YO, DOC, LISTEN UP!

Deaf people do not consider deafness a disability, because their motto is:

They are a cultural minority with a rich language and culture - and therefore their own identity and customs.

At the same time, Deaf people have always been part of society at large.

Ice skating in a village

Deaf painter Hendrick Avercamp is still famous for his beautiful winter landscapes.

Since the 17th century, scientists have been researching the character of gestures of Deaf people, because much of all communication is through facial expressions and body language.

In situations when oral communication is not possible - such as in sports, traffic, or in prayer - Deaf people, as well as hearing people, wave and stick their thumbs up or make gestures.

Teachers were beginning to take Deaf people's gestures more and more seriously and mapped them systematically.

John Bulwer (1606-1656), an English physician and philosopher, attempted to capture vocabulary in hand gestures and body movements and in 1644 published Chirologia, or the Natural Language of the Hand, alongside an accompanying text Chironomia, or the Art of Manual Rhetoric, an illustrated collection of hand and finger gestures intended for an orator to memorise and perform while speaking.

Oorcheck.nl has simulations of different degrees of hardness of hearing. Experience for yourself what it sounds like.

The onset of hearing loss can trigger all kinds of feelings.

Research by neuropsychologist and professor Sophia Kramer shows that hearing loss may be related to dementia. Possible causes include lack of social contact and lack of stimuli. It is therefore of utmost importance that elderly people with hearing loss that cannot be treated use hearing aids.

Many people with sudden or late deafness face an identity issue:

"Who am I now that I have hearing loss?"

They experience job insecurity or loss of income due to hearing problems later in life. This goes beyond the patient, as it affects the entire family situation. Many hospitals lack psychologists and social workers in dealing with hearing loss.

To prevent psychological problems, appointing a team of psychologists and social workers in ENT departments of hospitals is a necessary step.

Hard-of-hearing individuals may also be referred to a so-called "hearing coach".

Hearing aids are designed to help the hard of hearing, but these people will have to learn to hear again. Carefully fitting these aids to the user takes time and training.

Hearing aids amplify all sound, including background noise. It can take weeks or even months for a hard-of-hearing person to get used to hearing with the artificial sounds of the hearing aid. And even then, others will have to make allowances for the hard-of-hearing person.

The hard of hearing find much support in associations and foundations to promote each other's interests. In 1907, the monthly magazine Het Gehoor first appears and in 1910 the Dutch Union for the Hard of Hearing is founded. Today there are also many local associations.

"I am Wies Groeneveld, author of the book 'One and All Ear'. In my childhood I became hearing impaired due to meningitis. Due to otosclerosis, I later became completely deaf. Since 2014, I have had a cochlear implant. That is my salvation. I only pick up sounds in one ear, so I often don't know where sounds are coming from. Troublesome, especially in traffic."

"I live in a hearing environment. It takes a lot of concentration to take in as much as possible. Especially in situations where many sounds are mixed together. I have to pay extra attention to movement of lips and facial expressions. These efforts cost tons of energy."

"Despite the current technical possibilities for muffling background noise, this problem has unfortunately not yet been solved. Sounds I want to hear, I often do not hear or hear them far from optimally. In America, research is currently underway into the possibility of brain-controlled hearing aids, which allow you to hear precisely the sounds that are relevant to you. It's not easy, but with artificial intelligence it seems to be possible in principle, according to the researchers."

"Could something like that also be applied to cochlear implants? And would I still be allowed to experience such a thing?"

Ruben C. was born deaf and received a lot of support from his family. As a child, he wore an Oticon hearing aid with vibration function in a special vest under his clothes. The whole family moved to Rotterdam, so Ruben could attend deaf school there and did not have to leave home.

Ruben now lives on his own, but still receives support from his family.

The famous portrait painter Sir Joshua Reynolds (1723-1792) was hard of hearing from the age of 25, but used an ear trumpet and also made self-portraits as a deaf person.

Sociologist Harriet Martineau (1802-1876) argued that the hearing aid should always be visible so that people would speak clearly.

Some hard-of-hearing people decorate their hearing aids and fashion designers design hearing aids.

HOW DOES A COCHLEAR IMPLANT WORK?

Unlike hearing aids that only amplify sound, a CI bypasses the damaged inner ear and directly stimulates the auditory nerve in the cochlea. It consists of an internal and external part.

With a CI, people who have little or no residual hearing can again perceive, to a limited extent, sounds, noises and speech.

The CI has an eventful history. Some people paint too rosy a picture of the effectiveness of the CI. Others deny the possibilities of the CI or try to dismiss it as a danger to Deaf culture.

It is therefore extra important to present a truthful and realistic picture.

This interactive article is about the CI and how CI wearers (can) experience sound.

Sound perception is not the same for every CI wearer, but these audio clips come closest to what some CI wearers experience.

OPCI is the abbreviation for the Dutch Independent Platform Cochlear Implantation. At the end of 2005, interest groups for the deaf and hard of hearing joined forces in the field of CI. OPCI is a working group that falls under the Platform for the Deaf, Hard of Hearing and TOS.

