Beeing an Usher: Like fishes in the sea. The importance of self-help groups


Disable is a fish

Being disabled means a big responsibility with yourself. You never stop to measure with the future and with others, with yourpossibilities but also your limits. The key step in the process of personal growth is acceptance: I am this body, this person is, I am like this.
Even once you understand that being disabled can be interpreted as one of many possible beings that could happen to play in this life, the path is not over. Even more so if the disease which makes you disabled is degenerative. As time pass, or at the different stages of the transformation every time you have to learn to live with yourself and with the upcoming limitations

It is the case of Usher Ssyndrome. Although deafness or hearing loss might not degenrate, retinitis pigmentosa has no escape. In one way or another, more or less rapidly, the sight changes and inexorably worsens. It reduces the independence, especially at night, is reduced acuity, color perception changes, the field of view narrows. For those who do not hear well, this also means transforming the way to communicate and the need to learn new languages. It becomes more difficult to read lips in dark conditions, to see the hands that ‘speak’ the sign language, till when you might need to touch in order to ‘read’. It becomes necessary to learn Braille, use screen readers to use the computer.

Sometimes it can be really hard to take these steps alone. It ‘s important the support of specialists, psychologists, doctors, as well as parents, friends. However all these figures can offer expertise, professionalism, advice, support, love, but always from the point of view of someone who knows the disability in the way the man knows the sea. You can be the most experienced sailor or captain, you can be a tuna fisherman, a whale hunnter or a follower of Magellan, but you will always be a man who floats on something immense and deep. You will learn about waves, tides, colors, but you’ll never know what a fish knows.

For this reason to confrontwith who has the same problems and difficulties is one of the best ways to help yourself. Fish do not speak, but learn to swim in deep blue, the rules are passed amoung them without having to say anything about the ocean, without teaching anything, just for the common life into the same water. They learn the Ocean from water itself, its movements and the movements of other fish that it carries.

Maybe I’m trying to tell a story, I’m trying to say with the images what I learned from a weekend with Leben Mit Usher.

They are called self-help groups and members provide each other with various types of help, usually nonprofessional and nonmaterial, for a particular shared, usually burdensome, characteristic.

On 17th and 18th September 2o11 twenty boys and girls from different parts of Germany and Europe met in Hannover to share experiences, motivations, emotions and ways of living and dealing with Usher Syndrome, whether type 1 , 2 or 3.
The individual sensory limitations are more or less severe and different the stages of advancement of hearing and vision loss that in some cases reach the level of deafness and blindness.
Everyone lives or lived his drama in a more or less intense and personal way, confronting with other deaf, blind or other Usher people, whether classmates, friends, or brothers, but for two days we were all immersed in the same water, fishes that know this sea, more or less deep, of the disability.
As I mentioned in other articles, often the help comes from the comparison and the Internet is a way to get close to others, but the physical contact, the presence, participation, are not replaceable. Being together and share a few hours is a way to feel relieved by a smile. Simple smile that has no sound. Unparalleled significance. In addition to the communication problems that Usher Syndrome already involves, for me it was added the problem that I do not know German very well, a language shared by all other participants. Two interpreters of sign language and a few friends who know English, however, allowed me to speak and listen to presentations organized for the seminar, but perhaps more than every image, every word, I keep with me a gesture. A circular motion of the hand above the head: a dream.
This gesture is the first word I learned in sign language. Almost a wish not to stop dreaming, both in and out of the sea.

2 comments from the community

  1. It is good to read your words, feeling very on my own these days, too many demands of my small resources, abilities and not being heard by those that can. Hope all of us can have our days to connect with others on a good level that is and feels human, knows laughter, kindness and that we are treasured as is and as it goes too. A time without so much daily struggle to take in and enjoy if even for a moment. NK

  2. Very sweet comment.
    I think we can get a lot of very intense and deep connections all over, but we need to seek and hope for some around and close to us.
    I believe in the power of words: sometimes they can fill the gap of phisical distance, but that might not turn into what you are mentioning: laughter, kindness….

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