Corinne Rocheleau Rouleau's
Inspiration
Corinne Rocheleau
Rouleau
What you are about to read here is not about Franco American women in any specific way, but I hope it will bring to mind the struggles of women everywhere who need to learn to embrace their identity, to be proud and comfortable with who and what they are, and to discover their own unique potential. This is my story. My inspiration came from one of our class readings on Corinne Rocheleau Rouleau, a late-nineteenth century Franco-American woman who lost her hearing after an illness at age nine. In all the things I have read about Corinne the thing that stands out for me is the way she used her writing to investigate, educate, and create change. She championed causes that were dear to her heart and not merely the popular causes of the day so that deaf-mutes and Franco-American women came to have a new voice to speak for them. I am challenged and inspired. In our class on Franco-American Women's Experiences we have talked a great deal about what it feels like to be a minority and how minority voices can be silenced by lack of validation. We have spoken about how it is difficult to develop a sense of worth and maintain ones own values if the majority of voices around you are sending messages of your unworthiness. We have read about and discussed many Franco-American women who have endured a double dose of this experience. Not only were they often displaced out of their original cultural environment, but also they were also often devalued by their own culture. We have also spent some time discussing what it feels like to need to "fit in" with the majority, and in effect deny your own unique background and experience. It is little wonder that Franco-American women have lost their voices. I am not a Franco woman ( I have British ancestors but my Franco name LaPointe is a gift from my husband) and yet I can truly identify with these women and the struggles they have endured to be heard and validated. I think most women could identify to some extent; even if they have not experienced the challenges of being an ethnic minority, they still will have surely felt the effects of being a woman in a male oriented society. I claim an additional distinction, however, because I belong to a minority that has no ethnic, geographic, or economic boundaries. I'm one of 43 million Americans who have a disability. I usually describe myself as being hard-of-hearing, or I just say, "I don't hear well" instead of telling people I am deaf. I use this terminology because I do still have some of my hearing and also because I see myself as a perfectly ordinary person who just happens not to hear as well as the average person. I really don't want my hearing loss to define me. Yet, at the same time that I am trying to be just an ordinary person, I am also struggling to educate people around me that hearing loss is a disabling condition. Ironically it is often the case that I find myself coping with my disability so well that people don't take my requests for accommodation seriously. They honestly don't think I have a problem! How do you convince someone you have a profound hearing loss when you can stand beside him or her and carry on a conversation with them? Hearing loss is not a highly visible condition and the non-disabled public does not readily understand its challenges. I always cringe when I hear people talk about people who have disabilities as "THE deaf, or THE hard-of hearing, or THE handicapped, or THE blind" For some reason it sounds very dehumanizing to me, as if the significant distinguishing feature about the person is their disability. It also strikes me as a form of stereotyping because it implies that all people who have a particular disability can be lumped together in a tidy little group and therefore served or disposed of with one-size-fits all solutions to whatever problems might need to be addressed. Sign language interpreters are probably the best known accommodation that is provided for deaf or hard of hearing people, but the fact is that many people with a hearing loss do not use sign language to communicate. Approximately one out of ten Americans have some degree of hearing loss. And about one tenth of those use sign language as their principle language. The other 90 percent would be comprised of people who are likely to have some residual hearing and communicate orally with or without the use of hearing aids or other assistive technology. (1) Late-deafened adults who have had normal hearing until later in life would also fit into this category. There is actually a very marked cultural distinction between these two segments of the population of hearing-impaired people, which goes back many years. American Sign Language (ASL) is the distinctive language of the Deaf community in the United States, a social grouping that is marked by an intense cultural cohesiveness that is very similar to an ethnic grouping. Interestingly, there really is no "hard-of hearing community" to correspond to it, as most hard-of-hearing people blend in with and do not view themselves as being distinct from the hearing population. This whole scenario makes for a very interesting social phenomenon, as it is the only instance that I know about where a distinctive culture has been developed around a physical attribute (or rather, lack of a physical attribute). It is further interesting to note that some members of the Deaf community do not consider their lack of hearing as a disability, but rather as a distinguishing badge of inclusion, a distinction to be proud of. (2) The "manual vs. oral" (sign-language vs. lip-reading) debate in the education of deaf children has been ongoing for more than two hundred years and rages still today. Corinne Rocheleau received