In Limits to Healing, Stuart Blume gives a personal account of his struggle to accept his child's deafness and, more generally, addresses the ethical issues raised by the application of modern medical techniques.

Children and adolescents with a CI are primarily born deaf or very (progressively) hard of hearing, with the result that language in many of them has not always been well developed.

Adults with a CI have become mostly progressively hard of hearing, or were sudden deaf or late deaf. Many of them are familiar with and have been part of the hearing world.

Experiences with CI

"I underestimated how to deal with it."

Anita van der Weg lives in Rotterdam. Due to a genetic disease, she became hearing impaired. That was difficult and hard for her. "I had a lot of trouble accepting that. People start treating you differently."

On holiday, she met Henk who was wearing a CI. It made her curious. "Surely you can only get one if you are completely deaf?" Anita thought. As it turned out, not so. She entered the process and since 2017 she has had a CI. But she underestimated how to deal with the CI. "I kept my distance from people and fell into depression. It didn't help that the writing interpreter was refused at the psychiatrist's office."

A brain attack also caused her to be unfit for work. But now she works as a volunteer at a sports club. It helps her cope with the grieving process and accept help. "I get up in the morning and the CI goes on. And in the evening it goes off again."

"In the sports canteen, sometimes people have to say things to me three times. With a CI I remain hard of hearing, but now that I accept that, I have become a happier person."

"It really is my buddy."

Jaap van Ewijk lives in Breukelen, is father of two daughters and has four grandchildren. 20 years ago he was struck by sudden deafness in his left ear; six years ago sudden deafness on the right. He had his own business, but he sold it. "I went from 80 hours to zero hours," he said. At a home meeting, he learned more about the CI. "I then went to the UMC in Utrecht and said 'Do me one of those,' but it didn't work that way."

"I never felt bad about having a CI. I was happy to hear something again. I got to learn Dutch with supportive signs (NmG). At the same time, I work with everything: the Roger Pen microphone, spare batteries always with me, streaming TV. The CI has really become my buddy.

"I was required to go to Mental Health and Social Services. 'What am I going to do with these soul-searching people?' I thought. But I learned that you just have to express that you are hearing impaired. That's what I started doing."

"Especially on my bike, because it irritates me that the CI is then so noisy . I was sometimes scolded by cyclists because I couldn't hear them ringing. That's why I put on one of those 'Limited Hearing' signs. Now they catch up to me, turn around and say 'THANK YOU'. Like I'm insane!"

"I now focus on what can be done."

Ingrid Cuppen, 43, lives in Leunen in northern Limburg. At 28, she found out she was hard of hearing. There were already signs, but some things have to happen before you realise it.

"I started with hearing aids: invisible, because I was embarrassed. Until I dropped out at work in 2017. I had been constantly overcompensating. That's when I decided to enter the CI program. It turned out very positive. I got back things in life that I had been missing."

"The CI caused me to look for other work. I now work for Ctalents, an employment agency for the visually and hearing impaired. I focus my attention on what I can do. And when it doesn't work out, that's when I motivate myself to figure out how it can be done; what I feel comfortable with."

"Sometimes I turn my processor (CI) off when things get too busy at home. I have a partner and two daughters. Just taking away those stimuli and giving myself 5 minutes of peace and quiet."

"I like to show my CI because I am proud of it"

Henk van Rees is 66 years old, lives in Voorburg, and is the proud grandfather of two beautiful granddaughters. He enjoys reading and traveling to warm destinations. Henk was hearing and he worked for a large health insurance company. Due to an accident in 1996 he got sudden deafness. 

When Henk got a CI 16 years later, it marked a big change. "In 2013, I started working for OPCI (Independent Platform Cochlear Implantation). I am active as a member of the steering committee, advocate and educator. I follow people through their journey and beyond. I love it when they find work again and manage to keep it despite the obstacles."

"When people talk about something I'm not interested in, I can just turn off my CI. My partner is not into soccer. Then I stream the sound directly to my CI and then it doesn't bother her."

"I still feel a barrier to visualise my hearing problems with pins or signs. I prefer to show my CI because I am proud of it and it makes for great conversation."

Deaf and hard-of-hearing patients experience many unnecessary barriers in healthcare. This contributes to poorer health of deaf and hard of hearing people in general, according to recent research by paediatrician and linguist Anika Smeijers.

Often Deaf and hard of hearing people struggle with physical health problems such as cardiovascular disease, obesity, and high blood pressure. This is due in part to poor communication with doctors and less access to health information. But if doctors and patients are aware of this, care can quickly improve.

Many deaf patients negatively experience their dealings with doctors and other medical professionals. "There were often misunderstandings because we didn't understand each other well. But if I have an interpreter with me or if we use pen and paper, I have no problem."

"I always try to bring an interpreter. But there is too much demand for interpreters and there are too few of them. So my mother, sisters and brother-in-law sometimes do interpretation work."

