When I was 2 I met my first Deaf friend, then thousands of Deaf friends after that. I met my first Deaf teacher when I was 11, and had hundreds of Deaf teachers after that. I met Deaf children from 12 different countries in Paris, France when I was 12, and I have a long list of Deaf international connections after that. I felt Deaf pride, boasted my Deaf identity and showcased beautiful American Sign Language. But Deafhood yet still didn’t make me feel complete, normal within our cultural status, because I was also blind. That separated me from the scores of Deaf people I knew, and out of a blue moon would I meet someone ‘like’ me during my childhood and teenagehood. There were three kids in my school who had Usher Syndrome, too, but we never spoke of it. I met my first Deafblind mentor when I was 19 at Gallaudet, but he didn’t become a mentor until I was 23. I was ashamed of having Usher’s, but mainly because it was never talked about and visualization was everything to the Deaf community here, there and anywhere. As I recall, there were no Deafblind role models growing up, so I felt ‘alone’ in my Deafhood. Once I accepted the fact I was going blind, and immersed myself in the extraordinarily unique and close-knit community of Deafblind people at home, nationally and worldwide, I began to feel less abnormal and less alone. I just knew, in my heart, that there were aplenty of Deafblind people around the globe that felt alone, and I wanted to reach out to them and let them know they weren’t.
Chance, opportunities, inspiration, lessons, goals, dreams and fate led me to Nigeria as a Voluntary Services Overseas volunteer, and I set out with determination to find more Deafblind people and reach out to them, educate them and advocate for them. Only my high expectations were struck down by a hard blow of reality. A task I once thought would be somehow easy turned into a frustrating odyssey to find a needle in a 1,000 acre haystack with my tunnel vision. But not all hope was lost, in a year and half of serving three placements in Nigeria, I have met three Deafblind adults and no Deafblind children. Let me tell you a bit about them. Hassan, a 36 year old man with a receding hairline, stocky build and a still demeanor, lived in Birnin-Kebbi all his life. He was a man of the desert, but was like a child in a bubble. His father was a very important man in the State Department of Education, so Hassan was well taken care of, as well as his three younger Deaf siblings, two brothers and one sister. The younger Deaf siblings were taught at the Kebbi State School for the Handicapped in town, but it is unclear whether Hassan received education growing up as the Deaf school opened in Birnin-Kebbi in 1996, when Hassan was 23. When the principal told me that there was a Deafblind teacher employed at the school, I was over the moon. Umar introduced me to Hassan, and my delight turned into worry and frustration when it turned out that Hassan didn’t know how to use ‘my kind of’ Tactile in our sign language, nor was assertive enough to let me know his preferred communication method. I didn’t know whether to stand far away from him so he could see me, or wear a black T-shirt so he could see my signing better. I had absolutely no clue what form of blindness he had, nor did anyone else. They just said he couldn’t see well. The staff used ‘their own kind’ of Tactile with Hassan to communicate and I found it somewhat oppressive, restricting, harsh and sometimes abusive. I taught the staff how to properly tactile, but they became confused when I said this is the right way, but Hassan preferred the old way. I soon found out that Hassan was, for lack of better word, slow. He’s not exactly developmentally disabled, but he had difficulty expressing himself and communicating his thoughts. Thus, I was secretly baffled why Hassan was teaching a classroom of Deaf children with his visual and mental condition. But I kept my mouth shut. I set out to get forms filled out for Hassan to attend the Helen Keller National Center in Long Island, NY in 2008 but it’s still been a long road and his training at the American center is still uncertain. To this day, Hassan refuses to use a cane and feels so alone. I could tell that he was the tiniest bit happy I was in Birnin-Kebbi, but I don’t really think he ‘understood’ completely that we were alike in our Deafblindhood identity.
I won’t say too much about Itola, a grown woman who has Glaucoma and living in Abuja. We met through a Nigerian interpreter once in 2008 and once in 2009. I don’t know that much about her, sadly, because during the two times we met, I was in a pickle (the first one dealing with 20 other people at a friend’s birthday party, the second at work when I had a deadline to meet that very day). She came off as enthusiastic and perky, curious about my work and my life. I have lost touch with her – in Nigeria, over half of the country’s citizens have no access to the Internet. I made a promise to myself that I would meet her again before I leave Nigeria, and that she will know that she is not alone.
