Author: lisa

Our windows (over 42 of them!) have been cleaned, the screens are in, the cat is trying to figure out which sill she prefers, and the fresh air is filled with sounds of birds and… wait? What was that? Whining, crying, and bickering? Those don’t fit with this lovely tableau!

School ended over three days ago. On the second day, my son dared to utter the two most despised words in this house: “I’m bored!” There’s only so much screen time I’ll allow the kids. Despite the many toys and books they have, each summer I remind them that I didn’t have technology when I was a kid. I used *gasp* my imagination!

I understand wanting to revel in homework-free days without an alarm clock. Except my kids don’t have the ability to sleep in. Apparently they also lack the ability to process a parental request. After telling my daughter several times to clean up her stuff from the kitchen shelves, she gave me an eye roll and a “Stop, Mom!”

Maybe there’s hope. She just informed me that she’s going to change, do her chores, and then maybe she’ll tackle the shelves… Here’s hoping she does, and that we all survive the summer!

I had a routine medical procedure today, which was educational for everyone involved.

The first form I filled out had a box for special needs, so that’s where I mentioned my deafness and lipreading ability. Despite this, the nurse who came to get me in the waiting room hadn’t looked at the sheet and called my name twice. When Aaron and I got her attention and explained, she looked at him and said, “I’m going to take her back now.”

After that, I noticed a post-it on my folder about my being a deaf lipreader – perfect.

When the anesthesiologist came to talk to me, I had trouble understanding her. I looked at her name and realized she had an accent. Except she was wondering about mine. “How long have you had that nasally twang?” she asked me. I explained it was because of my deafness, but she didn’t seem convinced. She asked about my “COCK-leer implant,” which I left in my locker, while I kept my hearing aid. “You don’t have to say you’re deaf, because you’re wearing the hearing aid and you’re hearing,” she said or something like it. “But I am deaf!” I said.

In the private room for the procedure, one of the nurses introduced herself. Another nurse alerted her to my deafness, so she repeated her words, except she over-enunciated so I actually had trouble understanding her.

When it was all over, I kept asking Aaron the same questions, but that was temporary amnesia due to the twilight anesthesia. As a test, he told me to remember the color “magenta,” and then a few minutes later, asked what color he had picked. I got it right. ‘Course that didn’t stop me from asking a question and then adding, “I asked that already, didn’t I?”

So, to recap, here’s today’s PSA:

Read all notes, particularly the bright yellow one on top.

Address me directly.

If you’re wondering about my accent or why I sound nasal, believe me when I tell you it’s because I’m deaf.

Wearing a CI or HA doesn’t mean I’m now hearing. It just means I’m hearing better.

Cochlear implant is NOT pronounced COCK-leer, but coh-cleer.

Don’t over-enunciate or talk louder. That will only make it harder for me to understand you and make you look foolish.

Thank you!

Last night, I was lucky enough to attend Ann Patchett‘s talk as part of the Pittsburgh Arts & Lectures series. I sat at the end of the front row, with CART in front of me. Ann bypassed the podium and spoke standing on a rug in the middle of the stage. She was a wonderful extemporaneous speaker who had the audience enthralled and laughing throughout.

Perhaps more than her books, what Ann is most proud of is opening an independent bookstore in her hometown of Nashville. Parnassus Books filled a void when the big booksellers left. But more than that, it’s brought the community together.

Addressing the theater, Ann said, “You’re here because you’re all readers.” When we read a book we love, we don’t throw it away. We want to share it with others, which may be one of the best things about reading. Ann isn’t shy about telling people she disapproves of the books they’re holding. She doesn’t push books on people to make a buck, but to make sure they’re reading the right books.

Ann says Barnes & Noble is on its way out. Unfortunately, the main independent bookstore in Pittsburgh is over the river and through bridges and tunnels. Needless to say, we could use more independent bookstores. Afterward the talk, my friend and fellow book club member half jokingly said our book club should open one. Our book club’s name would work for the store, if you ask me: Booksburgh. Is that not perfect?!

As another friend and book club member said, “Now we just need a famous author to buy in!”

Have you seen this viral video of an English woman hearing with a cochlear implant for the first time? As a deaf journalist, I’ve been upset with the media’s characterization of the story. Note that I specified she’s hearing with a cochlear implant for the first time. She was born profoundly deaf (like me), and has been wearing hearing aids since she was two. Granted, the sound is different and much improved with a CI, but it is simply inaccurate to say that she’s hearing sound for the first time. Leave it to the media to over dramatize things and perpetuate stereotypes!

A speaking deaf advocate sent me this link today, in which a CODA (Child of Deaf Adults) and activist in the Deaf Community lists her own reasons for being upset with this video. In doing so, she perfectly illustrates a big problem I have with such activists: They buy into the propaganda and spread misinformation.

