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KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic.  There are two parts to each diary.  First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.

Today's guest diarist is slinkerwink.

My little cousin recently interviewed me about what it is like to be deaf for her class project. They were doing interviews of people with various disabilities to see what their perspective on the world and their local community were like.

I had a hard time answering her questions. It made me think about my own experiences in being deaf, the kind of obstacles I have to deal with, and the humor I sometimes find in my deafness. Below are the questions that my cousin asked me, and my answers to her:

Can you give me a quick background of yourself? (full name, date of birth, college, jobs, etc.)

My name is Noelle Cigarroa Bell, and I’m twenty-seven years old. I am a 2005 graduate of Smith College, and my professional career has been very highly political thus far. I first started out by working for Representative Henry Cuellar in 2006 as a legislative correspondent in handling mail correspondence, and then was promoted to legislative assistant. As a legislative assistant, I attended congressional hearings, met with community stakeholders, handled specific constituent cases, wrote legislation, and communicated regularly with federal agencies by phone relay (which is a special phone system for the Deaf).

After working on Capitol Hill, I moved to Texas and worked with the Texas Legislative Council as a sessional bill analyst for the 81st Legislature. I wrote over 700 bill analyses for several House committees on a wide variety of issues such as insurance, civil rights, and government.

Since leaving the Texas Legislative Council last year, I’ve been working with political action committees as a new media advocate on health care reform. I am currently the new media strategist for Progressive Congress Action Fund, which is a 501( c )4 political action committee. We are presently lobbying Congress on health reform and other issues, and mostly recently finished a coalition project with MoveOn.org, Health Care For America Now! (HCAN), and unions to do a million phone calls on February 24th to Congress in telling them to finish their job on health reform. The campaign was a major success, and I am now directing the Countdown To Health Reform project, which you can see on www.countdowntohealthreform.org.

Have people ever viewed you differently, either positively or negatively, during your education in elementary, middle, high school, and/or college because you are deaf?

I’d say it’s been a mixture of having my deafness viewed positively and    negatively throughout my education. As I attended a Catholic deaf school for elementary education, my deafness was dealt with very positively by professionals such as speech therapists, audiologists, and teachers who were trained in how to deal with my particular deafness. When I got the cochlear implant at age 7 in 1989, it was a new challenge for my teachers because I was one of the few deaf children back then to have a cochlear implant. It meant that I had to go through a more intensive therapy schedule which required about five hours of speech therapy a week, not including the additional hours of speech therapy with my mother at home.

Most of my friends back in deaf school didn’t have the cochlear implant, but I was just another deaf kid to them. We really didn’t think of ourselves as different because we went to school together, had parties together, and slept over at each others' houses. It was our world, and it was rather comforting because in having another deaf friend, it meant that you could share parts of your deafness with them and they’d understand what it meant to face similar situations.  It’s been a very positive experience for me in having orally deaf friends.

Also, when I mainstreamed from my deaf school where I had my own deaf peers, I faced difficulty in making friends with my hearing classmates at my new private school for girls. They already had their own cliques, and wasn’t willing to welcome a newcomer, especially one that was deaf. I was constantly made fun of, had my speech mocked, and was the target of bullying by this group of girls led by a girl who had a birth defect that led to her misshapen arms and legs. I think I was singled out by that ringleader because I had everything except for my deafness. I could run, jump, reach out, and do all kinds of things that she couldn’t do because of her physical disability.  She teased me because she was jealous, and I found that ironic that a disabled girl would single out another disabled girl and bully her.

Tired of having to deal with the bullying in the all-girls private school, I transferred to a co-ed private high school where I started to blossom. I made friends more easily, and no one made fun of my deafness or the way I spoke. I found this to be refreshing. However, my new high school did not have the kind of academics I wanted, so I again transferred from this small private school where I was the only girl in the entire sophomore class of four boys to a huge public high school of over 3,000 students.

I had so much fun in public high school. I took AP classes, and was involved in extracurricular activities such as the school newspaper and the school yearbook. I made more friends than I ever did in the prior private high school and in the all-girls middle school. I still remain friends with many of my old high school classmates. I think the diversity in the public high school system helped prepare my classmates in learning how to deal with all kinds of people, including different kinds of disabilities.

