Letter to Air Canada – by C. Roschaert

 

June 9, 2013

 

 

­Dear Air Canada,

 

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.

Thank you. Merci beaucoup.

 

Sincerely,

 

Christine Roschaert

Posted in Blogroll | 7 Comments

Deaf Community Accountability To the Deafblind

March 17, 2013

Deaf Community Accountability:

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.

Tactile love.
Coco xx

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Blogs by Moms with Deafblind Sons

Good day!

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. 

http://kodiakmylittlegrizzly.com/

 

Now, let’s read about Heather’s journey as a mother to an active, energetic and sweet Deafblind boy, Orion. 

http://hexwit.blogspot.com/

If you have more blogs written by parents of Deafblind children, please share in the comments below. 

All my respect and love to the parents for the love and hope they give to their Deafblind children 

Namaste,

Coco

Posted in Blogroll | 8 Comments

Pro-Tactile: The DeafBlind Way!!!

Good day, folks!

Today I am so excited! Something has gone VIRAL around the world about an innovative way that will transform the Deafblind community worldwide as they adapt to the new but tried philosophy! This “way” is called Pro-Tactile and it is a project headed by Seattle Deafblind women, aj Granda and Jelica Nuccio. Nuccio, the former Director of Seattle’s Deafblind Service Center and co-creator of the National Support Service Providers Pilor Project (NSSPPP) and Granda, a longtime Seattle Deafblind community advocate and Deafblind Community Class instructor, has come up with a formula which broadens the spectrum of communication of the Deafblind outside of the standard Tactile with (American or any other international) Sign Language and several other manual methods. This new idea has just now been making the rounds in North America but it has been in the making since early 2000, when Granda and Nuccio noticed that the Deafblind were being left out in important aspects such as environmental information (example: head nodding of the other person, person entering/leaving, nonverbal cues) and noises/facial expressons since many Deafblind people cannot hear or see, or have very limited access to information easily seen/heard/understood by Deaf and hearing sighted people.

I interned at the Seattle Lighthouse for the Blind in Seattle in 2005 and became fast friends with Granda, who introduced me to the yet-unnamed Pro-Tactile (PT) method. I was taken aback and confused when she would start touching my body more, but then I started to understand that they were ‘added’ social cues to inform me if her head was nodding (tapping on my lap or shoulder), her hand travelling down from my left to right shoulder (she was moving from my left side to my right side), and there was that ‘aha’ PT moment one night when we sat outside on the porch and I wondered the perennial question: how do we let Deafblind people know we were truly laughing? I hated the usual sign of “ha ha” in my hands when I tactiled with the person I was sharing my joke to. “ha ha” in my hand is akin to a hearing person bellowing out nothing but a fake laugh; a Deaf person slapping a hand on their lap and their expression shows they’re faking their jest. I experimented this PT move by placing aj’s hand on my throat and I laughed out loud, a true to heart Coco laugh and aj was shocked, still, then she tried it again. It was a true PT action, which included Deafblind in the ever-elusive world of pure joy.

It then dawned to me that there was a special part of the Deafblind community that was still in its seedling stage, and the world only knew about a method which could be easily compared to, sometimes similar, but different, the Haptic Communication Method which is used in Scandinavia. Now that Granda and Nuccio have watered the seedling, built around it a strong foundation and a better understanding of its logic, the philosophy grew. Seven years later, the Pro-Tactile Way has been revealed and I could not be more happier. The world most assuredly needs to adopt this way – be more inclusive, be more tolerant, be more communicative with their Deafblind peers, with themselves and even if Deafblind people aren’t around – PT should be used between sighted people. Because it is that special.

I want to touch up a bit on Haptic Communication before I share with you the pearl of the Deafblind way, the Pro-Tactile.

