Coco: I came across this article and wanted to share. Pretty spot on! People have these assumptions and misgivings about people who are legally blind, and it’s frustrating.
Despite having some residual vision, I identify myself as Deafblind, but in no uncertain terms, for many other political/medical/clarifying purposes I call myself legally blind, but find that label ironic. Legal? Hmm. Wonder where that came from?
Be astounded and inspired by this Deafblind woman from Mali who came to America to get an education – specifically law school at Harvard. What an accomplishment! Read more in the transcript of the radio interview to learn more about the journey Haben took to accomplish her dreams.
*hands waving and feet stomping*
There is so much inspiration to go around in the Deafblind world.
Coco interviews Eddy Morten, a Deafblind Canadian from Burnaby, BC in this interview he shares his experience with Air Canada 10 years ago when they removed him from his plane and demanded he fly with an assistant despite his frequent travelling experience.
Interview on June 21, 2013 in Burnaby, BC
ASL
Coco interviews the hearing Principal of a deaf school in Madagscar and the president of Deaf association, Ruby and Dimby respectively. Location is at the Bras-Panon Vanilla Farm in Reunion Island on the Indian Ocean, May 2013.
My vlog details the disappointing events that happened on June 7 in Ottawa, Calgary and Edmonton with Air Canada and the airport authorities.
28 minutes long, American Sign Language
This transcript was completed by Christine Wilson, an interpreter in the Ottawa area with Sign Language Interpreters Association of Ottawa with contrbutions by Arista Haas, of Edmonton. Thank you from the bottom of my heart.
Xoxo
Coco
TRANSCRIPT:
Hi my name is Coco, short for Christine Roschaert . I am Deafblind. I want to share my horrendous experience flying from Ottawa to Edmonton on June 7th , 2013. I shall sign in ASL although I would like to express my story in International Sign Language for my friends around the world, however, I am emotional and prefer to express in ASL. Perhaps my story will get captioned or written in text for hearing people and Deaf people worldwide so they too can hear my story.
I was flying to Edmonton in western Canada where I would be giving several presentations to the Deafblind community and the Deaf community.
I have been planning the Edmonton trip for three months and will give presentations with the help of my good friend Merico, president of the EFDB , the Edmonton Fellowship of the Deafblind. All was arranged and I was to have a direct flight to Edmonton at 7 am.
I was up at 4 AM and my father and I drove to the airport and I checked in my two suitcases and got my boarding pass. On flights within Canada, my father has been able to get a pass to accompany me through security and to my departure gate where I then continue on by myself. On this trip, things started off okay. Sometimes I bring friends through security with me at different airports when I am travelling within a country, say from a US city to another US city. They do not fly with me, but accompany me to the gate. It has not been a problem.
My dad and I went through security and arrived at the gate where he would leave me.
We sat down at Gate 15 and after a few moments, my father had to go because he was parked in a designated handicap parking spot. My father spoke to an Air Canada staff person and explained that I was his daughter and was Deafblind and would need some assistance to board the plane. The woman made a note and indicated that there was no problem, the plane was on time for 7AM and was direct to Edmonton and they would ensure I boarded the plane. We said our goodbyes, my father left and I settled in to wait.
At other times, when I travel alone, I ask the airline to call one of their trained assistants for the disabled who then accompanies me through check in and to my gate. This has never been a problem, worldwide, so I assumed, as usual, that all was in order.
When it was time to board the plane, I was guided onto the plane without any complication. I was first to get on the plane and the people in the waiting area watched me go. When I got to my seat, the two female attendants greeted me and they put away my carry on in the overhead. They pointed out my seat and I sat down ready for the flight ahead.
Everything was going well… Until a tall big shouldered man arrived and started talking to me. I indicated that I am Deaf and showed him my boarding pass. He ignored me and started talking on the walkie-talkie and then motioned for me to accompany him. The two attendants informed him that everything was fine. The guy shook his head ‘no’ and talked on his walkie-talkie again. I was confused and wanted to know what was going on. I tried to read the badge on his shoulder. I couldn’t quite catch it, but, I believe it indicated he was an air marshall. Then the attendants took my carry on out of the overhead. The air marshall indicated to me that I had to get off the plane. I was surprised and wondered if I was in some big trouble. I started imaging what it could be: plane trouble, my baggage had been checked and my health foods were suspect, etc. I knew I had no medications. So, I followed the “air marshal” who, judging by his fascial expression, was angry about the situation.