her education during an era when Oralist tradition was extremely strong. The school she attended after she became deaf, Institution Catholique des Sourdes- Muettes in Montreal, was initially established as a manual school and later adopted a "combined" approach which incorporated both oral and manual methods. (3) By 1879, some fifteen years before Corinne's attendance there, the school had finally switched to a primarily oral system and were physically separating the oral students from any remaining manual students. This gives us some insight into why Corinne learned to lip-read instead of signing. It also arouses my curiosity as to how her parents chose this school for their deaf daughter. From her home in Worcester, Massachusetts, there were certainly several schools for the deaf that were closer than the school in Montreal. Clarke Institution for Deaf-Mutes (est.1867), in North Hampton, Ma. was an oral English school, as was Boston Day School for Deaf-Mutes (est. 1869, later renamed Horace Mann School for the Deaf).(4) I strongly suspect that the deciding factor in the choice of school was not the educational methods , but rather a more cultural (or perhaps religious) consideration. Les Institution des Sourdes-Muettes was a Catholic bi-lingual school run by the Sisters of Providence. It's possible that Corinne only spoke French prior to her being deafened which would have been a good reason for her parents to seek out a French speaking school. It's interesting to learn that Corinne was able to lip read well in both French and English. People often talk about lip-reading in a casual way, as if it was an instant remedy to a hearing loss. Actually, lip-reading is one of the most mysterious and amazing things that our minds can do. When I stop and think about what actually happens when I am lip-reading, it astounds me. First of all my hearing loss causes me to hear some frequencies of sound better than others. I hear low frequency sounds like engine noises very clearly, and high frequency sounds like birds singing, not at all. Human speech combines both high and low frequency sounds, so when I am listening to a person speak, I may only hear parts of the words they are saying. The word ship might sound to me like __IP, as the SH sound in the beginning is lost to me. String a whole group of these partially heard sounds all together in a sentence and I am listening to something that sounds like a foreign language. I can hear the inflections in the speakers voice but I just don't have enough information about all the sounds in each word to put it together into intelligible speech. This is where lip-reading comes in. When I lip-read I am watching for familiar sounds that show on the lips. About 40 percent of the spoken sounds will show on the lips and tongue and there are about 43 different lip/tongue positions that can be distinguished visibly. (5) If I pair these visible speech positions with the sounds that I actually can hear, suddenly my eyes see the SH at the beginning of the word and my ears supply the IP that I can hear. This combined information magically gets transmitted to my brain and assembled into a word that has meaning to me. Lip-reading takes a tremendous amount of concentration and it is not fool proof. It's easy to mistake some of the lip positions for others that are similar. For example, the sound "J" looks very much like the sound "SH" on a speaker's lips. So when I'm listening, I am also doing this rapid-fire selection process to determine which possible sounds fit the larger context of what the person is saying. (Is the word "Gyp" or "Ship"? The speaker is talking about a cruise, so let's go with "Ship".) Meanwhile, I am also collecting information from the speaker's facial expressions and body language to help me determine the context of the communication. In optimal situations I can understand speech at something close to 90%, where without lip-reading my rate of understanding is down in the 40% range. In non-optimal situations, such as when the lighting is not good, there's a lot of background noise, the speaker has a beard or mustache, moves around too much, or is too far away from me, my understanding rate is down and the fatigue level is much higher. Lip reading with no sound (such as when I don't have my hearing aids in) gives me anywhere from 30% to 50% comprehension depending on the circumstances. I learned to lip-read naturally, as some people do, but it is not a given that every person who has a hearing loss will automatically pick it up on their own. Today there are lip-reading classes available at many speech and hearing centers, but there is a variability in how proficient individuals will become with lip-reading skills. In short, lip-reading skills can be immensely helpful to a person with hearing loss, but like a hearing aid does not completely remedy the lack of hearing. When I was a kid my sisters used to tell my mother " Gwen isn't deaf, she can hear you when she wants to". For the longest time I really thought this was true and that if I just tried harder I would be able to hear everything. People still occasionally say this to me, but now I understand that it is an easy assumption to make because it certainly seems to be the case. The hard of hearing person hears what you say in one situation, and then a few minutes later doesn't respond at all when you speak to her. This happens to me frequently because I must focus on the speaker in order to understand speech, and I can only concentrate on one thing at a time. It is very difficult for me to cook, clean, watch TV, drive, or read a book, and carry on a conversation at the same time. If people speak to me when I am focused on something else I may not hear them at all or I may miss part of what they