Having already learned the basics of yet-unnamed PT prior to visiting Scandinavia in 2012 during my European lecture series, I had no idea or understanding about their ages-old Deafblind communication method, the Haptic. The Haptic Handbook was published by the Danish Deafblind Association (FDDB) – now available in English – and widely used with Deafblind people in Denmark, Norway, Sweden and Finland. When I gave my lecture at the Copenhagen Association of the Deaf, a Deafblind Dane came up to me and mentioned that they use the Haptic. I thought it was some nautical move but he quickly corrected me and showed me how. He drew a ‘smile’ on my face, then a frown, a question mark, and the last part perplexed me. He drew a X on my back and I said “fire?” The audience laughed. He said “no, that is Haptic for going to the toilet”. While I got the hang of Haptic (I did not use these codes in Seattle, more social cues than codes) I learned the X while at the Canadian Helen Keller Center as an adult student learning independent skills for my life as  a Deafblind person. CHKC taught me that X, while positioned and drawn on my arm or back, meant ‘fire’ or ’emergency – and that I should not protest, be whisked away by my guide without any questions, until I arrived at my safe desginated place. In Scandinavia, X meant my communication partner needed a bathroom break. It was only coincidence, that three months after my initial lesson in Haptic, I was introduced to the newly-named Pro-Tactile method. Now there was a name to what I was doing all along with aj and my Deafblind peers in Seattle. 

Granda and Nuccio provided a very insightful series of workshops at the Seabeck Deafblind Retreat in Washington State in August of 2012 and I was immediately taken with the concept. I shouted, I screamed, I applauded Pro Tactile. There were also complexities behind the philosophy of Pro-Tactile, such as “back-channeling”, the linguistics behind PT that I have yet to understand – and am very much looking forward to more and more lessons in PT. It is in my personal opinion, that PT provides so much more background, action, information and inclusion than Haptic, however, some aspects of Haptic could be integrated into PT to create an even more extensive tool for the Deafblind. 

You know, when I use PT, I feel more aware of my environment, of my communicating partner, of myself as a Deafblind person and feel as if my Deafblind community is more into sync. I can only hope, with the creation of a new Facebook group “Pro-Tactile: The Deafblind Way”  and videos by Granda and Nuccio teaching the value of utilizing PT in the Deafblind community with everyone taking notes (I mean the sighted people as well!) that one day the distant communities of Deafblind, Deaf, Hard of Hearing, Hearing and the Sighted will integrate and communicate with ease using PT. Not only that, but through the usage of PT, more and more Deafblind people will come out of their shell (like I did in 2005 – it was a big revelation and personal revolution) and they will be more inclusive in their own – or any other – community. The more Deafblind stand up strong, the more their voices will be heard, then more access to the world will come to them.

Right now the Pro Tactile is becoming widespread in the American Sign Language (ASL) communities of US and Canada, one day it will be formatted for the international Deafblind/Deaf/hearing communities, I just know it. PT should be used around the world. Just right now it is growing – and in the video like Granda and Nuccio say – it is taking steps. They will crank out more videos and resources for PT. Keep your eyes peeled! I have been doing a little translating for some international Deafblind who don’t read English nor understand ASL, so hopefully one day it’ll all be accessible in IS as well. This is how the concept of Deafhood started – local, national, then international. It takes time, but we need your help by spreading the word!

Before closing off and sharing with you the pearl of the Deafblind way, I want to say a heartfelt thank you to my longtime and personal friends, aj and Jelica, for inspiring me in the first place when I was a baby chick waking up my eyes to a new Deafblind world back in 2005 and realizing my potential as a person and as a communicator. Because of your influence, I am the person I am today and I will most certainly be your solider and march on and spread the Deafblind Way: the Pro-Tactile gem. 

I look forward to more videos and lessons in “back-channeling”.

Tactile love,

Coco

Facebook Pro-Tactile: The Deafblind Way link:

http://www.facebook.com/pages/Pro-Tactile-The-DeafBlind-Way/537929012908713?fref=ts

Youtube video of Jelica Nuccio and aj Granda introducing the Pro-Tactile Way (subtitles to come soon and transcript below for the ASL-illiterate!)