I was very embarrassed as I was being escorted off the plane and back into the waiting area.The same people in the waiting area were still waiting to board the plane and they stared at me. The “air marshal” gestured for me to sit down and so, I sat down and waited for the situation to sort out.
An Air Canada manager, with glasses, dark hair and likely in his 40’s, came up to me and asked me if I could lip read. I said no and gestured that I was Deaf. I opened my iPad and indicated we could communicate in writing.
My flight, by the way, was Air Canada #103 direct from Ottawa to Edmonton at 7AM.
We communicated on the iPad. He explained that the reason they pulled me off the plane was because I did not have a medical clearance to travel alone because of my Deafblindness. He explained it was an Air Canada policy.
I have travelled extensively, worldwide. In fact, this year I checked off the 50th country I have visited and my passport which is two years old, is 2/3 full with many stamps from countries I have visited. I have travelled by plane since the age of 12 and never once have I been denied access to a flight because I am Deafblind. Never once have I been kicked off or removed from a plane. And it was happening to me in Canada, my own country.
Of course I was very upset with the reasoning and shed a few tears, then composed myself and explained that I needed to get on the direct flight to Edmonton, and that there were no other direct flights that day, but the manager said, “ no, sorry, you cannot because of the policy.” I suggested that we could agree that I be put back on the plane and that I would sort it out with Air Canada once I arrived in Edmonton. He refused. I reminded him that we had been communicating just fine and that I have travelled independently without any problems. But there was no change.
Then I recalled that there was a case in the early 2000’s between a Deafblind friend of mine, Eddy Morton, and Air Canada. He is from BC and he was denied boarding a flight because of his Deafblindness and not having a travel companion . The issue was who would pay for the travel assistant, someone like an intervener, who is a sighted guide for the Deafblind person? There was no funding for such a service and so the Deafblind person, themselves, would have to pay for the assistant. Eddy was so incensed that he sued Air Canada. The case went all the way to the BC Supreme Court. He won and Air Canada was ordered to improve their services. This impacted other airlines, like WestJet, in Canada. That is how they developed the policy about the travel companion having a free seat as long as Deafblind travellers sign a form giving medical clearance which would then be approved by an airline.
There is a catch, once you sign the form and register for the program, you are obligated to always have an attendant with you on a flight. For me it would mean I could ask a friend or family member to accompany me when I was travelling. However, as I still have a little sight I want to be free to travel independently. When my Usher Syndrome develops to the point of complete blindness, I reason, then I will register for the program and accept the need for an assistant or companion to travel with me.
I have never signed the form because I felt that I would be signing away MY freedom as an independent traveller.
I asked how this medical clearance issue applied to me, but the manager who was continuing to look into the situation, wouldn’t clarify, so I sat and considered my dilemma. I took a picture of myself, “the angry traveller”. I thought about what was happening to me, here, in Ottawa, my home, in Canada, my own country of all places. This wasn’t Africa, or South America, but my own home! How disappointing!
I let my Edmonton contacts know about the delay.
I was beginning to worry about my nutrition as I am on a special diet for a detox program and cannot eat processed food, and needed something like fruit. I could feel a headache developing.
The manager returned and by communicating via the iPad informed me that I was rebooked for the 8:30 am flight – to Calgary and after a one hour layover, on to Edmonton, arriving at 1:55 PM. My original, direct flight had me arriving at 10 AM. He explained I would be changing to another gate.
I was escorted to the next gate. The manager instructed the next Air Canada staff about the situation. I was exasperated with how things were going. I spotted a Starbucks and indicated to the lady that I would go and get a cup of tea and return immediately. The lady became quite agitated and told me to sit down and to stay put. I wasn’t amused and explained it would be five minutes, but still she gestured for me to stay put. I whipped out my white cane and walked over to the Starbucks and got my tea and, returning to my seat, sat back down. The same manager returned and gave me my boarding pass and new baggage claims and gestured that all was fine with a thumbs up. I asked for his name and tried to hand over the iPad to him but he evaded my requests, spoke with the other staff and walked away.
