ILC Summary — Fall Quarter, 2006Research on Hearing Loss Accommodationby Janis Aaron Moore |
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The key federal legislation regarding disabilities is the Americans with Disabilities Act (ADA) passed in 1990, and under the jurisdiction of the United States Department of Justice. This far-reaching legislation effects all governments, including federal, state and local, as well as businesses and organizations. All federal agencies are required to have ADA Compliance Officers. The ADA legislation encompasses regulations for employment, education, public accommodations, travel and transportation, and technology and telecommunications. It was passed as a follow-up of the Civil Rights Act of 1964 to ensure disabled persons are not discriminated against. Its companion legislation includes the Rehabilitation Act of 1973 and a number of Acts passed in the 1980s pertaining to disabled and handicapped persons. In addition to the general anti-discrimination mandates on government agencies, the ADA also affected previously-enacted legislation, e.g., the Communications Act of 1934. A number of agencies offer special services and protections for disabled persons. (Refer to the "Federal Agencies" list in Appendix A.) The Individuals with Disabilities Education Act of 1986 impacts schools, colleges and universities.
Since the ADA has mandates for state and local government, the agencies of the State of Washington were impacted generally. In addition, the Department of Social and Health Services has several divisions devoted to disabled persons: Division of Vocational Rehabilitation, Office of Deaf and Hard of Hearing, Division of Access and Equal Opportunity and the Infant Toddler Early Intervention Program, to name a few. Unfortunately, the Office of Deaf and Hard of Hearing is funded with taxes for land telephone lines. With the increase in the use of cell phones, this important agency has lost much of its funding and, as a result, its services have become critically limited.
Although periodic training is offered at Evergreen, fewer than 30 people attended the workshop offered on November 16, 2006. The trainer, John Evans of Washington State Department of Social and Health Services mentioned that he must come back again and again to train staff and faculty. Mr. Evans explained accommodation must be provided to all faculty, staff and students with disabilities for all programs and activities offered by the college. Since Federal legislation pertaining to hearing loss and disabilities uses language like "Least Restrictive Environment" and "Most Effective Communication", one can see the importance of obtaining training about the laws and the support which must be provided. Several of my faculty and advisors have mentioned that they have received no training in accommodation or disabilities, and frequently receive very short notice about accommodation required for a student.
After reviewing my partial list of legislation and agencies, it's apparent one could devote a lifetime trying to wade through the Gordian knot created by the ADA and other Acts pertaining to disabilities. In my research I learned that there are many who believe the Americans with Disabilities Act is too expensive to impose on private businesses, and I can sympathize with their complaints. However, as with the controversial issue of providing legal information to American citizens who don't speak English, a sizable sector (about 28 million Americans with hearing loss) of the voting could be hampered in their participation in the democratic process if accommodation were not made available, or if their rights were abbreviated due to discrimination.
Note: On the heels of the United States Americans with Disabilities Act, Australia, Canada, the United Kingdom and Pakistan adopted disability discrimination acts of their own.
"Assistive Listening Devices", as I learned, is a misnomer for my intended research. Hearing Dogs aren't devices. And although they may use devices, services provided by interpreters, notetakers and captioners are not devices. Similarly, telecommunications services use devices, but they are services. So there needs to be a different term or phrase to describe what's available to help people with hearing loss communicate and navigate in a hearing world.
Starting with actual devices, there is an assortment of equipment which helps people with hearing loss without the need for hearing aids, e.g., amplified telephones and television amplifiers. There's a wide and sometimes confusing variety of hearing aids – in the ear, in the canal, behind the ear, programmable, digital. The most sophisticated device of all is the cochlear implant, a very expensive surgical procedure which is not suited to resolve all hearing loss.
Then there's the equipment commonly known as Assistive Listening Devices. As with hearing aids, there's an incredible variety of equipment available. There are alert or signaling devices which "inform" a person with a hearing loss that the smoke alarm is buzzing, the phone is ringing or someone just pushed the doorbell button. There are even devices which tell you your automobile's turn signal is on or there's a siren blaring somewhere.
Another group of Assistive Listening Devices includes amplification to facilitate communication. These range from devices for one-on-one conversations, to those which accommodate people in meetings and classrooms. The technology ranges from infrared to FM transmitters. Typically, these devices require some relationship to a person's hearing aid(s). Since FM systems transmit sound through building walls, they are prohibited in confidential or security situations. Many movie theatres now have infrared systems where a person exchanges their driver's license for a headset tuned to the movie they will watch. When attending a lecture, a person can use a directional microphone attached to the lapel or garment of the speaker. However, this does not amplify any of the discussion which comes from the audience. In addition to personal devices, institutions and organizations can also equip class- and meeting rooms with equipment which provides amplification which can be "received" by special equipment worn by the person with a hearing loss.
