Another change I've noticed in the last ten years is your greater
awareness, and even activism, around social issues that affect the
blind. How did that come about?
I expanded my awareness of blindness issues on the Net, including
the 1991 Americans With Disabilities Act (ADA). There are several
national organizations advocating for the blind, and offering services
and training. They differ radically in philosophy and character. One
of them, you could take to the opera to banter charmingly with wealthy
patrons. Another is more a grass roots pit bull of a group, given
to charisma-driven internal cultishness, pious rehabilitative rigidities
and robust but inconsistent political and legal activism. And I began
encountering obstacles, misunderstanding, and mistreatment. Such as
that many bus drivers in L.A. won't announce stops along their routes,
even if you ask nicely. So I call, I e-mail, I cc my city councilman
and district supervisor. And I get in drivers' faces, as diplomatically
as they deserve, or not. I think it was Martin Buber who said, If
I am not for myself, who will be?
When you started running into people's insensitivities (and
worse), did you immediately see it in a larger social context, as
I assume the national organizations you mention do? Or did it feel
more isolated and personal, and therefore (I would think) overwhelming
Maybe I'm just an incurable narcissist, but every slight or rebuff
feels personal at first, until I am able to generalize it. Then
I realize that society is not intending me cruelty, but is collectively
narcissistic itself. "Blind," so to speak. I am aware of the national
organizations with their support and advocacy agenda; their efforts
and official positions have deepened my understanding of these issues
of access and respect. But I feel that advocacy, whether at a personal
or institutional level, has first to attempt to educate and raise
empathy and consciousness, and only then, if resistance is met,
move to the adversarial legal and legislative arenas in which those
organizations excel. So far, I've been holding my own, doing my
own teaching and advocacy as I go, situation by situation. Much
as I appreciate knowing the national groups are out there, I hesitate
to join one.
In what areas do you think society is most ignorant--and in need of
change--with regard to people with seeing disabilities?
From my experience of being vision-impaired and carrying a white cane,
and from discussions on blindness-related Internet mailing lists,
I'd say the most profoundly needed education is in the area of recognizing
both the capabilities and disabilities of blind and low-vision people,
so as to be able to treat them appropriately. Often, I have had my
general functionality grossly underestimated and my ordinary feelings
unimagined. I've been "indulged" by good Samaritans grabbing my elbow
to pull me across a street or get me seated on a bus, disrupting my
careful orientation, and, when I declined their help as politely as
possible, had them announce my crass ingratitude to everyone within
earshot. Bus drivers repeatedly offer to drop me off like a package
at my destination, while refusing to simply announce the stops, which
is humiliating and disempowering. Social situations have their own
such bad moments, as well.
A slew of awkward things can happen, but it's a two-way street. If
you have a vision deficit, you can't usually expect others to be attuned
to your abilities and needs, unless you're among people familiar with
the blind. At the Braille Institute, where sighted staff can usually
guess the nature of my problem just by observing me and figure how
best to put me at ease, hardly any explanation is necessary. But in
most situations, I have to do some educating, how much depending on
whether it's just a limited encounter, such as when a supermarket
clerk helps me shop, or a more nuanced and protracted relationship.
And even friends may forget not to plunge into a dark restaurant without
offering their arm, or respond to something I say with a facial expression
or a gesture, instead of words. To address these and other problems,
Carl Augusto and David McGown have put together a helpful guideline,
Rules of Blind Etiquette.
Rules of Blind Etiquette
are some things to keep in mind when dealing with those of us who
are visually handicapped:
Speak in a natural conversational tone. It is not
necessary to speak
loudly or slowly unless the person also
has a hearing impairment.
2. Address us by name when possible, especially in
3. Address us personally, not through someone else.
4. Greet us when we enter the room so that we know
you are present.
5. Indicate the end of a conversation when you
leave us so that we aren't
left talking to the air.
6. Feel free to use words that refer to vision. We
also use the words
"see," "look," "watch," etc. And remember,
we are not insulted by the
7. Do not leave us standing in "free space" when you
as a guide.
8. Be calm and clear about what to do if you see us
about to encounter
a dangerous situation.
9. If you think we need help, ask first. Don't assume
that you should help.
10. When offering assistance, never take us by the arm. If
you offer your
arm instead, we can follow slightly
behind and anticipate changes.
11. Never take hold of a white cane.
12. Never pet or interfere with a guide dog while it is on
(Source: Carl Augusto, President, American Federation
for the Blind in NY, and David McGown, executive director of the
Guild for the Blind in Chicago. Compiled by Dan Roberts.)
What sorts of action would you like to see on a large scale--laws,
media campaigns, whatever--to improve accessibility for the blind
and raise awareness among the sighted?
Since the 1991 passage of the Americans With Disabilities Act, handicapped
individuals understand that "niceties" like wheelchair-access curb
cuts and building ramps, blind-friendly ATM's and voting booths, are
not only possible but entitlements. And wherever a legitimate need
remains unmet or an accommodation is implemented without intelligent
prior consultation with its intended beneficiaries, effective advocacy
and remedial action is now possible where once it wasn' t. Still,
at the level of daily activities and interactions with the general
public and service personnel such as bus drivers, we're a long way
from a climate in which most people have even a rudimentary comprehension
of a disabled person's capabilities, incapabilities, and just plain
human feelings. More frequent, realistic and insightful portrayal
of the disabled in movies and TV shows would help. So would laws making
it mandatory, for example, that public transit operators call every
stop along their routes.
Have you felt a sense of shifting identity now that you' re a member
of a group with particular grievances and, sometimes, a shared political
My sense of identity is certainly shifting or expanding (more the
latter, I hope) to include feeling related to other disabled people,
especially the blind. But the movement feels as gradual as the progression
of my retinal degeneration, and is marked by much ambivalence. Once,
on a blind writers' mailing list, a regional honcho from a national
blind group apparently mistook me for a raw neophyte to sight loss,
and when, in a private email, apropos to a discussion of practical
issues, I tried to describe the uses and limitations of my remaining
vision, he shot back: "Joel, never mind the details. You're a blind
guy now. Get used to it." I presume he meant well by this "tough
love" evangelical approach, but I was horrified. He reminded me
of Pennywise, the demon sewer-clown in Stephen King's It. "Come
on in. You'll float. We all float down here."