I realized I needed to remember this person so noted he had dark hair, glasses, was about 5’6’’ and was working between 7-8 AM that day. He was very nice and up until that point very agreeable.
I boarded the Calgary flight without further problems. The flight experience was good. I read, dozed, spoke via IPad with my fellow traveller, a pleasant 80 year old gentleman from India. I was beginning to feel ill as we arrived at our destination.
When the plane arrived, I waited to disembark last, as usual, collected my carry on and got off the plane and into the corridor just outside the plane where I expected to meet an attendant for assistance to persons with disabilities to meet me to escort me to the next gate. I could see cleaning staff and others but no one came forward and so I went back into the plane to ask a flight attendant where the attendant was. She pointed to a man, likely African, standing back against a wall. The attendant had been standing there all along. He had a badge and came forward when I waved as he didn’t seem to recognize my obvious white cane. He had a wheelchair and seemed nervous and awkward with his duties. The flight attendant had to motion to him that it was me needing the assistance. He moved the wheelchair towards me and asked me to sit in it. Although I didn’t need the wheelchair, I cooperated because of how the day was going plus the liability due to the attendant’s awkwardness and seeming lack of knowledge about helping the Deafblind or even just a blind person. I didn’t want to risk a fall or walking into a wall.
The attendant seemed puzzled over where to go but eventually we arrived at the next gate for the flight to Edmonton. My headache was getting worse and I needed a drink of water.There was a vendor nearby so I told the attendant that I wanted to get some water to quench my thirst.
The same attendant gestured “no and stay seated”. He was condescending and I felt that I was being treated like a five year old child. I got mad, stood up and whipped out my white cane again and I walked to the vendor and bought my water and then returned to my seat. People in the waiting area were looking at me and smiled at my obvious defiance of the attendant. He walked away and I sat down, drank my water and looked at my iPad. After a short wait I boarded the plane to Edmonton. Everything went smoothly and as we neared our destination, I hoped that the final part of my trip would go as smoothly. Alas, it was not to be.
I want to emphasize that the flight crew had been great the whole time. They were not the problem at any point in this ordeal. They were courteous, helpful, competent and friendly, giving me the safety instructions, pointing out the washrooms and giving me water etc. However, it was a different story with the Air Canada staff outside the plane. Three horrible experiences in a row, debunking the “third time is a charm” myth!
The day wasn’t going to get better. The attendant for persons with disabilities, in a bright yellow vest, guided me to the baggage area where I gestured to him to explain that I had 2 suitcases. I rummaged for the baggage tags and handed them to him. The attendant didn’t seem to know what to do and nodded his head and walked away.
I waited patiently for a good ten minutes. Looking around I could see that I was alone and there was no sign of the attendant with my baggage. I was upset again and disappointed with the poor service. The attendant had not communicated with me to see if I was ok or to let me know that he was going to look for my bags. Nothing! He just abandoned me. I was beginning to feel apprehensive, when someone tapped on my shoulder – it was someone from the baggage office who had noticed me standing alone and approached me. He tried his best to communicate and figure out what had happened. I told him that I had flown from Ottawa, via Calgary and he went to find my bags in the area where lost luggage etc is kept. He and his colleagues stood around me and figured out by writing where I needed to go. I was escorted to the area of the airport where people wait for their guests to arrive and where my friends, to my great relief, were waiting. I thanked the helpful staff and left, happy to be done with my ordeal.
Air Canada may say this was a problem because a Deafblind person wanted to fly, but that’s not it at all. If Air Canada personnel were well trained and skilled in dealing with Deafblind travelers, (even if I was completely blind and wanted to travel independently) the attendants for the disabled, with the proper training could guide a Deafblind or blind person or communicate with a Deaf person.
I wonder, howcould a trained person leave a Deafblind person alone – it was not the right thing to do.
What happened to me today was not appropriate, it was wrong. How can a person, supposedly trained to work with the disabled justify treating me like a five year old and chastising me?
