Tactile The World

At First Sight, At First Tactile

July 29, 2009 in Blogroll | 3 comments

My hands are shaking. I’ve taken so many deep breaths thathe carbon monoxide in itself could inflate 100 children’s balloons. My senses of touch, smell, taste and sight are heightened. For a reason, my eyes are seeing out rather differently. I saw something that truly inspired me and devastated me at the same time. There are so many words running through my head, my fingers pounding the keyboard in rythym with my heartbeat while my narrow tunnel-like sight is fixated on this laptop screen. Everything I see, do or touch now has so much more meaning to it. A movie made over a decade ago has captivated my thinking and turned it upside down during the 2 hours it ran. ‘At First Sight’ starring Val Kilmer as a blind man diagnosed with severe cataracts since childhood and his sighted lady love, Mira Sorvino. For so long I’ve heard compliments and words of amazement for this movie and unintentionally forgot about it.

Today I chose to watch it and I’m glad I did. The man who was blind all his life could see in his 30s then went blind again after a few weeks. I am a woman in my 30s who grew up sighted then started going blind so fast then perhaps in ten years there’d be a cure for what I have and I’d see again after a few years of complete blindness. Retinitis pigmentosa is slowly robbing me of my sight and right now my life is focused on getting ready for it. Virgil, the man that Kilmer portrays, is going backwards. He grew up a fully blind man, went through blindhood from an infant to a full grown man who became accustomed to that life. He grew up reading Braille with his hands then slowly learned to read text when he could see, I grew up reading size 6 font to size 22 font today. It was like watching myself go backwards in a parallel world. He trusted his instincts through touch, taste, smell and sound. I trusted my instincts mainly on sight. I let my tears flow when he was in the operating room with hopes he’d see for the first time, while I was in the same operating room with a simple cataract procedure which damaged the vision in my left eye, leaving me blind. I now see out of only one retina, with only a small circular space of visuals remaining. He had to learn how to read text, identify objects with sight from touch, tell the difference between a real apple and a picture of one, look at himself for the first time in a mirror and take a long look at his loved ones. In the meanwhile, I am learning how to read Braille Level II, misidentifying objects from loss of peripheral (3-D) vision, looking in the mirror as if I’m seeing a stranger but when I look closely I realize it’s me and lastly memorizing my loved ones’ faces in hopes it’ll never disappear once I go blind. That’s harsh reality for me and for Virgil, it was a dream come true. I’m struggling to become more comfortable with new, strange environments just like he has but he has no permanent dread of sight, I have a deep fear of being blind. But his love for life, my love for life gave us the courage to go on.

The love story between Virgil and Amy sent tingles up my body. The flirtation, the tactile experiments, immediate attraction to each other and there’s the lovemaking scenes of course. I have experienced fragments of what they went through, only because I have not met the love of my life yet however I’ve had my meaningful emotional and intimate relationships that take place in friendships and acquaintances that are so special that I want to share everything in my own world. I cherish touch, most especially from a lover. I cling to optimism from people I love, its radiation effects brighten up my life. I touch a lot of people’s lives and they touch mine, too and one day I’ll steal a man’s heart even if I’m depending on a cane, memory, instincts, remaining three senses and support in a life without sight. It takes one special person to have that instinct, love, understanding, compassion and patience to love someone who’s Deafblind. He’ll come along eventually, like Amy did for Virgil. He’ll learn how to live a life as a blind person through my blindhood, and I’ll learn how to live the visual world through his vivid yet real imagination. Tactile love comes in so many different forms – permanent and temporary, unconditional or short yet meaningful, even if one has sight and the other none.

Sometimes I would wonder if I would grab the chance to see again if they had a cure for my full blindness. I honestly don’t know – only time will tell. If it wasn’t for my blindness, I would be an entirely different Deaf person today. Life would be so different, perhaps less appreciation for what I have. I think I would be a very strong person when the time comes, when the curtain is pulled on my sight and I think I know I will be allright.

Tactile love at first touch.

Coco

UPDATE: Where’d She Go To, Now?

July 27, 2009 in Blogroll | Leave a comment

Update: Where’d She Go To, Now?

July 25, 2009

You say my life is so darned interesting. I think it’s pretty cool I get to visit foreign, faraway lands, learn a few languages and meet amazing, unforgettable people. What fortune it has been, but also a heap of obstacles, messes, speed bumps and dark days.

You are all wondering what the heck happened in Africa? What am I doing in the United States? What’s next?

I will confess that my current life as a nomad (hopping from one house of kindness to another) has somewhat given birth to writer’s block. My life is pretty much on the fast lane, making one swift decision to the next, to keep my survival continuous, climbing gigantic hurdles to small molehills. I can only imagine a very few of you totally understand what I mean. So here’s a few tidbits what’s going on with me, what happened? Answers and what the crystal ball says about my future. I thought I’d risk having dark circles under my eyes just so that I could send this out to the folks out there. Ba wahala.

