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Christine/Coco’s Notes:
I am a member of the American Association for the Deaf Blind listserv and we have been sharing stories, articles and viable information in the past. Last week I decided to share my opinion article, “We Can Be Killing Machines” and got a lot of encouraging responses. One of them was a testament, a very compelling reason why Deaf people with Retinitis Pigmentosa (RP) (Deafness + RP = new medical name: Usher Syndrome) should NOT drive.
Thank you, Dolly of Manitoba, for sharing this letter. Truly, truly tragic. The writer of this letter, Eileen, had RP and she found the courage to write to the AADB listserv about her tragic mistake of driving a car. Her life was destroyed and soon after this letter was sent to AADB, Eileen killed herself.
Eileen, I hope that your story is going to change lives and make people realize that if they have visual impairments, they shouldn’t drive. I am hoping that this saves lives.
Tactile love,
Christine/Coco/Tactilejunkie
**********************************
Here is Eileen’s Letter dated Nov. 27, 2001:
Hello RP List,
My name is Eileen. I am not a member of this list since I do not have a computer. My friend Greg has asked me if I would tell my story. It is a very hard story for me to tell and it hurts me tremendously just to remember it.
I was diagnosed with RP in my twenties. My vision was still 20/20 at the time and the doctor told me it usually progresses very slowly so I thought it would have very little impact on my life. In my thirties my eyesight started getting worse. I started to get tunnel vision and my eyes took a long time adjusting to changes in light.
I stopped driving at night, and got other people to drive me as much as possible, but I still drove just a little on roads that I knew in my neighborhood. I mostly drove to the grocery store.
I still had a valid drivers license because the state never asked me to get an eye exam, and in my regular checkups the eye doctor asked me about driving but did not press me. One day, March 6th 1990, as I was driving down my very own street I heard a thud and a scream.
I had run over my neighbors six year old daughter who had been sitting on the curb.
She died three days later. I just didn’t see her. I was buried by the grief and sorrow and could not look her mother in the eyes ever again.
I told the police about not seeing well. They got my medical records and charged me with third degree manslaughter and possessing a fraudulent license.
My auto insurance company charged me with fraud and would not cover me. The girls family sued me for 4 million dollars damages, and I was and am a total wreck. My friends all turned on me and the newspaper and tv coverage made
me afraid to go anywher in public.
My lawyers got the charges reduced to reckless endangerment with a 6 month suspended sentence. I had to sell my home and go bankrupt, and my finances are still tangled in law suit appeals. My employer fired me because of all the bad publicity.
The worst is the nightmares and the guilt. I wish that I could bring that little girl back. I relive that day over and over again. I still feel the pain of that girls family and pray that they can forgive me.
I now can only see light and blurry shadows. I often feel that God is punishing me for what I did. I have had lots of therapy and am just now starting to put my life together. I met Greg and other people with rp at the rehab center and that helps a lot.
Although I am begining to move forward, I ruined my life and took the life of a little girl. It was an accident, but it was an accident that i should not have let happen.
I hope sharing this will help someone.
thanks,
Eileen
i’m probably going to get a lot of comments regarding this entry. it could either put me in the hot seat with my deafblind community of usher’s compadres or get a whole lotts respect for speaking out.
i have a beef with people who have usher syndrome and drive. driving cars while they know they have a genetic disorder that allows their sight to deteroriate over time and eventually at end of the phase at any age, time in their lives, they’ll go completely blind. i’m one of these people who have accepted the fact sight will just be a pleasant memory and a precious part of my life when one day i see nothing but feel/taste/smell so much more. back on the track here. i read someone’s entry recently – that person has usher’s and talked about saving up to get a new car. baffled, i posted a comment on said’s site and asked “why are you getting a car when you know you have usher’s? having a car with your limited vision is turning it into a killing machine” – more like along the lines.
it infuriates me to hear so many usher’s drive. don’t get me wrong – a lot of us have loss of vision in entirely different intervals, levels and amount. no one is like me. but i know enough of the dangers it would pose to others walking on the street or driving in a car north/south/east/west of the car that an usher’s so confidently drives.