Thus having been ‘schooled’ in how to cope in a large student body, it wasn’t that initially hard for me to adjust to college life. I went to Smith College, which was one of the top women's colleges in the entire nation, and is consistently in the list of the top twenty liberal arts colleges. For the first time, I had accommodations in college, which was Communication Access RealTime Translation (CART). This form of accommodation allowed me to have almost all of my classes captioned with the assistance of a laptop, the microphone lapel on my professor which allowed the captionist in another location (say, Nevada or Colorado), to caption my classes verbatim. I remember having students come up to me after class and begging me for copies of my notes.  In small classes with about ten students or less, I didn’t need the CART system, so I was able to interact more, and didn’t stand out prominently as I did in my larger classes with the CART system.  College was one of the best experiences of my life.

Have people ever viewed you differently, either positively or negatively, during a job interview because you are deaf?

I’m reminded of my deafness whenever I go to an interview with a prospective employer. I always address my deafness upfront, and I've listed what I've done in my political career---meeting with large groups of people, listening to them, attending congressional hearings, scheduling meetings and flight arrangements, and phoning different federal offices by relay. This almost always reassures the prospective employer, and I've been blessed to be hired by those who saw past my deafness, and didn't feel constrained by the thought of a deaf employee.

However, I've met a couple of prospective employers in the past year, such as a chief of staff for a prominent Texas state representative who asked me outright in violation of employment laws about my deafness, and she said she didn't think I could do very well in the office, given the fast pace of it.

I was surprised when she said that because I'd just come straight from a congressional office in D.C. where EVERYTHING was fast-paced, and we kept up with everything via e-mail, IMs, and staff meetings with long hours into the late night. I mentioned this to her, but she still was afraid. It made me think about the state Representative I'd wanted to work for, and whether the attitude of her chief of staff reflected HER own attitude.

I've also been turned down after an interview right away because of my deafness with the employer saying he just couldn't afford to accommodate my deafness. Yes, I still get nervous every time I send off an employment application because I wonder how that employer is going to react to my deafness. It takes courage to send off that application, even more courage to go in for an interview, and to answer the questions from that employer, hoping that he or she will see my best attributes, what I can bring to the job, and instead of focusing solely on my deafness.

Has being deaf affected your daily life at all? If so, how?

My deafness does affect every single part of my life. For instance, my husband envies me because I can sleep very peacefully through anything (a tornado, thunderstorm, airplanes flying overhead, motorcycles, people shouting at each other upstairs) and it’s because I’ve taken off my implant before I sleep. In taking off my implant, I am profoundly deaf, and can’t hear a single thing. I often leave off my implant whenever I’m doing household errands like vacuuming and running the dishwasher. Also, in driving, I have to be very careful of what’s on the road, so I pay more attention than most hearing drivers do. Deaf drivers constantly rank as better drivers because they’re not distracted by stimuli such as radio, cellphones, and people talking in the background.

Most people that I meet in my daily life usually think I’m from a foreign country because of my deaf accent. I often get asked if I’m from Yugoslavia or from the Balkans. Apparently my deaf accent is Eastern European. Who knew? I have to repeat myself a few times for those who can’t even discern accents at all, and I find this frustrating.  However, for those who are a part of my family and my friends---they sometimes forget that I’m deaf. It’s because they’re used to my speech, and they don’t see me as that deaf person. They see me as me. Only if everyone could see each other in that way.

Whenever I go out, I usually prefer being in a small group because it’s easier for me to follow the conversation that way. In a large group, especially in a noisy restaurant environment, my head whips back and forth so much in trying to follow the conversation and figuring out who’s speaking next, and taking care not to speak out of turn which is difficult because it’s hard to time the conversation out. I almost always speak about something totally unrelated when the group has moved onto the next conversational topic. It’s a bit embarrassing. I usually rely on my husband, a close friend, or my mother to let me know the overall gist of the conversation so I’m not left out at the dinner table.

Have you ever traveled outside of Texas, or even Austin, and encountered people who treat you differently than they would if you had not been deaf?

In having traveled to Europe back in 2005, it was very interesting seeing the difference between how I was treated abroad and back in America. In France, they allow the deaf to see museums for free, so all I had to say was “Je’ suis sourd,” and I’d get into the Louvre and into the Musee d’Orsay for free. Other than that, my deafness wasn’t remarked upon, and I wasn’t treated differently other than being noticed as an American tourist.  I did have fun traveling abroad, and whenever I wasn’t understood, all I had to do was write down a catchphrase in French, and I’d be helped out.

Have you used your experience to help other disabled people?

