Open Letter to Deafblind Out There

November 14, 2011

Life is created by you, only. People, objects, events and education come into your life and they leave with some kind of mark, but you as a human being remain. So it's important to live your life the way you want to. If you find purpose in your life, then you have found peace.

I'm writing this letter that I hope hundreds, maybe thousands of people will read, but most especially Deafblind people of the world.

By Deafblind I mean, children and adults with some form of hearing and vision loss. They are completely Deaf or use aids to help them hear if they have some residual hearing. Along with complete or partial Deafness, the Deafblind person would also likely have one of those common causes of blindness, such as Usher Syndrome, cataracts, macular degeneration, diabetes-related, glaucoma, accident, damaging infection, optic atrophy, and more. Elderly Deaf people with very limited vision is considered part of the Db population.

Combined with the loss of two senses, children and adults around the world are likely be part of a structured Deafblind community (think Seattle); use sign language to communicate (Close-vision, tactile, Print-on-Palm, Lorm, 2 Hand Manual, tracking to assist) OR use oral communication (Close vision, hearing aids, cochlear implants, Tadoma method to assist); dwell in isolated environment with very little or no access to communication and proper care; some are educated in Deaf, hearing mainstream programs or are uneducated and illiterate; and a lot of us are depressed mostly because of the feeling we're more disabled than others and have no hope.

I want to tell you that there IS Hope. You just need to create the life you want then hope will be more brighter.

Take for instance, I will tell you short stories of inspiration.

■Father Cyril Axelrod, a Deafblind priest from South Africa has contributed to more than 50 years to Deafblind people. He's made tremendous contributions in South Africa, Hong Kong, Macau and the United Kingdon. He's written a book: “As The Journey Begins” and travels around the world giving motivational speeches.

■Anindya 'Bapin' Bhattacharryya was born in India. As a young Deaf child he was blinded by a fellow student at his school with burning ash into his eyes. His family sent him to Boston's Perkins School where he graduated, and went on to earn a Bachelor's and Master's. He has contributed years and knowledge to innovating Deafblind technology and lobbying the government of the United States to provide low-cost equipment for Deafblind Americans.

■Notable people who have run, led and founded Deafblind organizations – Jelica Nuccio (Croatia/Seattle for Deafblind Services Center), Gija Bruggemann (Deafblind Amsterdam), Lex Grandia (Denmark, for World Federation of the Deafblind), Sanja Tarczay (Croatia, Croatian Deafblind Association), Dan Arabie (Louisiana, for the Louisiana Deafblind Association) and more. They're very strong individuals who put their communities first and united.

■John Lee Clark of Minnesota, USA has Usher Syndrome, and comes from a family who most have Usher Syndrome as well. John Lee has run several e-zine publications for the Deaf community and has authored several short-story and poem books. He continues to be active in the American Deafblind community to lobby for the rights to communication access for the Deafblind.

- We all know this woman. Helen Keller, the grandmother of successful Deafblind people, has achieved global recognizance for her efforts to bring access and education to Deafblind people with her motivational speeches and several authored books. She was not without hardship growing up but with the love and guidance of Annie Sullivan, Helen went on to become a very educated and literate woman, one of history's best-known heroines.

I could go on and on about how many successful Deafblind people are out there. They all give me inspuration and hope during the most difficult phases of losing my vision to Usher Syndrome. Sometimes when I am in a dark period and decide that my life is over, I look back on meeting each of them and feeling their strong spirits flow like electricity through my hands when I use them to tactile their signing hands or through their life stories. Their wisdom, determination and passion have embraced me many more times than I receive from other people.

But it's not only successful, strong-minded and driven Deafblind leaders that amaze me. It's the countless of impoverished Deafblind people around the world, living under oppressive and deteroriated conditions, with a government who takes their time ratifying the United Nations Convention of Rights for People with Disabilities and NOT providing the financial, educational and physical access they need. I have met people in Africa, Brazil, Nepal, Cambodia, Malaysia, and India who receive little or no help. No form of communication. No language. No canes. Sitting in filth, or standing outside by themselves wondering what people are doing or what it looks like out there but having no idea about it whatsoever.

Seeing a serious lack of hope in them, I'm only compelled to rescue them, to tell them somehow that there is hope, and then I would walk out there and scream, “Can't you make his/her life better?”. I then think to myself, I'm fortunate to have this education, support, knowledge.... and I have been there, where they have been. I can only pass on the knowledge, skills and kindness to them”

Most people think that I've led a glorified life, because I am a happy person and have led such an interesting life with adventures and travelling. But the truth is, some of you may know, or most of you don't – I have led a hard life, one day I might write in my memoirs. They're tragedies, and you might be very shocked to learn and try to comprehend why I'm still alive today and smiling and helping people out of my own kindness and loved by many. But I survived. That's thanks to strong people like my father, my close friends, a great Deafblind community in Seattle, going to the Canadian Helen Keller Centre for skills, and my passion to help Db people in need. I can only hope you have found your inspiration to live life and be optimistic and happy.

I know it's difficult to go through days when you don't have the support or access you need. Not having a community back you up. Having people be ignorant or unattentive to your needs or your wonderful personality just because you can't see or hear. Falling over things and hurting yourself. Wanting so badly to be Deaf or sighted, that you would not tell people you're losing your vision. Having a hard time catching your small running children because you have tunnel vision. School systems not being supportive to your needs. Being abused because you have a disability. Not knowing how wonderful it is to use tactile with sign language and being able to understand 100 words in 5 minutes. It's all hard, I know. Believe me, I know.

But honestly – without batting an eye, I can tell you that if you stand up for yourself, tell it as it is, without a shadow of doubt, with absolute certainity, tell the world that you are Deafblind, and educate them how to better support you, then things will change for the better. It may be challenging, tedious, long, stressful, but it doesn't take an overnight trip to the other end. It takes work, dedication, patience and Hope. All you need to do is examine yourself, admit how much you can see and hear, assess the needs and skills you want for an easier life, form a support system and use that glorious cane if you need it.

It's hard to hear some bright, young, driven Deafblind adults admit they want to commit suicide because life's hard as a Db person. It's hard to see an uneduated, illiterate grown Db man sit in the corner of an orphanage he grew up and soiling his pants. It's hard watching some major Deafblind international NGOs waste away millions of donated dollars and not actually supporting the people say they are helping achieve a better quality of life. It's hard watching many able, educated Deafblind people hiding in the dark and not advocating. There is just too much work to do around the world.

I'm enlisting you, the Deafblind person reading this, to join me and others in unity, to stand strong, realize that you can lead an achieved lifestyle with ease and access, and come out and help me fight this big mountain or burden that's sitting on thousands of Deafblind people and bring HOPE TO THEM. Please. Don't be scared. Don't ignore this letter. Pass it on to as many people you know. Discuss the issues I brought up in this letter. Show your support to a Db person if you're a person who is not Deafblind.

And in this regard, please stop calling ourselves 'people with Deafblindness' as if we have a disease that has yet to be cured, and instead, call us Deafblind people. People first. Because that encourages us that we are indeed, a group of people who deserve the same rights as 'Deaf people', 'Aboriginal people' ' hearing and sighted people' and 'Normal people'. We don't call them people with Deafness or people who can hear, or those people with colored skin.

Lastly, respect us, respect yourself. Bring hope to those who are lost and can't find the light at the end of the tunnel (something Usher Syndrome folk understand....)

Don't wander off. I'm here for you. And the rest of us, too, because we're standing strong. You shall be, too.

Tactile love,

Coco Roschaert

Usher Syndrome Type I, End Stage
Nepal Deafblind Project Director and Founder
Kathmandu, Nepal