Beyond The Obvious – what Sound of Metal did not tell you?

There are many reviews of Sound of Metal, tackling different parts of the movie and undertones, hearing loss awareness, cochlear implants, dangers of listening and playing loud music, Deaf identity ( cultural deafness) but most important narrative seem to be missing – the deafened and hard of hearing people and their community.

I must hand it to the movie director and the actor Riz Ahmed for presenting most realistic to date depiction of what it is like to go from hearing to being deaf. From tinnitus, asking people to write down what they say, inability to hear callers on the phone and loss of independence, having to relay on others to make calls for us. Those are the experiences all deafened and hard of hearing people will find common with their own personal experiences.  

In the Sound of Metal, Ruben trauma of rapid hearing loss is amplified with loss of his career and financial security by not being able to play the music, he goes through period of denial and finally desperation. He is not alone in this, there are many people who are in similar situation and either change jobs when they can no longer use their hearing or if they are able to do so, retire from their jobs. Some people have also experienced relationships strains or breakdown.

“ Blindness separates people from things, but deafness separates people from people”.

Helen keller

In situations like Ruben found himself, peer support is crucial to help person to find themselves in the new situation, learn about possibilities, adaptations, communication tactics and gain much needed sense of belonging.

In the film, Ruben for some reason is directed into Deaf community and is told to learn how to be Deaf, learn sign language and any talk about cochlear implants is spurned on. Ruben has found himself totally alone, not belonging to Deaf world nor hearing world. He also found himself rejected by group leader once he revealed  he chose to seek medical support and get cochlear implants.

Did you know there is another community? A community which exists between those both worlds – hard of hearing community which brings together people with different levels of hearing loss and deafened people. We speak, and use different assistive technology and accessibility solutions, whatever works! Our identity is not aligned with cultural deafness, some of us use signs, we speak ,use our voices and assistive technologies such as hearing aids and cochlear implants.

 I am a Chair on the National Association of Deafened People and the association supports people who experience hearing loss. Our board and membership are made up of people with lived experience of deafness. Some of our members choose not to have implants for various reasons, others like myself have chosen path of getting cochlear implants. Our members find what works for them best in their circumstances and are not getting judged. Members learn of different support available, such as lip-speaking, sign supported language, speech to text reporting ( real time captioning) and assistive listening devices…whatever works for them. Those who decide to have cochlear implants are encouraged to meet other cochlear implants users to allow them to learn from others and to manage their expectation, something that Ruben was not exposed to in the movie.

In my view, Joe ( played by Paul Raci) the addicts retreat leader ,has failed in his duty of care towards Ruben. He has only shown Ruben one solution- sign language – which may have worked for Joe and others, but he failed to acknowledge that this may not be enough for Ruben. He did not seem to mention existence of deafened or hard of hearing people support groups, allowing Ruben to explore his options. He also supported narrative that cochlear implants as rejection of deafness without further explanation what to expect after operation.  It is great shame Ruben was not directed to deafened people support groups. In USA there are associations and groups where Ruben would meet people with shared experience and given support in finding acceptance of his deafness.

The process of getting cochlear implant in this screenplay seems to be straightforward , just make a call and book yourself for the surgery, if you have money to pay for it , unfortunately this is distorted representation. For starters, our colleagues in USA ( where the story is based)  will tell you that most insurances pay towards cochlear implants. I wonder how much research has really been done before making this movie?

Getting cochlear implant is a lengthy process, you cannot just phone up, like the dentist, and ask them to fix your broken tooth! It takes time, positive attitude towards rehabilitation and hard work to get the most of cochlear implants. Cochlear implants are not a “fix” or a miracle cure , they have their limitations, but they are a powerful tool that allows many deafened people to continue to stay in conversation with those who do not know sign language. After all, Ruben was able to communicate with his girlfriend without the need of writing everything down.

The film director took  care to show what it is like during first fitting and how implants tend to over amplify all sounds, and difficulty of listening to music soon after activation.

Deafened and hard of hearing people exist between Deaf and hearing worlds, we make up 5% of the world population, that is staggering 466 million people, yet we did not even get a mention. It is great shame as this would bring much  needed spotlight on our existence and bring much needed acceptance .

How long do we need to wait? Our stories matter as well.

The US associations have published their statements below:

https://www.hearingloss.org/the-sound-of-misinformation/

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