Nepal Journal #2: How An Example Changed Lives

Nepal Journal #2:  How An Example Changed Lives


February 7, 2011


The day Roni arrived, time flew right past us and already she’s left Nepal after a month-long stay at Casa Coco. The house now has an eerie silence, after 30 days of nonstop noises, endless chatter and an occupied guest room. Her purpose of stay in Nepal had been fulfilled and more – Roni had travelled to the Annapurnas, saw numerous famous Kathmandu landmarks, strolled the streets of Bhaktapur’s ancient town and even had a bout of the typical “Foreigner Illness”. What’s more, Roni had a big part in helping me get the wheels going for my Nepal Deafblind Project – assisting in the Deafblind Training Programme we provided to the Kathmandu Deaf community, got me organized on grant documentations, and most importantly – she was my Guiding Person. Deaf and sighted, she volunteered to be my Guiding Person for a month so that I could complete trainings, countless errands, and literally ‘get the point across’ to people around me in terms of how they should be around me as a Deafblind person.

Guiding Person, a term coined by both of us to describe what Americans call “Support Service Provider”, what Canadians call “Intervenors” and the Europeans what they would call in their own language, simply, a sighted person who would work with Deafblind people as requested – interpreter, guide, visual informant and/or communicator. We decided, for Nepal, it would be simpler and easier to translate if we said “Guiding Person”. We used that term for a month in Nepal, and it has seemingly caught up and people here did find it easy to identify the role Roni was undertaking with me.

It was our agreement between friends that Roni would act as my Guiding Person whenever I needed – mostly for travelling out of my comfort zones and for errands/meetings I’d do for my Deafblind Project. She would also help provide examples of what a proper Guiding Person should do, in our daily lives when interacting with Deaf and hearing peers, and in our Deafblind training programme.

And let me tell you, the results were vastly different than when I singularly attempted to educate somewhat the hundred-plus Deaf community and my neighbours. They finally saw a real, living example of how they should act, talk, communicate, and guide me with the goal that I would be more independent and self-sufficient.

My friends here in Kathmandu keep clamoring about how they finally see the ‘big picture’ of how they should be around me, and for that, they truly respect Roni for her years of work with the Deafblind and not only that, her high level of comfort of being friends with a Deafblind person without the sense of “burden”.

My neighbours, once a time, were so insecure about a Deafblind person living upstairs for fear I would set the place on fire, cause great deal of burden, make them cook 3 meals a day for me. It just all came from a new sense of ignorance – they’d never heard of such an independent Deafblind person before or even acknowledged anyone without hearing and sight in Kathmandu in their entire lives. Surely, they got a bit more at ease once I moved in, but their attitudes made a 180 degree turn during the time Roni was here. They began to see that with the proper sense of ‘help’, I could lead a fully independent life – cook for myself, make trips out, have a real job, and with clear communication methods I could fare just fine. Now that Roni is gone, they’ve become more involved in my life and I am grateful for the change in attitude.

I’ve always had the privilege of having intervenors on hand for most of my current adult life in Canada despite not using it often, and for my extensive one-on-one work experience with SSPs in Seattle and Washington, DC, and then when I arrived in Nepal nothing like that existed. I was on my own, but of course with the generous offerings to guide by my own partner, Pratigya, and several of his close friends. But nothing concrete, professional and with extensive training knowledge of Deafblind culture, norms and rules. Basically when I wanted to start a Deafblind project here, I was starting at scratch without a Guiding Person to professionally aid me in my efforts.

So for one month, I had the fortune of having Roni offer her Guiding Person services, her expertise of overcoming barriers (she recently hiked 7 months on the Appalachian Trail with a Deafblind man!) and most precious of all her friendship. My friends’ lives were transformed by her presence, and now I can live in Kathmandu for the time being knowing that they are far more aware of their capabilities to keep me informed, safe, and independent. It goes to show you that a small seed will grow itself into a giant oak tree of knowledge with deep roots that are here to stay.

If you have a Deafblind friend out there in need of a Guiding Person, for an hour, or a day, or a month – go and empower them, transform the lives of people around your friend and both of you will gain so much more than just a period of trained companionship.

Tactile love to you, R.


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2 Responses to Nepal Journal #2: How An Example Changed Lives

  1. Dianrez says:

    Special Service Providers, Guiding Persons, whatever they are called, are truly unsung heroes. Ever since Anne Sullivan, they have helped professional Deaf-Blind people soar and accomplish great things much faster and more easily.

    It takes special training so they don’t become takeover people or controlling the DB person. Just like interpreters, they are professionals themselves who enhance, not overwhelm their clients. Often they become advocates, too, who educate and instruct people around their clients so that when they are absent, it does not create a void.

    Coco, you’re a real trailblazer. Not only in educating the DB community and their families and teachers, also in creating a Guiding Persons profession that will work well for the country’s up and coming DB professionals. Handwaves to you and those you train!

  2. Hex says:

    Coco, this is terrific. Thank you so much for sharing. You continue to inspire and educate. Keep it up! Roni, you are selfless. You’ve both made a difference. Champ.

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