Transcript for the Youtube Video:

Welcome to Pro-Tactile: The Deafblind Way

English Transcription of aj and Jelica’s vlog: Welcome to Pro-Tactile: The DeafBlind Way February 14, 2013

Jelica Nuccio: Hello! Welcome to our very first vlog [aj taps Jelica vigorously on the knee and smiles. Both are receiving signs tactually, and their legs are touching] Called…

aj granda: Pro-tactile! We abbreviate that, “P-T”.

Jelica Nuccio: PT! My name is Jelica, and my sign name is a Y across the chest [from shoulder to waist.] [both aj and Jelica are smiling at one another. When aj signs, Jelica listens with one hand and has her other hand on aj’s knee, tapping often to let aj know she is listening, sometimes with more force to signal strong agreement, for example. Both presenters are wearing all black and are signing in front of a blue background.].

aj granda: I am aj granda and my name sign is “aj”. Jelica Nuccio: Our goal today is to introduce something that has been drawing a lot of attention

lately, and that is “PT” [Jelica extends her arms toward aj to invite her to continue].

aj granda: Indeed, PT has been drawing a lot of attention lately. And I want to extend a heartfelt thank you to everyone who has been so supportive, so curious, and so enthusiastic about it. And thank you also for your patience. Jelica and I started developing PT several years ago, and things have been moving fairly slowly. We both have jobs and families, and in general, we have busy lives. But PT has spread across the country and there is a clear demand for more information, so we have finally decided to make this vlog a priority. We plan to post regularly from here on out. [aj is signing with two hands at the same time. For example, In Visual ASL, the sign CURIOUS would be a one-handed sign. aj signs this sign with two hands—one copy for each hand].

Jelica Nuccio: That’s right, aj. And I wanted to add—I am Deaf-Blind and Ushers. Aj is also Deaf-Blind and Ushers. We both live in Seattle, and most of the people who have contributed to the development of these practices also live in Seattle. Some come from outside of Seattle as well. We want to thank those people. You might notice that aj and I are taking turns and tapping each other’s knees as we communicate [aj pats Jelica’s knee emphatically]. That is part of PT. Now, aj, can you explain why we call these things “pro-tactile”?

aj granda: Yes, absolutely. Many people have asked me why we call it “pro-tactile”. Well, when we put pro- before another word, we usually mean that we support whatever that second word stands for. Tactile, you might think means tactile reception of signs. So many people assume that what “pro-tactile” means is essentially “support tactile reception”.

Jelica Nuccio: But that’s not it! [aj taps Jelica’s knee hard, two times, in agreement].

aj granda: Right. It doesn’t mean that at all. In the Deaf-Blind world, people do not all use tactile reception. Many people do, but we are not saying that people have to do that. That’s your decision. Remember what tactile really means is “touch”. “Pro-tactile” really means that wevalue touch for purposes of communication. During this presentation, Jelica and I have been giving each other tactile feedback the whole time, tapping on each other’s legs, and hands, and shoulders, and arms. That is pro-tactile.

Jelica Nuccio: Yes, and when you start from there—from a place of valuing touch for communication, this leads you to the Deaf-Blind way. So for example, Deaf people communicate a lot using facial expressions and the particular ways that they do that is part of their culture [aj taps emphatically on Jelica’s knee]. Even if one Deaf person uses Visual ASL, and the other one does not, they are still both visual people, who respond to visual cues as communications. We know there is a lot of diversity in our community in terms of communication, and that is fine. The only thing that matters is touch. Without a mutual understanding of the value of touch, there can be no communication. [Jelica points to aj’s hand, where it is tapping excitedly on her knee]. What aj is doing right now is a perfect example. That is how I know that she is listening and how she feels about what I am saying. When Deaf, sighted people communicate with each other, they know that the other person is listening because they nod their heads, their jaw might go slack in amazement, their eyes might widen. Deaf-Blind people miss out on that kind of information [aj continues to tap on Jelica’s knee enthusiastically, and also signs YES repeatedly on Jelica’s knee]. Hearing people say “hmmmmmm…” when they are listening to one another and this accomplishes the same function as facial expressions for Deaf people. But when Deaf people are talking to hearing people, they don’t attend to those sorts of noises. They focus on the hearing person’s facial expressions and body language and that is how they establish a connection with them. That is how they get a sense of who that person is and how they can relate to them. Deaf people have visible ways of doing that. Hearing people have audible ways of doing that. Being pro-tactile means recognizing that Deaf-Blind people have tactile ways of doing the same things. When aj taps my leg in certain ways at certain times, it tells me something about what kind of person she is and I have a sense of how we are relating to one another. Touch is our way of being present with one another. It’s about touch. It’s that simple!

