By William H. Grignon
As many of you know, I am an active peer within PCB’s leadership, but I am physically located in Florida. My local chapter, the Southwest Florida Council of the Blind, has run a “Living the Good Life with Vision Loss Expo” for several years now. One thing that keeps cropping up time and time again is the response by some blind attendees who refuse to learn braille and/or JAWS, take up the cane, or sign up for paratransit. They say their spouse, child, friend, neighbor, or a volunteer will read, guide, or drive for them wherever and whenever they need it. In response, we want to ask the blind person, “What would happen if your “helper” gets sick? Who is going to take care of them? Who is going to take care of you? Who is going to leave the house to get medicine and other supplies? In this light, it is just selfish and self-defeating for the blind person not to learn, not to develop skills, not to take on the fair share of duties and responsibilities for their own life.
Think about this dynamic for a moment, then think about this year’s PCB Convention theme of self-reliance, then think about how the phenomenon described in the paragraph above affects one’s trip to self-reliance. Sadly, that trip never starts or, if it does, it usually sputters and subsides back into passivity and dependence.
Let’s examine the dynamic between the person with vision loss and their helper. Of course, human relations are tremendously complex and there is no one-size-fits-all description. But the dynamic has some shared characteristics:
- The blind person either does not know about or, contrary to knowledge and experience, chooses to believe that they do not have or could have skills that lead to independence and self-reliance
- The blind person chooses to be passive, dependent, and reliant on their helper
- Lacking the necessary skill-set, because they’ve never tried to gain it, the blind person believes their only option is to rely on their helper for everything from reading mail to driving them hither and yon
- As the blind person subsides into passivity and dependence, the sighted helper takes on increased responsibilities
- As the helper takes on more responsibilities, resentment builds up as their share of work becomes almost overwhelming
- Sensing this simmering resentment and desperate not to jeopardize the little help they do get, the blind person learns to placate, wheedle, and negotiate the bare minimum of help
- The blind person and the helper/ end up in a taut dance-of-pain, spiraling into a lock-down of frustrated power politics
- Without compassionate intervention, their relative positions harden, and they find themselves drifting farther and farther apart
While the pattern described above seems to be an all-too-frequent scenario, how the blind person and their helper get there can be quite different.
The gas-lighter: Here, the helper exploits the 1-up power position and tries to undermine the confidence of the blind person at every turn. While seeming to be encouraging, the Gas-lighter nonetheless trips up the blind person’s attempts at self-reliance, reminds the blind person of past failures, and takes on duties with a long-suffering condescension that keeps the blind person down and dependent.
The Angel: Here, the helper may have a good heart, but they don’t have any clue about what a blind person can do on their own and they don’t have any interest in exploring these possible efficacies because any skills the blind person gains will lessen their dependence on the Angel. The Angel thrives in being helpful, usually in the most public settings possible, so they can get the acclaim of others, “Look. See how much she does for him? She’s truly an angel.” And with each “angelic” reenactment, the Angel is puffed up and the blind person is once again relegated to the passive recipient of the Angel’s largess.
The Befuddled: Here, both the blind person and the helper are not informed about what a blind person can and should do. They do not have access to tools, resources, information, and people. In this state of mutual befuddlement, they do the best they can, sometimes working out compromises, sometimes running head-long into a wall of frustration. Neither knows and neither grows. And, just because it’s easier, the helper does more and more, and the blind person becomes less and less.
The Deep-ender: Here, the helper assumes that the blind person is more competent than lack of experience or training would suggest or just needs a good kick in the… um… pants. Without investigating tutorials or other training possibilities, the Deep-ender will toss the blind person into difficult situations and tell them to figure it out. And maybe the blind person will figure it out and maybe they won’t. Perhaps some blind people will respond to this form of “tough love,” but most will probably feel abandoned, overwhelmed, and increasingly disinclined to take on new challenges.
The Collaborator: Here, the helper and the blind person work together as a team. They explore training opportunities, share learning experiences, and work out who can do what. For example, while the helper can drive, the blind person can do things like research interesting facts about and things to do with respect to their destination, figure out the route, provide directions from a GPS app, pump gas, and go into a convenience store for supplies. This team recognizes that each person has strengths that make the team strong and resilient. Their mutual understanding and encouragement help both parties to grow and enjoy a deeper bond.
In the end, we, as blind people, have to ask ourselves, “Are we okay with being overgrown children, passive and dependent on our spouse, child, friend, neighbor, or volunteer, or are we more and better than that? Do we ever want to jump into the driver’s seat to steer our own present and future?