I don’t need an assistant or someone with me all the time. I didn’t register for that program. If the airline provides well trained assistants, I won’t mind travelling alone.
What happened to me today has left me tired, overwhelmed, upset and emotional. I have experienced problems in other countries during my travels, but I was able to work through them. It made sense, simply because they were a developing or poor country, or it was a cultural misunderstanding or people were completely unfamiliar with disabled persons. But there were many sweet people in these countries.
We are talking, in my situation, about Ottawa Canada, Calgary Canada, Edmonton Canada.
There is no excuse. I shall send my complaint to Air Canada in the next day or two. If you can, please help with tweets, emails, Facebook or any social media coverage.
I am reminded again of Eddy, who fought hard for the right to have an attendant with him who would fly for free, but what about people like me who want to travel independently? Don’t oppress me. We shall see what is going to come of this – I’ll kick ass for sure. I shall have a bath, get a good night’s sleep and give it a lot of thought as I consider my next steps.
I wanted to record my story in sign, tonight, while it is still fresh in my mind. Hopefully someone will caption this presentation so the hearing people out there can read my story. Perhaps Air Canada will be shocked and their jaws will drop to the ground. Maybe they will give me 10 years of free travel – one needs to see some humour in this!
In reality, I need to hear them say they are sorry for what happened to me and I hope Air Canada will improve their level of training to their staff about interacting with Deafblind persons. That is up to all of you who are Deafblind. It isn’t up to just me or me and Eddy – we are just 2 people. No, it is up to all of you, Deafblind Canadians to come together to support and advocate for this change. It takes a village to make a difference. Include Deaf people, include hearing people, they are our allies.
My final message is to Tactile the World, Advocate for our right to fly independently! ILY (I Love You) and goodnight.
My name is Christine Roschaert, from Cornwall, Ontario. I am the director of Nepal Deafblind Project where I volunteer in Kathmandu, Nepal and am currently in Canada to visit my family and conduct motivational speaking engagements. I am involved with several well-known Deafblind international and national organizations and volunteer my time with various Deafblind communities. I am a frequent traveller, especially on Air Canada and on its sister company flights and have been a member of Aeroplan for the past 15 years. I used Air Canada the whole time I was commuting back and forth during holidays from university in Washington, DC to Ottawa. I am an advocate for Deafblind persons around the world and have travelled to 50 countries thus far, and despite my disabilities it has proven challenging but there has not been a serious barrier…. until now.
I am Deaf and legally blind, diagnosed with Usher Syndrome – Retinitis Pigmentosa since childhood. RP is a disease of the retina that deteroriates peripheral vision, reducing the field in a tunnel-vision like image until at a certain point in life, the tunnel vision is reduced to no sight at all, rendering the person afflicted with RP completely blind. Persons who are born Deaf or late-Deafened and diagnosed with RP are categorized with Usher Syndrome as it puts Deafness and RP together, an unique combination.
Today, I see nothing out of my left eye due to a cataract surgery accident, and I only have 2 degrees of tunnel vision remaining in my right eye. I am also profoundly Deaf. But that has not stopped me from hopping on more than 1,000 flights in my entire life, even today. What matters is that the disability assistance teams at airports are highly trained to guide blind persons and knowledgable in ways to communicate with Deaf people and have a good understanding of assisting Deafblind persons in the case they should travel alone. I have had minor problems around the world – even in Nigeria, Morocco, Thailand, China.
However, was I never more humiliated and put into a situation that caused me more hardship than my experience on June 7, 2013 with Air Canada not only at my origin departure airport, Ottawa Macdonald-Cartier Airport, but in Calgary and Edmonton as well. The events of the day has clearly traumatized me, not because of my “inability” to travel, but because people who worked for Air Canada strongly believed I couldn’t travel alone.
I want to share my story of the events of the day that transpired, and it is a formal complaint against Air Canada because not only were my rights stripped, it was my pride and ability taken away from me as well.