i have my reasons for being against this. in spring of 2005 i was in a car with someone who had usher’s. of course when i got in, i asked him bluntly: why are you driving a car while you’ve got usher’s? he replied by saying he can see well more than anyone thinks he can and that i should just trust him. okay. so off to eastern market we went. it got dark, and we hopped in his rental car back to gally. we passed 7-11 on md ave and enroute, i saw a black guy jaywalking the street and suddently turned to look at my friend. his face was strained, as if he was trying to ’see’ in the dark, and the color of the guy’s skin made it even difficult to distinguish even under orange street lights. horrified, i realized he could not see the black guy so i slapped his arm to stopppppp the car. he did and the headlights shone on the black guy. he was standing a mere 10 inches from the hood…. his eyes like deer. it was so horrifying. i told my friend to immediately bring me home. that was the last time i rose with someone who has usher’s. never again.
he said he could see well. hundreds of usher’s say they can see well. hell, a few years ago i said i could see well. it’s all part of denial. we do not want people to know we’re hurting so bad. we don’t want to give up the luxuries we’re used to. driving, travelling, taking off by ourselves, being independent and being able to see. we never want to give up all that. so we just focus on what’s in the middle of our tunnel vision and claim we see well. i now can tell you… it’s unpredictable. only you (the usher’s) can know how well you see. no one else.
but are you willing to pay the price? by hitting someone? a young five year old girl who runs on the street to get a ball – any sighted person would have caught her except you. an elderly lady slowly crossing the road but you’re too busy looking out all sides your tunnel vision misses her and hit her. knowing that there are usher’s who drive, i am terrified to death because being usher’s myself i cannot get out of the way like any other sighted person.
in louisiana, many usher’s drive. because of lack of reality and education. louisiana usher’s drive in the country. so what? they kill tons of squirrels and not even know it. but what happens if they go into the city? the placid vast horizon of the country becomes a noisy, crowded street in the city. anything can pop up. the state of lousiana passes out driver’s licenses to usher’s as if it were coupons. ‘oh they can see in front of them, that’s good enough for me’ and tada the dmv passes these lucky cards out. an ushers told me that an elderly lady who works for the dmv just handed it out like it was candy and didn’t give second thought to an eye test. oh my dear jesus. she’s handing out licenses to kill.
i don’t have a driver’s license. i was told i had usher’s at eight years old. so i got the education i needed. two close canadian friends/siblings of mine don’t even drive either. no license. they know. ontario outlaws people with usher’s to drive. but for many out there who don’t even know they have usher’s until it’s noticeable, it’s bound to happen but it’s up to them to sacrifice the luxuries including driving a car so they can focus on their well-being and happiness in life instead of dwelling on what they’re going to lose. for many usher’s out there who acknowledge it and own a car… it’s time for you to let go. because it may be too late….
never underestimate how much you can see. it can cost you your life. it can cause a domino effect of grief and anger. no family should bury a loved one knowing the person responsible for this could have prevented it by giving up driving. think about it.
so my position stands as is. no usher’s should drive. period. there are support services, friends, family and cabs who can drive you anywhere. in ottawa, i’m affectionately known as the cab girl. 
tactile love and make sacrifices, even if it means admitting the hard truth to yourself.
It has been almost 2 weeks now since the Deaf Blind students and alumni of Gallaudet University sent out a letter inviting President Davila and his team to meet with us on March 30th concerning issues of the past, the present and the future.
And we have yet to hear from him, or Jay Innes and Richard Lytle, Assistants to the President.
We got a confirmation letter from greatideas@gallaudet.edu that they recieved our email but was forwarded to the Assistants to the President.
I am not going to jump the gun and accuse President Davila of ignorance, however, I will write him another email expressing my concern of lack of response on his part. And I’m going to make sure the Assistant to the President for Diversity, Darian Burwell gets it. If we cannot see Davila, then Burwell will have to do.
What will it take for him to listen to us? We might not be racially-focused or mired in audism, but we are the forgotten minority of the Deafhood community.
If you read this and know how to give the new President a nudge, please do so.