In 2004, Jaap Huysman had to spend a long time in hospital because of cerebral sinus thrombosis. He was unable to speak, nor could he wear glasses for a long time. Family and nurses kept a notebook to communicate with Jaap. "The small written texts were not legible, the large ones were, which made me very happy. If that notepad hadn't been there, I wouldn't have known what was going on at all."

In 2007 Annemieke Ceton became suddenly deaf in due to a very severe middle ear infection in both ears and meningitis.

"I still have piles of those notebooks that everyone wrote full. It helped me when I suddenly went deaf."

"We started with loose leaves, because yes, I was suddenly deaf. I didn't know any sign language and nobody knew anything about aids."

"The notebooks were completely filled up, especially by the writing of nurses and family members. I think one doctor may have written something."

"So that's kind of special, when you think back to it: doctors were at my bedside, but didn't look at me, and I had a thousand questions. But that's how it was back then."

Deaf or hard of hearing people can easily be dismissed as "difficult patients". But patients with "complex needs" or "a-typical bodies" are made so by the standardisation and efficiency of modern health care.

Patients with hearing differences are precisely an opportunity to critically review audism (hearing is the norm) within healthcare. Let's give space to patients as well as healthcare professionals to actively and flexibly shape care.

Abraham Kaau-Boerhaave (1715–1758), Herman Boerhaave's nephew, studied medicine in Leiden, but suddenly became deaf at age 21.

All sorts of treatments were tried, but his hearing did not return, and he could only be approached in writing or with signs.

Hoping that he would still be cured, he continued his studies in an adapted manner. Since he could no longer attend lectures, he was taught personally by his uncle.

He went to work as a pharmacist and published books. He was appointed professor of anatomy at the Academy in St. Petersburg. Kaau could speak, and when communicating, Kaau was assisted by an assistant.

Kaau complained that after many years he was "not even, but there even put behind," in other words, he was paid less than his colleagues.

Dentist Marten Koning (1956–2021) had his own practice in Amsterdam. When he graduated in 1990, he made history because he was the first deaf dentist in the Netherlands.

Francien Ellermeijer became a pharmacy assistant at 18: "After I took Mr. Louwman's medicine to Mr. Bouwman, customer contact was 'forbidden' to me."

After various studies, she secured several other jobs until her retirement. "I ran into my hearing impairment again and again; I came home every day overtired and often with a headache. And even worse/worse: I didn't dare report my hearing impairment, I was afraid of losing my job."

"How nice it would have been if I had had someone or an agency at the time who could have guided me in making the right educational and job choices that better suited my hearing loss."

As a deaf medical student, Jan-Pieter Govers ran into all sorts of obstacles.

The level of education was underestimated, because deaf and hard-of-hearing students are often thought to be dumber than they are.

The admissions committee for the study of medicine doubted whether the student could later listen properly through the stethoscope and treat patients.

Seeing the stethoscope as an obstacle is ironic, because it is actually a hearing aid, similar to the ear trumpets of old.

Mercèdès Vossenberg-Terlaak ((now rehabilitation physician, Maxima Medisch Centrum, Veldhoven) is hard of hearing and began studying medicine in Groningen in 2006.

"I communicate with people by looking right at them. Furthermore, I can lip-read a little. Shouting is useless, because then the sound gets pretty distorted. During lectures I ask lecturers to wear an extra microphone. With my so-called solo device - a special transmitter and receiver - I can understand the lecturer."

During lectures, she experiences little resistance from lecturers. "So far they respond well," she says. "Everyone is willing to wear the microphone. In that respect, I am not disappointed in anything. And I'm just following the curriculum."

"Giving, getting and taking opportunities"

"I am Jeroen Smits, holding a PhD in hereditary hearing impairment and doing my medical specialty advanced training as a clinical geneticist.

"That sentence may say where I am now, but nothing about my long journey. Which began, after my hearing loss was diagnosed, with enrollment in a school for the deaf and hard of hearing. But because I learned to listen and talk quickly with my hearing aids, it was decided to let me go to mainstream education. Several schools in the area did not want me as a 4-year-old student. In the end, teacher Rita in Zwolle said, 'Just put him in my class and it will be all right,' an opportunity which I seized with both hands.

"Also in high school, university and during internships there were people who did not want to give me a chance from the start, without (wanting to) get to know me. Although many more others saw that I functioned like everyone else, it remained painful and exhausting to constantly fight the naysayers. While I believe that within society, especially the medical field, there is much more need for diversity. Because otherwise, those who are 'different' will always remain in the shadows and get sporadic opportunities.

"Unknown makes unloved.

"I do consultation hours in hereditary hardness of hearing (and other hereditary conditions). Every time parents comes in with a hearing-impaired or visually-impaired child, I always take the time to discuss that, despite the difficult condition, it's still important to think in terms of possibilities. And then I think with them and try to give opportunities.

Will you do the same?"