In the early morning of June 7, my 70-year old father, Robert Roschaert, drove me to Ottawa for my flight to Edmonton. We arrived at the airport around 6am and I got my ticket and checked in my two bags without a problem. My father offered to guide me through the security checkpoint as it was allowed for family members or friends to guide me through to the gate because it was an in-country flight, not international. My father uses sign language so it was a bit easier to communicate when we got through. The lady at the ticket gate did not mention any problems or foreshadowed what would happen next. She gave my father a pass for security to go through with me and once I was dropped off, he would leave.
My father got me through security with no problem. As I got settled in the waiting area of Gate 15, he asked the boarding gate agent to watch me and guide me on the plane as he had to leave – his car was parked in the disability section and we said our goodbyes. I waited 20 minutes, reading on my iPad. The lady at the gate escorted me through to the plane, and I was getting settled in my seat when a tall, stocky man with grey hair came up to me, he was still talking on his CB radio when he motioned for me to get up and go with him. I said I was okay, but he was not pleased with me and gestured “come”. I didn’t understand him and offered to write back and forth as that was the best way to communicate with me but he declined and got my bags out of the overhead compartment. Confused, I suspected he was an air marshal or an officer of the law, so I obliged and left with him – even the flight crew looked confused. I had been the first person to get in the plane, so there wasn’t anyone on the plane. As he walked me back to the gate area, people looked at me and gawked. I felt humiliated as he told me to sit down and he was still talking on his CB radio and left me alone. People walked through the gate to the plane. Five minutes later, a man with dark hair and glasses, roughly 5’7” or so, came up to me and asked if I could read lips and I said no. He didn’t know what to do, so I offered my iPad to communicate. He was the manager of Air Canada for that shift. He explained that I did not have MEDICAL CLEARANCE to travel alone. This was new to me. I said I didn’t sign up for the Air Canada Free Assistance Flyer program because it would mean I would forfeit my right to travel alone. I depended on the trained professionals knowledgable on disabilities to ensure I got to my point of arrival safely. That was enough. But the manager insisted I cannot get on the DIRECT flight to Edmonton. I had a speaking engagement in Edmonton I had to make, so this was not acceptable. He did not go into details on the policy, nor did he explain to me what would happen. He just asked me for my father’s number and left to make arrangements. I was left in tears because this was the first time I was BANNED and kicked out of a plane. My pride took a hit. The plane I was supposed to be on, left its space and flew off without me.
The man came back and said it was possible that I would be on the 8 30am flight to Calgary, changing planes for Edmonton, arriving at 1:55pm. I had to notify my hosts in Edmonton. I did not like this because I had requested for a direct flight – less hassle of changing and makes it easier for me to travel. He gave me my tickets and asked the lady at the gate to escort me to Gate 25 for my flight to Calgary.
He later came back just before my flight to Calgary and he said it’s a go. Without explaining to me why I was suddenly allowed to go on this one, but not the direct flight to Edmonton. He seemed to be in a hurry and said “no problem”. I wanted his name and he just left without giving me his name. He was nice to me, but I didn’t appreciate lack of information as I was left clueless.
That was not the only problem I had with Air Canada that day. As soon as I got off the plane in Calgary, I waited for my asisstance to come to me but no one did. All I could see was the person responsible for baggage, some clean up crew. I asked the stewardess after a bit of an awkward silence waiting for my assistance, where he/she was? The stewardess pointed to the guy standing back on the corridor wall, and he was looking at me. He had the assistance tag. I had my white cane – an obvious sign I was blind – and he still did not come to me naturally. I had to “sic” him to come to me. He put me in a wheelchair. He seemed so awkward with me it made me uneasy. Often I travelled and met professional assistances who knew what they were doing. But not him. As soon as we got to Gate 1 for my flight to Edmonton, I was feeling parched and dehydrated and was beginning to get a headache. I asked him if I could go get some water at a nearby vendor, and he told me in a way that reminded me of how my parents would scold me “No, no, sit there”… I explained that I NEEDED water and he just ignored me. I got angry and got up from my wheelchair and walked to the vendor, bought my own water, and back to the wheelchair. He left without saying goodbye and I waited one hour for my flight to leave for Edmonton.