In May, it was a mutual agreement between me and VSO to end my service with the organization. For so many reasons, but it was a tearful, amicable and sweet parting. No bad feelings, only admiration for each other. We were all amazed that I had lasted three placements, 16 months as a volunteer Idespite being in and out of Nigeria) and the successes I made in the country. So we parted ways June 9, 2009 with me enroute to Toronto.

In Toronto, I met up with several crazy Canuck buddies for weeklong summer days. Two of them dear to me, whom have Usher Syndrome as well, made my first three days as fun but relaxing at the same time. I got sick from a nasty stomach bug all throughout my stay in Toronto. Yuck. Then I was off to Belleville, an Ontario town that was home to my childhood alma mater, Sir James Whitney School for the Deaf. You bet I couldn’t pass up the opportunity to say hey to ancient teachers, counselors (just kiddin, ya know me…) and the awesome changes it has made in the past ten years since my high school graduation (yes, I’m THAT old). It was surreal to see the aged faces of people I was raised throughout the school days and nights. Needlessly, they were triple-shell-shocked. I was sporting (blonde!) Nigerian Didi braided hair, slimmer, (mature!) volunteer that returned from Africa sporting a tall, white cane for the blind. They realized I grew up, from an ugly duckling to a swan, and that my Usher’s had rapidly worsened but transformed me into a strong person. I saw my old History teacher, Mrs. Pheiffer (who I admired but disrespected her tough stance with some pranks and foul mouth), my former intervenor, Rose, and the slew of counselors of the residences I’d lived in before (Calico, Rainbow, Keukenhof, Greene Hall residences). One counselor, Ms. Carr, outright asked me how my shoulder was. I laughed and told her it’d been dislocated for the 22^nd time a week prior. (I defied Ms. Carr and rode the bike alone on campus as a 14 year old, and while speeding, fell right on my shoulder and popped it out). Good memories continued with McFarlane asking me how my pinky was. (I rode a mini gas powered motorbike across her home lawn during a residence summer BBQ, and despite her protests my sight made it impossible to ride I defied her and rode into a empty tank covered by rust and cut metal, almost chopped my left pinky off). It was truly nostalgic and wonderful to meet them again, especially the new principal, Linda. I like her. I left Belleville in horror realizing I forgot to take snapshots of the old farts at SJW and myself, and my best friend Sarah and I. What a bummer.

My father was thrilled to receive me home, gave me a warm homecoming and it was going to be a good two weeks kicking back and relaxing. Well, let’s say even with Dad’s satellite broken and no television channels available, my home life was still eventful. Doctor appointments, a hush-hush minor surgery (you’ll laugh and spread wicked rumours if I ever told you) having another best bud, Keri, come up from Yankee Doodle Land and spend a cool, rockin’ Canada Day with me. The patriotism took place July 1.

I left my Daddy, who was still holding me for a long while before we parted, and promised him I would *try* to be good and behaved and alive. I spent a week in the awesome northern Vermont mountains near Burlington with Keri and her groovy family. Went for a hour’s hike throughout the rugged woods with Keri, who’s an awesome support hike provider! That kind of thing makes me feel good – being able to don hard hiking shoes, lean on my trusty cane for support, and the other arm firmly grasped around Keri’s. We brought her 2 young tykes, her Ma and Pa. Nature’s such a beautiful gift we have.

Right now I’m in a suburb of Alexandria, Virginia sitting at the dining room in the home of a college friend and knowing there’s so many emails, sites, friends to remember checking in on. Half of me just wants to kick back, fully drink in the excitement of being amongst friends and not worry about the piling thing I try hiding in the basement. But reality is, travelling in the States doesn’t mean I have access to wireless all the time, nor the time for it. I’ve got a lot of commitments and trying to deal with them one by one with every opportunity I get. I’m writing this now on a Word document, then tramsferring it onto blogs, sites when I have a live connection with Internet. Rather quasi-primitive, don’tcha think? One day in the next few years, I’ll have great internet speed lying back in a canopy between palm trees on a white, sandy beach of New Zealand, or perched on top of a thick Amazonian branch pounding away emails, sending out orders for pizza (for my American friends as a surprise) with wifi in an igloo in N. Russia, reading Perezhilton.com from the dunes of Naimbia, or doing a fast read up on Google on the Khmer monks while sitting in a faraway, solitary temple in Kampot? Mindboggling eh?

I’m jetting off to the West Coast by the first week of August. Portland and Seattle are my next two favourite pit stops. Surrounded by lavish and luscious natural resources, and amazing tactile love from my Deafblind community.