Communication can also be facilitated by a number of services, provided by other people or technology. For example interpreters can be used to connect a hearing person with a person with a hearing loss by using sign language, like American Sign Language. Captioners, using current technology, have a stenotype keyboard and laptop with specialized software. The "customer" can read a near-verbatim proceeding as it's happening, and even receive an electronic transcript after the event. Unfortunately, it takes years for interpreters and captioners to learn their trade well enough to provide adequate service to people with hearing loss. Additionally, and because of this, there is a shortage of people who offer these services.
Captioning also includes closed-caption television and video. The laws about this service are changing, and are not without controversy. There are rare examples of commercial movies with captioning, with the exception of subtitled foreign language movies. Many nonprofit organizations, which provide important information for our democratic process, can't afford to caption their offerings. Some organizations are requesting exemption from FCC mandates. Many television programs are captioned, while most commercials are not (perhaps a mixed blessing?). But heavy-hitting commercial enterprises, notably the pharmaceutical industry, have begun to caption their advertising messages.
Another cluster of services are called "Telecommunications Relay Services". The Federal Communications Commission regulates many of these services. Some of these services merely require a telephone. Others require sophisticated technology, such as video systems, computers and software, or teletype equipment (TTY). My foray into relay services was, perhaps, the most gratifying aspect of my research for my Individual Learning Contract. I had heard about the 7-1-1 relay service many years ago, but never realized how it could help me; or, more importantly, that it is available everywhere in the United States and it is free.
Relay services are just what the term "relay" implies: one person communicates with a middle person (sometimes called an Operator) or a device (a TTY or computer system), who or which relays the information to another person. The assorted systems facilitate communication for the Deaf and hard-of-hearing (HOH) communities.
Hearing Dogs are neither a device nor a service, per se. I learned about several organizations which train dogs for Deaf / deaf and hard-of-hearing people. One organization provides trained dogs free of charge. Another recently changed its policy, and now requires the dog owner to be involved with the training of their dog. Although the dogs can't help with everything, they can "signal" the owner when certain sounds occur – most notably when the doorbell or telephone rings. The dogs are trained for a year or more. After training, the owner is responsible for the dog's care and ongoing reinforcement. A side benefit of Hearing Dogs is the companionship they provide, particularly to people with hearing loss who live alone.
I've heard hard-of-hearing people describe the community as "gadget happy". However, when you realize that hearing aids alone frequently don't correct hearing loss to normal ranges, you can understand why people are attracted to any means to facilitate communication. Unfortunately, the equipment can be expensive, and the broad range of equipment available can be confusing. Also, there is a large number of companies who provide catalogs of equipment. The search procedure for the right company and the right equipment can be frustrating and confusing. Since there are several types of hearing loss, it's important to obtain the equipment which best suits a particular situation.
The best situation, in my opinion, is a trade fair devoted to businesses and organizations which have equipment available to try out. This also means the potential customers can query a knowledgeable professional about the use of the devices, and the suitability for the individual's needs. Unfortunately, these trade fairs are usually only offered during large conferences and events where there may be a sizable admission fee. The next best hands-on opportunity to see and try out equipment is provided by the Hearing, Speech and Deafness Center (HSDC). The staff in the HSDC store are very knowledgeable about the equipment they sell, and provide information to a prospective purchaser.
Several of the books I've read for this Individual Learning Contract have stated that the hearing loss community "loses its voice". The challenges of communicating in a hearing world are great. Often it becomes easier to forego attendance at important events, both personal and professional, when you know you'll be confronted with a noisy environment, or one that's not conducive to conversation. Also, many situations, particularly emergency alerts, are directed toward a hearing community. The expense and the somewhat overwhelming array of equipment and providers, the lack of facilities or trained personnel, impose impediments which may mean a person can't or won't take advantage of what's available.
This area of my research proved to be most disappointing. Although I haven't performed an extensive search, preliminary searches using Internet search engines and speaking with librarians, counselors and other professionals resulted in a mammoth void of services available to help a person with a hearing loss cope with their loss, or learn to communicate better.
There are myriad organizations devoted to disabilities, particularly for the Deaf and / or hard of hearing. (Refer to Appendix C.) However, I was unable to locate a specific association, national or for Washington state, which lists counselors who specialize in the issues experienced by people who have a hearing loss. A Communication Advocate of the Hearing, Speech and Deafness Center, said she is unaware of any special designation for such a specialty. A counselor at Evergreen's Counseling Center could not provide any referrals.