Lilit Marcus says CIs primarily work in two situations: When a child who is born deaf gets it before 5 years old or for a deaf adult who was born hearing. The eligibility rules for CIs are constantly changing as the technology improves. There is an involved process to determine candidacy. Yes, CIs work better in adults who were born hearing or in children as young as possible, but that doesn’t mean they don’t work for others as well.

Marcus also says many doctors advise their patients not to leave the house for several weeks after getting a CI so they can get used to new but common noises. I haven’t heard of this before! Generally, people are encouraged to explore their new world. If it gets too overwhelming, we can simply turn down the volume or *gasp* take the implant off.

Deaf Culturalists think that those of us who lipread, listen, and speak view deafness as something that needs to be fixed. This couldn’t be further from the truth. I was born deaf. I will always be deaf. Even though I wear a CI and digital hearing aid, they don’t make me hearing. They help me hear better and allow me to be independent. When I take them off, I’m still deaf.

As for Joanne Milne’s video, she chose to share it with the world. Because she has Usher’s Syndrome, she’s losing her sight. Who can fault her for wanting to hear better so she doesn’t completely lose two of her senses? I’m all for the public learning about this wonderful technology and realizing that deaf people can indeed listen and speak. I hope this kind of information goes viral, not the crap the media and Deaf activists like to spew.

Last night, I saw my first captioned play that wasn’t a musical. It was my first time at the Pittsburgh City Theatre, which was accommodating enough to add a second open captioned performance upon request. There’s even a Director of Education & Accessibility on staff.

My friend Laura — who I’ve known for years through the Alexander Graham Bell Association for the Deaf and Hard of Hearing — drove in from Cleveland to see the play with me. Our seats in row EE were perfect, though we needn’t have worried as it’s an intimate theatre. The LED display for captions was hanging from the ceiling to the left of the stage. We could see the words fine, but the placement was less than optimal, because it wasn’t in the same line of sight as the action on stage. We could only read the words or watch the actors, not both. As a result, it was hard to enjoy and really benefit from the performances. The dialogue was also faster than normal, which didn’t help.

My friend Rachel (my oldest AG Bell friend) was on the TRIBES Outreach Committee for the Steppenwolf Theatre in Chicago and is also an attorney with Equip for Equality. She says there needs to be more of a push to educate set designers on incorporating captioning into set design. It’s an issue on which they have yet to catch up. We were wondering if set designers are employees or contractors, and if they change for each play. Something to research…

Interestingly, there was a screen on the back stage wall that showed “subtitles” for the audience whenever characters used sign language. That’s right — this was a play with deaf themes, which is why it was interesting to see it with someone who also has a speaking deaf background. The story centers around Billy, who is deaf, and his dysfunctional family. He can’t follow their arguments and conversations, and when he asks what they’re about, he’s told the all too infuriating, “Nothing.” When he meets Sylvia, who was born hearing but is going deaf and has deaf parents, he’s introduced to the world of sign.

I have mixed feelings about the play. While I could relate to some of it, I’m bothered by misconceptions that audience members will now have. Billy is passive; he never tells his family that he’s sick of being left out, or that telling him “Nothing” isn’t good enough. Some families are definitely like his, but there are also many families (like mine!) that are inclusive. He also gets a job for the first time, but it’s lipreading tapes for cases. As a speaking deaf adult, Billy can get a job more easily than someone who relies on sign language to communicate. The play sends the wrong message in general about people with disabilities. And of course, when Billy gets his job, he makes up much of the translation and gets investigated!

The program has an article by the dramaturg at the Philadelphia Theatre Company, City Theatre’s co-producer of Tribes. She refers to the “Alexander Graham Bell Academy for Listening and Spoken Language.” Um, try that again. She talks about Deaf Culture and oralism, and quotes a Gallaudet University professor as saying, “…without access to a complete linguistic code during early development, it is difficult for deaf and hard of hearing children’s language acquisition to parallel that of hearing children. Fortunately, the language areas of the brain have no preference for language input.” Not only is this misleading, but it doesn’t mention the importance of the language window. Because of it, you can always learn sign later, but you can’t always learn how to talk.

I give a lot of credit to the actors, as they had to learn the (often rapid-fire paced) dialogue in addition to sign language and a British accent. For the deaf actor who played Billy, I’m sure this was especially challenging. Sylvia’s sign language was impressive in its naturalness.

It was interesting watching the sign language interpreters, because they were essentially giving a second performance. I personally would rather watch the actors and not see a performance secondhand – especially if I’m at the theatre! To each tribe his own.