Life is created by you only. People, objects, events, and education come into your life and they leave with some kind of mark, but only 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 vision loss, glaucoma, vision loss resulting from accident or damaging infection, optic atrophy, and so on. Elderly Deaf people with very limited vision are 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, or the Tadoma method to assist). Unfortunately, many also dwell in an isolated environment with very little or no access to communication and proper care. Some are educated in Deaf programs, some in hearing mainstream programs, and some are uneducated and illiterate.
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 become brighter.
Take for instance, these short stories of inspiration:
- Father Cyril Axelrod, a Deafblind priest from South Africa, has contributed more than 50 years of his life to Deafblind people. He’s made tremendous contributions in South Africa, Hong Kong, Macau and the United Kingdom. He’s also 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 (who injured his eyes with burning ash). His family sent him to Boston’s Perkins School, where he graduated and went on to earn a Bachelors and Masters degree. 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), and Dan Arabie (Louisiana, for the Louisiana Deafblind Association). These are very strong individuals who put the unity of their communities first.
- John Lee Clark of Minnesota, USA, has Usher Syndrome, and comes from a family with other members who have Usher Syndrome as well. John Lee has run several e-zine publications for the Deaf community and has authored several books of short-stories and poetry. He continues to be active in the American Deafblind community, lobbying for the right to communication access for the Deafblind.
- We all know this woman: Helen Keller, the grandmother of successful Deafblind people. She has achieved global recognizance for her efforts to bring access and education to Deafblind people with her motivational speeches and several books. She was not without hardship growing up but with the love and guidance of Annie Sullivan, Keller went on to become a very educated and literated 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 gave me inspiration 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 many 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 times.
But it’s not only successful, strong-minded and driven Deafblind leaders that amaze me. It’s the countless numbers of impoverished Deafblind people around the world, living under oppressive and deteriorated conditions, with governments that take their time ratifying the United Nations Convention of Rights for People with Disabilities and not providing the financial, educational, and physical access Deafblind people 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 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—and some of you may know, though most of you don’t—I have led a hard life. One day I might write 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… why I am fortunate to be loved by many. But I survived, 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…. experiencing peoples’ ignorance, or having them be inattentive 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. Putting up with school systems not being supportive of your needs. Being abused because you have a disability. Not knowing how wonderful it is to use tactile skills 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… if you tell the world that you are Deafblind, and educate them on how to better support you, then things will change for the better. It may be challenging, tedious, long, and stressful, but it’s not 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 uneducated, illiterate grown Db man soiling his pants in the corner of the orphanage he grew up in. It’s hard watching some major Deafblind international NGOs waste millions of donated dollars and not actually support the people they say 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 of a burden that’s weighing 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 even if you’re a person who is not Deafblind.
And in this regard, let’s please stop calling ourselves ‘people with Deafblindness’ as if we have a disease that has yet to be cured. Instead, let’s call ourselves (and ask others to call us) Deafblind people. People first. Because that encourages us to believe 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 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 are, too, because we’re standing strong. You shall be, too.
Usher Syndrome Type I, End Stage
Nepal Deafblind Project Director and Founder
November 14th, 2011