Birding Through Vision and Hearing Challenges

24 11 2011

Martha Steele

This article appeared in Bird Observer Vol.39, No.5, October 2011. Reproduced with kind permission.

This is a personal story about my journey through stages of birding defined by progressive vision loss and hearing challenges. I have Usher syndrome, an inherited disease that combines retinitis pigmentosa (RP) and hearing loss. RP is characterized by a progression of night blindness, increasing peripheral field loss (tunnel vision), and finally central vision loss, all the result of the retina’s rods and cones dying off. The rate of vision loss varies from person to person, with some individuals nearly completely blind by early adulthood while others have some functional central vision for life. Hearing loss seems to be relatively stable in Usher, although some progressive loss occurs.

I was diagnosed with severe hearing loss as a young child and have worn hearing aids since I was about four or five years old. But through my early adult years, I did not realize that I had any significant vision issue. I could not see well at night, but it seemed normal to me until a day in Colombia, South America, where I was teaching at a junior high school. Two friends noticed how often I bumped into things and wondered why.  One friend spread her arms wide apart and gradually brought them closer together, asking me to stare at her face and tell her when I saw her hands out of the corners of my eyes. Her hands were practically touching before I saw them. At that point, we knew something was wrong.

When I returned to the US, I saw an ophthalmologist in my home state of Vermont. He came into the examination room after a series of tests, looked at my retina, sat back, and said, “I think you have retinitis pigmentosa. You will be blind in ten years, so I would advise that you not try to be a truck driver.” Ok, bad news, really bad news (about going blind, not the truck driver part), stunning and devastating actually. That was back in 1977. I learned shortly after his blunt diagnosis that the vision loss would be much more gradual and that I could expect reasonably good central vision for many years.

Fast forward to May 1989. My friend, Martha Vaughan, was leading early morning bird walks in Mount Auburn Cemetery for anyone at our work place in Cambridge who cared to join her. I showed up for one of her walks without binoculars, of course. She had an extra pair. I have a distinct memory of Martha walking through the front gates, and immediately raising her arm to the sky and exclaiming, “A parula!” I didn’t hear the parula nor any other bird, only her and other birders’ excitement at all of the songs filling the early morning air.  However, I saw warblers, lots of warblers, and I was hooked. I asked Martha where I could get binoculars, and I opted for 10 power Zeiss binoculars because I wanted to see as well as possible, given my vision issues.

Early in my birding avocation, I had good central vision, so I could see birds well if I managed to get binoculars on them. But I could not hear most birds due to their high-pitched vocalizations because my hearing loss was particularly acute. A few species, such as Mourning Dove, have lower-pitched vocalizations that I could hear. I always marveled at the ability of birders to identify birds by sound, a totally unimaginable and unreachable experience to me.

Images depicting visual impairments

My birding strategy was to walk behind other birders, waiting until they stopped and raised their binoculars in a certain direction to find what they heard or saw. I stood behind them, looked in the general direction they were looking, and tried to see some movement before bringing the binoculars up to my eyes.

As the years went by, this strategy worked less and less as my vision continued to decline. My peripheral field became more and more narrow, making it increasingly difficult to detect movement of small, distant birds. I tried to contain my frustration at not being able to locate a bird despite everyone’s best attempts to describe where the flitting bird was. I relied more and more on someone, most recently my husband, Bob Stymeist, getting the bird in a scope.

Today, I can’t recognize faces five feet away, never mind a dark bird on a dark branch in a dark understory 25 feet away. Going blind may be one thing for a birder, but it is even more challenging for me because I never could hear the birds either. So why do I bird? The simple answer is that the birds are extraordinarily beautiful and I am constantly profoundly moved by their ability to survive, whether during migrations over thousands of miles or finding habitats sufficient for their needs. I cannot look at a Blackburnian Warbler and not say, “good luck, little fellow” or a Black-throated Blue Warbler and not marvel at its beauty. But one thing I never could enjoy was bird song. Until now.