are saying. For this reason, I encourage people to get my attention first to avoid missed communications. And to people who keep using the "you can hear when you want to" complaint even after I have explained the problem, I say, "You're right" and smile sweetly as I walk away. I should also mention here that many hard of hearing people have variable hearing ability. Certain diseases of the ear may cause a person's hearing to fluctuate without warning. And also, as in my case, I hear some sounds better than others do. So I might be able to hear the washing machine chugging away two floors down and not realize someone is talking to me in the same room. Communication with a hard-of-hearing person certainly takes patience and an understanding of the variability of the listening environment. My husband, who is hearing, deserves a medal for he way he has adapted to my communication needs. He knows that I won't hear him if he speaks to me from another room and so there is no calling back and forth between rooms in our house. Whichever one of us wants to initiate a conversation goes to the other person wherever he or she is. He knows that when I am really tired I don't hear as well, so we might postpone lengthy conversation at such times. Our biggest challenge is communicating when we are involved in some outdoor activity and he needs to tell me something quickly in the middle of the action. Over time we have learned to rehearse things ahead of time so that I know what to expect before we proceed, to keep the need to communicate verbally to a minimum. We also have a few hand signals that we use when we are kayaking and hiking that help us communicate when we are not within my hearing range. It takes extra effort to work out the details of how we are going to communicate in new situations, but it doesn't stop us from trying new things. We have enjoyed a number of activities together where the listening situation was less than optimal for me, such as white water rafting, kayak rescue training, cave exploring, and all of them have been really positive experiences for both of us. Communication is a two way street, and with a hearing loss in the mix both the hearing and the hard of hearing person will have to make extra effort to sustain a satisfying communication. Here are some rules of the road for the hearing person who is trying to achieve this goal: 1. Don't shout
2. Talk naturally
3. Get the person's attention before starting
to talk to them.
4. Make sure the person can see your face
5. Move away from noisy environments.
6. If the person is having a problem understanding
a particular phrase or word, try rephrasing your thought with different
words.
7. Realize that listening is hard work for the
hard-of-hearing person
8. Ask how you can help
Ideally, the hard of hearing person should know these rules themselves and be able to make requests to arrange the environment so that they can hear. Don't be surprised, however, if they don't. Lack of empowerment is a very typical characteristic of people who don't hear well. There's a very good reason for this: it is very difficult to feel confident and in control when you are not quite sure what is happening around you. Some people compensate for this lack of control by taking over every conversation so that they never have to listen. Others react in the opposite way and simply withdraw, letting other people make the decisions and take charge. And still others, myself included, move back and forth between being empowered and in charge of themselves and feeling overpowered by people who have a greater range of communication options. I was born with normal hearing but began losing it gradually when I was around ten. The cause has never been determined, but I suspect it is hereditary, since there is a long history of hearing loss on both sides of my family. It has been a progressive loss; changing imperceptibly from year to year but resulting in what is today a severe to profound hearing loss. I have worn hearing aids since I was thirteen, and depend on them today. Without them I can hear very little. With them, I have enough sound to keep me oriented to things happening around me and to help me understand speech. When I was diagnosed my parents had to make the kinds of decisions that all parents of hearing impaired children are faced with. What to do about communication, what to do about education, what options are open to this child? In those days (the 60's) there were few educational options for parents of hearing impaired children in Maine. Baxter School for the Deaf was the residential school of choice for children with profound hearing loss. At this school sign language became the principle mode of communication, and the child entered a culture that was foreign to most hearing parents. On the other hand, in Maine public schools at that time there were no options for special classes or mainstreaming a special needs child. Still, I don't believe my parents ever seriously entertained the idea of having me learn sign language or enrolling me in a deaf school. My hearing loss was mild to moderate when it was diagnosed and there was no clear prognosis, or prediction of how severe the loss would ultimately be. Since I had normal hearing during my early years, learning language was not a problem. I was able to speak intelligibly and even at age twelve I was already teaching myself to lip-read. And so I completed my education in public schools, up through my second year in college. School was difficult for me, however, both academically and socially. I was a shy child to begin with, and not being able to hear well made me less than confident about interacting with people. I was afraid of speaking up in class for fear of misunderstanding the questions. Looking