YO, DOC, LISTEN UP!

An exhibition about Deafness, hardness of hearing, and inclusive healthcare

illustraties van oren en handen, titel tentoonstelling hoor eens even!

WELCOME IN THE WORLD OF THE DEAF AND THE HARD OF HEARING

Sit back and take a good look around you. Close your eyes. Open your ears. What all do you hear? What is other people's hearing?

Deaf

Deaf people do not have an auditory disability, because they don't use oral communication. They are a cultural minority group in the Netherlands and have their own visual language: Dutch Sign Language.

Hard of hearing

Hard-of-hearing people experience a loss or distortion of sound. As a result, their hearing environment can be very diverse and lead to obstacles in communication. Hearing aids help, but are not a cure. Despite hearing aids or cochlear implants, people with late or sudden deafness remain hard-of-hearing in varying degrees.

Hard of hearing vs Deaf

Deafness and Hard of Hearing do not form a unified whole. The world of Deaf and hard of hearing people is diversely composed.

What actually is Deaf culture?

What barriers do deaf and hard-of-hearing patients encounter in healthcare?

Can a doctor also be deaf or hard of hearing?

illustratie van drie gebarende mensen, titel dovencultuur & gebarentaal
Mannequinhoofd met twee handen die 'gebaren' uitbeelden.

DEAF CULTURE & SIGN LANGUAGE

deaf or Deaf?

Did you know that there is an important difference between 'deaf' as severe hearing loss, and 'Deaf' as identity?

People who are Deaf have developed their own identity and culture: Deaf culture. Knowledge of Deaf culture is important for everyone, but especially for a good doctor-patient relationship and effective care.

A HISTORY OF DEAF CULTURE

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

‘We can do everything, except hearing’

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.

Painting of Ice skating in a village, by the deaf painter Hendrick Avercamp, ca. 1610

Ice skating in a village, Hendrick Avercamp, c. 1610. Rijksmuseum, Amsterdam.

Ice skating in a village, Hendrick Avercamp, c. 1610. Rijksmuseum, Amsterdam.

Ice skating in a village

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

Illustrated print of the hand alphabet of L'Epee and Guyot.

The hand alphabet of Abbé de l'Epée and Henry D. Guyot.

The hand alphabet of Abbé de l'Epée and Henry D. Guyot.

Engraving of the gestures and signs by John Bulwer, ca 1650

The hand signs of John Bulwer, engraving ca. 1650

The hand signs of John Bulwer, engraving ca. 1650

An example from the illustrated hand alphabet book by J.L. Mörser

Notebook with hand alphabet of J.L. Mörser, c. 1800. Click on the image to view the entire notebook!

Notebook with hand alphabet of J.L. Mörser, c. 1800. Click on the image to view the entire notebook!

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.

Een tekening van het scholencomplex met het monument voor  Professor Guyot aan de Ossenmarkt te Groningen.
Tekening van de binnenkant van het  Doveninstituut van Guyot waar je leerlingen in een lokaal ziet. Linksboven een prent van Guyot zelf. Linksonder een certificaat voor het 50 jarig bestaan van het instituut.
Foto's van Dovenscholen toen en nu.
Een tekening van het scholencomplex met het monument voor  Professor Guyot aan de Ossenmarkt te Groningen.
Tekening van de binnenkant van het  Doveninstituut van Guyot waar je leerlingen in een lokaal ziet. Linksboven een prent van Guyot zelf. Linksonder een certificaat voor het 50 jarig bestaan van het instituut.
Foto's van Dovenscholen toen en nu.

In 1790, rev. Henri Daniel Guyot opened the first Dutch School for the Deaf in Groningen.

From the early days of Deaf education, the children learn together in Sign Language. When they leave school they keep in touch, find jobs and marry.

Over time, several special Doven schools have been established in the Netherlands. In recent years, these have merged into Kentalis and Auris.



The Deaf from the various Deaf schools form their own community and develop their own culture.

"Un-dumbing"?

Watch video clip "The Deaf" from De Hokjesman (VPRO, 2014).

