VisionAware

Part 6 in a series of articles by Margaret E. Cleary, M.S., R.N., CVRT, based on principles from Thomas J. Carroll’s book Blindness.

Loss of Personal Independence

Carroll’s Concept: Individuals react differently to forced dependence. From birth to our dependent old age, two forces are at work: the desire for independence with its freedom and the desire for dependence and its protection. The true measure of independence is the degree to which we can accept forced dependence.

The person with visual impairment, who usually is able to handle the normal degree of dependency versus independence, becomes tested in a new way. Dependency burdens and hampers. Family members may unconsciously increase the degree of dependence. Partners, children, and neighbors may feel power from the new relationship.

Cleary’s Observation: People with diabetes and visual impairment may need someone to provide moral support, offer reminders to take insulin, accompany to medical appointments, and partner in a sports activity. Dependence on others develops in matters of finances, treatment, and daily living. Impediments influence behavior, attitude, and planning.

Restoring Personal Independence

Carroll’s Concept: One aim of rehabilitation is to restore as much reality independence as possible, to minimize people’s objective need to depend on others beyond the normal give-and-take of life. Training of the other senses, and learning new techniques for daily living and mobility remain of utmost importance. However, people with visual impairment will always need more help than most people for reading, for keeping up with things, and in certain social situations. Rehabilitation workers, financial supporters, and agency personnel need to provide temporary support with the intention of gradual return to self-sufficiency.

Cleary’s Observation: People who have diabetes and visual impairment may have lived under a cloud of overly dependent relationships, especially if the diabetes was diagnosed during childhood or adolescence. Both they and their families may need help in breaking unhealthy patterns. The success of independent self-managing and holding a job helps.

My Reflections: Students told me often that in time they appreciated their resulting wake up call to pay attention to their health. Connie stated that life kept her too busy to take care of herself. Learning about the newest theories, latest equipment, and non-visual skills resulted in her general health improvement. Feeling better made her a believer.

Loss of Social Adequacy

Carroll’s Concept: This involves the loss of personal acceptance of human dignity, almost of individuality and personality. Social inadequacy is forced on blind people not by their blindness, but by the supposedly kindly and sympathetic people who surround them. Carroll believes sighted people add to the multiple handicaps of blindness and its effects.

Thus, sighted persons cause people with visual impairment to be labeled in a group known as “the blind.” No matter who they are or what they achieve, they are “the blind.” They are placed in a category and expected to fill it. They lose their place in the family, the community, and the workplace. They are challenged to recover his previous status in the world.

Cleary’s Observations: People with diabetes may also have a reason to feel inadequate being now known as “the diabetic.” Diabetes confronts them with the threat of a horrifying, misunderstood condition. Their activities often become more regulated and less spontaneous and flexible. Interpersonal relationships may change dramatically.

Restoring Social Adequacy

Carroll’s Concept: Loss of social adequacy affects both people who lose vision and society that imposes impossible standards. When people ceases to be personally adequate, society fails to accept them. When, on the other hand, society fails to accept individuals, they may well cease to be personally adequate.

Cleary’s Observation: Poor personal self-care or oral hygiene of people with diabetes and visual impairment may bring about unfavorable social attention. Conversely, those who independently self-manage their diabetes present a positive image about all people with diabetes.

My Reflections: I am pleased that today professionals encourage the use of the nouns “diabetes” and “vision impairment” when referring to people, rather than the adjectives “diabetic” and “blinded” as was common in Carroll’s day. The practice of referring to the individual or person with diabetes and visual impairment puts people first and reduces negative labeling.

Loss of Obscurity

Carroll’s Concept: Obscurity is the ability to be lost in the crowd, to be obscure, little, or anonymous, to be just another person on the street. When this is lost, personal business becomes everyone’s business. People with visual impairment lose their privacy; they become recognizable. Unwillingly they may become subject to the glaring light in which public figures must live. Not only do they live in a show window (with a glass through which they cannot see), but they are expected to conform to a degree not demanded of the average person.

Cleary’s Observation: People with diabetes can be publicly noticed preparing an injection and using special equipment. A severe hypoglycemic reaction may be attributed to drunkenness. There may be repeated reminders that vision loss may be attributed to lack of self-managing.

Restoring Obscurity

Carroll’s Concept: Blindness has a high “social visibility factor” because people with blindness are easily noticed by outsiders. People with visual impairment may themselves add to the social visibility factor through feelings of difference or insecurity.

In rehabilitation there is little that can be done to make the fact of blindness less visible. Instead, people with visual impairment are helped to see how futile and self-harming it may be to try to hide the obvious. The psychosocial aspect of rehabilitation helps people with visual impairment accept feelings of strangeness, difference and helplessness.