I would walk behind Bob, who barely looked up from the ground, and wonder why isn’t he looking around to find birds? Suddenly, he would stop and locate what he had just heard. Or sometimes he would simply pull his notebook out, write down “CAWR,” and move on, never missing a beat. I always thought that strange, though I was well aware that birding is largely by ear.

With the continuing decline in my vision, I decided to explore whether I should get a cochlear implant, not for bird songs, but to better understand speech. Hard-of-hearing people use lipreading extensively to help them understand what is being said. I can no longer see well enough to lipread, so I knew I would lose more ability to understand speech, a sort of double whammy. After a lot of research, encouragement from other cochlear implant recipients, and evaluations at the Massachusetts Eye and Ear Infirmary, which found me to be eligible to receive an implant, I took the plunge.

The surgery involves drilling a small hole in the mastoid bone of the skull directly behind the ear and inserting an electrode into the cochlea, or inner ear. Then, an indentation is made in the mastoid bone to set the main receiver of the implant on the skull before the incision is closed up. The external component, the processor, is like a minicomputer that can be programmed and updated with new software as technology improves. A wire extends from the behind-the-ear processor to a magnet that attaches to the internal receiver. Sound is received by the microphone in the processor, digitized, transmitted via the wire/magnet to the internal receiver, converted to electrical impulses, sent to the electrode, and the electrical impulses are then sent to the auditory nerve, which goes to the brain.

The surgery usually destroys all residual natural hearing in the implanted ear, leaving one completely deaf in that ear. So, the decision to do the implant cannot be taken lightly. There is no guarantee that one’s hearing will be better after the surgery than it was before, and indeed, it may be worse. But I knew my hearing was getting worse anyway, and I knew with the declining vision, this would become more problematic with time, so the choice in the end was clear.

On April 9, 2010, I had surgery for a cochlear implant in my right ear (the left ear continues to have a hearing aid). The surgery was a day surgery. Forty-eight hours later, the bandage came off, and I was back at work in a week. On April 29, the implant was activated.

When the implant was first activated, everything sounded the same and very tinny or high-pitched. I couldn’t decipher distinguishable words. It takes time and practice for the brain to learn the new sounds and for the tinny sounds to eventually become words and then sentences. Within a couple of weeks, I could understand speech vastly better than before the implant, and time would only show continuing improvement. The implant enabled me to hear, for the first time, many consonants that are high-pitched and beyond many hearing-impaired people. I could actually hear the difference between Chicago and change; tap and map; go and toe.

What I did not bargain for was BIRD SONG. I was stunned, absolutely stunned, by the fact that I was hearing birds everywhere. Not just a little, but a din of bird song. How have you all put up with House Sparrows all your birding lives? They are so annoying! I had never heard them. How were you able to tell the difference between a Red-eyed Vireo and a Blue-headed Vireo, a Scarlet Tanager and an American Robin? To my computerized sense of hearing, these are still challenging, but I think I am getting a little better at it.

Just imagine if you could not hear bird songs, how much more difficult and perhaps less enjoyable birding would be for you. I now know how you might feel. Not long after my implant was activated, a Kentucky Warbler showed up at a small park near Boston College in Chestnut Hill. Bob and I went over to try to see it in the early evening hours on a weeknight. We were alone in a small oasis of dense vegetation, tall trees, small ponds, and thick underbrush looking for the bird. Then it started singing. The song echoed in the forest, sublime, melodic, and all encompassing. I couldn’t move. I didn’t care to see the bird. I only wanted to stand there, close my eyes, and listen. For those of you who know me, you can probably guess what happened next. Yes, I cried. Birds, especially the little songbirds, have a tendency to move me to my core, but the added dimension of hearing them left me feeling overwhelmed with joy.

