A Hearing Loss & Late Deafened Blog

Posts Tagged ‘Caption’

Meet Mary McQueen and Luigi

In audiogram, Deafness, Hearing aids, Hearing Loss, internet videos on April 9, 2013 at 4:12 am

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.  

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 SWC 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 achieved 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 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.

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 and audiogram one

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:

http://www.youtube.com/watch?feature=player_detailpage&v=q_elaacrIXk

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.

 luigi visits grade six class (1280x959)

 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 in which aspiring entrepreneurs 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: 

http://www.youtube.com/watch?v=6lGQ5SLTRpI

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.

Why Not? by Michele Linder

In Accommodations for Deaf, captions, Closed Captioning, Deafness, Disability Rights, Hearing Loss, late deafened, Lip Reading on March 14, 2013 at 11:14 am

The question on the Collaborative for Communication Access via Captioning (CCAC) blog is, “Do You Ask?  For Captioning or CART of course?”, and “If not, why not?”

For me, the answer to “Why not?” is more because I’m not in the habit of it. My daughter graduated from nursing school last year and I intended to ask for CART, but time passed and I didn’t think of it again until I arrived at the graduation and realized I wasn’t going to be able to hear. It was a real “duh” moment and I scrambled to get a seat close enough to the podium to read lips. I need to work on putting my need to hear and understand first and make it a habit. It’s the same with using the CapTel or CaptionCall phone, I’ve not been able to use the phone for decades, so I’m out of the habit and I forget that I can use the phone again, though these phones are not always great. It’s the same with going to the movies… The last movie I went to and understood without captions was probably 20 years ago. I just don’t think of going to movies anymore. Sigh…

I think many of us with hearing loss start out being diffident and self-effacing. We think of everyone else above ourselves and focus our attention on how our hearing loss might inconvenience others, so we don’t ask. I’m guilty of this myself, but I’m happy to say I got over it many years ago. When I realized I was being a bit arrogant by pretending to know what would inconvenience others, I decided to live a life with more honesty. It is possible to be TOO nice.

Think of it this way… when you don’t have CART or captioning, you can’t participate. Therefore, you can’t contribute, and often that means you can’t compete with others who have no barriers. Should we stop participating out of consideration for others? I don’t think so, because I know I have a lot to offer, and I don’t want my deafness to exclude me from things that I enjoy and am interested in. Besides, there is no harm in asking.

When we ask for accommodation, hopefully we aren’t coming across as if we think we are owed something, but there is nothing wrong with asking, and there also is nothing wrong with asking for a reason if the response to our request is “No”. Many times in my advocacy for captioning I’m told that ‘cost’ is an overriding factor, and that bothers me. I realize accommodation isn’t free, but there’s always a way to fund accessibility, and I consider it short-sighted for someone to say “We can’t provide captions because it costs too much and we don’t have the funds.” Look beyond the cost, because if you assess what you’re getting for your money, then captioning is a true bargain.

We need to focus on the humanity of the issue. I can guarantee you that any hearing person of today who wakes up tomorrow to find themselves deaf would want more than anything to be able to continue in their independence and vitality in life. In my opinion, the focus on ‘cost’ is all wrong, so I’ve decided that when I advocate for what I need, I should be focusing on the benefits of investing in CART or captions as way to counter those arguing against accessibility due to a silly little thing such as money.

In a recent advocacy effort I stated: “Quality captioning enables millions to remain independent and vital in a world that too easily justifies excluding them by placing more value on the monetary aspect of what a thing costs, rather than on what providing it accomplishes.”

What is your ability to contribute, compete, and participate worth?

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