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elsarah · 5 years ago

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Hearing loss and the world of the d/Deaf

First of all, many thanks to @thelouistiti for your question about resources on hearing loss. I decided it would be better to write everything myself rather than sharing a compilation of links.

Deafness/hearing loss is huge topic and it's two-fold: there's the medical aspect and the cultural one. When talking about Deaf culture and community, I'll capitalize the "d" as is customary to make the distinction. I'll talk from a French perspective, and as a person with severe acquired hearing loss, who is currently learning sign language and making her first steps into the Deaf community.

If you feel I'm too vague, that I need to amend things, or if you just would like to chime in and talk about your experience, my ask box is open and I'll share your input.

For the Frenchies and French speakers here, I also suggest this episode of "C'est pas sorcier" which is about the d/Deaf world. It's old as balls (late 90s) and many things have evolved since (FSL is now considered an official language in France), but they talk about the different types of hearing loss (conductive and sensorineural), how the ear works, hearings aids, and they tackle a bit Deaf History in France. It's a good introduction.

Now let’s begin if you’re ready!

What's hearing loss, how is it measured and what are the different thresholds?

Hearing loss generally refers to the loss of acuity in one or both ears. A person with hearing loss will have difficulties singling out sounds in a noisy environment, understanding speech and pinpointing where a sound originates, hearing a TV and making phone calls. There are a number of factors that can cause hearing loss such as: exposure to noise, ageing, genetics, medication, infections, ear trauma, etc.

Hearing loss is measured by the number of decibels necessary to perceive a sound on a scale of 0 to 8000 Hz (low to high frequencies). One will be considered hearing impaired when unable to perceive a sound under 25 dB. There are 4 thresholds, or degrees of hearing impairment: mild (25 to 40 dB), moderate (41 to 70 dB), severe (71 to 90 dB) and profound (greater than 90 dB). At 120 dB, the loss is considered total.

Hearing loss isn't necessary uniform across all frequencies: some people will have no trouble hearing low frequencies without being able to perceive anything higher-pitched than 1000 Hz.

Someone shared this great picture showing where the sounds of everyday life fall on an audiogram:

Other than severity, hearing loss is also categorized in 3 main types: conductive, sensorineural and mixed (the latter being a combination of conductive and sensorineural).

Conductive hearing loss: the sound doesn’t reach the cochlea (the inner ear). The causes can be infections, a damaged eardrum, malformations, impacted earwax among others.

Sensorineural hearing loss: dysfunction of the inner ear. The sound is able to reach the cochlea, but isn't handled properly. The most common cause is the destruction of the hair cells in the cochlea.

There is another auditory disability that isn't exactly hearing loss but hinders one's ability to understand sounds: auditory processing disorder. People with APD have normal hearing and no damage to the inner ear, but the sound isn't processed properly by the brain.

I'm keeping this short, but the corresponding Wikipedia pages are quite exhaustive, with statistics and all.

How to tell if one is deaf or hard of hearing (HOH)?

Well, it's actually complicated and depends on the person. I've noticed everyone has their own definition of deaf and HOH. According to some people, only people with profound to total hearing loss should be called deaf. Medically, it seems that people with severe hearing loss can also be considered deaf. I've seen people say that you have to be born deaf to call yourself so. And I guess that among hearing people, many think deaf people are simply the ones communicating in sign language.

And there's my personal take: you call yourself what you feel best describes your hearing abilities and problems. I feel that if hearing loss severely hinders your social and professional life, you may call yourself deaf. The degree of your loss doesn't matter that much if you feel isolated by your disability.

And to hearing people: you don't get to have a say if one is deaf or HOH. Period.

What are hearing aids?

There are actually 2 kinds of hearing devices: hearing aids and cochlear implants.