Since then, Bob and I have gone on many walks as I try to learn the songs with this bionic ear. I am hearing songs while the car is moving at 40 miles per hour; I am hearing them from some distances; I am hearing them when songs are on top of each other; and I am hearing songs that some of you, because of age, perhaps can no longer hear, such as the Brown Creeper, Blackpoll Warbler, Blue-gray Gnatcatcher, or Golden-crowned Kinglet. Every time I hear a Northern Parula, I am reminded of that first image of Martha raising her arm to the sky, as I, too, raise my arm and, for good measure, do a little hop, to give body language to the song’s rising zeeeee-up

In June 2010, Bob and I visited Ed Neumuth in Washington, Massachusetts, for a wonderful visit and day of birding at October Mountain. We got up at 5:00 a.m. and Ed was the expert guide for a tally of 76 species, including Mourning Warbler, which I caught a brief glimpse of. But what I most remember about that day, and probably always will, was a moment when a Winter Wren was singing its heart out very close to the road. As we stood there marveling at its song, Ed related the story of a birding friend who was dying of brain cancer. His friend wanted to go birding one last time. Ed took him to October Mountain. They were stopped at one place when suddenly a Winter Wren perched on a bare branch just yards directly in front of them and started singing. The bird sang for several minutes, and the men were mesmerized. When it flew away, Ed’s friend turned to him and said, “Let’s go home now; nothing can top that.”

Nothing can top what the cochlear implant has given me. I can walk in the woods looking down at the ground—like Bob and all of you—and know that it is quiet or know that a Black-throated Green just sang. I am satisfied, deeply satisfied, to just hear the bird. I feel no urgency now to see the bird, and perhaps strangely, no particular loss at not being able to see most birds any more. It is the song that now gives me immense joy, it is song that now enables me to more deeply share my passion for birds with Bob and my birding friends, and it is song that now connects me to the birds that I love. Yes I, too, was mesmerized by the beautiful song of a Winter Wren on October Mountain. Good luck, little fellow.

Martha Steele is a past editor of Bird Observer and lives in Arlington with her husband, Bob Stymeist. She is a native Vermonter, and she and Bob frequently bird the Northeast Kingdom of Vermont, including competing in the 2011 Vermont County Quest (sponsored by Birds&Beans) for most bird species seen in specific counties (in their case, Essex, Orleans, and Caledonia counties). Martha has spent most of her professional career at the Massachusetts Department of Public Health. In addition to birding, she volunteers in the Boston chapter of the Foundation Fighting Blindness and serves as the chair of the October 29, 2011, Boston VisionWalk. Martha and Bob’s team, Strides for Eagle Eyes, has raised nearly $60,000 for research on blinding diseases since 2009.

HUDSONIAN GODWIT BY DAVID LARSON

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My Song

12 06 2011

This film demonstrates how I felt growing up, with no one understanding my communication needs. I was given a FM radio system for school and told to get on with it. My social needs were totally disregarded. I know too well, the farce of pretending to understand what’s being said, then being told by my family ‘You can hear perfectly well when you want to’. Being unable to sign, I wasn’t part of a deaf culture either – heck, I didn’t even KNOW such a thing as a deaf culture existed. When I first got to know other deaf people, through Friends for Young Deaf People, the other young deaf people told me that I’m not deaf as I didn’t sign (oh, the irony!).  I just felt so stuck between the deaf and the hearing.  It’s bad enough when hearing people don’t understand and won’t meet you halfway, but when deaf people won’t meet you halfway either, that’s a real kick in the teeth. Deaf people who won’t accept you as a deaf person and deaf people who say you shouldn’t be using sign language – both are reprehensible. We’re all entitled to acceptance and to communicate in our chosen way.

Now that I can sign (not fluent though), lipread and hear, I can live my own life in my own way. I have great friends from both cultures – who can hear, lipread, and sign – and I wouldn’t change this for anything.

Thanks to Billy and Charlie for giving us another blinder!





White elephants

17 02 2011

Photobucket

Today I had an interesting conversation with someone who is as passionate and annoyed as I am about discrimination against hearing impaired people and limited access to employment.

This is an issue close to my heart. Years ago, I was fresh out of university and looking for a job. I didn’t know about Access to Work as no one had thought to tell me, not even the university disability officer. I had no textphone – I didn’t know about those either. When you’re deaf, access to information is much tougher – a deaf person needs to be signposted to it rather than be expected to hear it from someone else. I clearly remember the frustration of applying for jobs and not getting anywhere.

