Michael: I thought
it would be good to begin with a description of your day to day
life. But first, can you briefly portray what you see, and don't
see, when you look around on a well-lit day?
Even in bright light, it's as if I'm looking at the ghostly
stage set of a world through the gauzy inner curtain of a theater.
It appears that I'm seeing a normal, if blurry picture, but
things are actually missing all over, even directly in front
of me. When I talk to someone, his or her face is a featureless
shadow. When I look at a printed page or the label on a can
of soup, I may see only blankness. Because I still have some
sight from the peripheral edges of my retinas, I see a full-screen
vista, instead of having tunnel vision, which is more common
with RP. So I carry a white cane mostly to warn others to be
careful of me, as I can still see the sidewalk as long as I
don't look directly down at it.
a simulation of Joel's deteriorating vision
|Michael: How does
a typical day now compare with a typical day, say, twenty years ago,
in terms of how you do things that are for most people highly vision-dependent?
out how Joel uses
been a continual process of adjustment. Sometimes, as with
driving, giving something up has been my only option. After
a near-tragedy, I sold my car, turned in my license, and learned
to ride the bus, which was hard for me, both in practical
terms and psychologically. When I could no longer make visual
sense of movies, I stopped going to see them. On the other
hand, I've found adaptive strategies for many things. I can
order a great variety of audio literature and periodicals
from the Braille Institute Library here. For using my computer,
including going online, I have the screen reader, Jaws, to
tell me what's happening. And I do the best with what's left
sight, as well as bring my memory and other senses into play
to compensate where possible. Slow going, sometimes, but a lot
better than being incapacitated.
from the things your disability has forced you to give up, do you
feel like there have been any major shifts in your interests and
Joel: I have a
new appreciation for medical and biological science. Disease processes,
cellular biology, gene therapy and stem cell research. Otherwise,
I still care about all the same things as before. Music, for example.
I'm trying to devise a cataloguing and storage system for finding
the CD's in my ever-growing music library without being able to
read the CDs' "jewel boxes." But all daily activities, from computer
use to grocery shopping, have become adaptive challenges. And not
driving has turned me into more of a recluse than I ever meant to
be. No more flurries of errands, no more spontaneous outings, alone
or in good company, to have a cappuccino and a stroll at the beach,
and, unless I can recruit a friend who drives (which is everyone
I know, but still) I miss a lot of good cultural events that aren't
convenient or even accessible by public transportation.