Hearing aids:

They improve hearing by making sounds audible, for example by amplification. Their settings are custom-made for the wearer by an audiologist. They come in all shapes and sizes but there are 2 main families: Behind the ear (BTE) and In the ear (ITE) hearing aids. The former are composed of a case attached to an earpiece that fits inside the ear. The case rests behind the ear and contains the electronics, controls, battery, and microphone, while the loudspeaker, or receiver, may be housed either in the case or in the earpiece These are particularly recommended for more severe hearing losses, but they're very versatile. In the ear hearing aids devices fit completely in the ear bowl (no case behind the ear) and are more discrete. They're usually recommended for mild to some severe hearing losses

Hearing aids can't completely correct hearing loss. Sensorineural hearing loss reduces the sensitivity to sound and aids can only partially compensate by amplifying sounds. Conductive hearing losses tend to be better treated by hearing aids; the amplified sound is able to reach the cochlea, and the signals are transmitted normally to the brain.

Cochlear implants:

You know how I said sensorineural hearing loss was generally caused by the destruction of hair cells inside the cochlea? These hair cells are sensory receptors that trigger nerve signals when detecting sound waves. The cochlea then converts those sound waves into electric signals that travel to the brain through the auditory nerve. So with damaged hair cells, the signals can't properly reach the brain and the information will be incomplete.

A cochlear implant bypasses the outer, middle and inner ear and generates the electric signals. It doesn't produce noise and unlike hearing aids, it doesn't amplify it. The outer part is composed of a microphone, a sound processor and a coil. The mic takes in sound, then passes it to the processor that crunches the data into electric signals called "channels", which correspond to different sound frequencies. The data is transmitted to the coil, placed on the scalp. The signals are then transmitted as wireless signals to a receiver and electrode array surgically implanted into the cochlea. The receiver converts the waves into electric impulses and when the signals reach the electrodes, they trigger the hearing nerve connected to the brain.

(source: Blausen.com staff, 2014)

What an implanted person hears is what the brain interprets from the combination of these signals. The limited number of channels in a cochlear implant means the sounds are very different from natural hearing and it is necessary to teach the brain to hear after the surgery. It typically takes months of auditory training. The implant doesn't replace hair cells and can't relay pitch and timbre. Implantation is also irreversible. But it allows people with a very low level of hearing to hear speech and pick up different types of sound. When one doesn’t benefit enough from hearing aids, it’s often the last alternative.

It is believed that implanting congenitally deaf children at a young age gives better results, but this is a very controversial topic and I'll get back to it later.

In France, hearing aids are expensive and cochlear implants even more so, but partially reimbursed (fully for children) by social security.

Are deaf people mute?

It’s a common misconception. When you have hearing loss, your vocal cords aren’t impacted. Deaf people can speak, and some really well; they sometimes just choose not to because it can be difficult to regulate volume and pitch. Some deaf people get discriminated for their accent.

So please, ditch the word deaf mute (”sourd-muet” in French).

Can deaf people listen to music?

Yes, but not with the same accuracy. People with profound to total hearing loss will mostly feel the beat and vibrations. There are backpacks and vibrating floors specifically designed for this purpose. People with hearing aids can link them to their music devices with Bluetooth or just wear headphones. The only exception, I believe, is cochlear implants. As they can’t relay pitch and timbre, music isn’t perceived as accurately. It gets better once the ear is trained.

By the way, try to be mindful with deaf people about music and don't imply we miss out on something great. Some don't care, some are perfectly content with what little they can hear and feel. And those who lost their hearing later in life don't need reminding.

How do you manage in your daily life with hearing loss?

Firstly, I would like to stress that most of the issues faced by deaf and hard-of-hearing people are social, not medical, we don’t usually suffer physically from our condition.

Regarding adjustment, it's different for everyone. How the person copes depends on lots of factors, including early vs. late hearing loss, gradual vs. sudden, as well as the severity, the communication needs and the personality (acceptance vs. aversion to change). Hearing loss is also linked to feelings of depression, anxiety, frustration, social isolation and fatigue.

Hearing loss hinders access to education and job opportunities due to impaired communication. In France, the unemployment rate of people with severe hearing loss is almost 4 times the national average. There are extremely few universities which offer proper higher education in sign language. Much of the available higher education adapted to the deaf and hard-of-hearing is short-termed and still very oriented towards manual jobs. And it's not necessarily easier for mainstreamed oralist deaf/hard-of-hearing people who attend universities. As a consequence, deaf people have lower levels of education, with only 10% getting a higher education diploma compared to 30% of the general population.

