John Cotter’s memoir “Losing Music” is full of unanswered questions. The cause of his loss may be Meniere’s disease, but no one really understands Meniere’s and he may not have it. His disabling vertigo may be related to migraine, or it may not be. His tinnitus drives him crazy, then goes away, and inevitably returns.

Hearing and vertigo loom large, and come close to defining his life, as they did mine when I wrote “Shouting Won’t Help”. His descriptions of vertigo are so accurate that just reading them nearly gave me vertigo as well. But it is the loss of music that is the undercurrent of the book: “What I feared losing—the catastrophe that the roaring shadowed forth—wasn’t just a series of structured sounds, but the world those sounds created, a world you could live inside: Bach on a snowy afternoon, hard blues on a long night’s drive, the background mood in a restaurant or at a party… Music is color… You feel it on your skin.” Cotter is not a musician, he’s a listener, and shares his eclectic passions with the reader.

Cotter’s hearing loss takes a form that is new to me. He has hearing aids but often hears better without them. His hearing fluctuates – more dramatically than the wobble I sometimes experience. Not only can he hear from time to time without hearing aids, he also sometimes cannot hear even with them.

The book is loosely structured and swirls around Meniere’s, much as Meniere’s swirls around those who suffer from it.  Hearing comes and goes, tinnitus washes in and recedes, vertigo is always in the wings, hovering. A whirling to the right, then flat on the bed or the floor or whatever is closest, eyes closed, don’t try to turn over. Figure out where vomiting will be the least offensive.

Cotter is a lyrical writer. “I had one good ear that afternoon, and it let me hear [his friend’s] voice. What I also heard: the brush of my feet in grass and dry leaves and the pops of breaking twigs. Wind: the stop and start of it you can’t predict, or control. Skittering insects, chirps of forty birds, fifty clicks, chitters, squees, throat clearing, a rusty hinge squeal, a piping, pinched flutes, calls like a finger on a wet glass, return calls. The green insect almost too small to see—you couldn’t make out its shape, just a speck of green.” 

“Losing Music” is a thoughtful account of life-altering events, and a probing into a medical mystery, mostly unsolved. There are detours, some of them lengthy. Jonathan Swift, who may have suffered from Meniere’s, gets a chapter to himself. The title, “The Hundred Oceans of Jonathan Swift,” refers to Swift’s use of water metaphors to describe the sounds in his ears — oceans, or the “noise of seven Watermills.” The occasional brutal fact pops up: The British explorer John Speke, convinced that the buzzing in his ear was an insect, stabbed himself in the eardrum to get rid of it. The Mayo Clinic does not come off favorably.

I do hope readers don’t accept his assessment of cochlear implants. Someday, he says, he’ll get cochlear implants “installed.” He isn’t hopeful. “Implants aren’t like real sound – for the majority of users, they’re far worse than real sound — so I can’t help but dread the day.” I think the vast majority of cochlear-implant users would disagree. He’s right that the moment of activation can be jarring. But with time and practice, the brain comes to hear the digital cochlear-implant signals as normal sound. They do not do as well with music, so Cotter’s fears are not entirely unfounded. But I know dozens of people with cochlear implants, including professional musicians. I don’t know anyone who regrets the decision to get them.

A reader of my previous post pointed out that the Times paywall makes the article itself inaccessible to many. Here it is, copied and pasted. Please go back to the previous post for the challenges I faced, as a person with a disability, in reporting it.

Visiting a museum is still a challenge for someone with a disability. The Museum of Modern Art has been in the forefront of change by providing programs and training.

By Katherine Bouton

April 25, 2023

4 MIN READ

This article is part of our Museums special section about how art institutions are reaching out to new artists and attracting new audiences.

Imagine encountering Umberto Boccioni’s 1913 bronze sculpture “Unique Forms of Continuity in Space” without being able to see it. A little over three and a half feet tall, the abstract striding figure is all sharp edges and curves. On a Sunday in early March at New York’s Museum of Modern Art, a group of about 100 people, most of whom were blind or had low vision, put on thin plastic gloves and felt this and other sculptures. The tour was part of a celebration of 50 years of touch tours at the museum.

Abigail Shaw, who has been blind since birth, ran her hands over and around Boccioni’s sculpture, unable to identify at first what she was feeling. Jamie Mirabella, a teaching artist, told the small group the name of the artist, who was part of the Italian Futurist movement, and the name of the sculpture.