aj granda: Yes, although, its simplicity can be deceiving. To reiterate what Jelica has just said— you can see that I am nodding my head right now. Does Jelica know that I am nodding my head? How do you know?

Jelica Nuccio: Head nodding is not natural. [aj taps Jelica’s knee rapidly several times]. That [pointing to aj’s hand] is natural.

aj granda: [nods head and taps Jelica’s knee in the same rhythm]. The head nodding and knee- tapping match. They serve the same function [Jelica nods and smiles at the camera]. If you’re going to nod your head, you have to tap on the knee of the person you are nodding at the same time. Otherwise, they don’t know you are agreeing with them. That is the kind of thing that allows us to share information with one another, and that is being pro-tactile is all about.

One way I like to explain PT is to compare it to using a TTY. You might remember what that was like—when the person you were talking with would type and type and type, and you already knew what they were saying, you already had that information. In person, you would just tell them, “Yeah, I know that already,” but the way the TTY was set up, you couldn’t interrupt, so

you just had to sit there and wait until they were done. Finally, after what seemed like an unbearably long time, you would see the letters, “G-A” at which point you would tell the person, “Yeah, I already knew that. You didn’t have to tell me.” So the constraints of the technology made for some really frustrating and inefficient interactions.

Well, before PT, Deaf-Blind communication was like that. Interactions were limited and we didn’t have access to all of the cues that make things smoother and more efficient. Pro-tactile communication is immediate. Turn-taking is seamless. There are no awkward time lags or frustrating constraints. Information is received when it is produced, and there is a constant stream of information coming from the person you are talking to—like now, how Jelica is touching my knee and giving me constant feedback. It’s fantastic!

Jelica Nuccio: And these ways of communicating feel natural very quickly. So you might be asking yourself why PT didn’t happen sooner. Well, the reason is that hearing and Deaf people have been dominant in our community until now. They thought that they were the ones with all of the knowledge and expertise about us, and we thought that was true. But that meant that we had to try to do things the sighted way. That is why we were under so much stress, why we felt that we were slow in learning things, and why we were always the last to know what was going on. For example, if a sighted person was doing something and a Deaf-Blind person was waiting to talk to them, the sighted person would say, “Hold on.” Then they would drop the Deaf-Blind person’s hand and leave them standing there, not knowing what was going on. They might say, “I’ll explain later.” That is not natural for us. If those two people were pro-tactile, then the Deaf- Blind person would be able to leave their hand on the hand of the sighted person while they did whatever they needed to do, and the Deaf-Blind person would know what was going on the whole time. Pro-tactile is inclusive—it allows us to be involved in what is going on when it is going on. For example, if a person is having a conversation with their friend, they don’t have to tell you, “I’m talking to my friend, I’ll tell you about it later.” They can just invite you to observe the conversation tactually. So one of the basic ideas behind the pro-tactile movement is that we can be involved in our environments without interpreters describing everything to us after the fact. We can feel things for ourselves. Everyone likes to watch what other people are doing and what other people are saying to each other. Human beings are eavesdroppers, and Deaf-Blind people are no exception.

aj granda: I agree with everything you’ve said, Jelica. And I want to emphasize: Pro-Tactile is a philosophy that guides action in everyday life. It is a socio-cultural movement that is affecting personal, political, and one more thing—what was it?

