting this up.

   In August 2007, Ron Haynes was elected president of HLAK, and Karen Lichtefeld was elected vice-president. Marilyn Fenwick remained as secretary, and Carlene Ballard became treasurer. By this time, Pat Flaherty had become editor of the newsletter and webmaster of the chapter web site. These officers were well-positioned to continue bringing HOH issues to the forefront and to expand membership, both locally and nationally.

   The first order of business was to revise and update the bylaws to reflect our chapter's name change to Hearing Loss Association of Kentuckiana (HLAK). Under Ron's leadership, the chapter put a new emphasis on developing ties with Seven Counties Services and the Kentucky Department of Mental Health, Mental Retardation and Substance Abuse in order to improve accessibility to social and mental health services for HOH people. We spent a lot of time, as well, discussing the transition from analog to digital TV, focusing particularly on how captions would be affected.

   One particularly important project was the purchase of much-needed visual equipment—a Toshiba projector and two DaLite tripod projector screens. When the equipment was purchased, we took an inventory of the chapter's assets and started a listing. A Bereavement Fund was set up, and annual HLAK chapter dues of $12, payable each October 1 starting in 2009, were approved. We were blessed with many volunteers and thus were able to staff 154 shifts at the 2008 and 2009 Kentucky State Fair booths. Due to flooding in March 2008, an earthquake in April 2008, remnants of Hurricane Ike in September 2008 and an ice storm in January 2009, a focus on accessibility of emergency information systems became a high priority. Social activities included outings followed by dinner in Starlight, Indiana and Bardstown, Kentucky.

   In September 2009, Paula Esterle, HLA State Coordinator for Kentucky, was chosen to receive Hamilton Relay’s Deaf Awareness Leadership Award. The award was presented to her at HLAK’s meeting on October 13, 2009. Chapter member Jean Haynes nominated Paula for the award, and Hamilton Relay Outreach Coordinator Jeff Carroll presented it to her.

Hearing Loss Association of America National Conventions

   National conventions have become an important means of bringing news to chapter members. Ginnie Mason attended a convention during the chapter’s very earliest days. Judy Rogers and Reva Kruer went to a convention early on, too, in Iowa. In 1995, Theresa Kidwell, Reva Kruer, Judy Rogers, David Bayersdorfer, and Mary Lee Nelson went to the convention in Dallas, and things just snowballed from there. SHHH/HLAK members have attended every convention since then. Mary Lee says the convention in Boston was memorable because she and Judy Rogers had dinner with some of the members of the Beyond Hearing online email list, whom they had not met face-to-face before, and also because "Boston was drowning in rain …. The city seemed deserted. Hoses in the street were emptying basements of floodwaters. Ambulances and fire trucks screamed down the streets." The 2003 convention in Atlanta was particularly helpful for Mary Lee, because she interviewed people from all the cochlear implant companies to help her make a decision about whether to get an implant. She did undergo cochlear implant surgery in late October 2003. The conventions in New Orleans and Seattle were memorable for the food—lots of red beans and rice in New Orleans and clam soup in Seattle. Mary Lee said of the Seattle convention, "We had our dinner night on an Indian reservation island out in the bay. They served us clam soup—with the shells in the soup. Eat the soup, dump the shells on the beach, and stomp on them." Ed Schickel attended his first convention in 2003 in Atlanta. Ed said "I was most impressed with the panel of hearing aid manufacturers, the vendor booths, and the closing panel on cochlear implants. I learned about the atrophy that takes place in the brain as our hearing decreases." Fourteen people from HLAK—the most ever—attended the 2009 convention in Nashville. They enjoyed a show at the Grand Ole Opry that was captioned for the first time in the Opry's 83-year history. During the convention, HLAK member Karen Lichtefeld was interviewed regarding her auditory brainstem implant. Her story appeared in the March/April 2010 issue of “Hearing Loss” magazine. The story was accompanied by a picture of Karen, Theresa Kidwell, Mimi Kiley, and Donna Kiley. 

 

Remembering …

   A number of members have died. They are George Andrews, Edith Andrews, Dorothy Doucette, Maurine Fowler, Roland Fowler, Ann Lee, Adele Loring, Charlotte Pugliese, Mary Elinor Smith, Lois Straus, John Washer, Mona Stiff, Ann Rosenbaum, Helen Wiesner, Marvin Kruer, Reva Kruer, Judy Rogers, and Layne Michler. Each contributed something to Derbytown SHHH and each has been truly missed.

 

---by Melanie Magruder with input from Jean Haynes - updates May 2011