The Real Deal 3: Information and Enrichment

Monday morning. No alarms! Still, I awake at 6:30.

I hop from station to station initially, but decide to listen mostly to the Mark and Mercedes Morning show on Mix 94.1. It’s at least local! They keep advertising some sort of “eat and greet” where you get to chat with the Goo Goo Dolls at a pool party put on by the station. It sounds like fun stuff. They also note, with a combination of happiness and bewilderment over the surrounding hype, that Las Vegas will soon have an Ikea furniture store. Their most interesting discussion revolves around the question of whether you can be in love with two people at the same time.

I have arranged to meet yet another Twitter follower whom I hadn’t met previously for breakfast at 9:15. She had indicated that we might leave the hotel in search of quieter environs, but when we start to look around inside we discover that Wicked Vicky’s (I keep wanting to call that place either “Wicky Vicky’s,” or “Wicked Vicked”) is actually relatively empty.

This will give us more time to sit,” she reasons. It ends up being her, one of the exhibitors whom she assists, whom I also have gotten to know well online, and the woman from Indy, whom we suck in as she floats by. It is again all in the randomness of convention.

For breakfast, I order a Wicked Vicky’s Stack, which consists of delicious French toast, sausage patties, and cheese eggs. I also have two cups of nice, hot coffee.

To make talking easier, the person I’d come to meet asks the server if someone will turn the music, which is kind of loud, down. They just plain turn it off. I often get nervous about requesting such things, but must admit that I could hear a lot better without it. I enjoy the chatter as my belly fills.

At this point, I have little to do until approximately 1:45. So I head back up to my room, where I read, fade into and out of sleep, and just enjoy vacating. Until..

“Housekeeping.” Oops? I’m about to be kicked out of here! Well ok, I doubt it would’ve been that serious. Still, I opt to get out of their way and let them work, realizing only after I’m on the elevator that I have forgotten my bag. Better hope the hearing aid batteries hold up.

I make my way into the lobby and towards the convention center so I can see about attending the workshop on deafblindness and employment. I enter the room, where I am told they cannot scan credit cards so I must head back out to registration to purchase a ticket. The line for that isn’t terribly long, and in about 6 minutes I am seated again and ready for the presentation.

Some technical issues pop up, and while they try to fix them the main presentor, who is totally deafblind, goes around to meet those in attendance. She takes my hand, and another voice says “Hello, nice to meet you. Where are you from?”

“Me?” I reply just to be sure it is she who is speaking to me. I believe she makes a sound to try and confirm that for me, even as the interpreter speaks for her.

Once on stage, she asks us why we think she wants to meet us in that way, making contact while doing so. It is an important, and really the only, way she has to physically connect to a person, and insodoing she gleans other information from the person as well. She also has an environmental interpreter who lets her know how the audience is reacting: are people falling to sleep, cell phones ringing, other conversations going on, etc. As a blind person, I don’t even know some of that kind of information as I present. It is fascinating.

I think that kind of interpreting takes quite a bit of work though, as the voices switch off three times during the talk. Another individual, whom I think is blind and hears ok, speaks as well. There may have also been a third, sighted/hearing person up there.

They highlight the work being done at the Seattle Lighthouse for the Blind in employing those who are deafblind. That location hires interpreters to allow employees to talk with supervisors and co-workers, as well as working with those groups of people to teach at least some rudimentary signs to facilitate basic communication. They also use normal pagers to alert deafblind people of breaks, dismissal time, and emergencies through a series of different vibrations.

The crux of their talk is that we must understand how privilege, power and independence work together to make possible or shut someone out of a chance to use his/her skills in a meaningful way. When possible, try to stay away from words like “help” and instead say “support(s)” as it can indicate a more active role by the deafblind individual. In my opinion, some of this is a question of what a person means when using certain wording, but I do agree that it should all be considered.

After this event concludes, hunger has again gotten the best of me. I order a too expensive ham and cheese sandwich and Mountain Dew from the Java Stop, though if I had waited another hour or so I would have been fed. It is 4:45 now, and the Vanda Pharmeceuticals reception starts at 5:45. But whatever. Without my bag, and thus my headphones, I am forced to press the iPhone against my head as I check email and messages over the roaring crowd while I chomp.

Next to the Vanda reception, where I have at least five different kinds of cheese, crackers, grapes, shrimp, and a spring roll. They give us about 15 minutes to work on our plates before beginning.