Then… when I got to Edmonton, I was greeted by another man, bald and stocky with glasses and he was wearing a bright neon yellow jacket. I wasn’t sure if he was assigned to me but it seemed like he was. He brought me to the baggage claim area and as I asked him where could I pick up my two checked luggage, he shrugged and I gave him my luggage stubs. He left. And I never saw him again. I waited for 10 long minutes until another man, working at the Baggage Claim/Lost Baggage office saw me waiting with my cane and offered to help. Kind man found my luggage, and tried to figure out where I could meet my friends. Not long after, my friends met me.
So, all in one day, I was kicked out of a plane, rendered speechless when I was allowed on the next one, uninformed as to why it happened, then was guided by someone untrained to guide a blind person and was chided for wanting water, and then left alone by myself in the baggage area by someone who claimed to work for disability assistance. Never have I been ashamed to fly on Air Canada or humiliated as a person or felt so mistreated as a Deafblind person. Air Canada represents my country, one I have always been proud of living in, because of its strides to accomodate persons with disabilities.
Much effort has been put into the Free Assistance Flyer program by Air Canada and WESTJET, however, the attitudes and oppressive tactics and untrained disability assistance and AC staff truly put your company a notch down. Many Deafblind people, even other persons with disabilities, have complained about Air Canada’s performance in that regard to supporting travellers with disabilities and the events that transpired on June 7 proved that. There are many Deafblind people who choose to travel alone, and if provided highly-trained assistance at the airports and flight crew in midair, it is possible for Deafblind to have the option to travel alone. Some prefer to bring their own assistance, thus the program you have for free assistance fliers works. But there’s no choice for independent Deafblind travellers like me.
I was not aware of the policy requiring Deafblind travelers to get medical clearance until after the fact. A friend sent me the link to your website. I last traveled on Air Canada this March from Washington, DC and it went without a hitch. I was not asked to provide my medical information. I wonder when this policy was installed? Was the Canadian National Institute of the Blind or any Deafblind organization in Canada properly notified of this, so they could inform their clients/members? We all know that a majority of travellers don’t go through pages and pages of policy but it would have been a sensible thing for the manager in Ottawa to provide this information to me prior to my departure to Calgary. That much I deserved. Not to be left in the dark about what happened earlier. I have had very minor problems with Air Canada in the past and it has always been a pleasant flight because every time I fly with Air Canada, the flight crew makes my time very comfortable and pleasant.
I am filing this complaint with Air Canada for humiliation, stress, mistreatment, communication barriers, unnecessary hardship and stranding a disabled person in an unfamiliar environment.
I am more capable of travelling in air and ground and water than many people – or so I was told, even when I have used my white cane in the past eight years. I strive to put down barriers in order to be able to travel freely and independently. What happened on June 7 oppressed that right to independence and for that, I feel violated. I have been travelling by air since I was 12 years old, so that puts me in the same league as seasoned travellers, having done this for 20+ years. I would like to think that my experience and expertise is to be taken very seriously.
Until this matter is resolved and policy is changed, and staff / assistance heighten their sensitivity training for persons with disabilities, I will refrain from travelling on Air Canada and its fleet. It is of utmost importance that the company of Air Canada recognize this and forges ahead in ensuring its staff, crew and assistance teams are competent and well-trained to serve its disabled travellers.
I would be willing to offer my expertise as a consultant for Deafblind travellers in matters that concern them and offer insight on training exercises to better the service we receive from Air Canada’s staff, crew and assistance teams.
Serious changes need to be made – with involvement from Deafblind, Deaf and other disability groups themselves, and not by non-disabled persons who made the previous policies.
You can contact my father at the phone number or email me directly at the email I have both provided above.
It is my request that you respond to my letter promptly so that we can forge ahead and create a safer, comfortable way for persons with disabilities and Deafblind people to travel independently and for me to acknowledge that you have heard me loud and clear.
You know I grew up immersed in Deaf culture, right? Like, I boycotted oralism at age 3 and dove right in sign language when my hearing parents introduced me to Sesame Street’s Linda Bove and her brilliance? That my hearing parents learned sign language for themselves so that they could communicate with me every day for the rest of my life than trying to force the voice on me? That I went to a Deaf school from age five til I was nineteen, and attended a Deaf liberal arts university of the Deaf for seven years? That I am brilliant in my own sign language and love learning international sign languages? What part of me isn’t DEAF? Tell me.