Jelica Nuccio: And linguistic!

aj granda: Yes! And Linguistic dimensions of our everyday lives.

Jelica Nuccio: Yes, that is just a very brief introduction to the meaning of “pro-tactile”. From here, we will have a series of vlog posts. The first one will be an in-depth discussion of “backchanneling”. Following that, we will talk about TASL (not TSL). And those are just our first topics. We plan to post many more vlogs in the near future. We will be talking about all of the different aspects of pro-tactile philosophy—its personal, political, and linguistic implications.

We will talk about how pro-tactile practices can affect your work environment, your relationships with other people, and more.

aj granda: For now, we’re going to have to end the vlog. But in our next appearance, we will explain backchanneling. We will be giving you some examples, and show you how to do it yourselves. After that, we’ll be talking about TASL, and we will go from there. We are glad to have this opportunity to introduce ourselves to you, and give you a brief introduction to pro- tactile philosophy. Thank you to you all, and we are so excited to share this with you.

Jelica Nuccio: Wait! There is one last thing. Pro-tactile practices are for everyone. Deaf people can be pro-tactile if they communicate the Deaf-Blind way. Hearing people can be pro-tactile if they communicate the Deaf-Blind way. Hard of hearing people can too! Pro-tactile is the Deaf- Blind way, and it is creating a world that is natural for us. That is it. Thank you very much for watching.

aj granda: Thank you everyone for joining us in our new world! Go pro-tactile!!! Jelica Nuccio: This is aj [name sign: aj], and I am Jelica [name sign: Y across chest from

shoulder to hip].

aj granda: Thank you [to Jelica] Bye everyone! [Jelica leans over and rests head on aj’s shoulder. They both smile, and squeeze each other’s hands].

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An Epiphany

Kathmandu, Nepal

Tonight when I was in a taxi with Tsering going home from Thamel doing errands, it was pitch black outside as the zone from Thamel to Ratopul had their electricity blackout schedule, and it amazed me (the possibility of a pitch-black metropolitan city) and frightened me (not being able to see ANYTHING at all) at the same time. I recall times when I had to hop into a taxi in Kathmandu and in Nigeria alone at night (sometimes I had no choice…) and there were no street lights, my drivers often did not speak English so I would try to write in their own language where my area was. Sometimes they would ‘think’ they know where they’re going, and with their dismal 70-watt yellow lightbulb headlights they would swerve at break-neck speed to avoid a deep pothole, a stray dog, a drunk human being and go crazy speeds over barren, rocky, damaged roads. I always have this habit of grabbing the car seats with the clutches of life, wishing I had the superhuman (or 20/20 night sight) powers to see at night and correctly navigate my way home, but that’s never the case. There were horrific instances when the taxi driver got us lost, saying ‘this is the way’ but I ask them to stop in the middle of a deserted street, so that I can whip out my trusty high-voltage LED headlight and slowly scan the buildings and exclaim in horror “not here” and gesture to the driver ‘no, no’… in those cases, I manage to get home safely, an hour later (than the usual 15 minutes) and get panic attacks as I grasp the car door handle to let myself out, and then the drivers begrudingly bellow out ‘more money’….
There was that instance in Kaduna, Nigeria, when my intervenor and I were separated in the night and she was nearly stoned to death and I was encircled by 10 dangerous Nigerians that salivated at the sight of a lone Deafblind white girl. (remember that, Olawepo Olabisi-Adunni Kafayat?)
So tonight, as I sat with Tsering, I found myself still grabbing the car seat tightly with one hand and the other holding his hand as we cruised in our dipilidated taxi and as my eyes scanned the buildings in the darkness I knew I would get home safe with Tsering by my side. 

I do live dangerously, and with a finality, I have decided to reduce the risk of ending my life so soon by moving back to Canada this June. The future of Nepal Deafblind Project will unfold itself in the next few months, we’re still debating what to do. I just cannot live this way anymore, with scars on my body bore by that large pothole that swallowed me last month, or that packed Coca Cola truck that nearly turned my foot into a pancake (or made me roadkill had I stepped an inch) or that neighbourly white truck driver who didn’t care I was walking by the quiet street with my cane and rammed into me early last year.

