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African Journal #28: Departure from Usherhood

Posted Mar 31 2009 12:00am

The sun is shining. Thermometers are exploding at 102 degrees Fahrenheit. Maitama has become my new zip code in Abuja. At the Christian Blind Missionary, Disability Rights Unit, 13 Okemesi Crescent, the staff are upbeat and the office desk has been nicely set up. Books and brochures brought in from the United States and Canada are lined up on the shelves. Finally, this girl has found her ideal placement and has her sleeves rolled up and life was getting good. But she cannot stop thinking about the experiences she had gone through in her time away from Naija. Meeting many, many people like her. Those who had vision diminished, or in tunnel circles. Loneliness wasn’t a word in this girl’s vocabulary as she lived through Usherhood. Scores of people, seeing out the end of the tunnel find comfort in others who see the same. Stories and stories of these events flood Coco’s mind when she’s far away in a land where deaf-blind people are hidden out of shame and turned away from schools and homes. Comfort is knowing they’re all around you, bearing the same burdens and views on the world. At the Ontario Usher Syndrome Association Christmas party on December 2nd I decided to surprise my fellow Usher Torontoians at their annual OUSA Christmas Party. When the elevator opened, my friend Megan and I walked out into the recreation room. I wasn’t sure who would recognize me first since they all had partial, limited or no vision. A cherubic looking woman with glasses and short, tousled brown hair and bright red cheeks came running after me. The closer she got, I still could not recognize her face. She was someone new, someone so bold to hug me upfront. She introduced herself as Patty, and adored my blogs. She, too, had Usher’s and had just joined OUSA. The thing I felt immediately was her giving spirit, how she would warm up to others and show such a caring heart. My new friends Patty, Merico and I showcased our sheer Usher spirit and roamed through Toronto with Patty’s sighted husband as the poor guide. Elio Riggillo, the president and founder of OUSA continues to amaze me with his gentle look but barbarian spirit, fighting for the rights and justice for the Deaf Blind people in Ontario. (www.usherontario.ca) When I flew in Scotland mid-January, I had the expectation I’d visit the Edinburgher Deaf Action Association. Going to a deaf school, deaf club, deaf social event in another country is part of the cultural experience. After being distracted and ill for three weeks on and off, I finally found my way to Deaf Action organization near St. Andrew’s Square and the Art Gallery of Scotland. Once I arrived, I met a cool interpreter by the name of Paul, and his British Sign Language clashed with my American Sign Language, so we decided to attempt a whole conversation in Universal Sign Language. And it worked pretty well, for most of the time. He introduced me to a Deaf Action employee, Debra, who had Usher’s. Goosebumps tingled throughout my body, this was a Scot with Usher’s in front of me?! Not that I thought Scotland had no Usher’s, just that she appeared out of no where and we had a gigantic thing in common! Debra and I stood 5 yards from each other, signed in restricted boxes to fit our circle of tunnel vision, and signed in Universal Sign Language. Nothing stood between two strong Deaf Blind women discussing Scotland’s Deaf Blind politics. I look forward tactiling with her on a beach near my future dream home on an island by bonny Scotland. In a brightly-lit pub in Dusseldorf, Germany, several Usher buddies were gathering, away from the bitter cold of mid-February winds. We moved around in our booth repeatedly, trying to find the best seat that suited our eyesight. One nearly-blind Usher guy would sit between me and Thomas, a sighted friend, and tactile both of us. I would be able to see Thomas from a distance, and tactile with Ralf in between us. Across from us, two partially sighted Ushers would sit with a sighted friend and we’d see/tactile eachother just fine. We didn’t sit down in our first choice seating and remained mum on struggling to see. We voiced our desires where to sit based on lighting and tactile opportunities. We were not afraid to be open with one another about our seeing needs. The two sighted friends understood and obliged to move anywhere we wished. And it led into many, many good conversations with four Usher buddies into the night, heads filled to the brim with delicious Dusseldorfer Altbier. (Taubblinde von Recklinghausen/Deaf Blind Association of Recklinghausen, Germany est. 1994) Bubbling Swiss cheese