Because once it was revealed I had Usher Syndrome – ya know, that tunnel vision thingy that robs some Deaf people of their peripheral vision over the years and eventually becoming totally, like, BLIND – that things changed? That I wasn’t normal anymore in the Deaf community? That rules would be imposed upon a young Usher girl that since her eyes were “bad” she was not allowed to partici[pate in sports? Hearing blind organizations brainwashed so many schools that eventually led to my isolation and anger about my “secret” eye disease? Having people pity me so much to the point that I had no real social interactions beyond nighttime or in clubs where strobe lights flashed and university students danced and chatted on with their perfect 20/20 sight?
Of course acceptance with high school and university students did not count. Raging puberty and elitism raged on. I tried not to take it personal, you know. But for so long, I never felt accepted, or normal, within the Deaf community I WAS BORN INTO.
Nightmares plagued me in my early 20s. I tossed and turned every night, my body sweating and I felt myself tremble, after seeing vivid visuals of sitting in a corner, alone, and everyone who was sighted would stand around me and treat me like the plague.
Only that was real.
I recall one fall semester at Gallaudet, when I had come back after one semester of “Leave of Absence – LOA” for studying Braille, cane training and Tactile lessons. I was so nervous the first few weeks when I roamed campus with my cane and people GAWKED at me. They were shocked, behooved that I had suddenly owned a cane – even in their minds the suspicion I had Ushers had floated around – but it was like a huge slap in the face for them. But they never came to me and discussed it. So I thought, maybe, they were OK with it. Was I wrong.
Homecoming 2005 that very fall. I was sitting in a corner of the Homecoming Ball watching rowdy, drunk college students gyrating it on and bellowing out what a great time they were having. I had futilely attempted to tactile with several Deaf people. Their reactions? “You’re such a flirt. Touching me like that on the hand. (slaps it) you’re so funny” “That’s awkward. Why are you grasping my hand? (puts it aside)” “I know you’ve liked me for a while, but I think it’s time I let you know I’m not interested in you” “Um… (hand stays still)” “Oh…. you can’t SEE. Ohhh ok, what you need is HELP. (Coco is watching this person’s expression in dim light and the person looks PANICKED)… oh ok.. oh shit… help… anyone? this D-E-A-F-B-L-I-N-D person needs H-E-L-P.. come here and rescue me… yeah.. thanks.. Oh I forgot your hand is still on my hand.. oh my god you understood what I said.. oh shit… (zooooom)”
This is after I have told them that I am now using TACTILE WITH SIGN LANGUAGE because I cannot see in the night time. And they said these things.
Not late into the night, just before I contemplated just blowing off this superficial, hyped event where people were so, so ignorant and retreat to my “Batcave” at the dormitory, I was greeted by two old friends from Gallaudet who hailed from Louisiana, one of the highest populated states in the United States of America with Usher Syndrome and various blind-Deaf people.
Tate and Sarah Tullier came up to me, greeted hello in front of me and I did not notice them. They noticed my cane and Tate took my hand and tactiled with me. Shocked, I asked ‘Who are you’? Tate stated his name, so did Sarah in tactile. I was overwhelmed and asked how they ‘just knew’ to use tactile? Louisiana. Simple as that. I had the greatest conversation with them that night and it boosted my self esteem. They were only, like, 1% of the Deaf community worldwide who KNEW how to socialize and work with Deafblind people.
From there on, I kept pondering the question: How did I go from a very involved Deaf child who burst with love for sign language to someone who FEARED the Deaf community? That one day I would look at the Deaf community and realize that a) there were almost no Deafblind people truly INTEGRATED with the Deaf community; and b) that the Deaf community acted like Deafblind people weren’t part of their community? That we were :DIFFERENT” from them that we did not get invited to their events, deserved the same rights to top interpreters like they did, get to attend Deaf schools but get deferred to hearing blind schools, get shunned to the point where there almost is a guaranteed spot for us in the corner at Deaf events, that tactile was a ‘DIFFERENT NOTION’ of sign language that it was so ALIEN it did not belong in the Deaf community, and that Deaf organizations and services mostly would NOT KNOW HOW to communicate, deal, help, socialize and work WITH DEAFBLIND PEOPLE?