Het verbod op gebaren en een videofragment van De Hokjesman, “De Doven” (VPRO).

In 1880, the International Congress on Deaf Education was held in Milan.

The (hearing) teachers were of the opinion that sign language was getting in the way of integration. It was decided that Deaf children should learn to speak.

Until 1980, the natural language of Deaf people was suppressed. Deaf people continued to sign among themselves, but not in contact with hearing people.

Once signs were allowed in the 1980s, Dutch Sign Language (DSL/NGT) developed rapidly. Like all other languages, NGT has its own grammar and regional variants (dialects). Poetry and sign language artists also exist.

The Dutch parlement officially recognised NGT in 2021.

Today there is a much greater visibility of Sign Language.

Dutch House of Representatives support the NGT recognition law / Van Dale Basic Dutch Sign Language Dictionary / Sign language interpreter at press conferences / film CODA, Oscar winner 2022 / Sign language interpreter NOS (Youth) News / Strictly Come Dancing winner Rose Ayling-Ellis

Dutch House of Representatives support the NGT recognition law / Van Dale Basic Dutch Sign Language Dictionary / Sign language interpreter at press conferences / film CODA, Oscar winner 2022 / Sign language interpreter NOS (Youth) News / Strictly Come Dancing winner Rose Ayling-Ellis

Next Generation Speaks x Sencity Festival: (Un)spoken Lab

Advocates

Click on the image to watch an excerpt from the documentary "Sam Pattipeiluhu" (Swedoro, 2021)!

Click on the image to watch an excerpt from the documentary "Sam Pattipeiluhu" (Swedoro, 2021)!

One of the advocates of the Dutch Deaf community was Sam Pattipeiluhu (1950-1996). A Deaf teacher and remedial educationalist, he was the founder of the teacher/interpreter training in Dutch Sign Language (NGT).

Since the 1980s, Sign has been allowed to be used in education. Since 1995, bilingual education has been introduced in Deaf schools.

Books by Peter van Veen, 'Rebel in a Silent World' (2020) and Johan Wesemann, 'Virtual Deaf Village' (2020)

Books by Peter van Veen, 'Rebel in a Silent World' (2020) and Johan Wesemann, 'Virtual Deaf Village' (2020)

Another advocate is Johan Wesemann (1944). He advocates for the emancipation of deaf people. He became a rebel in his struggle against the hearing, the power of institutions for the deaf, and political reluctance.

He dedicates himself with heart and soul to the deaf: for their culture, sign language and for equality in society.

Photo of Lianne Westenberg (2022)

Photo of Lianne Westenberg (2022)

Lianne Westenberg is also committed to Deaf Culture.

"My name is Lianne and I graduated as an anthropologist. I also work as a museum guide at Amsterdam Museum and The Hermitage where I give guided tours in sign language. I work on Deaf history in the working group Deaf Cultural Heritage of Dovenschap."

illustratie van hoe geluid bij slechthorenden binnenkomt, titel slechthorendheid
Mannequinhoofd met gehoortoeter, een acoustisch gehoorapparaat, uit c. 1900.

HARDNESS OF HEARING

Away with our timidity!

Forms of hearing loss can occur due to illness, accident, prolonged exposure to loud noise and old age..

How do people experience hardness of hearing? And what solutions have they come up with to overcome obstacles in communication?

AWAY WITH OUR TIMIDITY!

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

Example of one of the test questions at oorcheck.com

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

Mourning the loss of hearing

Pain caused by persistent ringing or other noises in your head (tinnitus)

Loneliness and feelings of exclusion, because you don't get jokes, for example.

Shame for misunderstandings

Exhaustion due to having to pay extra attention to facial expressions and movement of lips

Frustration or embarrassment at having to continuously say "excuse me?"

'Hearing is more than just listening: it involves cognitive functions' / Click on the image to read the article in Trouw about Professor Sophia Kramer's research!

'Hearing is more than just listening: it involves cognitive functions' / Click on the image to read the article in Trouw about Professor Sophia Kramer's research!

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.