Vanda is a relatively small drug company that has worked for several years to develop a drug, now called hetlioz and previously Tacemelteon, to help totally blind individuals combat non-24-hour Sleep/Wake Disorder, otherwise known as Non-24. After a fairly intensive study, this drug has just gained FDA approval for that narrow subset of the population. A doctor speaking on behalf of the company gives a comprehensive presentation covering what is known about the drug, reasons for using it, and possible side effects.

The drug must be taken continuously and at the same time once started. If one were paying out of pocket it would cost a considerable amount, however they continue with their campaign to get more insurance carriers to cover it. To start, people will receive refills from a program called Hetlioz Solutions, but they hope to bring large pharmacies like Walgreens into the mix eventually.

With regards to side effects, none are particularly dangerous. The most common, I suppose not surprisingly with a sleep medication, is drowsiness. There could also be liver problems, so you have to be aware of that if your liver is already compromised in some way. Less effective in those at or over 65. Always seek medical advice before even starting to take something like this anyway, as possible drug interactions and/or the presence of other disorders may need to be taken into account.

After a moving personal testimony about how this drug has helped one woman come back to herself, they take questions. The most notable comment, and it can apply to some other companies as well, is that the ads promoting this treatment tend to portray blindness in a very negative light. We need to find a way to get the message across without making it sound as if we are all sad sacks who don’t know how to cope.

Overall though, I found it to be an informative talk. Will I take it? I’m not sure, as I’m a bit wary of depending on anything continuously like that. And while regular sleep would be good, my life is such that it would be impractical for me to go to bed at the same time absolutely every night. I don’t know, we’ll see.

At this point, it is 7:53. With the assistance of one of the presentors, I make a mad dash for the Suite Tower elevators as I am to participate in a Braille study at 8 PM. Once onto the correct floor, we already hear those folks calling my name, and so I slide in.

The guy who running the study seems to be totally blind, and has a sighted assistant who makes sure that things are in the right place. They fit my right index finger, the reading finger, with a small camera that will record my motion. Something is also strapped to my wrist, I guess more for stability than anything else. Before I start each test, the cameras must be calibrated to the beginning and end of the Braille line.

First, I am given a small hard copy Braille book to read. I take it in as quickly as I can, then am asked a series of questions about what I’ve just learned. I find it hard to read with any kind of speed and remember exactly what I’ve read. Man! Kinda makes me worry about whether I have some kind of issues with this period, and if it didn’t make my education not go as smoothly as it could have, especially in grad school.

The second, shorter passage is done via a refreshable Braille display, an electronic device that can be connected to computers or mobile devices and made to render the text in Braille. I find this a lot easier, and really want one of those HandyTech displays! This particular display is 40 cells, which causes me to sail right along. I still have some issues remembering all of what I have read, though.

“I feel like a lab rad!” I quip.

The final part makes me feel most like a lab rat, as I had to try to decide if something was a word by jumping over two extraneous Braille cells being placed in the middle. This is a real challenge, because my brain needs the continuity. I note my decision by pressing pedals with my feet, right for yes it is a word and no for it isn’t.

“Am I going to receive some sort of electric shock for getting it wrong?” I ask while chuckling.

“Nah, I’d be in jail if I did that,” he replies.

I can’t help grunting and moaning when I mash a pedal and realize a second later that I have made the wrong decision. It is all rather amusing. I think mostly he wants to get a sense of how and why we make mistakes when reading that might help in coming up with methods of increasing our effectiveness with the Braille medium. Meanwhile, as I walk back to the elevators I shake my head and question my intelligence.

I wrap this day in the Banana Leaf Café, an Asian fusion (whatever that means) restaurant at the hotel. I grab a delicious chocolate cake, and get my iPhone screen all sticky as I pound out messages while eating. Then it’s up to my room for more reading, and off to bed.

4 Responses to The Real Deal 3: Information and Enrichment

  1. John, I’m glad you had a great time at the conference. When we meet up again we have to share what we learned at our respective conferences. Sounds so exciting all of the new technology to make things better for those with low vision and for those that are blind. Enjoy the weekend!

  2. John, you are an amazing blog writer. I look forward to your descriptive analysis of your daily experiences as a blind man living in an unfortunately very discriminating sighted world. You are truly an inspiration to the blindness community with your positive attitude. You have a wonderful sense of humor and spirit that has my admiration, as a sibling with two brothers who are blind, hearing and intellectually impaired with Norries and a partner with Norries. I am still waiting for you to write and publish a book.
    Paula J Manfre
    NDA Board Member

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