back I also believe that I even then had difficulty hearing class discussions and so always felt tentative about participating, not being able to keep track of the discussion. In high school my hearing loss was documented in my records, and my teachers all knew that I had difficulty hearing, but I don't recall any of them approaching me about it. I had not learned to talk with people about my hearing loss at that point. I was embarrassed about it and about being different and I didn't want anyone to call attention to it. My mother, who was a teacher herself, encouraged me to talk to my teachers and ask for help when I needed it. I found that very difficult to do. (As I look back, I realize that my mother had the right idea about self-advocacy but sadly she died half way through my sophomore year. It was years before I was able to understand my disability well enough to learn to advocate for myself.) The only accommodations that were typically made for me was that I was allowed to sit near the front of the room in most of my classes. I usually chose a seat in front on the right of the classroom, so that by turning a little bit I could see what was going on in the rest of the room and still see the teacher. To this day, when I enter a meeting room, I almost instinctively head for the right front of the room. I remember in one high school history class, I had a difficult time taking tests because the teacher tended to let the students chatter during the test time. They would be teasing for hints to the questions or just generally joking around as they did the test. I would be very distracted by this because I couldn't hear what they were saying and at the same time concentrate on my test taking. I was afraid the teacher was giving hints and answers that I was missing. I believe this was the only time in my entire high school career that I voluntarily advocated for myself. I flunked a test and when the guidance counselor asked me what happened I told him about the testing atmosphere. When the next test day came around the history teacher gave a little lecture to the class about being quiet during the test, explaining that some students had complained about not being able to concentrate. "Who"? the students wanted to know. The instructor didn't look at me, but my cheeks burned with shame, sure that everyone would know I had spoiled their fun. But even in my shame I had to acknowledge that I did much better on my tests in the more orderly classroom that ensued. This is when I began to learn about the two golden keys of learning environments for people who have hearing loss: routine and organization. If I can predict that things are going to happen in a certain sequence and will follow a prearranged pattern, I am free to think about other things and can prepare myself to participate. When affairs are planned spontaneously and are loosely organized, my energy is taken up trying to follow what is happening and my opportunity for participation is diminished. In the realm of learning, the more structured the setting, the better I will learn. College was kind of a mix of both scenarios. It was a struggle at first to learn how college worked, but once I was familiar with the setting, I found it to be a pretty structured place. Assigned seating, a written syllabus, and daily schedules carved in stone were all guideposts that kept me oriented to my surroundings and responsibilities. I was still shy and still unwilling to talk about my hearing loss but I found that I mixed with people better and felt better prepared to do my academic work. At this point there were no special services offered for students with disabilities and I probably would have felt too self-conscious to avail myself of them, had there been any. Eventually I received an Associates Degree in Human Services and went to work in a group home setting as an activity director for mentally retarded adults. It was a job that I enjoyed tremendously, but I was not long in the field before I began to feel the stress of trying to hear and function in noisy surroundings. I was on the search for a new career before long. Making practical career decisions was difficult since I didn't understand my hearing loss and what I was capable of doing. I bounced around quite a bit without a plan, trying one job after another only to find with each one that my hearing loss limited how well I could do the job. I was still finding it difficult to discuss my hearing loss with my employers, even though I knew that they knew I had the problem. In looking back at these years I realize now that one of the things that I lacked was a positive role model. Surrounded by people with good hearing, I had no way to judge realistically how I measured up with the rest of the world. I think I became a little obsessed with functioning as if I was a hearing person, because I felt that was how my worth was measured. In my mind, it was a shameful thing to misunderstand someone or to make mistakes because I didn't hear correctly. After all, I would tell myself, a hearing person would not make those kinds of mistakes. I just needed to try harder and I would be just as good as a hearing person. And so life became a daily struggle of trying to "fit in", to measure up, and to be just like everyone else. I marvel now at what incredible pressure I put on myself to blend in and measure up. I didn't cut myself any slack at all and it is really no surprise that I eventually found myself in the middle of a severe clinical depression. When you hit bottom there is no place to go but up, and up is where I went. I spent several years regrouping, getting personal counseling and working with a Vocational Rehabilitation counselor who helped me formulate a career plan that involved computers, a field