I know many of the Deafblind people in America, Europe and elsewhere know sign language, probably have the same background as I do and feel the same way I do…. Maybe some of them lashed out in anger and frustration but they or anyone did not know what to do, or what we were saying… or the government just doesn’t give a shit about the potential of accessibility and services that we deserve.
The first step in recognizing that there must be progress in the Deafblind community is acknowledging that many Deafblind people are DEAF. Deaf, as in part of the Deaf community. Deaf culturalized. Every part of their bodies and minds and souls are Deaf. Just that their eyes are in any level damaged, unable to see at all or with some limited degree of vision.
I don’t want future generations of Deafblind people to feel and “see” what I have in the past years: being in the middle of a legion of Deaf people, beautiful intricate visual and bold sign language flurrying in the air, stories flowing through hands from Deaf person to Deaf person and stopping short of sharing it with me because they know I cannot ‘see’ and they don’t know how to share it with me – and the pain of seeing that story leave with that person in search of a sighted person, knowing that either they are acting elite and ignorant, or truly not knowing what to do or say to a Deafblind person. And now, as I type this, I may add – looking at them with that wishful thinking that they would grace the BEAUTY of Pro-Tactile and INTEGRATING Deafblind people within their community.
Any way you look at it – if we’re born blind and Deaf, acquired Deafblind, Deaf with Usher Syndrome or any other visual impairments (I could name over twenty, mind you) or Deaf and later blind – we are still a large part of the Deaf community. Like Deaf people who are hard of hearing, with cochlear implants, can speak well, went to mainstream school, Hearing parents, later deafened, culturally Deaf hearing people… oh god the possibilities are VAST. We are a large, vastly large, BLENDED community around the world. Yep, even those who lack the very SENSE that most Deaf fear of losing: SIGHT.
When you look at me, I want you to recognize I am Deaf. Many, many Deafblind people are DEAF.
I think it’s time that the Deaf community learned about accountability – towards its very members – grassroots, women, men, the educated, around the world, the blind, the DeafPlus, et cetera – and truly learned how to INTEGRATE that into their livelihoods.
Because you might as well get used to me butting into your lives with my lovely hands tactiling yours in FORM OF COMMUNICATION using the very COMMON method: SIGN LANGUAGE. Any sign language around thw world. That can be said for others, however, this opinion article is based on my experiences and views being an international lecturer meeting hundreds if not thousands of Deafblind people around the world who say that they grew up Deaf, but now that they’re Deafblind, they don’t feel part of the Deaf community anymore.
My answer to that?
It takes two sides to come HALF WAY to communicate. The Deafblind people have to come halfway and educate the others how to communicate with them; The Deaf people have to come halfway to learn how to support them, how to integrate them within the Deaf community, to ensure that rejection is not a verb in anyone’s language.
Heck, even to this day, I still struggle with rejection from several Deaf people, but I take it in stride. If they’re willing to come halfway and learn, I’ll let them in. If they act snobby, elitist or afraid to the point where they refuse to meet me halfway, I LET THEM GO.
Now, what say you?
I love being Deaf. AND Deafblind. Do me a favor. Watch the Pro-Tactile vlogs on www.youtube.com/protactile and my Deafblind vlogs at www.youtube.com/tactiletheworldand keep an eye out for many Deafblind vlogs and blogs – most especially keep your mind open when a Deafblind friend wants to talk to you or needs you to listen to them.
There are so many aspects to a Deafblind person’s life. One is, from the Deafblind themselves, then there’s the stories of people who love and raise a Deafblind child.
I found the two blogs by two mothers in the United States quite inspiring and very insightful.
I would like for you to read all about:
Kodiak, a young Deafblind boy who was born with CHARGE syndrome and scoliosis but is a charming, lovely little boy who loves to laugh. His mother writes about his adventures, his struggles and chronicles her own journey as well.
Tactile The World 