I know a lot of you are asking this question: how the heck does she afford it? Where’s her money tree? Well, I know, it’s amazing! I’ve traveled cross country in the summer of 08, returned home the December of that same year, then whisked off to Europe for an amazing eight weeks, and plop back in Nigeria. Now this city-hopping before my next destination: Asia. Asia?! What on earth?

Last summer’s trip was funded by VSO through their monthly salary which was the very same as Nigeria: $330 a month, and I had the kind welcome of friends and family into their homes. My fundraising money from that summer was spent well (see a previous note I wrote) and with some people’s wishes, I used some of it to support my travel expenses and meals. Then Christmas time became a scary time for me and my family, when I discovered I had glaucoma. VSO sent me home on medical leave til January. Then when January came, they said that my new placement with the Christian Blind Mission was not ready until March, as well as my interpreter’s visa procedures were taking forever. So they agreed to continue my meager salary while I travelled Europe giving lectures on behalf of VSO. I was invited to speak in London, Amsterdam and Zurich four times. Some of the hosts paid me pretty good, some of them covered my flight and rail inside of Europe, and welcomed me in their very generous homes in return for a presentation of my life as a Deafblind volunteer in a developing country. I was lucky to be invited, guided, dined, comforted and loved by many in Ireland, Scotland, England, North and South Germany, Switzerland, Holland. I only spent one night out of two months in a hostel. I stayed with host families, friends, Deafblind folk and strangers. They provided me with shelter, love and food. I spent very little of my own money traveling Europe. What an amazing blessing.

What about now? VSO has a policy on paying its volunteers an end of service grant, and I was granted a good amount of money. I used that to book my flights for several cities, including Taipei, Taiwan for the Deaf Olympics in September. So along with some financial support from the Canadian government, my family, and the sale of my African Kebbi bags ($10, made by a Deaf Nigerian woman), and bracelets made out of jade, various stones and beads by Patty Keen of Toronto – a great Deafblind woman who’s blossoming as a leader. The sale profits would help generate cash flow during my travels in Asia for the whole fall season.

My goal is to leave September 4^th for Taiwan where I will experience my first weeklong Deaf mass meeting (I only attended one day of Deafway II ’02, and one day of WFD Montreal ’03). After Taipei, I intend to leave for Cambodia on September 15^th, arriving in Phnom Penh where I will stay with an American friend for several days. There is a Deaf Development Center there run by a Deaf Briton. Then it’s off to spend nearly three weeks in Kampot, a village where my American friend works for a Deaf arts center. I want to immerse myself completely in the grassroots culture of the Khmer people, to understand the scars that Pol Pot left on the country, and to appreciate what serenity these people seem to harbor towards others. For the end of October, I’m hoping there’ll be a way for me to visit Laos, Vietnam and Thailand – all of which border Cambodia to the north and south. November might bring me opportunities to visit China and Japan, but it has not even passed the first stage of planning (networking) and it will depend heavily on the funds I have. I hope that the sale of my Kebbi bags and bracelets will support more weeks in Asia, and sources of favours to trade in for lectures that will help prolong my trip in the Orient. December, there’s the hard decision of visiting the nature paradise island of New Zealand for Christmas and New Year’s (and my 30^th birthday) or meditating it with yogis in Goa, India and mingling at a Indian Deaf Leadership Conference in Punjabi, northern India near the Himalayans and Nepal alongside the Silk Road and the famed Darjeeling Express. I got both invitations this week to join friends there and there. I guess when the time gets closer, signs (like in The Alchemist) will tell me where I’m destined to be next.

Every night when I sleep – be it on an aero bed, on a sturdy Nigerian foam mattress, under Canadian goose down blankets or on a lumpy but comfy couch – I think of people that are loved ones, mere acquaintances, amazing folk and complete strangers who have hugged me or passed by me. I wish I could clone myself so I could pay attention to everything, everyone and everyplace. However, there is only one Christine Amanda Roschaert, and that is how I live, folks. You know once I see you in person, it’s back to where we left off, easy. In the distance between us, we know we think of one another and send telekinetic messages of “I love you”, “I’m thinking of you” and “Here’s tactilin’ ya, babe”. If someone truly needs my attention, come see me, resend that email or find a way to reach me.

Keep your eye out for the next edition. Perhaps it’ll be more interesting once I start writing in Taiwanese.

Spin the world and tactile love it,

Coco

If you want to support my backpacking endeavours in Asia by offering connections or funding, email me at tactiletheworld@gmail.com , or make a donation on Paypal to this account tactiletheworld@gmail.com . Many thanks in advance!

African Journal #29: Hold My Hand in the Silence and Darkness

May 16, 2009 in Blogroll | 8 comments

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

African Journal #28: Departure from Usherhood

March 31, 2009 in Blogroll | 1 comment

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