Christine Roschaert
Deaf Blind for Gallaudet.
Louisiana Acadiana Deaf-Blind Citizens, Inc.409
W. St. Mary Blvd.
Lafayette, Louisiana
70506
E-mail: LSUCajunDan@cox.net Videophone Direct: (337) 984-1731Sorenson Video Relay Service: (866) 327-8877, extension (337) 984-1731
Dear Sir/Madam:
The Louisiana Acadiana Deaf-Blind Citizens, Inc. ( on Saturday, April 28th. To make this occasion an enjoyable and memorable for our Deaf-Blind Citizens, we are planning to have a guest presenter,
LADBC) is sponsoring its annual picnic at the Daigle Hall, Affiliated Blind of
Louisiana located at
409 W. St. Mary Blvd., Lafayette, Louisiana
Christine Roschaert of
Ottawa, Canada. Christine is deaf-blind herself, one of great leaders during most recent Gallaudet University protest in Washington, D.C., will tell her experience her involvement and her decision to go on hunger strike.
We would like to undertake numerous raffles as door prizes throughout this picnic. This is one of our annual fund raising projects to provide sufficient monies and support for the needs of Deaf-Blind people. This is also to defray the travel expenses of our guest presenter, Christine and to provide the famous Louisiana Cajun hospitality we are noted for! With Christine appearing as our keynote presenter, this will provide further educational opportunity as well.
We invite your participation as business/organization/personal to sponsor this momentous event.
LADBC is a non-profit tax-deductible charity classified as 501(c) (3). With your donations we will acknowledge your generosity to the participants at this event. We also invite you or a representative from your entity to visit and mingle with our Deaf-Blind Citizens throughout this event. Donation can be made payable to
LADBC and mail to Maria Garden, Treasurer at above-mentioned address.
In addition, we are very much in need of Support Service Providers (SSP) in helping to tactile-interpret / guide deaf-blind attendants during that day. By accepting to be SSP for a day, we will waive the cost of admission (FREE admission). When you make up your decision being SSP (part of friends with deaf-blind person), please contact me at above-mentioned contacts before I could assign you working with specific deaf-blind attendant, possibly picking up him/her at home if needed.
On behalf of the
LADBC, thank you in advance for your consideration.
Note: See list of sponsors BELOW
Sincerely,
Dan Arabie, President
Cc;
LADBC file
———As of March 7th, here are list of sponsors as follows:
- Affiliated Blind of
Louisiana - Affiliated Blind of
Louisiana – Acadiana Chapter - Arc of
Baton Rouge - Bayou Girl Scouts Troop 202
-
Community
Advocacy
Center for the Deaf – Lafayette - Country
Mobile Living - DeafBayou.com
- Deaf-Blind Support Group
Lafayette Athletic Association of the Deaf- Mire Farms
** We,
LADBC are still looking forward more sponsors being a part of us…
It’s no secret. I’m 27 years old, afflicted with Usher Syndrome and proudly Deaf – and single, too. I’ve been single for, what, 27 years?
Some people remain single because their personalities suck. Or their body odour is so repulsive. Bad teeth, poor hygiene, Tourette’s syndrome or badly disfigured. Or in my case, being blind does have a part in many being single.
Last week, I encountered a Deaf guy sitting across from me. He seemed clueless that I call my cane my best friend, that at nights or special situations I use tactile for sign language, or even the fact that I am a budding leader for the Deaf-Blind.
We start witty banter and it leads to flirting. The light is shining through the windows from outside, and his signing is crystal clear because of that reason. We go on, then I tell him I have to get going and reach into my purse for my cane, which has been folded in quarters and tucked neatly into my baggage so that it wouldn’t fall standing up.
His eyes popped open. He said, “You’re blind?”. I nodded. He then shook my hand, and said, “Nice to meet you. See you around.” and hastily exited.
There goes another one. Not that it’s my loss, it’s theirs. I’m just annoyed sometimes that these potential suitors would quickly dismiss the budding romance just because I’m “blind”.
