Editor’s Note: A cookie bite hearing loss is a less common, generally hereditary, mid-frequency loss. Thus named because of how it looks on the audiogram– like a cookie with a bite taken out of it. See audiogram below. Poor speech discrimination is characteristic of this type of hearing loss.
Cookie Bite Hearing loss
When my genetic “cookie bite” hearing loss worsened to the point I could no longer discriminate enough speech to get by, my mind conjured doors and windows closing. I think we who dwell between hearing and deaf can be gravely disadvantaged in the workplace. Never mind all the other places. I think we should band together somehow for employment. I’ve been a SayWhatClub member for months, and have read a depressing number of posts from members trying to cope with exhausting and inappropriate phone work or note taking for their jobs. I was recently on a medical leave because of the stress of not being able to tell what my boss was saying. I have no idea how successful self-help organizations are, but to me the best scenario is being our own bosses.
My job title is administrative assistant. I hate clerical work. The pay sucks. And because I can no longer tell what people are saying in job interviews, I’m worried about being stuck in my pink ghetto job forever. I’m only 50. My deafness feels like a nail in the coffin.
However, I didn’t end up in the ghetto in the first place because I’m deaf—I had a misspent and extended (yet entertaining) youth doing stuff like being in an all-girl punk band that never performed, because we couldn’t play instruments. Yet, we made appearances and trashed hotel rooms (then cleaned them up).
Child bride/child divorcee; infamous party hostess in 1980’s Vancouver, Canadian hillbilly squatting in a shack on a remote island, private investigator who never earned enough to pay rent and eat at the same time, yearlong guest in a Benedictine monastery doing manual labor for room and board etc. Then I was suddenly 40 and turned to office work to keep a roof over my head. Age narrows the scope of occupation possibilities. This is natural. Being a Bohemian hillbilly in a shack working at odd jobs is adorable at 26. At 50 it’s crazy lady, plus how would one finance the life in middle age?
Suitable training choices are narrowed by deafness. For example, one friend said, “you would have made a good nurse; why don’t you go back to school?” I thought, yes, that will go over well with the doctors when I have no idea what they are saying no matter how many hearing aids are coming out of my ears or FM assistive listening gadgets are hanging around my neck.
“…15 mg of haloperidol!” barked the emergency room doctor. Nurse Mary asked, “was that ONE FIVE or FIVE ZERO?” “GET ME SOMEONE WHO CAN HEAR!” screamed the doctor, glaring at Mary and pointing a bony finger at the door as the psychotic patient whirled like a dervish in the opposite direction heading down the hall towards the cafeteria.
LUigi the lovebird
My goal now is to learn how to make enough money as a working artist and leave the hard of hearing and clerical stress of the workplace behind. Meet Luigi the Lovebird… he’s the yellow guy shredding my audiogram.
Luigi shredding Mary’s audiogram.
Luigi’s mission and vocation is to shred paper into perfect strips. Don’t leave money or library books lying around is all I can say because Luigi is free range and home alone, without supervision, much of the time.
Because I have a strong creative drive, a few years ago I got the idea to make collages with the paper he cut with his beak and turn art prints of the originals into greeting cards in my home studio and aviary. Mostly aviary. I live inside an aviary basically.
We are the first generation of inter-species folk artists! Here is the link to a captioned video featuring Luigi shredding:
Luigi is so inspirational that a grade 6 art class who heard about him did their own shred collages! We visited the class and saw the student masterpieces. Luigi tried to shred one of them.
Mary and Luigi Visiting a Grade Six Art Class
If the horrible stress caused by poor speech discrimination in the workplace and the fear of being trapped in the pink ghetto makes me finally find a way to earn my living as a full time creative, then I will say thank God I was bitten with the cookie bite hearing loss at birth.
Note: Since this writing, Mary and Luigi have appeared on Dragons’ Den, a Canadian television reality show. The show is about aspiring entrepreneurs who pitch business ideas to a panel of venture capitalists in the hopes of securing business financing. You can see a captioned video of their appearance here:
Mary is a 50 year old free spirit, raised in Vancouver BC with 2 sisters who were also bitten before birth by this crazy genetic cookie. She wears hearing aids and, depending on the speaker, uses an FM Assistive Listening system in the workplace. As mentioned above, Mary currently lives inside a free range aviary with her muse Luigi and a second bird named Binky, in Victoria BC. She is happy to have found SWC, and we are happy to have her. To see more of Luigi’s shredding technique, go here:
Disclaimer: By providing links and/or references to other websites, the SayWhatCub in no way implies endorsement of the website content, operator or administrator, information, materials, products and/or services for sale.
4 thoughts on “Meet Mary McQueen and Luigi”
Nice to meet you! Thanks for the cc’d video, and you are invited to join CCAC 🙂 free membership too. Lauren (cookie bite) – more info on http://ccacaptioning.org
I loved this! It is interesting what she said about employment. Not long ago, I was having a discussion about employment with a friend who has a cochlear implant. It is really pretty dismal out there, and a lot of hh/deaf people do have to go into business for themselves despite laws that require equal employment opportunity. Most of us work with inadequate accommodations and our talents are under utilized as we try to carve out a niche in the office. I’m glad she found a creative outlet. Good for her!! 🙂
How fun! I hope the business is going well. I’d love to hear an after story. 🙂
Chelle, if you go to Mary and Luigi’s website, Hand and Beak, you can see what Mary and Luigi have been up to since their Dragons’ Den appearance. Just click on the “Dragons’ Den” page and you’ll find lots of pictures and videos there.