Regina Bijl works as a Hearing Coach in the Netherlands and Belgium. Click on the image to find out more!

Regina Bijl works as a Hearing Coach in the Netherlands and Belgium. Click on the image to find out more!

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.

Book by Dutch Association of the Hard of Hearing (predecessor of Stichting Hoormij/NVVS) 'Away with our timidity' (2008)

Book by Dutch Association of the Hard of Hearing (predecessor of Stichting Hoormij/NVVS) 'Away with our timidity' (2008)

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.

Foto van Wies Groeneveld / Klik op de afbeelding om naar het boek te gaan!

Foto van Wies Groeneveld / Klik op de afbeelding om naar het boek te gaan!

"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."

Klik op de afbeelding om het artikel te lezen!

Klik op de afbeelding om het artikel te lezen!

"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?"

Museum Rotterdam

Museum Rotterdam

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.

Zelfportret van Sir Joshua Reynolds (TATE)

Zelfportret van Sir Joshua Reynolds (TATE)

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.

Portret van Harriet Martineau Margaret Gillies (Scottish National Portrait Gallery, Edinburgh)

Portret van Harriet Martineau Margaret Gillies (Scottish National Portrait Gallery, Edinburgh)

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.

Image of actor and activist Chella Man's jewelry collection in collaboration with fashion brand Private Policy

Image of actor and activist Chella Man's jewelry collection in collaboration with fashion brand Private Policy

Image of Deafmetal Hearing Device Jewelry

Image of Deafmetal Hearing Device Jewelry

illustratie van een ci dragend persoon die de ander nog steeds niet goed kan verstaan, titel cochleair implantaat
Mannequinhoofd met een cochleair implantaat.

COCHLEAR IMPLANT

The cochlear implant (CI) is a highly advanced technology aimed at people for whom ordinary hearing aids are not good enough.

Does that make it the panacea for all types of hearing impairment? Is it a threat to Deaf culture?

How do people actually experience the CI?

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.

Article in Ukrant ‘Het krast, het gromt, het grauwt’ (2019)

Article in Ukrant ‘Het krast, het gromt, het grauwt’ (2019)

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.

Visit OPCI for trustworthy and recent information about CI

Visit OPCI for trustworthy and recent information about CI

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.

Stuart Blume, Grenzen aan genezen (2006)

Stuart Blume, Grenzen aan genezen (2006)

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.

"Understanding speech in noisy environments remains difficult. A hearing aid is nice because it brings speech closer."

"It is still nice to have talk shows with subtitles."

"Music sounds pleasant to half of CI wearers....

to the other half it sounds out of tune."

"Social contact has improved thanks to the CI, but listening and hearing still remain tiring for many CI wearers."

"Interpreters are also important for CI wearers. This facility should be expanded."

"People sometimes forget that CI wearers are still deaf."

Currently, one implant is reimbursed by the Dutch healthcare insurance, while many people could benefit from a second CI. Given the high cost, only wealthy people can afford a second CI.

Health inequities already play a role with one CI, because buying a processor can easily cost €9000, which people with small budgets cannot easily afford.

Some Dutch political parties want that when people are 70+, they are no longer eligible to be reimbursed for a CI.

Fortunately, that is not the case now and you can always qualify.

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.

Photo made in the Birmingham Children’s Hospital

Photo made in the Birmingham Children’s Hospital

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

Photo of Anita van der Weg

"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."

Portretfoto van Jaap van Ewijk

"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!"

Portretfoto van Ingrid Cuppen

"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."

Portretfoto van Henk van Rees

"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."

illustratie van een slechthorend patient die de arts niet kan verstaan vanwege zijn mondkapje, titel drempels in de zorg
Mannequinhoofd met mondkapje met doorzichtig venster

HEALTHCARE BARRIERS

About 1.5 million people in the Netherlands are deaf or hard of hearing.

How do they experience healthcare? And how can they best be approached when seeking medical attention?

HOW DO DEAF AND HARD OF HEARING PEOPLE EXPERIENCE HEALTHCARE?