I have nightmares from my own experiences in Nigeria and Nepal, not by reliving it, but by imagining what the Deafblind people in these countries and around the world in developing countries go through everyday… I often wonder if they think staying in their own room is a safe haven, and if they dared to step out of their house, fear would consume them because of those dangers that I already see and know exist – and they would just retreat back into the house in one piece. I completely understand that intense fear, and if I were born in that society, I would have done the same thing. Many Deafblind people who do this that I have met are mentally and emotionally empty, because of lack of stimulation from the outside world. They do not have access to tactile with sign language, to sighted guides, to accessible places or to a better quality of life like most in the Western world do.

After I finish up my three years in Nepal (five years living in developing countries) I will go back home, care for my ailing parents, rediscover myself and re-assess my future goals and most definitely write stories of Deafblind life around the world as I saw it in the hopes that it would inspire change, in the system that oppresses and in the society that closes doors, but also for those Deafblind people who don’t know what they can do to open their own door and create a way to safely step out.

So as I finish my chapter in Nepal, I look forward to a new beginning. I’ll still travel around the world, but come back to a place where I know I am certainly safe and loved.

Thank you, to my boyfriend, Tsering, for being there to save my life this year, and thank you to my family for praying for me everyday, thank you to my friends for giving me the love and support I needed throughout my five difficult yet rewarding years, thank you to my fans for cheering me on and believing in my passion, and I most certainly would like to thank the Deafblind people I worked with in Nigeria, Nepal and around the world for changing who I am, for teaching me so many lessons and allowing me to weep and share my courage with you.

Namaste and Tactile Love,
Coco 
Kathmandu, Nepal 
January 27, 2013

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The Real Story behind the Belgian Deafblind Twins’ Euthanasia

;In the face of the media, truth will never prevail. Truth will always be tucked in a faraway corner, while the most ‘sensible’, ‘convenient’ story will make the top headlines and people will believe whatever is flashed in neon signs than the underlying truth in black and white.

The twins from Belgium that were granted the right to be euthanized and succumbed to lethal injection on December 14 had a story to tell, but all the world saw was the reasoning behind their deaths as attributed to solely being Deaf and going blind. Actually, Eddie and Marc Verbessem had a much more complicated, indepth story to tell from the grave, but will anyone listen? Is the reason of going blind surely justifiable for their deaths, the world wants to know, but the media continues to carbon copy the first initial reports that they chose death over going blind, and THAT story continues to be copied over and over again.

Not here. Not on my blog. I will explain in summary what REALLY went on behind the hospital curtains, with the Verbessem twins and their doctors but leave you to read several articles for more indepth information. It’s just a shame that the real story isn’t making the circuits out there.

The first wave of reactions on the Verbessem twins’ deaths were varied. Some sighted people said they would have done the same thing, if they had lost their hearing and sight. Even Deaf folk would go as far as to say that if they were going blind and lost their vital sense, it’s curtain time on their lives. They would willingly give up fast – and say that the brothers were in the right to end their life just because they were going blind. Many Deafblind people were aghast, shocked, saddened over the loss of ‘one of their own’. and even some shared they felt that the world was having an unkind glimpse into the depressing darkness of the lives of Deafblind people and now the pity was a heavy mountain onto them instead of the world cheering for them and forging ahead with ideas and plans and policy for a better quality of life. Instead, the Verbeseem twins’ deaths cast a heavy shadow over us. Would we be encouraged to do the same or our lives compared to their isolating and depressing life? We had just started to break through the glass ceiling which is the notion that 1. Helen Keller is the ONLY leader for the Deafblind in past, present and future, and 2. Deafblind people aren’t able to the extremes. 