Yes, I have used my experience to help other deaf people. For instance, I’ve worked to expand accessibility at my workplace by teaching my employers how to accommodate my disability, and showing my co-workers how to deal with me. For instance, my first employer, Congressman Henry Cuellar, didn’t know how to deal with deaf relay callers, so I established protocol within the office on how to handle relay calls, and my former boss still uses that protocol to this day. In my current work, I strive to make my online videos captioned, and I always provide a transcript so that deaf people can follow what’s going on in the videos about health reform and other issues.

Have you ever experienced discrimination within the deaf community because you lip-read and speak, but don't sign?

I have experienced discrimination within the Deaf community because I speak, have the cochlear implant, and do not sign. The perspective of the Deaf community is that every deaf person should know sign language. I don’t have that perspective. I believe that every deaf individual should use the communication mode that he or she is most comfortable with, whether it be oral speech, Signed Exact English, total communication, or cued speech.

Even after I'd finished answering the questions, I felt like I'd only given my cousin a brief run-down through what it's like to be deaf. I didn't tell her about what it really was like to be deaf without the cochlear implant, or what it was like having to wear a giant body-worn hearing device as you can see in the picture below.
 title=
It was big, bulky, and my mother had to constantly remind me not to run around with it. At three years of age, I found this hearing device to be constricting, but it was needed because I couldn't hear anything else without it. When it was off, there was no sound. With it on, I could hear faint smidgens of sound. My speech was barely comprehensible at this point, and I could only say a few words clearly.

I remember being frustrated all the time, wanting to communicate, and not being able to do so. I'd be relieved when my parents could understand me, and I'd go into a fit when other people couldn't. I didn't understand why if my parents could understand me, that strangers couldn't, and it never made sense to me.  

All that changed when I got the cochlear implant in 1989 when I was seven years old. I remember going to Houston Ear Research, sitting in the testing room, having my hearing checked, and playing with the audiologists. I was in Houston for about three weeks before surgery. At that point in 1989, very few deaf children were implanted with the cochlear implant. Today, I am the first generation of adults who have grown up with the cochlear implant for twenty years.

 title=

This is what the outcome of the cochlear implant surgery looked like back in 1989. It wasn't as simple as today's cochlear implant operation which is now an outpatient surgery. I stayed in the hospital for about a week while the doctors checked to make sure everything was okay. I recall that I wasn't allowed to take off the bandage on my head for about a month or two. My memory on this is rather vague, but I do remember telling people that I was in a car accident. They'd look mortified, apologize to my mother (who had no idea why people were apologizing to her), and walk away.

I went back to Houston for the activation of the implant.

That was when my life changed. I sat in the testing room, wondering what was going to happen, and then I heard a succession of beeps, ranging from a very soft sound to a very loud sound. I raised my hand each time I heard something. Then the door opened, and I was taken to a room, where the audiologist hooked up the cochlear implant to her computer to begin the mapping process. She tested me again through the beeps, asking me to tell her if it was too soft or too loud. Then she turned off the computer and turned on the implant.

"Can you hear me?" Her voice sounded so strange, rather high-pitched, and I looked over to my mother. She was crying.

I nodded, and then my mother started to talk. I heard her voice very clearly and loudly. I couldn't ever recall hearing her like this.

I could finally communicate. I was able to hear myself. I could correct myself, hear what the speech therapist was saying, and my language development literally exploded in the weeks ahead. I was talking about the sounds I'd heard, and I kept on asking my mother what each sound was.

I'd heard the toilet flushing, and asked her if that was the toilet. I heard birds chirping, and asked what that was. I heard the sound of a dog barking in the distance, and turned to ask my mother. She was surprised that I could hear that far off.

"That's a dog who lives a block away from us. Can you hear that far, mijita?"

I smiled. I loved my cochlear implant. I was so inquisitive about everything I heard. I even loved hearing the tapping of pencils against desks at my deaf school. I didn't like hearing my little brother whine though. It was such an annoying sound. I learned to classify sounds by moods, and this came in very handy in discerning whether my mother was pleased or upset by the tone of her voice. If I was in the next room, and she called out my full name in a very angry voice, I knew not to come.

Hearing the world never gets old for me. I still love to hear, and I don't like it when the batteries in my cochlear implant dies, leaving me in that silence. I worry about the internal implant in my head dying, and having to go through another cochlear implant surgery.

I've written about it here and other blog articles on the deaf community at DeafDC and the National Association for the Deaf:

What Health Care Reform Means For The Deaf
A Beginner's Guide To Grassroots Lobbying
What's The Latest With Internet Captioning

I hope you've found my story and the interview to be helpful. I'll be here in the comments.

Originally posted to KosAbility on Sun Apr 04, 2010 at 01:59 PM PDT.

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