Hearing Loss Advocacy

Here's our coverage of the hearing loss advocacy presentation at the SayWhatClub 2007 National Convention. It was a wonderful convention. Our full coverage begins here.

This workshop explored some common situations faced by people with hearing loss and how each of us can advocate for ourselves to get our needs met. Linda Binn and Pearl Feder let the discussion and performed the skits.

Pearl started the workshop with a story about an early advocacy experience she had. About 25 years ago she was driving her car and was cut off by a Hell's Angel type on a motorcycle. Not shy about standing up for herself, she flipped him off, and he started following her! He was a big guy, full of tattoos. When she stopped he came up to her window and started yelling at her. Pearl indicated that she was deaf and signed back to him! He backed off and apologized profusely! And that day Pearl realized that hearing people are afraid of people with hearing loss. And that was an early experience with advocacy.

She realized that she couldn't always use those tactics without becoming a bully herself. But she still sometimes relies on them - like last night at the Bellagio light show. She took a picture of the show, and a woman confronted her and tried to take her camera. She signed to the woman, but that tactic didn't work. The woman took her camera and gave her a ticket she could use to get the camera back.

After the show she went to get her camera back and had to deal with two men. It turns out that there was an announcement at the beginning of the show that photos were not allowed. But of course Pearl didn't hear the announcement. So when she found out, she apologized. But she also made a point of the fact that people with hearing loss are unable to hear the announcement. And she requested the name and email address of a supervisor to whom she could write about the incident.

Pearl noted that advocacy is not demanding something because of some condition. It is first of all about education. She noted that she works with parents of deaf and hard of hearing children and one of her important tasks is to educate them about hearing loss.

Skit Number One

Linda and Pearl play a long-married couple. Linda, the deaf wife, is unable to hear on the phone. They have a son in Iraq, they haven't spoken to him in six months, and he is calling today! When the phone rings, Linda's "husband" answers it and has a long, animated conversation with their son. Linda is very excited and looking for any indication of what the conversation is about. When he finally hangs up, Linda asked him what they talked about, and he replied, "Nothing important." Linda and Pearl then asked for comments.

One woman responded that her husband is pretty good about at least telling her who is calling. But many others said that their spouses didn't provide very good support.

Pearl noted that for their hearing loss is top priority issue for those who have it, but it may not be such a big issue for the spouses. So those with hearing loss have to be mindful of that reality as well.

One woman spoke of a time when her son was in Korea and had some problems over there. And her husband had been talking to him, but the woman thought her husband wasn't telling her the truth about her son's situation, that he was sugarcoating it. When she confronted him about it, he avoided the discussion. She finally asked her father-in-law t call her son and find out what was going on, and he gave her a much more accurate description of the situation.

Several people mentioned various technologies that people can use that might enable them to be able to be more successful using the phone. These included CapTel and other specialized phones, the relay services, and induction loops. A couple of people acknowledged that technology can help, but much of it is so cumbersome to use and not very user friendly. A final comment was that refusing to use available technology is a form of reverse advocacy.

Skit Number Two

Linda is a doctor and Pearl her patient. The doctor commits all the classic errors when talking to a person with hearing loss - talking with her back turned, talking with her mouth covered, talking while looking down at something, soft voice, etc. Pearl reminds the doctor of good communications practices, but the reminders have little lasting value.

The discussion started with the comment that the information that a person has hearing loss should be on their chart. Someone brought up the HIPA Act, which disallows the inclusion of that kind of information, because it's an invasion of privacy. Claiming that she can't invade her own privacy, Linda took a red marker to her doctor's office years ago and recorded the fact of her hearing loss on the front of her chart. Another person indicated that Linda is correct. While HIPA doesn't allow doctors to include that information at their discretion, they must include it at the patient's request.

Pearl revealed that she is seeing a new phenomenon in the education system. Kids and parents are actively hiding the fact of the student's hearing loss, because the parents want their kids to pass for hearing! Pearl remarked that the situation is pretty scary, and that it's happening primarily in private schools, where parents are concerned that less-than-perfect kids will have a harder time finding mates, and especially perfect and/or rich mates.

Another person wondered if the parents really wanted their kids to be normal, rather than perfect. She also pointed out that there is so much bullying going on that the parents may be just be trying to spare their kids the ordeal of being bullied.

Skit Number Three

Linda is an employee with a CI. Pearl is her boss. Pearl comes in and starts giving Linda a set of detailed instructions without first getting her attention. When Linda realized Pearl was talking to her she apologized and asked her to repeat what she'd said. Pearl started yelling at her and asking her if she was plugged in today and if she was feeling well. Linda replied that she was just fine. She simply didn't hear her.

One person commented that part of the cause of this condition is that many people speak well and that makes it easier for others to forget that they can't hear. She doubted that culturally Deaf people have this problem.

Another comment is that people with hearing loss often require extra time to put together the clues they do pick up. So that they may be slow in responding even in a good communications situation, because they are still figuring out what was said.

Several people shared stories of their own situations in the workplace. These included difficulty getting accommodations, difficulty getting people to cooperate, and
a boss who expected the accommodation that works for one employee with hearing loss to be appropriate for all people with hearing loss.