Access to services, infrastructure and culture is also still a problem. A very important law was passed in France in 2005 in favor of people with disabilities. It guaranteed, among other things, access to all areas of social life: education, employment, housing, transportation and culture. But progress has been very slow. In France, in 2020 for instance, it's next to impossible to find French movies with French captions in cinemas. However, almost all foreign productions in theaters here are available in their original version with French subtitles. Close captions are subtitles specifically designed for the deaf and hard-of-hearing. They supplement the dialog with all the other audio cues: ringtones, music, languages, and so on. They're also more expensive and there are few sessions offering them. Regarding telecommunications, we had to wait until October 2018 for a national telecommunications relay service that allows us to make phone calls with communications operators (FSL interpreters) and speech recognition.

Social integration is extremely important to our well-being. A lack of accessibility may be the cause of a drop in self-esteem and confidence, as well as social withdrawal. Hearing loss has been linked to Alzheimer's disease and dementia, especially among isolated individuals. Prejudice and discrimination are also a problem, probably more towards signing deaf people because both “slurred” speech and the inability to speak are perceived as alien.

Look, lack of accessibility is a pain, but it really shouldn’t prevent us from living our lives to the fullest. The important thing is to not stay alone, even though it's sometimes easier said than done. There is a lot of systemic pressure to make hearing loss invisible. Invisibility is even a selling point for hearing aids, while implanting children at an early age is encouraged to raise them in the hearing world… Many HOH people don't get access to the community simply because they don't know it exists!

Do you have to learn sign language when you become deaf?

No, you don't have to. The later you become deaf, the more you'll tend to continue using speech. But in my opinion, it's worth considering learning sign language for people with acquired hearing loss, especially children, even if they are fitted with hearing aids. Why? Because hearing aids can't do everything and their performance is very limited in noisy environments. It's great to have another ace up your sleeve to communicate. Also, and it's my personal experience, it's comforting to be in touch with the deaf community and people who share your joys and problems alike.

This is a very sensitive and controversial topic within the Deaf community, which is why I choose to give my opinion on acquired and not prelingual hearing loss. Prelingual hearing loss refers to people who were born deaf or became deaf in their infancy, before the acquisition of language. It means parents must choose how they will educate their children, if they will have them fitted with hearing aids or implanted, follow a mainstream education or go to a deaf school…

Deaf and hard-of-hearing people may also use cued speech (”Langue Parlée Complétée” or “LPC” in French). Cued speech is a visual rendering of spoken words. Some phonemes like "t" and "d" or "p" and "b" can't be differentiated when reading lips (which deaf and HOH people often do automatically). Cued speech renders all phonemes visible through handshapes, known as cues. They are 8 handshapes to represent consonants and 5 positions around the face to represent vowels. Associating one handshape with one position will cue a whole syllable.

Why is there a Deaf culture? What does it entail?

Now, it gets complicated. And fascinating. I won't dwell too much on the subject because I'm basically a baby Deaf gal and I'm not qualified. But my ask box is open if you would like to chime in.

From the moment people share a language and a history, they'll also share a set of experiences and issues, values, good practices, and basically a mindset. So naturally, with sign language being a real language, taught from generation to generation - as well as surviving a century-long ban from schools in France - a whole culture emerged.

And I should even say cultures… every country has its own Deaf culture because it's also tightly connected to the host country's culture and local sign language. The word "house" isn't signed the same way in French and Chinese sign language for instance because architecture isn't the same.

Deaf culture is very militant as Deaf people don't think of hearing loss as a disability. Deaf people typically don't speak of hearing loss but of "Deaf gain". I mentioned that there is systemic pressure to make hearing loss disappear. For instance by implanting deaf children at a young age to teach them to speak and integrate them into the hearing community. Deaf people see this as the death of their culture and language. For many people with hearing loss, Deaf culture means comfort, pride and community. From the Deaf perspective, hearing societies often fail to understand Deaf people's abilities and culture. From this point of view, the lack of communication stems as much from the inability of most hearing people to use sign language as from deaf people's inability to hear.