But it wasn’t until Ms. Mirabella mentioned the date, which Ms. Shaw recognized as a time when industrialization was influencing modernism, that she began to “see” the piece and to understand that it was a figure in motion. “I could feel the energy,” she said, and “understood the artist’s attempt to reflect what a body looks like moving through space.”

Kevin Beauchamp, who has what he described as a very small field of “useful vision,” also commented on the Boccioni. Like

“I wasn’t coming up with anything to help me figure out what this might be.” When Ms. Mirabella explained that it was a human figure, Mr. Beauchamp said, “I began piecing it together; this is the leg, the back leg that he’s pushing off with, and this is the thigh that he’s moving forward. I was able, once I knew what it was, to figure it out.”

Mr. Beauchamp, who was there with his partner, Howard Orlick, who is legally blind, said the MoMA tour was one of the best he’d participated in, in part because patrons were taken over the course of the afternoon, rather than in a single-timed event. Each small group was guided around the museum from one painting or sculpture to another, where they were allowed to touch the sculptures or heard descriptions of paintings.

Almost 33 years after the signing of the Americans with Disabilities Act, going to a museum is still a challenge for someone with a disability. MoMA has been in the forefront of change; and in addition to providing programs for people with a range of disabilities, the museum also offers training to other institutions.

Some disabilities are easier than others to accommodate. Touch tours are fairly common. Ms. Shaw and Mr. Orlick both mentioned the Tenement Museum, which provides a scale model for people who are blind to examine before they head into the museum, and the Intrepid Sea, Air and Space Museum, which offers a tactile guide with raised images of some exhibitions and objects. For people who are deaf, tours in American Sign Language are inclusive, and for people who are deaf or hard of hearing, captioned audio guides and videos are essential; for those with hearing aids or cochlear implants, hearing-loop technology clarifies sound. Options are usually listed on a museum website’s accessibility page.

More challenging is accessibility for people with cognitive impairment, autism or sensory sensitivities. The Metropolitan Museum of Art, MoMA, the Jewish Museum and the Whitney Museum of American Art are among New York City museums offering gallery tours combined with studio sessions for adults and children on the autism spectrum. Meet Me at MoMA, a project for people with Alzheimer’s and other types of dementia, has inspired similar programs around the country. Guidelines for accessibility for people with cognitive disabilities include universal pictograms alongside written information.

MoMA also offered audio tours on that Sunday afternoon, part of its Art inSight program for people who are blind or have low vision, now in its 20th year. Annie Leist, a museum staffer and an artist and photographer herself, took a group to a brightly colored abstract diptych called “Wind and Water,” painted in 1975 by Suzanne Jackson.

Commissioned by Sonny Bono, of the musical pair Sonny and Cher, it reflects the psychedelic culture of the time and the spiritual symbolism of 1970s Afrocentrism, Leist explained. As she encouraged the group to contribute their own observations, the shapes of figures dancing across the canvas emerged, a purple bird, a fish in the dark at the bottom. “It’s a little like reading clouds,” Ms. Leist said.

Not everyone was able to see the painting. Mr. Orlick, who is also colorblind, said that the muted pastels meant that the painting was essentially just white for him. A painting with strong color contrast is more accessible. “If someone says ‘this is a deep blue sky,’ that means more to me than this is a blue sky,” he said. “It’s like watching a black and white movie. I understand the color cognitively instead of perceptionally.”

“MoMA stands out as an institution that shows a deep commitment to their disabled visitors,” Kirsten Sweeney, co-chair of the steering committee for New York’s Museum, Arts and Culture Access Consortium (MAC), said in an email interview. (She is also accessibility and inclusion manager at the Cooper Hewitt, Smithsonian Design Museum.) Ms. Sweeney praised MoMA’s training programs, which include a series of videos filmed while the museum was closed during the pandemic, in which people with disabilities talk about their museum experiences. These videos are used to train staff including security, retail, and of course guides, and are shared with other cultural institutions.

MAC runs training programs for museum personnel and includes an events calendar on its website featuring accessible arts and culture events in the city.

New York’s Mayor’s Office for People with Disabilities (MoPD) has a comprehensive guide to museum accessibility on its website.

For a more personal look at museum access, there is the website and podcast Accessible Travel NYC, created by Lakshmee Lachhman-Persad. She and her sister, Annie Lachhman, who uses a wheelchair and has dystonic cerebral palsy, share their own New York adventures. They cover a wide range of topics, often with humor.

Katherine Bouton, a former editor at The New York Times, is the author of several books on living with hearing loss.