After a few weeks of this, I had a brainwave. I applied for six jobs and straightforwardly stated I am deaf and unable to use the phone. I applied for another six jobs and omitted any reference to deafness in those applications – I even included my home phone number.

The first batch of applications resulted in a deafening silence. As I had come to expect 😦 The second batch, to my complete astonishment, had every single employer calling my home, extremely keen to interview me. The problem was, this meant my mother had to pick up the phone and take a message, and explain they had to email me as I couldn’t hear on the phone. Result? They all dropped me like hot cakes. Yeah …. that’s a great one for confidence building, isn’t it.

It pays to be very careful what you tell employers and how you say it – you need to offer solutions to your deafness as well as your skillset. For far too many hearing people, hearing loss is simply something they don’t know how to deal with. It’s best left until the interview stage where they can meet you in person and you can explain the situation, and help swing the interview your way with your brilliance.

But hey, we have Access to Work. Unfortunately, ATW keep restricting and cutting access, which seems to me to be an oxymoronic state of affairs. “No You Cannot Have 40 Hours a Week of Communication Support – It’s Far Too Expensive” – even though I work 40 hours a week. Where is *my* access to communication? How would an ATW adviser like to be told “Your Phone is Too Expensive, You Can Only Have it for 4 Hours a Week, and You Have to Re-Apply for it Every Two Years”?!

Arrggghhh.

Some employers don’t really understand that people with less than fully functioning ears are just as able as people with fully functioning ears – just a few adjustments are needed. Yes, this *still* happens in the UK today! The biggest barriers seem to be attitudes and cost. The biggest solution seems to be raising awareness and enabling a decent, varied, and flexible provision of communication support.

Now, don’t get me wrong, I don’t expect other people to understand hearing loss and all the attendant issues, problems, and solutions ….. but I *do* expect people to be open minded enough to listen and take information on board. If they provide a service to the general public, then they have a responsibility to be reasonably accessible to the public and to find out about accessibility – and implement it. I have seen too many examples where this has not happened. You can’t just say “It’s not my problem”. A responsibility is a huge, huge thing. But sometimes it is the white elephant in the room. When you’re at a disadvantage in society, this white elephant is really, really, really, big.

So how about this one …. the government, in all its wisdom, laid down regulations on 10 February for a new work capability assessment for employment and support allowance (ESA). This will become effective on 28 March 2011. This means deaf people who can read and write will not be eligible for ESA and will have to claim Job Seekers Allowance (JSA). Just because a deaf person can read and write, doesn’t mean the barriers to employment have disappeared. I suspect, as blind people who can get around safely with their guide dogs are no longer eligible for ESA, deaf people with hearing dogs will no longer be eligible either. It’s not logical to simply make cuts in support and then not provide a replacement for that support. In any case, the current support is inadequate – it’s not the right kind of support. There should be mentors, role models, information hubs etc. Not just a bit of money thrown at you and a DEA (government Disability Employment Adviser) who just doesn’t ‘get it’. That’s before you  even secure an interview in the first place. It’s all kind of a mess, isn’t it?

Whoops.  Can someone poke our lovely new government and make them think again?

Or better still – put some deaf and disabled people into senior positions so that they can use their knowledge and experience for the benefit of the rest of us.

More information on the new ESA is at Benefits and Work





Inner ear cells have been created in lab

14 05 2010

Hearing could be restored to deaf people using artificially grown ear cells. Scientists have created specialised ear cells in the lab for the first time.

A team from California’s Stanford University were led by Professor Stefan Heller. They have found a way of creating, in a petrie dish, the hair cells within the ear which detect vibrations and convert them into sound. This cure for deafness may be only ten years away. Fancy it?

Further details on the story can be found here.





Antibiotics cause deafness

6 02 2009

The Independent reports on antibiotics being a cause of deafness in premature babies and children. Check it out on this link.