I’ve had several guy friends – I emphasize, good guy friends, tell me the real reason why I’ve been dateless all my life, even during my 7 years at Gallaudet. It’s because I have Usher Syndrome. Dating someone who might not be entirely independent and lacking an asset most Deaf people consider sacred (eyes, for those who haven’t figured it out) scares the shit out of some men, even some women. The thought of having to interpret everything that the sighted see, having to guide their companion everywhere, the thought of losing their blind companion in a freak accident clouds the sighted’s judgment and they’re quick to determine that even the other half that seems to fit them the most – is not right because they cannot see.
I’m not cynical or bitter. I’m being blunt here.
In my 7 years at Gallaudet, I have been asked out by 2 guys – and our dates ended up awkward, insecure. Turns out they were confused about their identity and wanted to “experiment” on me to see if they liked girls or not. Ouch.
Other times I would ask guys out. Most times their reaction would be as follows:
“I’ve got plans.”
“I’m sick”
“You’re not my type” (this coming from a guy who I truly believed we CLICKED.
“Sure. Let’s do it in a month from now.”
I get it. Ok? I get it!! I admit that if I were sighted and didn’t immerse myself into the Deaf-Blind community, I would have freaked at the thought of dating or even marrying someone who is fully blind. Eventhough he may be Deaf. It’s the darkness and the silence he would go through, the emotions of feeling inadequate and insecure. He would wonder, “What’s really out there, what am I missing that she is not telling me? Why cannot she tell me 100% about the details around me? Is she seeing someone else? Are people deceiving me in front of me?”
Yes. I do think those. It’s getting harder and harder for me to trust people because once you lose vision as well as hearing, you begin doubting what is around you. I have to assure myself that one day I will meet him – the total gentleman, who believes in me as much as I do him, and the trust is wholesome. That is gonna be a bitch to find but I am determined.
Why do I say many of the Deaf-Blind population is single? Because sighted people are scared as shit – they don’t have the strength or courage to live with us on a daily basis. Even the strongest, most independent Deaf-Blind (me) is single. I went to Seattle, Washington for an internship in 2005 and I was amazed at the sightings:
- 100-200 Deaf-Blind people live in WA State
- In Seattle, I know of roughly 10 couples who are married, one half of them is blind, the other is sighted
- Same city: two couples who are BOTH Deaf-Blind (and their lifestyle rocks – they just totally adapt!)
- majority of the Deaf-Blind there are single. I’m talking 75 percent.
I know it is frightening to imagine yourself (the sighted) falling in love with someone who has lost one or more senses than you do. It gives you even more privileges, for instance, sight or sound and the other MIGHT feel inadequate. There are instances when he/she might lash out at you because you ‘forgot’ to let her/him know something happened; or there was a bag in the hallway that she/he fell over – or even the simple gesture of going to the bathroom without letting her/him know. It’s like walking on glass, or even hot coals – it hurts and it’s sharp… fragile at most times.
But don’t be quick to assume that all of the Deaf-Blind people are angry, bitter people. Some of them might have completely come to terms with their blindness and have ways to adapt to anything that comes into their way. They might even be one of the most positive people you’ve met, not believing in fear or anger. Privileges may be present, but keep in mind: Deaf-Blind people do have their certain privileges from losing two senses – gaining more in the 3 others. 
For me… I admit I have a “criteria” when it comes to keeping a companion by my side. He must have: patience (for when I break glass or spill water), humour (when I feel at my worst), compassion (when I think I’ve erred), laid-back-ness (serious, uptight people needn’t apply), wanderlusting (I live to travel. Domesticity bores me.), open-mindness (I like to explore the unknown), willingness to be a part of my Deaf-Blind community (self-explanatory and vice versa) and encouraging (I have dreams to chase, and I want him alongside, chasing his own dreams too) and lastly… trusting (he has to be my eyes as well as me his soul). If I have found someone who fits those criteria, then I am so in love.
If I were a genie, I would wish that every Deaf-Blind had their soul-mate alongside them and content with their own blindness, also their hearts brightened by the light of love.
Tactile luv.
Let’s talk about “et cetera” today.