One of the most interesting parts of my role in New York’s hearing-loss community is interacting with the larger disability community. Through committees like the MTA’s Advisory Committee for Transit Accessibility (ACTA), I see first-hand the obstacles that people with other disabilities face.

When The New York Times asked me to write about how New York City museums serve people with disabilities, I accepted with enthusiasm. I knew about accommodations for people with hearing loss, but I had no idea how much else was offered. New Yorkers have a huge range of disabilities, visible and invisible, and many are addressed by our cultural institutions.

The article is online now and appears in print in the Sunday April 30th paper. It’s called  Making Art Accessible for All, although more accurately it would be “Trying to Make Art Accessible to All.” It’s a challenge.

On Sunday March 12, I joined a group of people who were blind or had low vision for an afternoon of activities designed especially for them, which would set the scene for looking at the larger issues. I worked for The Times for most of my journalism career, both writing and editing. In 2009 I took a buyout shortly after I got a cochlear implant, because I couldn’t hear well enough with my new cochlear implant to function fully in that noisy and competitive workplace.

When the Times asked me to write this article, almost 14 years later, I felt confident about going back out into the reporting world. I hear well with my hearing aid and cochlear implant, and I was eager to meet new people and try out new situations.

The reporting went well, thanks to technology. The Innocaption app on my smart phone allowed me to do telephone interviews. Google Meet interviews were captioned. A couple of in-person interviews were made easier by the Otter app. Innocaption and Otter also provided me with a transcript to review later. Text to voice technology allowed the blind to read my emails. It was exciting to see how far technology has taken us.

Ironically, there was one situation where my disability tripped me up, and that was at MoMA’s afternoon event for the blind. The museum was packed with happy chattering people and the noise bounced off the walls and ceiling and floors – and even off some of the art. Otter was as overwhelmed as I was by the ambient noise, and I ended up hearing very little. I could have asked for a CART transcriber to accompany me, but I didn’t think of it. It’s always the things we don’t think of that are the problem.

Luckily I was able to follow up with phone calls and emails and all was well. But for a brief period that afternoon, I was reminded that my hearing loss is a disability. Sometimes I forget because life has gotten so much easier thanks to technology and accessibility.

A note about the photo: Francesca Rosenberg is now MoMA’s Director of Access Programs and Initiatives, and oversees all of MoMA’s wonderful accessibility programs. This photo was taken in 1995.

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For more about living with hearing loss, you can also read my books:

I’ve been open about my hearing loss ever since my first book was published 10 years ago. “Shouting Won’t Help: Why I and 50 Million Other Americans Can’t Hear You” was a memoir and it announced my theretofore secret hearing loss to the world. Years of shame and denial didn’t disappear in an instant. It was a learning process. But the more I talked about hearing loss, the easier it became.

I forget sometimes how hard it was to become honest. In a recent HLAA meeting (which I wrote about last month) people shared their challenges, especially those resulting from the pandemic and, specifically, masks. Maybe you’re so new to hearing loss that you don’t know about HLAA. In that case, here are some basics. (And then check out our chapter at hearinglossnyc.org.)

Start with friends and family, trying out your lines. Speak up when you can’t hear or understand. It’s easier to start gradually. “Sorry, what? I think I have wax in my ears.” When I was young enough not to be thought old, I’d use my hearing loss as a kind of flirtation, leaning in to the speaker to hear better while murmuring something about “not hearing that well.” I never used the term hearing loss! 

Once you’ve taken that first step, move on….. “Mary! So great to see you. I can’t hear a thing today… my hearing is going.” Next time go a little further: “Mary, I left my hearing aid at home. I really want to talk to you. Can you email me?” 

Soon you’ll discover how easy it is to start every conversation with the fact that you can’t hear. Many many people have some degree of hearing loss — one in five, in fact. So your statement makes you just one more of them.

Ask questions you’ll understand the answer to. Instead of: “Mary, hi! are you still writing for the magazine? [Yes? No?] Are you traveling? Doing field research? What? Oh, New York. Yes. Huh. Yes. Well, congratulations.”

Try: “Mary! I haven’t seen you in months. I’d love to talk but my hearing is getting pretty bad. I have hearing aids but you never know…. How are you? What are you doing these days? Can you email me? I’d love to hear about your work.” 

And so on. Acknowledge who you are. Share your difficulties. People are surprisingly understanding, once you put yourself forward and say exactly where you’re coming from. 

It’s a big step. Ease into it. But very soon, it will pay off.