Deaf culture is however an open culture, you can join at any point in your life, you don't need to be born into it. It usually starts when you learn sign language and get acquainted to other d/Deaf people. A lot of people with late hearing loss are unaware such a culture exists and it often results in a lower self-esteem, as they don't find support in the hearing world. Some hearing people, especially relatives who learned sign language or interpreters, may be considered part of the Deaf community.

I'm not enough of an expert to write a full paragraph on the subject, but just know that just as in any culture, the arts are also very important in Deaf culture, especially visual performances, like drama and sign singing (chansigne in French).

For instance:

youtube

Where can you learn sign language in France? Where can you practice? Do you have any online resources?

First things first, sign language isn't universal. There are almost as many sign languages as countries in the world, though some are more closely related than others. American Sign Language (ASL) and British Sign Language (BSL) differ widely as they use different basic signing systems. There is something called International Sign Language (ISL), but it is only used when Deaf people from different cultures meet, for instance during international competitions.

Regarding French Sign Language (FSL), there are a lot of organizations and associations which offer lessons such as l'Académie de la Langue des Signes Française, International Visual Theatre, 2LPE, Visuel-LSF, etc. Unfortunately, many (especially cultural ones) are located in Paris, and more sparsely in big cities like Lyon or Toulouse. If you're lucky, some high schools offer sign language as a third language, which allows you to gain extra credit for your baccalauréat.

Learning French Sign Language is very expensive, around 220€ for 30 hours. Financing for sign language can be hard to find and there are hardly any discounts or reimbursement schemes for people with hearing loss. Obviously, you may learn sign language through less expensive options, such as meetings at Cafés signes, which are small gatherings in a bar and welcome hearing people as well as deaf and HOH people. It's best to know at least the basics and to avoid Signed French (sign language has a different syntax) and several Cafés are limited to people with a certain level, but several associations like La Parole aux Sourds welcome everyone.

Some libraries in Paris have a dedicated section for sign language and Deaf culture such as Bibliothèque Louise Walser-Gaillard (next to the International Visual Theatre), Bibliothèque Saint-Eloi, La Canopée, Bibliothèque André Malraux and Bibliothèque Fessart. Books are great and may include a lot of signs, but they don't render movements very well.

There are plenty of online resources. I personally use Elix when I need to find a sign. It's a participative dictionary and still a work in progress, so all signs aren't referenced. What I find nice is that they provide variations of the same word. For instance, the word "mom" has a lot of “synonym” signs, depending on the area you live in.

Youtubers are an option BUT make sure you choose channels managed by a member of the Deaf community, a certified teacher and not a student learning sign language. It's important. I like Mélanie Lemaistre who has 2 channels. Her main one is MélanieDeaf, where she raises awareness on culture and sign language. On Signe2mains, she teaches a lot of vocabulary. You may also be interested in Lucas Wild's videos in which he signs and provides captions. It's good for training. And finally, I discovered this channel when typing this post and found it really, really good. It teaches idiomatic expressions in FSL.

But the most important thing when you want to learn sign language, like any living language, is to meet actual deaf people to practice. You have to learn to express yourself with your body and your face, and it's not easy for everyone. When you take lessons, the first hours are usually dedicated to mimes. Sign language is different than mimes as the frame is limited to your upper body but you still need to work on it at first. Signing people typically don't appreciate when you finger spell a word to learn its sign, it's more respectful to mime it.

Where can I meet Deaf people and learn more about their culture?

You may learn more about Deaf history and culture during Open Door Days, when organizations like the INJS (Institut National des Jeunes Sourds, one of the oldest schools for the d/Deaf in Paris) organize guided tours.

In Paris, there is also an amazing center called International Visual Theatre, which is dedicated to visual arts. I take sign language lessons there (they're excellent) and often go and see their plays, which are in both French and FSL.

Every two years, the city of Reims holds a huge international Deaf culture festival named Clin d'Oeil. Thousands of d/Deaf people come from all around the world to meet during 3-4 days (usually in July). It’s dedicated to sign language and visual arts: drama, dance, sign singing (chansigne in French), cinema, mimes, street performances… The next edition will be held in 2021.

Deaf people also organize gatherings, for instance during the World Day of the Deaf, every year in September, when we march for our rights.