There was an article by Jamie Berke on deafness.about.com regarding the merge of Deaf and Blind schools. By Deaf and Blind schools, some states are merging schools for the Deaf sighted and the hearing Blind to save money for the state’s education budget. What do I think of this? I think it’s absurd. I don’t think both schools should be merged, rather, kept separate. If the state wanted to save money, then merge the hearing Blind school with one of the private hearing schools? Deaf schools are special in their own right. But I have one lingering question no one seems to be able to answer: Deaf schools are for the Deaf sighted; Blind schools are for the hearing Blind. Where do the Deaf-Blind fit in? Jamie asked a good question: How would a Deaf Mute using sign language talk to a Hearing Blind who doesn’t use sign language? That’d be tuff if two of these children bumped into each other and fell to the ground….
Sonny James asked me this a while ago and I need to pulse everyone for this, especially my Deaf Blind readers.Is it appropriate to call someone Deaf-Blind, DeafBlind, deafblind, Deafblind, deaf blind, deaf/blind or what? I have a hard time conforming to one of these – I usually say Deaf-Blind or Deaf Blind. Both in capital letters to begin with. I guess it’s because I grew up calling myself Deaf with a capital D with my background in a Deaf institution – and capitalizing B gives Blindness the sense that it is important, too. Deaf blind would give off the impression that blindness is secondary to being deaf. The more blind I become, the more I want them to be equal. What do you think?
I am still waiting to hear from Ottawa-Carleton Transpo and the President’s Office regarding my two letters for accessibility and a meeting, respectively. La la la.
I have a 11-minute terrific vlog I want to share with everyone. It is about my horrific experience as a injured Deaf-Blind in a hospital that tried to force Video Relay Captioning on me and ousting my two Deaf-Blind interpreters. YouTube won’t accept the vlog as it’s over 10 minutes; Xanga finds it tiresome. I want that vlog out on the cyberwaves asap.
Do you have research skills to help me out? I want to develop a portfolio, a plan to present to Dr. Davila that is loaded with information about Gallaudet’s programs for the disabled and enrollment/graduation/employment numbers of the Deaf-Blind, physically-challenged and learning challenged? Find anything I can use, email me at tactiletheworld@gmail.com.
I contacted a Deaf-Blind man named John whom I advocated, counseled and mentored during my year as a Director for the Higgins-Hogue SBG administration. He was deep in denial and I had hoped I shed some light on accepting the fact that he was in the end stage of Usher Syndrome and started adapting to blind life. When I returned to DC in October for the protests, I joined a large crowd in front of the SBG on the first day I arrived. It had been the second day of the HMB lockdown. A former interpreter of mine had volunteered to relay information from the speakers, and he said “Now getting up on the stairs is that Deaf-Blind guy, he’s tall as heck and using a cane…”. I was puzzled and looked around to see who he was. It was John! He was holding a tall cane and asked someone if he/she could hold his “weapon”. My eyes filled with tears and I was still in awe. When he asked someone if he could begin and reached his hand out for a response, he actually used tactile to interpret the signed response. I was utterly shocked. In May, this guy said he didn’t need a cane and took his hand away from mine if I had attempted to sign under his, encouraging him to use tactile. Now he was there, making an announcement: I am the President of the new Gallaudet Association for the Deaf-Blind.I almost shit in my pants.“The reason why I am in this protest… is to speak out for the rest of the Deaf-Blind students on campus. Our role model and mentor, Christine Roschaert, graduated and we were left to wonder: who would take after her? Who would lead us? Thanks to her legacy…”I started bawling like a baby. Ok?