Truth is, the part about the depression and the isolation of the Deafblind twins is real. I have seen it myself. I have lived it myself. I have travelled to the most accessible urban city  for Deafblind people in the world and see that the Nirvana of the Deafblind has not been reached; I have worked in Nigeria and Nepal – two of the world’s worst places for  a Deafblind person to even be alive in and the cloud of isolation and depression is just so heavy. Technology equipment that would morph Deafblind people to a higher level of independent living is just too expensive (thanks, Consumerism) and not many local or state level governments would dole out funds to cover the costs, thus Deafblind people live without that necessary means to survive society and choose the dark safety of their homes instead of venturing out with their government-covered technology that will stay a dream unless the government decides that Deafblind people are actually first class citizens, not second class. There are a very, very few independent skills training centres in the world for Deafblind people – most notably the Canadian Helen Keller Centre in Toronto, Canada; Helen Keller National Centre in Long Island, New York, United States, and a few small service centres in Europe. Most hearing-blind services provide basic training in Braille, Cane and specialized computer lessons but usually don’t go beyond teaching Tactile with Sign Language or Home/Independent Living skills (cooking, cleaning, daily chores, how to do errands with a sighted guide and Deafblind community immersion). There needs to be more of those latter, so that Deafblind people would be more likely to adapt to the ever-changing society and keep up with the times. Only if we were viewed as very able individuals with only loss of hearing and sight, not a piece of flesh that can be moved around like a puppet, a mind no one else thinks is worth pouring knowledge and the latest news into, a misfit that isn’t fit for any society.

There are many, many successful Deafblind leaders around the world, you would be AMAZED at the number of individuals who have overcome so many barriers and challenges to achieve system change, to spread inspiration, to educate society and the Deafblind themselves of their abilities and not the lack of, and write books, establish organizations, have a career that is just like any other sighted person given the Deafblind person is given the tools needed. I wonder if the Deafblind Verbessem twins know of all the above – the education that was available, the Deafblind community in Belgium around them, the tools that were out there for them to keenly acquire so that their fears of going blind would be soothed with their own amazement and comfort? We will not really know, unless they have written a book, a journal or spoken with someone who can verify that they know of this, or didn’t. 

But really, let’s get to the point. Whether they knew or didn’t know about what was actually available to them once they went blind is kind of moot now. Yes, they were anguished about going blind, but the real story was hidden from us and we were led through a sea of emotions and believing to be what was printed before our eyes (and our fingers, to those Braille readers in respect). Deafblind people believed that the brothers chose this way out because they were going blind, sighted people believed that as well but with the notion that it must be so terrible to go blind. 

But Marc and Eddie chose the right to die because one of them had a respiratory problem that had him sleeping upright (oh that’s not comfortable! I had a heartburn problem for a week and had to sleep upright and it drove me mad!) and the other had spinal cord damage and could not walk in ease (I have sciatica and it drove me even madder if I couldn’t walk with grace and just riddled in pain)… so there is actually a somber, revealing story behind the brothers’ decision to end their life. Dying because of their imminent blindness was SENSATIONALIZED, but now that the true story has made it out there, will that be popular as well or lost in the mainstream of many overlapping stories and drifted off to nonexistentalism? 

What the Deafblind community of the world can do is rise up, unite, EDUCATE the world of our abilities, FIGHT for our right to a better quality of life, CHANGE laws, society rules and our mindset about how we should live. The world needs to stop pitying us, spoonfeeding us, patting us on the head and whispering behind our backs that our live is destined to be a big nothing because oh dear, we can’t hear or see (nothing or partially, it depends on who you know in the Deafblind community)

We need to throw out that outdated theory that the brothers died solely because they were going blind, and go ahead with sharing the true facts of the story.

I respect their wish to die, may they rest in peace.

However, for the love of the Deafblind still living, please don’t see this as an opportunity to start a TREND in suicides or euthanizations of Deafblind babies, children and adults. We need to stand up strong and make our lives better by fighting for it.

Now I will share the links below and I’ll add more as I am fed more and more revealing stories about Marc and Eddie.

Tactile Love.

