In My Head

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.

When I found out Amy Schumer was coming to Pittsburgh, I wondered how accessible it would be. I’d never attended a live comedian performance, for obvious reasons. I was introduced to Amy when she was on Last Comic Standing. Now she has her own Comedy Central show. Don’t watch if you’re easily offended!

Some comics talk really fast, but Amy didn’t strike me as being that type, which is why I entertained the notion of going to a show. To find out, I sent her a tweet: “Would love to go to your Pittsburgh show but would need to request captioning. How fast do you talk? :)”

Amy responded by tweeting me and someone on her team, with whom I ended up exchanging emails. I was asked if I had a local interpreter that I like to use; the show would cover the cost. I explained that I don’t sign and would prefer Computer Assisted Realtime Translation, or CART. The production company’s owner — who was responsible for lining up accommodations — reassured me that an interpreter would be there. I explained my needs again (hopefully busting stereotypes along the way. The owner said, “Good thing you said something. Let me figure this out.” The next thing I knew, he had arranged for wireless CART. He said I’d be using an iPad, eschewing the need for a table in front of me for a laptop (which I had previously used in this venue). The owner actually went above and beyond, giving me his cell phone and urging me to continue calling if it went to voice mail because it might be too hectic for him to hear.

I was so excited to attend this show. We showed up early to make sure the seats I’d been promised in the front row were indeed taken care of. Not only were there four folding chairs in the front row, but there were more in the middle because they weren’t sure where I’d prefer to sit. I opted for the closer seats, figuring I’d be able to lipread better. The captioner gave me the iPad so we could run a test. It worked fine, so we returned to the lobby while the captioner entered swear words into her library.

First, we were treated to a preview of the next season of Inside Amy Schumer. Even though it’s captioned on TV, there were no captions on screen, and the captioner was having difficulty keeping up with the rapid fire clips.

Next, Amy had an opener because apparently comedy shows are similar to rock concerts. Of course, this comedian spoke very fast, making it hard on the captioner. Additionally, the captions weren’t coming through in real time. They came in bunches and the connection kept going out. It was the worst feeling to be the only one not laughing. I didn’t want people thinking it was because I lacked a sense of humor, so I made gestures to the iPad and looked alternately frustrated and angry. My husband told me that I looked offended. Um, not what I was going for!

Just before Amy came on, we snuck off to the closest side door to our seats, which was also closer to the captioner (who was behind curtains on the side of the stage). We thought this might help with the communication drop outs. The captions improved, but there were still problems. We spent the remainder of the show standing up. I almost left when we had someone check with the captioner, who had no good suggestions. Being unable to see Amy’s face up close precluded me from picking up on much of her comedy. I was already SOL when it came to her voice.

Because of the distance and the captioning problems, I just couldn’t get into the show. At one point, Amy actually pointed to the empty seats we had vacated, and asked what happened to the people who were sitting there. She went on a short riff about it. But maybe if we had stayed in those seats, she would have picked on us like she did the other audience members in the front row. We might have dodged a bullet!

Perhaps the problem was the captioner’s software, but our working theory is that there was something interfering with the wireless signal. The sound system wasn’t turned on when we did our first check, and the comedians were using a wireless microphone. This makes the most sense to me, given the issues and the fact that I’ve had successful wired captioning in this building.

It was an experiment worth trying. Now I’m going to be paranoid about wireless captioning (which IS easier). What does this mean for the future, when more wireless technology will come into play?

In the meantime, I’ll have to settle for watching comedians on TV. But if Jerry Seinfeld is ever in town, let me know. I might be tempted to try again…