It was several months of planning and strategizing to get Simon to Abuja for evaluation by the Christian Blind Mission but he finally got to my office on May 7, 2009. A VSO volunteer and a driver brought the 66 year old man to me, and left us alone for some time but not before explaining to me Simon’s sight, his needs, his medical condition and then left. My interpreter, Staci, was ill with a high fever that day, so she was subdued as I worked with Simon. The first thing I did was write in very, very large, bold print in market on a white paper, “My Name Is Coco. I’m a volunteer from Canada. I am Deaf and blind just like you”. Simon’s sight only allowed him to read slowly the large print in direct sunlight, so as we sat in the office, he moved closer to the window and struggled to read every word. I stood there for five minutes, but it felt like it was an hour. My heart pained to see him holding the paper, his hands shaking and his forehead crumpled up in frustration. I understood that feeling – I would get that way when I read small print but my hands would remain still. Simon was a healthy 64-year old man living with his daughter and wife in Kafanchan when he became ill of an unknown cause. His doctor prescribed him double the dosage which caused an overdose that resulted in loss of all of his hearing and left only bits and pieces of his sight. Gone, just like that. He lost his job as a journalist at the Nigeria Daily Tribune and the surroundings he once knew inside and out became uncertain and unfamiliar. His family felt so lost, hopeless, but loved him so much it broke their hearts to see Simon like this. Simon told me all this while we wrote back and forth on 100 sheets of plain paper with thick marker under the direct, hot, blazing afternoon sun on a bench. We were sweating buckets, but if this was the only way Simon could communicate, so be it. Simon turned down several offers for drinking water and continued to scribble away. He told me he had “noises” in the head and heard them tell him negative things sometimes. He longed to return to his normal self, but I sensed he was already retreated to the fact he had a very long shot at that. During a break from our writing, I taught Simon how to use a guiding cane, a brand new cane I got from the Lighthouse in Seattle to donate, but Simon preferred his walking cane to lean on for support. His balance was quite terrible, because of his age and the shakes brought on by the overdosing accident. But he wanted to keep the guiding cane, to practice in Kafanchan and that made me really proud. Dr. Julian Eaton, CBM’s resident mental health counselor from England, did me a favour and examined Simon for his mental capacity, and I observed an hour-long conversation between Dr. Eaton and Simon on paper. Simon, who had been hearing perfectly most of his life, spoke with his voice but for Dr. Eaton to talk, he had to write to Simon. Dr. Eaton told me his observations, and offered to take Simon in as a client. He suspected the Deafblind man suffered from tinnitius, which caused most of the ‘noises’ and the voices would be from the stress of becoming Deablind so suddenly. Julian would take trips to Kafanchan with CBM and meet Simon’s main caretakers, so that Simon would be closely monitored. He was also fitted for a hearing aid at CBM, but the audiologist said he was tone-deaf. In our last written conversation, I told Simon this:
‘Simon, you were a journalist for the NDT (Nigeria Daily Tribune) before you became blind. If your noises are gone, will you please write articles for national and local newspapers about your plight? Children who are Deafblind in Nigeria are nowhere to be found, because parents hide them or abandon them or worse, kill them because there’s no hope or opportunity. Please, Simon, think about it.’
After twenty minutes of struggling to read my “long” note, he turned around, his small pea eyes looking out at me through the large black rimmed one-inch thick glasses and I felt his hand search for mine, and he squeezed it. Hard. Then he wrote, shakily:
‘I will try my best. I feel so sad, about the children. It shouldn’t happen. I’d love to write again.’
Simon left CBM with a bag full of surprises from me: tons of scrap paper and five markers for him and his caretakers; a brand new guiding cane; an used Braille instruction book; several pamphlets on ‘Interacting with Deafblind’ and ‘Support Service Providers for the Deafblind’ for his caretakers and his family, and a fingerspelled manual alphabet flash card. I hope to see Simon before I depart Nigeria, to assure him that there are two other people, Hassan and Itola, and hundreds of hidden Deafblind people and children that he needs to reach out to through his writings.
The same goes with Itola, it’s my hope the stars align so that fate will allow us to meet and I will tell her that her energy is much needed to find more people, like her, like Simon, like Hassan and advocate on their behalf. That, folks, is the answer to feeling less abnormal and less lonely.
My life’s dreams and goals will always revolve around finding, supporting and loving my Deafblind peers here, there and everywhere. In Africa, Europe, Asia, Australia, Middle East, North & South America and even Antarctica (Deafblind penguins, anyone know?), there are Deafblind people yearning to meet others who are going through Deafblindhood, to bond with them and to share sadness, triumph, success, cane measurements, visual acuity and bruises with others who know how it feels. To hold their hand is like giving them hope to live. That is inspiration and a life’s work for me.
Tactile love,
Coco