In Washington, rehabilitation counseling is offered by the Division of Vocational Rehabilitation (DVR); however, in order to receive these services, an applicant must be qualified as having a severe disability. DVR's services are not made available to the public at large. The Office of Deaf and Hard of Hearing is operating on a severely restricted budget, as mentioned above. They contract with regional outreach agencies to provide services; the Hearing, Speech and Deafness Center serves our region.
The large population of the hard-of-hearing "community", understanding that this community "loses it's voice", the complicated issues which arise when one loses one's ability to hear – all indicate that there should be a greater emphasis on the training and certification of professionals. And particularly lacking is contact and referral information to the public. Witness the situation at The Evergreen State College described below.
The referrals and resources lists provided by Evergreen's Counseling and Health Centers were disappointing. They seemed to indicate a missing link between Evergreen's commitment to diversity, its compliance with the Americans with Disabilities Act and other laws, and its actual performance. While the "technical aspect" of providing access accommodation is adequate, the "soft", human side of disabilities seems to have fallen through the cracks of administrivia, and landed somewhere in the realm of "self-directed learning".
One aspect of my intent behind identifying how to request or demand accommodation stems from my desire to learn when it's appropriate to demand accommodation and when I can only extend a request. The essence of the distinction comes from legislation. For example, I can demand accommodation from the faculty and staff of The Evergreen State College, which is regulated by laws. However, I can only ask my fellow students to do their best to communicate in a manner that enables me to participate in a conversation or classroom discussion.
My second desire was to identify what I need and to learn how to ask. I learned that my needs include the control of the environment, and the mannerisms and speech patterns of the speaker(s).
By "environment", I mean the room or venue where communication takes place. Although I haven't addressed environment before, it has been striking to me that Evergreen's newest lecture halls are so poorly designed to accommodate people with hearing loss. Windows should have curtains, ceilings should have acoustic tiles, floors should be carpeted, walls should be textured. Instead, the rooms in the Seminar II series of buildings have cement walls, floors and ceilings, and no window coverings. Obviously, people can do little to make adjustments to these environmental situations. Lighting is the easiest to change, but only affects a small portion of the needs of a hard-of-hearing person.
Mannerisms and speech patterns might seem easy to address. However, my research led me to the discovery / realization that speech patterns are deeply ingrained and unconscious, that it's often difficult or impossible for a speaker to change ... much or for very long. Since lip- or speech-reading are important to people with hearing loss, long, droopy mustaches should be trimmed. Also, things which change the visibility of the mouth or the way a person moves their mouth – piercings, food and gum, covering their mouth with their hands – can be distracting, and are all detrimental.
Speech patterns which might impede understanding include lisps, foreign accents and regional dialects. People who don't move their mouth much, particularly their lips, when talking are more difficult to "lip read". Volume is definitely a factor for good hearing; however, the other things – done well – can compensate for a soft voice. Talking very fast, particularly when explaining new or complicated concepts, can be problematic. It helps to be familiar with the speaker.
However, the aspects of demanding or asking are more sensitive, and bring us back to the psychological challenges of living with hearing loss. Once I learned how unconscious speech is with my fellow human beings, I could look on their inability to change with more empathy and understanding. It will be easier to approach them as advocates, rather than as being rude and insensitive.
Another aspect of "losing our voice" is that we miss so many conversational tidbits, we frequently "adapt" by pretending we hear / understand. Rather than be deemed a nuisance by asking for accommodation, we tend to withdraw. Part of my educational process has been the repeated and reinforced urging of the people I interviewed to "speak out" and "let people know".
I have added some tools to my arsenal of "devices" to request accommodation. I have an evolving email I send to faculty before my classes commence. Since taking "Writing for Change", I've added a five-minute speech to my fellow students, where I talk about hearing loss, what they might experience from me, and what I hope to persuade them to do to accommodate me.
I've also been working on what I call my "HOH Survival Flip Kit". It contains an "I Lip Read" button, a large sign which says "I am hard of hearing", and a bullet list of problems I experience. For example, the list includes "I don't understand whispers" and "I can't understand people with foreign accents". The sign is covered with plastic and can be flipped up to reveal the list. Then you can flip the "kit" over, and there's a magic slate where you can scribble notes back and forth. I was initially shy about sharing this little kit. But when Michael A. Bower spoke about "Understanding Dementia" at Tacoma Hearing Loss Association meeting on 10/14/06, she brought a "Hospital Kit" with an assortment of things a deaf / hard-of-hearing person should bring to the hospital to ensure accommodation. That event, together with remarks like "My grandmother needs one of those" or "My daughter is a fire fighter, and sometimes she encounters a person with hearing loss, so she could use that" have encouraged me to continue developing this tool for communication.
[under development]
Interpreters
Captioners, Communication Access Realtime Translation (CART)
Sign Language (including American Sign Language)