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."