The following question is posted οn the Dutch website of Usher Syndrome (www.ushersyndroom.nl): “Would you choose for being deaf or blind? I cannot choose, for I am becoming both my deaf and blind because of the Usher syndrome.”
What is Usher Syndrome?
The Usher syndrome is a genetic disorder which contributes to partial or total loss of hearing and vision and can also affect balance. The Usher Syndrome is classified as either Type I (deaf from birth, speech difficulties, problems with balance, vision loss in the first 10 years of life ), Type II (partial hearing loss, gradual loss of vision) or Type III (gradual deterioration in hearing, vision and balance). (For more information look on: http://www.noesi.gr/book/syndrome/usher).
It is nowadays estimated that about 10% of children that are born deaf may be due to the Usher Syndrome. There is currently no treatment for Usher syndrome but there have been significant scientific developments that can lead to a cure for this rare genetic disorder in the last years. Alongside this effort to find a treatment, there are also efforts being made to create better daily life conditions for people with sight, hearing and balance disabilities, in order for them to be able to live independently and with dignity for the greatest part of their lives.
On September 19th is the first International Awareness Day for Usher syndrome. This was established by the Usher Syndrome Coalition in the United States (http://www.usher-syndrome.org/) and marks the beginning of an effort to awaken the world, governments and individuals with Usher Syndrome themselves, so that Usher syndrome and deafblindness can officially be recognized as a unique disability. The goal and wish of those involved in raising awareness for Usher Syndrome is to spread the message that people diagnosed with Usher Syndrome are not doomed to be inactive and unproductive members of their societies. There are already job openings in many countries for people with disabilities. It would be really great if more deafblinds would be offered employment. Moreover, the recognition of this particular disability from all countries around the world, will give the right and the opportunity to people with Usher Syndrome to smoothly integrate into their society and to participate in numerous activities, something that has proven difficult or impossible so far.
During the recent decades, science and technology have made great developments in the way they support people with deafblindness. Maybe the cure for Usher syndrome has not yet been discovered but in several countries people with Usher Syndrome are able to live independently, be active members in their society and pay taxes. People with Usher Syndrome are not obliged to live a life dependent on their families but instead can lead a normal life just like everyone else.
People with Usher Syndrome have to stand up for themselves against any discrimination. They do have the right to live many years of happiness and dignity as long as they claim their right to work, to socialise and to create a better life, just as they would have done and imagined it if they were not diagnosed with Usher Syndrome. The rest of us should just support them and give them the chance to offer their very best to our society in their own special way.
Starting September 19th, 2015 we start to openly talk about Usher Syndrome and demand for the immediate recognition of deafblindness from all countries. We educate ourselves over Usher Syndrome, we understand, we respect, we support!
The Irish campaign for Usher syndrome has the slogan #iamnotinvisible and openly calls the Irish government to recognise deafblindness as a unique disability. The motto of the Greek campaign could be “Support Usher Syndrome”. I may not see well, I may not hear well. But I exist, I’m here and I want to live. I want to live because life is a gift and this gift is given to all of us. I’m here. I have my disability but I am most certainly a lot more than my disability! I am me!
If you are interested in spreading the above message, do share this article and tag #SupportUsherSyndrome to your profile on social media. Give the world the chance to learn about Usher Syndrome and help in any way you can!