By John Rae

This article appears in

subjects: AEBC Activities, Blindness Skills, Consumerism - Activists, Organizations

related issues:

Editor's Note: The following paper was presented at The Festival of International Conferences on Caregiving, Disability, Aging and Technology (FICCDAT), Toronto, June 17, 2007.

"Finally, those of us who are sighted have a responsibility to become aware of the ways in which we harbour assumptions or prejudices about blindness and visual impairment. We must work to change those attitudes in ourselves and others. I know that accepting blindness as a valid, vibrant way to live in the world seems counterintuitive when you spend your professional life fighting vision loss, but it's not. We live in a sighted culture. So long as that is true, then having sight makes functional living easier and enjoying the pleasures that sight has to offer enriches life.

"But while there are many ways to be fully human and to experience an enriching life--as sighted people--we will never experience the enrichments that blindness may itself have to offer. So long as we fear blindness and reject it, so long as we believe in some way that blindness is lesser than as a way of being, not simply a more difficult way, then we are part of the problem. We are part of what makes vision loss itself so difficult.

"We can work to save sight and work to help those who lose vision to continue to thrive by expanding their skills and making the society more accessible, and at the same time we can celebrate the richness of being human in every form. If we do this, we will truly be part of the solution, on all fronts (Mogk and Mogk, 2004)."

In attempting to help a person who is blind or partially sighted, the caregiver may over-accommodate, and thereby take away from the individual's independence, respect and dignity.

Some examples are:

In a bank, do not stand where you can hear the blind person's financial transactions unless asked to do so.

In a store, the clerk hands change to the caregiver and the caregiver accepts it.

In a restaurant, the server asks, "What does he/she want?" and the caregiver answers.

The transit operator asks, "What stop would you like?" and the caregiver answers before the blind person can do so.

Baby boomers who have lived with vision impairment for much of our lives are being joined by many who have developed vision loss in later life. The quality of life that we experience in our senior years will be profoundly affected by public attitudes about vision impairment, and the ways in which caregivers respond.

"The mistaken beliefs and false concepts are almost universally accepted by the general public, and when people lose their eyesight, they carry with them into blindness the erroneous ideas which they held when they were sighted. They then live the part they are expected to play and feed back to society the conceptions that it gave them in the first place.

"Likewise, those who are born blind are taught their roles from the beginning, and unless they are given counterbalancing information, they live as they are expected to live. They think as they are expected to think (Jernigan, 1984)."

During the past 50 years, we have seen some fundamental changes in the way in which disability, including loss of sight, is viewed by many. Learning many lessons from the civil rights, demedicalization, deinstitutionalization, self-help and women's movements, persons with disabilities have organized themselves into their own groups that are based on the principles of independent living and advocacy. The Alliance for Equality of Blind Canadians (AEBC) is one such consumer organization.

Founded in 1992, the AEBC is a national, not for profit organization of Canadians who are blind, deaf-blind and partially sighted. AEBC's work focuses on public awareness and advocacy on a wide range of blindness-related issues, in an effort to change both attitudes and behaviours so that we may participate and take our rightful place on terms of equality with our non-disabled peers in all aspects of regular community life.

"Independent Living (IL) is more than a social movement; it is also an analytic paradigm that is re shaping the thinking of rehabilitation professionals and researchers alike (deJong, 1979)."

deJong's analysis shifted the focus away from the medical model, which had centred on the disability itself. Issues such as social and attitudinal barriers were identified as the real problems facing people with disabilities. People with disabilities no longer saw themselves as broken or sick, certainly not in need of repair. The answers were to be found in changing and "fixing" society, not people with disabilities.

Most important, decisions must be made by the individual, not by the medical or rehabilitation professional (Gina McDonald and Mike Oxford).

Today's senior who experienced vision loss early in life probably attended a segregated school system, worked in a sheltered workshop or stayed at home on social assistance and now may be relatively content in a retirement centre with limited facilities.

While many members of our current generation may have started in a segregated school, many of us later integrated into the public system for high school. A growing number of us attended post-secondary school and have held various types of employment during our careers.

As baby boomers, we have access to a growing range of adaptive technology, which provides us with information not previously available about our disability and programs and services that enable us to direct the kind of care and services we require. As a result, more and more of us want to remain in our own homes, and maintain as much independence as possible.

We have developed heightened expectations concerning living more active lives with vision loss. In addition, we now expect to be more involved in the development of programs, approaches and services that are designed to meet our needs. Working collaboratively with consumer organizations, and involving aging seniors in all facets of service design and delivery, will result in programs that will better meet our needs.

Attitudes of caregivers play an important role in ensuring that all individuals who are blind, deaf-blind or partially sighted live active and fulfilled lives. The attitudes of caregivers must recognize and believe in the abilities of baby boomers who live with significant vision loss. This is particularly important for aging baby boomers as we attempt to retain an optimum level of independence throughout our entire lifetime.

References

DeJong, Gerben. "Independent Living: From Social Movement to Analytic Paradigm," Archives of Physical Medicine and Rehabilitation 60, October 1979.

Jernigan, K. Blindness: The Circle of Sophistry, July 6, 1984.

Mogk, M.D., Lylas G. & Marja Mogk. "Saving Lives: The Impact of Vision Loss in Later Life," Presented by Dr. Mogk at the Pfizer Ophthalmology Therapeutic Area Conference, March 25, 2004: www.mdsupport.org/library/savinglives.html

McDonald, Gina and Mike Oxford. History of Independent Living.