Yesterday, in my CC to him and several others on Davila’s invitation letter, he responded back and said he was the President of the
Union for Low-Vision Students.I went: eh? Low-Vision? Don’t you mean Deaf-Blind?He went on to explain that the officers decided to change the name. I protested, telling him that 1) calling yourself low-vision is a politically correct term, but does not define the attitude you have towards building a partnership with all kinds of Deaf-Blind individuals; 2) by stating the name of the organization, the members must abide by the constitution and accept only students who have low vision and turn away fully-blind Deaf students. That is not the objective I had sought out. Deaf-Blind students vary by blindness: legal blindness, low-vision, fully blind… etc. I still have a problem with the title of the new organization. Imagine if I were a graduate student doing my studies in Braille because I am fully blind, and I want to go to meetings where there are Blind students but I cannot join this one because it’s for only low vision students. Like Asian Pacific Association, they don’t say “Chinese Association for the Deaf” or “Gallaudet Filipinos”. The APA accepts all kinds of Asian people, especially from the Pacific. Catch my drift?I tried explaining this to John but he is set in his ways and refuses to consider my arguments. Oh boy.
Today, during my grasshopper commutes to work, no one would give up their seat for me. And you think Canadians are gracious, kind, polite? My ass.
Throw me a bone to chew on?
Tactile luv.
Several alumni and current students of Gallaudet including myself collaborated to write a letter and convince President Davila to see us on Friday, March 30 to discuss the previous and ongoing issue of poor quality of services and education for the Deaf-Blind. During the era of Jordan, Fernances and Kelly, the number of Deaf-Blind students enrolled did increase but sharply declined due to withdrawals. Many of us struggled with the poor quality of services under CAPSS and social acceptance. We hope that Davila is keeping his word on his “open door policy” and welcomes us to meet with him – provided that the President’s Office will cover the costs of Deaf-Blind interpreters.
And I will be in town that weekend so I am praying that President Davila honors our request so that I can finally tell him my side of the story – how the Jordan/Fernandes administration almost crushed my dreams of graduation and job opportunities.
Yo, President D, what say ya?
Tactile luv.
**********************************
President Bob Davila
College Hall
Gallaudet
University
800 Florida Avenue, NE
Washington, D.C.
20002
Gallaudet Coalition of the Deaf-Blind
March 7, 2007
Dear President Davila,
First, we would like to say: Welcome Home.
We are a group of current and former students of Gallaudet, all of who are Deaf-Blind. We vary by visual fields – some fully blind and some have Usher Syndrome. All of us have the same objective in mind when writing you this letter of invitation to meet with us on Friday, March 30, 2007.
And that is to keep you up to date and aware of the issues that we have endured as students, past and present. Let it be known that our educational journey at Gallaudet was rather difficult, not a smooth one. Many of us had and still seek betterment in the quality and quantity of services in order to ensure that we achieve our dream of graduating with a degree. In the past, our social and educational abilities have been tested by ignorance, oppression and limited funding.
Many universities, including
University of
Minnesota,
San Diego
State
University,
Western
Oregon
University and
University of
Alabama boast better programs for students with disabilities than
Gallaudet
University. Gallaudet is supposed to be the mecca of Deaf scholars, serving their needs be it visual, auditory or tactile. But that’s not the case. Many of us have suffered in terms of course failures, lack of job opportunities, quality of services and interpreting.
President Davila, be it known that during the years of
Jordan’s presidency, many of us spoke out on the plight of the Deaf-Blind scholars and received very little support.
There is so much more to be discussed – statistics, facts, evidence and stories from the Deaf-Blind associated with Gallaudet in the recent years – we long to be heard, too.
We sincerely hope that you open your doors to us on this day of March 30 and have Team Gallaudet on standby to readily listen. It’s a long time overdue. Please contact us so that the President’s Office can seek support from the Interpreters for the Deaf-Blind at GIS. Any questions, please don’t hesitate.
Sincerely,
Christine Roschaert
Alumni, Class of 2006
John Winstead
Current StudentPresident, Gallaudet
Union for Low-Vision Students
Laura McNair
Alumni, Class of 2005
Chad Metcalf
Alumni, Class of 2005
And so many more.
There was a recent episode on Dr. Phil that featured three deaf-blind triplets and their frustrated parents. I haven’t seen it yet – but from what I hear, I’m not gonna like it.
Anyone know where I can view the episode???? Help!!!
When I pah see the episode, then for sure I’ll jump into the debate that is simmering over the choices that the show made in order to freudize the parents on how to deal with their three 6-year old triplets who are fully deaf & blind.
tactile luv.