Regarding the media, France Télévisions has a program called "L'Œil et la Main". It's in FSL and subtitled in French. They address current news (#MeToo, Youtubers, gene therapy, etc.) from a deaf perspective. There's also a news website entirely designed for signing deaf people called Media'Pi. In FSL, "Pi" means everything that's typical or related to a situation or a person and there's no exact translation in French. If you understand French, this subtitled video explains what "Pi" means.

Do you have any movies, series, books, etc. to recommend?

To be perfectly honest, I have yet to find entertainment media about deafness and hearing loss that I like. But I do like when movies or series include deaf characters and d/Deaf actors into their ensemble. I haven't watched Switched at Birth, but I liked Sean Berdy in what I've seen of The Society so far. There's another young deaf actress, Millicent Simmonds, who was recently in 2 movies: A Quiet Place and Wonderstruck (I'd like to see the latter one). Marvel's The Eternals will also feature the first deaf superhero, played by Lauren Ridloff. But none of them really address deafness and Deaf culture. Which is also totally valid, it's nice to have characters where aren't defined by their disability. It's just that yes, sign language is nice, aesthetic through the roof, but what about the culture?

I didn't like Children of a Lesser God (a movie based on a play), which is supposedly one of the most famous representation of deaf people in movies. I think it didn't age well. But it made Marlee Matlin famous and allowed her to talk about Deaf issues and to give the community visibility. It's a must-see, basically, but you might not enjoy it.

In France, we have hardly any representation in the mainstream media, which is why I have high hopes about Skam France and I hope I can soon add it to the list. I however recommend this documentary: J'avancerai vers toi avec les yeux d'un sourd, which the director dedicated to the friend who had taught her sign language and who sadly passed. I don't think this was distributed in English but I could be wrong! There's also Marie Heurtin, a movie about a young deafblind girl who is sent to a convent, where Sister Sainte-Marguerite decides to take care of her.

The only popular movie with deaf characters that came out in theatres recently in our country was La Famille Bélier. It's quite infamous within the Deaf community as hearing actors who were specially trained in FSL for the movie played two out of the three main deaf characters. We're used to having our roles played by hearing actors, the same happened to the recent theatre production of Children of a Lesser God where two hearies played the main characters.

I know that many people think cinema and drama are all about the performance and that it's ok when hearing people play minority roles. It's not. Have you ever seen a deaf actor play a hearing character?

I'm short on fiction works about hearing loss and Deaf culture though; feel free to chime in if you have recs. In France, Emmanuel Laborit, a French Deaf icon who won a Molière in the 90s for her performance as Sarah Norman (the main character of Children of a Lesser God), wrote an autobiography, le Cri de la Mouette where she addresses her childhood memories and the shaping of her identity though sign language.

What would help d/Deaf people?

First and foremost: visibility! Let d/Deaf people speak for themselves, demand from production companies that they cast deaf people for deaf roles. If you are not seen, you are not known. Invisibility plays a big role in the negative perception hearing people have of hearing loss. I've seen people here saying that becoming deaf was their worst fear in the world. How sad.

Many people with hearing loss will spend their whole life with it. We have a long road before us and we don't want to fight it through. Give us positive representation, people to admire and to support. Give us good stories. Giving us visibility will also shine a light on our issues and our needs regarding accessibility. Keep that in mind and be proactive. You don't realize how tiring it is, when you are deaf, to organize your own accessibility at an event because nobody thought about it. Equal opportunities don't mean you have to treat us like you would treat abled people and just let us be (you know we are already aware we have the right to exist?). It means giving us the tools we need to thrive because we start with a pretty big impediment.

Don't let deaf people bear the brunt of the lack of communication, especially if they choose not to talk. You wouldn't do it with a foreigner. Use voice recognition or type your sentence on your smartphone, use mimes, but just try. A conversation goes both ways and we are the disabled ones, not you.

So that's it. That's the post. If you have questions, I beg you to ask them, my ask box will ALWAYS be open for his purpose. I had to keep this as short as possible and left many things aside, but I hope this will give you a good insight into hearing loss and the d/Deaf world.

#many thanks to my boyfriend for reviewing this #ilu honey #and many thanks to Gaëlle for explaining how this goddamn site works #Manon rambles

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