“Do you like being called ‘brave'”? Rebecca Atkinson highlights the irony of Usher in the Deaf community (BSL)

Posted on February 18, 2015

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Do you like being called brave? Brave for facing the world ‘in spite’ of your deafness?

Have you ever been called inspirational? Not for a big achievement like finding a vaccination for cancer, but for just getting yourself dressed and out of the door ‘in spite’ of your deafness?

Have you ever felt like the biggest nuisance is not deafness itself, but the way the hearing world sees you?

To watch this article signed by Sarah Reed, in two clips, click play below.

The way they think your situation is a shame, that you must miss hearing the birds sing?

The way they say ‘I’m sorry’ when you tell them you are deaf?

The way they get awkward when they talk to you, avoid you even?

Do these attitudes mean you get left out, sidelined, miss important information or just the chit chat? Has a hearing person ever catastrophised your deafness, implying that it must be the worst thing in the world just to be you?

Have you ever felt relief when you get into a room of other Deaf people who all get your situation? None of whom think your existence on this planet is a shame or have such low expectations of you that they congratulate you just for living your life.

If you’re Deaf, chances are the answer to all these questions is yes, YES and YES!!! But why then do Deaf people think it’s OK to do all of these things to the 3-6% of the Deaf community who have Usher Syndrome?

Usher Syndrome is a genetic condition which causes deafness from birth and then the onset of an eye condition which causes the gradual loss of vision leading to tunnel vision, night blindness and in a few cases no remaining useful vision. It’s a Deaf person’s worst nightmare right?

Yes, but a bigger nightmare for people with Usher (I am one) is the Deaf Community’s lack of understanding, the way we get called brave for using a white cane or a guide dog.

Are you brave for using a hearing aid or an interpreter too? We get called an inspiration? What for? Getting on with life? What is the alternative?

This is not inspiration or bravery, but by saying these things you are revealing your low expectation of us.

How does this make us feel about ourselves to be on the receiving end of these comments daily? Like deafness, having Usher isn’t inspirational, we are just living the life we got given. Our biggest problem is the attitudes, not the disability itself.

It’s ironic that the Deaf community’s behaviour towards people with Usher exactly mirrors the way hearing people behave towards Deaf people. The majority don’t take time to learn how to do tactile sign or can’t be bothered to repeat themselves or adapt communication. Isn’t that what hearing people do to you? Leave you out at the party because it’s just too much effort? Or give you a wide berth and avoid communication with you all together?

Then please don’t do it to us.

The Deaf Community is people with Usher’s spiritual home too. Please don’t leave us out in the cold just because our sight has changed.

With 3-6% of the Deaf community having Usher, isn’t it time the Deaf community questioned where they all are? Many feel too ashamed to use mobility aids, they retreat into their homes because of lack of understanding and negative attitudes, they lose confidence, and lose their sense of place within the rich and vibrant Deaf community. That’s the nightmare of Usher.

But it doesn’t have to be this way, not if the Deaf community make the effort to include their own.

This is what you can do –

Hands on signing is surprisingly easy – just let the person with Usher put their hands over yours, or track your movements by holding your wrists. They will be able to follow what you say.

Some people with Usher may prefer to stand further back so that they can fit your signing into their visual field. Or they may ask you to lift your hands and sign a bit nearer your face. Try to remember to keep doing it after the first five minutes!

If a person with Usher joins a group conversation, tell them the topic. Just like lipreading, following a conversation is much easier if you know the topic! Tell them to just say if they don’t understand and you will repeat. Many Usher people have nodding head syndrome just like deaf people when they are communicating with hearing people. This is because it’s socially awkward to interrupt and say that you have missed something. Give them permission to do this and they will feel more at ease.

If you are talking to a person with Usher in dim light, offer to move to a brighter area. If the lights start to dim at a restaurant or bar offer to ask the staff to make the lighting brighter where you are sitting.

• If you are organising a Deaf event – think about people with Usher when you are planning. Ask them what they need. Perhaps an area of bright lighting at the centre of the action (preferably near the bar and not in some side room!). Be aware that if you flash the lights on and off repeatedly to get everyone’s attention, some people with Usher will be left blinded by this as their eyes struggle to accommodate. If you are going to leave the lights off at the end of the night as a way of getting Deaf people to go home, make sure you warn all the people with Usher first! Turning the lights out plunges them into night blindness.

• If a friend with Usher uses a cane or a dog, don’t express surprise or pity at seeing them with one – they are visually impaired. This is how visually impaired people get around. If canes and dogs makes you uncomfortable, change your view – they are symbols of empowerment, confidence and independence, not negative things to be pitied.

• Do not assume that a person with a cane or a dog cannot see to communicate – many can see well enough to have a conversation in BSL or through lipreading but rely on a mobilty aid for getting around. So don’t be frightened to go up and say hello. Given the number of deaf people with Usher there should be a cane or a dog at every Deaf social event. If not, the Deaf Community should ask itself why not?

By Rebecca Atkinson.

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The Limping Chicken is the UK’s deaf blogs and news website, and is the world’s most popular deaf blog. It is edited by Deaf journalist and filmmaker Charlie Swinbourne.

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