Love and Other Challenges

Blind Justice

Michael: 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?

Joel: 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?
Michael: 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 and lonely?

Joel: 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.

Michael: In what areas do you think society is most ignorant--and in need of change--with regard to people with seeing disabilities?
Joel: 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.
Michael: Such as?
Joel: 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, "Twelve Rules of Blind Etiquette. "

Twelve Rules of Blind Etiquette

Here are some things to keep in mind when dealing with those of us who are visually handicapped:

1.     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 crowded places.
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
        term "blind."
7.     Do not leave us standing in "free space" when you are serving
        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 duty.

(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.)

Michael: 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?
Joel: 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.
Michael: 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 agenda?

Joel: 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."


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