in a fondue pot let out a sour but delicious smell throughout Beat’s apartment in Zurich, Switzerland. Beat had invited several Zuricher Usher buddies, as well as his sister who was also diagnosed with Usher’s several years before Beat. He and his lady cooked a traditional Swiss dinner of fondue for the group and their sighted partners, for a festive night to introduce me to their lives as Swiss Ushers. I spotted a bowl filled with green peas and I swallowed some. Realizing it was a bowl of spicy Japanese wasabi peas, I got up and did the hot dance, and ran to Beat to ask for water to hose the fire in my mouth. He told me to go and get it myself, as I was a comfortable guest in his home. So I ran, literally, ran to the kitchen, forgetting there was a slight 1-cm step from the living room to the kitchen. With my speed, I slammed into the “step” and broke my thumbtoe. It turned a beautiful royal purple and black, while I forgot the pain with an evening of tactile and box-signing in Deutsche Gebardensprache with my fellow Usher buddies. (Beat works in an office in the Deaf Association in Zurich (as an in-building advocate working for the Zurich Blind Association. www.szb.ch) It was a glorious day in the end of February when Gijs took me out to the Zentraal station to meet a Belgian Usher buddy of his who had decided to take the train to Amsterdam for the day. Tinne had brought along a sign language interpreter for me and Gijs, as she did not know signs. Tinne wore a cochlear implant, and it was slyly hidden behind her brown locks. “I like the crepes,” Tinne told the interpreter, who signed in Nederlande sign language to Gijs. He would translate NSL into ASL for me using his years and years at Gallaudet. Faced with complete blindness and limited hearing with her implant, she decided it was in her best interests to learn Belgian sign language, so her chances of talking to many people through Belgian signs and universal signs would increase so much more. Gijs continues to fight for the rights and independent living for the Deaf Blind people of the Netherlands, with the Amsterdam Deaf Club (www.swda.nl). In the small basement meeting room, thirty Deaf and Deaf Blind Londoners filled up the seats and watched with interest at Coco’s slideshow from Nigeria and abroad, laughed on cue with her stories and animated face/body expressions, and mulled volunteering for my overseas organization. It could not be easy as it looked, because of interpreter difficulties and the high number of Deaf Blind people that showed up. Des, a Usher buddy and lecture organizer, signed in British Sign Language. I tactile with an American friend, whom during her 2 year graduate studies at the University of Bristol, mastered BSL. Hands on signing hands clasped together as sighted BSL users interpreted the information. Soon after, likened by our experiences living with Usher Syndrome, Des hosted a Usherhood Pub. How cool is that? Usherhood Pub! (www.rnib.org.uk, www.vso.org.uk ) Usherhood is simply the term described what Deaf Blind people are going through as they are diagnosed with a sight-deteroriating condition that would eventually blind them completely. Canes, box-signing, conversations by a long distance, tactile with sign language, accidents, broken bones, empathy, laughter, love, supportive allies all make out for a decisively small sub-culture within Deafblind culture. Usher Syndrome dominates 1 out of 10 deaf people in the US. 10% of the worldwide Deaf community is legally or completely blind. Cases in Quebec, France and the French Bayou in the Deep South of the USA, as well as Seattle, have a high incidence of people diagnosed with Usher Syndrome. Suspected cases in Africa and Asia have come up out of the blue, but harder to diagnose when fearful parents dispose or hide their Deaf Blind children in developing countries. So, like childhood, teenagehood, adulthood, I’m going through a Deafhood, Usherhood, and a Deafblindhood. Whenever my search for a Deaf Blind Nigerian comes up drier as the Sahara desert that blows a sign of hope once a blue moon, I look out to the horizon and feel them out there. I know they are, in their dark and silent shells, dreaming of a better life. Good lives are led by many with disabilities in modern societies, and I know my rights there. I experience Usherhood with buddies, we share a secret bond of torment, challenge, inspiration, determination, frustration and tactile love. All over the globe, I set out in search for others who need to know they’re not alone in their Usherhood or Deafblindhood experience. Live out our ‘hoods, for better or worse, but together. Tactile love, Coco

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