where I could excel without having to depend on my hearing. This led to more training and eventually to a very interesting and challenging job that has opened many doors for me over the past sixteen years. I can still remember the exhilarating feeling of realizing that I could not only support myself but also was capable of much more than I ever envisioned. Not long after I had started my new job and my new life, I came in contact with an organization that had a life-changing impact on me. It was a national support organization called Self-Help for Hard of Hearing People. I began attending some workshops and conventions sponsored by this organization and soon became actively involved in helping to start and coordinate a local chapter of the organization. The biggest attraction that this group held for me was that it was organized and directed by individuals who had hearing loss just like myself. These were not "victims" who needed to be taken care of, they were vital, purposeful, proactive, productive human beings, who just happened to have a common challenge, hearing loss. I had no trouble identifying with these people, since they were what I aspired to be. And the beauty of it was, for the first time I knew I was capable of living up to their example. This was my first exposure to role models whose example I could follow, and it made a tremendous difference to me. Within the comfort zone of this organization, I began to really explore what it meant to be a hard-of-hearing person. I want to share with you some of my most valuable lessons. 1. When you advocate for your self, when you ask for an accommodation, you are advocating for many others who will come after you. I was reminded of this semester in our Franco-American's Women's class. Whenever I take classes anywhere, I try to plan ahead and determine what kinds of accommodations I might need ahead of time. I noticed that one of our assignments was to watch a video that had been produced by MPBN. Knowing that I wouldn't be able to understand the video if it wasn't captioned, I asked Rhea if she knew whether there was a captioned copy available. It took about three weeks and a very determined librarian at UNET who made numerous phone calls to MPBN to locate a captioned version for me to borrow. The librarian mentioned in an email to Rhea that she felt sorry for anyone who had to request accommodations, if it was this complicated each time. I have to report it is often worse than this, and sometimes you spend a tremendous amount of energy only to not get the accommodation. One time I wanted to attend a seminar that was related to my work and was being sponsored by one of our Senator's offices. I called several weeks in advance to see if they could arrange for a listening system for me to use at the seminar. It took a number of phone calls to find the correct people to help me, and then more calls to explain what I needed, and then more phone calls to help them locate the proper equipment. The day came, and I arrived at the seminar early to meet with a staff member to try out the equipment and make sure it was in proper order. It seemed to work fine. I sat down to enjoy the seminar, turned on my listening system, and all I got was a loud buzz coming through the system. Apparently it was picking up interference from some of the other equipment that was being used for other purposes at the seminar, such as studio cameras, and projecting equipment. None of this equipment had been on when we ran our test, but it was too late to experiment and remedy the situation, so I just took off the equipment and listened with my eyes. Fortunately I was seated in a location where I could easily see all the speakers, and all was not lost. I explained afterwards to the staff member what had happened and he felt badly that it had not worked. But this is the kind of situation I can easily find myself in, and I think people with other disabilities can relate, you can expend a tremendous amount of energy to participate and still be left outside the gate. The thing that makes you continue to ask is the belief that somewhere down the road someone else will need accommodation and will get better service because you had been down that road before them. 2. Everyone is faced with challenges. You may not be able to escape your challenges, but there's no reason you can't be creative about how you solve them. During the time I was involved in SHHH, I was living alone in an apartment. I was unmarried, and I probably could have found a roommate, but I enjoyed the solitude and the challenge of learning to look after myself. It was a real growing time for me and having the freedom to be totally self-directed was something that I craved. However, living alone presents some unique challenges to a person who doesn't hear well. These came in the form of doorbells and phones, prowlers in the night, smoke alarms and alarm clocks - sounds that I could not hear reliably. Of course there are many gadgets on the market that can address those needs, but I found something that was more fun than any number of gadgets and gizmos. My ears have four feet! My hearing dog Kayla was about a year and a half old when she came to me to be my ears. She was a rescued dog and had already been trained to respond and alert me to many of the everyday sounds I can't hear well, such as the door knock, smoke alarm, alarm clock, and telephone. I went through some training too that I could use her to the best advantage and keep her training maintained. She and I have had 11 wonderful years together: What an incredible difference she made in my life! I am married now and she is almost 13 years old, but she is still a very big and much loved part of our family. I'm always glad for whatever burst of