Living with Usher Syndrome

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Working 
Reading 
Looking 
Going out 
Travelling 
Listening

What does it mean to be an Usher (Type II)?

You were born normal  and believe you are.
You see a starry sky at 15 years and you do not know it will be the last.
You have an invisible disease and the illusion of being able to hide it.
You got the driving license cheating the doctor.
You understand that you cannot drive and you do not to renew the license.
You do not drive.
You have been doing so many sports and not you cannot do many of them anymore.
You have difficulties learning new languages.
You do not hear the radio and television if not in high volumes or with headphones.
You wear hearing aids.
You need to be accompanied when necessary.
You can not live where you want.
You open the closed side of two in a glass door with one open.
You scan the area before taking a step in an unknown environment.
You lighting a torch in a cinema and you are not the seller of popcorn.
You order your meal to the the image of the waiter reflected in the mirror, believing that it is the waiter.
You do not shake anyone’s hand when presented to a new group.
You don’t wave to a friend you meet on the street. You have not met anyone.
You do not see the shooting stars.
You do not know if and when you’ll be blind.

Working

The topic of the work related to disabled people is very territorial, since there are substantial differences in legislation between Countries but also between different regions.
In addition there are different possibilities related to the specific area (city, suburbs, countryside, siland, mountain) social and economic status. When the conditions are the same, it becomes a matter of character and preferences, which, however, can be placed on top of the list, because sometimes also people with disabilities can be architects of their own future and seek the support they need.
Although this is an argument where the cases are many and very differents, we would like to dwell on some points.

Many jobs are foreclosed.
All those who provide an independent transport, both on two and four wheels.
The jobs that require quick movements (waiter), the use of machinery for the handling of loads, driving of tractors, movements in poor light conditions.
To be excluded jobs where a good hearing is essential.
Early diagnosis of Usher syndrome can guide the decision to study something that can be continued also in the likely deterioration of vision.Being in the middle of a course of study and discover to be suffering from retinitis pigmentosa with a title in hand and not being able to exploit could be very unpleasant and difficult.

Reading

A book, a newspaper, a text message, a recipe, a billboard. There are many occasions where you need to read.
The retinitis pigmentosa causes the narrowing of the visual field, but in some cases does not occur uniformly and the part of the retina still able to see is not necessarily the central one.
This already results in significant difficulties in reading, but often take over other complications. It is not unusual to havecataracts: changes in clarity of the natural lens inside the eye that gradually degrade visual quality. Even once operated, there are still difficulties, linked to the lens: you have to use reading glasses to see in addition to those from afar.
Like a 70 years old person, forced to keep two pairs of glasses, increasing the possibility of losing those you do not wear (which happens very often, partly because the retinitis does not help to see what is out of visual field).

Reading very small fonts, such as a newspaper article especially in low light conditions can be very difficult, forcing you to abandon reading if there are no bright lights nearby or take out a magnifying lens, Fresnel lens, monocular, and so on.

Looking

Looking is not seeing.

To look is to observe, to monitor, to examine, to consider, to investigate, to scrutinize, to inspect, to square. To watch.
For some of these synonyms you do not need eyes. Or at least not they are not necessary or it is not necessary to have perfect eyesight to be able to perform the action.

Optimum viewing may be necessary to inspect the hair and see if there are lices.

However, there are watching actions that could be limited in a person suffering from retinitis pigmentosa and / or Usher Syndrome.

Watching a movie at the cinema. If you are too close to the screen it is too big for your narrow field of view, if you are too far you do not hear.

Watching a movie at home. The sound level required to an Usher is always too high for a normal person. Even with the hearing aids he can never listen 100%. The best way to feel good is to use headphones.
The subtitles are a great help but not everyone not want them, especially if the movie is in dubbed in their own language.
When the movies is filmed in mother tongue a great help comes from the labial.

Watching a game of a sport with the ball. Where is the ball?

Watching a woman. Watch her walk, while cooking, while combing. Watch her while singing, while sleeping. How is it possible if you do not see?

If you ‘look’ with your hands you distract, participate in the action. You can listen to the movements, positions, the cadence of steps. But there is a beauty that can only be seen.

Watching…

Going out

Nightclubs, restaurants, cocktail bars, pubs are always a bit dark. The soft light creates atmosphere, but a person with retinitis can not go to the bathroom alone, can not even find his place to sit. He can not read the menu. Sometimes he does not even see what’s on your plate. he does not see the glass of wine that invariablypours on the knees of the girl in front of him. Lost all hope of a next date. In any case it would not be able to take her home.

Many problems and difficulties related to any leisure activities are solvable, others may not even seem worthy  of being listed. It is the sum which becomes difficult. It is the set of all the little difficulties. However, in one way or another each of us has limitations to overcome, but the knowledge that some are related to a disability makes them insurmountable and unsolvable.

An example. A person with retinitis can not drive the car. However, in some cases can take public transportation. There are people who do not drive by choice, others fear driving, others do not drive because they can not afford to buy a car or driving license.  In the end the disabled, the fearful and the poor do not drive, but the only one that will never drive is the disabled person. This awareness perhaps makes limits more difficult to accept.

Travelling

Traveling means going in new places. Every time you need to get to know and recognize them. A person with retinitis must learn where are the obstacles, steps, light switches in the hotel.

Travellling means meeting new people. Eevery time they òool perplexed to note some difficulties which they can not understand, since you’re a traveler, so they do not even think that you do not see. Then, every time, you have to explain that you do not see in the dark, it takes you a little time to adapt to different lighting conditions.

Travelling  is  to discoverto peer, to know. You can not stop. The sensory limitations do not preclude, however, to feelthe world, the atmosphere, cultures and diversity.

The more you struggle to receive stimuli from the outside, sounds and images in the case of Usher syndrome, the more you try consciously and then you can still live strong experiences, conveyed by the intensity of the inputs that filter the disability.

Listening

The difference between looking and seeing is similar to the one between listening and hearing.
Seeing and hearing are involuntary actions.
Looking and listening need an active and conscious.participation.
However, as to look in many cases it is necessary to see, so you need to hear to listen.
Usher’s Syndrome involves restrictions in both situations.

Listening is assisted by hearing aids but is also very useful to see the person speaking to read lips, and then interpret the words lost.
This is why you often you have the impression to hear less when you are not in front of the person or when the conversation is in a language or dialect that is not familiar.

In some cases, however, there’s no way to hear, because who speaks doesn’t articulate words or does not look at the other person

Dar: I’m hungry
Mom: Now I am going to cook
Dar: What will you cook?
Mom: I was thinking of making a pasta with …….. and walnuts.
Dar: eh?

In this case, for example, I have not heard the first of the ingredients with which Mom wants to make pasta, and since I can not imagine what it will  be, I do have to hear the word,  instead if she had said
I will make cannelloni ricotta and …….
Although I have not heard an ingredient that will be easy for me to guess: spinach, because I know the recipe and then even though in reality I did not get the exact sound of the word I think that I have heard.

 

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