Coco

*I identify myself as a Deafblind person, because I am part of a worldwide Deafblind community. If people want to know specifically how I am blind, I have Usher Syndrome and am completely blind in one eye, and slowly losing sight in the left enough for me to see a circle that can expose faces or small areas. One doesn’t have to be completely blind to be indentified as a Deafblind person – they can be legally, partially or completely blind and Deaf. However, it is up to the person with partial or legal blindness to continue saying they are Deaf, and not Deafblind. A complicated blog for another time. 

***************************

The Examiner

http://www.examiner.com/article/deaf-twins-euthanized-marc-and-eddy-verbessem-make-controversial-choice

The Deaf Capital – op/ed

http://deafcapital.blog.com/2013/01/16/the-belgian-twins-euthanasia-and-the-myth/

 

Feel free to send me any more articles with links in the comments below.

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Belgian Deafblind Twins Euthanized!

I have not blogged in a while, life took its course. However, this topic is tragically urgent, something has to be addressed and discussed in the worldwide Deafblind community.

Two twins, both Deaf men, from Putte, Belgium (30 miles from Brussels) won the legal right to be euthanized (put to death legally by Belgian doctors) after citing their unbearable burden of going blind.

The Bangkok Post reported this and it became widespread, and then a French Belgian newspaper L’Avenir.net made their rounds about this story. Just now the Telegraph has written a more detailed article.

The twins, both shoemakers, had an unidentified eye disease that would take their sight in a few years (Usher Syndrome???) and at 45 years old, they requested the agreement of Belgian doctors despite not being diagnosed with a terminal illness or a physical disease. They were approved because it was “an unbearable suffering”….

Makes me wonder if the doctors consulted with the only Flemish Deafblind organization, “Feviado”, or if the twins were aware that there is another side to the Deafblind life – where there are accessible technologies, tactile lessons, Feviado….? Were the twins properly consulted?

This horrifies me. Yes, many Deaf people with degenerating retinal diseases become clinically depressed, withdraw themselves from society, find no solace in becoming blind and sometimes consider suicide. Deaf communities are mostly unintentionally ignorant, making their clubs, organizations and gatherings unaccessible to Deafblind people, thus making Deaf -turned- Deafblind people even more depressed and isolated.

I wonder if the inevitable outcome of this tragedy would mean that more and more Deafblind, and other disabled people who don’t have a terminal illness or a physical disease, would follow suit and opt for ‘mercy killing’ and euthanasia because they have this conviction that they are, in theory, dying as a person when they think that the most vital sense is diminishing? Would this lead to an unnecessary ‘self-massacre’ of Deafblind people who, in their depressed state, think they aren’t able?

I am curious what Feviado, and the Belgian French/Flemish Deafblind community is going to do about this?

My strong suggestion is for those Db in Belgium to take a stand on this, denounce the euthanasia of Deafblind people, talk to newspapers and television about how Deafblind are able to do things granted Belgian government provides access and funding for Deafblind support services.

I gave a lecture in Ghent, Belgium, the first weekend of December (13 days before the men died) and I strongly encouraged the Belgian Deafblind community to come together and build a strong foundation, start more gatherings, become role models for those Deafblind who think it’s the end of the world, and to BELIEVE in their abilities.

Now is the time.

As we mourn the loss of the Deafblind twins, we must take action to save lives and change them for the better, and instill HOPE for a better quality life for thousands and thousands of Deafblind around the world.

There is one English version of the story in the Bangkok Post and the Telegraph,  and the French version in the L’Avenir.

The Telegraph

http://www.telegraph.co.uk/news/worldnews/europe/belgium/9798778/Belgian-identical-twins-in-unique-mercy-killing.html

The Bangkok Post:

http://www.bangkokpost.com/breakingnews/330499/twins-allowed-to-commit-suicide

The L’Avenir

http://www.lavenir.net/article/detail.aspx?articleid=DMF20130112_00254599

Please post comments below, what you think and suggestions for the Belgian Deafblind Community as I am sure they will be reading the comments.

In sorrow and hope,

Coco

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