The HLWork email list recently had a very interesting discussion about hearing loss issues and how people deal with them. It started with the fact that some people don’t seem to take responsibility for dealing with their hearing loss. The discussion quickly evolved to how people get the information they need to assume that responsibility, and concluded with some thoughts on why so many hearing aids end up in the dresser drawer.
The following comments are from Randy Collins (Randy.Collins@NAU.EDU) and Rick Sinclair (firstname.lastname@example.org). Randy is the Outreach/Training Coordinator for the Arizona Technology Access Program and Rick consults on hearing loss issues in the workplace as a Senior Partner at Sinclair, Nicholson and Associates.
HLWork is an email list on Yahoo Groups that focuses on work issues related to hearing loss. To join, send an empty email to HLWorkemail@example.com.
I am curious if any of you experience the same thing. I often get calls from hard of hearing people desperate for help and information. It’s often job related. More often than not they know very little about their own disability, but to hear them talk they’ve seen the light! They need help and they want it NOW! Then as you explain some basic information and provide some resources you get responses like – “Oh good finally someone understands what I’m going through”, “I feel so much better about myself after talking to you”, “Why hasn’t someone told me this before?” Of course the information is basic information known to all of us here but is often unknown – though certainly available – to the hard of hearing hoard out there across America.
As always I ask questions to assess the person and their needs. If the contact isn’t made through email I usually follow up through email if they have it as I can attach sites and information related to their questions. Always I ask only that they let me know what they found helpful and what they found not to be helpful; rarely IF EVER do I hear from them again. Not a thanks, or a follow up or a request for more information, I hear nothing from them. In the situations where I do hear from them again it’s months later when they’ve reached another crisis. And once again they want help NOW! I try to explain that if they’d accept the responsibility of understanding their own disability and make an effort to stay informed (I always mention HOH-LD and HLWork) that their world would be a much easier and accessible place. I try to explain that I am hard of hearing just as they are and that I know from experience that those of us who have taken ownership of our hearing losses no longer live in panic mode. Yes we do have a hearing crisis from time to time but we take it in stride and work it out as best we can using all the resources available to us. The damnedest thing is in most cases they listen but you can tell they aren’t interested. They only want me to fix the problem they face at the moment. They aren’t interested in preventing like situations from happening to them in the future. They don’t appear to be interested in being responsible for handling their own disability. In my experience this happens often. Does it happen to anyone else? Has anyone a clue as to why this happens? Why would people want to continue to live in crisis, to live as emotional train wrecks when the answers to having a much more stable and satisfying life are readily available?
“Here’s the key to handling much of your problems, like the one you’re facing now. Take this key and you’ll experience more freedom and independence and improved self esteem and greater calm in your daily life than you ever thought possible.”
“No thanks, just solve the problem I’m facing now. And hurry please I am in a state of panic, I really need help. Life isn’t fair. This isn’t right. Please help me.”
I would hazard a guess that it is denial. One of the ironic things about government policy here [Ed.: Rick lives in Canada], is that solutions are to be made with the person concerned, but as you say, they don’t have the information. A lot of times, they refuse help. They don’t want a tty on their desk, or anything special done for them, because they are intent on proving they don’t have a disability. Most fear it will hamper advancement (as if their loss doesn’t!). It is hard to deal with something effectively, until you admit it exists.
Our solution is to recommend removal of systemic barriers, rather than individual custom design. If a tty system that looks like IM is available on the computer server and anyone can have it that asks, its not related to the disability anymore, but you will find a lot of people grateful it’s there! Similarly, if videos used in training are open captioned, its amazing how much better senior staff learn, than before. The trick is to pick a system and redesign it with the usual systems design tools, but geared to disability inclusion. Cops with whistles used to direct traffic – now we have stoplights. Nobody realizes the accommodation, but it’s there.
[Ed.: Another list member suggested that audiologists and hearing aid dispensers are crucial in getting this kind of information out to people with hearing loss.]