creativity made me consider being a hearing dog "mom". Sometimes it's easy to talk myself out of doing an activity when it takes so much effort to work things out so that I can participate. But it can be a lot of fun, too, to come up with new ways of doing things. This past semester in our Franco American Women's class we were required to interview someone and write about it. Other students were talking about how they were going to use a tape recorder to do their interview. Since I can't understand speech on recording devices, at first I thought the assignment sounded like a dead end for me. I wasn't sure how I was going to conduct an interview and take notes when I was trying to lip-read my subject. Then I had a bright idea. I went to the interview equipped with tape recorder, just like everyone else. I took no notes; I just listened and asked my questions. I had already recruited Ann Smith at the University's Onward program, which provides support services for disabled students. When I delivered the tape to her, she had hired a student to transcribe the entire tape for me. A week later I had a verbatim written record of my whole interview, which was an incredible blessing because I was able to use much of the interview in my subject's own words, adding much to the authenticity of the interview. (I do feel a little sorry for the student who did the transcribing, as it turned out that my interviewee was an incredibly fast talker and it was apparently a really tough transcription job!) 4. Problem solving is easier if you do it just one step at a time. This might sound like an obvious reality, but I was well into my 30's before I ever heard this concept verbalized. Up until then I think I looked at problems in a fatalistic way " this is too big to be fixed, there's nothing I can do to change it" It was such a relief when I learned that I could probably overcome most any challenge I faced, by tackling it in small manageable portions. When I started applying this rule to my hearing loss, it made a huge difference in my self-confidence. Being hard of hearing was no longer one big insurmountable problem, but a collection of smaller issues, most of which had ready solutions. 5. Set goals and pursue them Some 12 years ago a friend and I started a custom that we have followed every year since then. She lives in Massachusetts and every year she comes to Maine for a vacation. Each year we set aside sometime to sit down and write out goals for the coming year. These goals can fall into such categories as spiritual, physical, social, career, recreational, and so on. We might fill up a page or two of short, specific, and attainable goals. We make a copy of our goals to give to the other person, and then during the year we read the goals whenever we think of them. The next year when she comes back we sit down early in her visit and read the goals again, noting which ones we have attained and if not, why not. Then before she leaves for home, we start the process all over again with new goals for the coming year. One of the good things about this is that it helps us to verbalize what we want out of life, and makes us think about realistic ways to work on attaining what we want. It helps us to visualize where we want to be and it makes us a little accountable to someone else to stick to our goals. And it is also a great opportunity for each of us to affirm the other's aspirations. It is something that we both look forward to and benefit from. It really works, too! Since we have started this routine, I usually attain most of my goals for a given year, including getting married and continuing my education. I have always enjoyed learning and education is very important to me. Years ago I set my hopes on obtaining a Bachelor's degree, but my struggles with my hearing loss and depression and the need to support myself made it necessary to postpone that goal. Life is easier now and I'm no longer preoccupied with those earlier struggles; it is time to make the dream a reality. It is still slow going because I have a busy full-time career, but I am enjoying my studies now more than I ever have. Even though I can't hear as well now as I did the first time around in college, school is so much easier for me now. The Americans with Disabilities Act of 1990 has been a strong impetus for schools to provide the support services necessary to make education available to everyone. Where I once "got by" as best I could, I now have a whole range of services available to me at the University of Maine through the Onward Program. From note takers, to assistive listening systems, to advice and support for my professors, I have received an incredible amount of support from this program and its energetic director, Ann Smith. Technology, too, has added options that remove some of the typical barriers that I would frequently encounter. I can now email my professors and other University personnel, rather than relying on more difficult telephone communications. Classroom participation in a traditional setting has always been difficult, since I can't readily follow multiple speakers. With the development of on-line courses I have been on a level playing field with my classmates, able to fully participate in every aspect of the class with very few accommodations. I still encounter the occasional obstacle but it is remarkably refreshing to be able to stop focusing on "how am I going to hear" and immerse myself in the content and culture of the course I am taking. Corinne Rocheleau continues to inspire. She seems to have excelled at so many pursuits with apparent disregard for the obstacles she surely encountered. We are left to marvel at her own personal inner journey and her transition from disabled child to empowered and empowering woman. |