by Mark Dunning
We're heading in to summer so the posts will be more spaced out. Here’s a quick one for you. Julia and I recently attended our first deafblind party and I thought I’d tell you about it.
Let me stop there and put this in a larger context. First, I’m a little embarrassed that this is a big deal. I don’t want it to sound like I went to the zoo. These were real people, after all, and I have a great respect for them. But I don’t know them all that well and the usual apprehension that goes with a social event with unfamiliar people was compounded by the fact this was also an unfamiliar setting for me.
Second, prior to Bella’s diagnosis almost four years ago and I had no experience with blindness. Heck, prior to her birth I had not experience with deafness, either. Like most parents of children with Usher syndrome, I am terrified of what the future might hold for my daughter. And, like a lot of families, I didn’t want to know if it’s going to be bad.
So I avoided adults with Usher syndrome for a long time. I was afraid they would lead a difficult life, a lonely life, a life without joy. I had done the same thing with deaf adults when Bella was first born. I just didn’t want to know.
I find this with lots of families of children with Usher. They avoid conferences and deafblind functions. They don’t want to connect with adults with Usher. Part of it is that many adults with Usher were born long before cochlear implants and digital hearing aids, so most of them sign. This furthers the divide between newly diagnosed Usher families, the majority of whom do not sign. Add in that the sign language is often tactile sign and newly diagnosed families find the communication all the more difficult. This feeds their anxiety. They picture their son or daughter using tactile sign, speaking to them through an interpreter, and it scares them to imagine that distance between them and their own child. I know it scares me.
But those that read this blog know that I am a vocal advocate for building an Usher syndrome community for both practical reasons and personal reasons. Practically speaking, to find a cure is going to require the efforts of all Usher families. We need your natural histories, your genetic information, your experiences, and yes, your money (or at least the money you might help raise). Eventually we will also need Usher families to participate in clinical trials and the best candidates for those initial trials are Usher adults.
On a more personal note, I want a cure for my daughter. I don’t want her to go blind. The only way that is going to happen is if Usher adults and other Usher families are engaged in the process. And, as I regularly advocate, the only way to keep families engaged, whether they be newly diagnosed or older adults, is to connect with them and build an Usher community.
So that’s what I do these days. I connect with Usher families and with Usher researchers. I have made a ton of great friends through it and many of them are Usher adults. Still, most of my communication is through e-mail and I do not often meet deafblind adults outside of conferences where accommodations are made and professionals are around. So my experiences in the ‘real’ world are few.
My first real experience with blindness came at a dinner several years ago with a well known blind author. We were both traveling in Seattle and staying at the same hotel. I was terribly nervous meeting him, more because he was blind than because he was relatively famous. But he was gregarious and funny and dinner turned out to be memorably fun. Especially when we left the restaurant a number of drinks later and I realized I didn’t know how to get us back to the hotel. This led to several wandering blocks of ‘the blind leading the blind’ jokes from my companion and at least one trip into a hedge when I forgot that I was leading him. Thankfully he had a good sense of humor.
But this was my first deafblind party. This was the first time that I would be immersed in the daily life of adults with Usher syndrome. I was very nervous. It helped that my wife Julia was with me. At least one of us could fake an injury if we couldn’t handle it.
There were 15-20 people at this party. About a half dozen of them had Usher syndrome. All were adults. All had pretty severe vision problems. But their communication varied. Some only used sign language. Some used a combination of spoken English and sign language, depending on the audience. And some used spoken English exclusively. Most of the sighted party members knew sign language, too, and there were several interpreters about, so communication was surprisingly easy.
I sign a little, but mostly I needed assistance communicating. I did not follow etiquette very often. You have to wait to reply when someone is using an interpreter and, well, I have a big mouth and I’m from Boston so I tend to talk over people and talk very fast. By the end of the night I had it down, though.
And the conversation was wonderful! These were fascinating people. There were college professors and state representatives. People had travelled the world, written books, and been on the radio. The party was to celebrate the success of a recent deafblind day at the state house and there was a declaration signed by the governor that was passed around. Forget faking injuries. Julia and I didn’t want to leave. I went in expecting a bunch of silent, moping people sitting in the dark bemoaning their fate. I found one of the most upbeat, positive, energetic, and capable group of people that I have ever had the pleasure of meeting.
Now, this is not to say that the night went entirely smoothly. The guide dogs were let off their leads and they partied like sailors, tearing around the house and knocking over anything in their path. Since their owners (is that the right word?) couldn’t see them, the dogs were usually one step ahead of retribution. A lamp would break and by the time everyone turned to the sound, the dog was long gone and the owner was yelling at the vacant rug. Julia and I have two dogs, one of whom is a conniving son of a gun, so we could relate.
Even more humorous was the making of dinner. Our hostess, who has Usher and can not see or hear very well, insisted on command of the kitchen. She was making pasta in a giant cauldron and was completely oblivious to the boiling water spilling everywhere. It was an open floor plan and those of us without Usher could all see what was happening so, one by one, we stepped in and offered to help. And one by one, we were shooed away. At one point I was standing with her husband as she knocked over a bottle of wine and grabbed a knife by the blade as the pot boiled over and I said, “Uh, should we offer to help?” He just waved a hand as only a husband can and said “Nah. She’s fine. She wouldn’t accept help anyway.” Boy, did he know his wife.
The good news is that our hostess survived the making of dinner and the house did not burn down. I’m pretty sure her husband would have stepped in if fire broke out, though knowing our hostess, I’m also pretty sure he would have been swiftly shooed away. And dinner was excellent. I’m not just saying that. It was really excellent. Better than I could have made (though I struggle with grilled cheese, so that’s not saying much).
So we had a great time at our first deafblind dinner. But that’s not the point. It could just as easily have been packed with dullards and been the most boring three hours of my life (next to that time I watched Waterworld). The point is that we have to find ways to bridge the divide between Usher adults and families with Usher children. We need each other. We can learn from each other. And there is no one that understands us better. This is not to suggest that every Usher family will like every other Usher family. We’re a cross section of the population at large. You’ll click with some and not with others. But you have to try for your own good or for the good of your children. And you never know, you might just wind up having a great time. Who would have thought that would come from an Usher diagnosis?