Cleary’s Observation: People with diabetes mellitus and visual impairment need to learn the self-managing skills necessary to measure and administer insulin precisely, perform blood glucose self-monitoring privately, participate in exercise with safety precautions, and perform work responsibilities independently. Presenting self-sufficiency encourages obscurity.

My Reflections: In 1961, students with diabetes and visual impairment started the day with a visiting nurse who took charge and monitored them. That automatically set them aside as being “patients” to the others. Contemporary students with diabetes begin the day in the privacy of their bedrooms; perform blood glucose self-management; take medication from their self-prepared pill organizers; walk to the cafeteria using a mobility cane; choose their breakfast foods; and self-measure insulin.

Loss of Self-esteem

Carroll’s Concept: This loss has two components: (1) the loss in objective self-estimate and (2) the loss in subjective estimate (self-image). Ideally these two estimates coincide in a self-evaluation that takes into account our positive total selves. However, the objective facts and our feelings about ourselves often differ. People with visual impairment have difficulty truly assessing their self-worth. The whole person has become maimed. They are unsure of their sexuality. They cannot trust their remaining senses. They feel alone and unsure of love. They no longer see beautiful things. Formerly free as a bird getting around, they are now immobile.

Cleary’s Observation: People with diabetes mellitus have to cope with the reality of a disease that is systemic and ongoing with the possibility of multiple future setbacks. As self-esteem decreases, so does confidence in other people. Such shattering awareness may mean beginning life again to reestablish an acceptable self-image.

Restoring Self-esteem

Carroll’s Concept: Self-esteem, the total opinion of oneself as a person with visual impairment, has two distinct phases, the objective self-estimate and the self-image. The multiple losses of blindness deal a sharp blow to both. The process of total rehabilitation can help a person build a self-image much stronger and more satisfactory than the previous one, while portraying strengths and purposes not before imagined.

Cleary’s Observation: People with diabetes and visual impairment benefit when successful self-managing skills produce a dawning recognition that a major crisis has been averted. Obtaining new information, adopting better habits, developing new friendships, involving oneself in group activities, and helping others opens up a whole new life with renewed belief in oneself.

My Reflections: Jennifer has a genetic disorder causing both childhood diabetes and visual impairment. Entering an independent living program, she was dependent upon others for diabetes care. Gradually she assumed tasks and equipment for personal and educational purposes. With confidence she applied to an out-of-state college and away she went!

Loss of Total Personality Organization

Carroll’s Concept: We come to consider what happens to the total personality under all the multiple blows mentioned. We live in a civilization in which apparently few of us have any strong defenses against trauma or shock. It seems generally agreed that all of us are potential material for some sort of upset, some sort of emotional difficulty. Each person with visual impairment brings to blindness a different set of feelings as well as a different personality. Yet blindness has a common power to offend and undermine lifelong personality organization. This power, like every major handicap, is a blow made up of a series of blows, each severe in itself, at a whole life pattern.

Cleary’s Observation: Diabetes mellitus adds even more blows to any whole life pattern. The personality and previous coping skills brought to the challenges determines how the adjustment is made. Demands to reorganize inner strengths, face consequences, and choose among multiple forms of support may be overwhelming.

Restoring Total Personality Organization

Carroll’s Concept: The restoration of total personality organization is, in a sense, the whole goal of rehabilitation, and how to bring it about is the whole problem. Personality loss is the effect of all the other losses, but restoration does not come about simply as the effect of rehabilitation in other areas.

Because blinded people are a normal people under abnormal circumstances, they benefit from professional help to recover and to achieve “total adjustment” to their new condition. The essential elements involved include sensory training, regaining personal skills, travel skills, buildup of support from family and friends, social casework or psychotherapeutic assistance, and work placement.

Cleary’s Observation: The individual with diabetes and visual impairment needs a similar program that includes understanding of diabetes; professional health and eye care; healthy eating and meal planning; exercise and relaxation methods; adaptive equipment and instruction; habilitation or rehabilitation; emotional support; and awareness of eye and vision complications.

My Reflections: I witnessed three colleagues providing most valuable service despite diabetes and visual impairment at the Carroll Center for the Blind: Brian Charlson, Vice President of Computer Services; Richard Connors, Mobility Instructor and Vice President of Community Service; and Eric Sollee, Fencing and Shop Instructor. Brian was blinded at the age of eleven and diagnosed with diabetes at the age of 52. Richard had diabetes since the age of 11 and legal blindness at the age of 59. Eric developed diabetes at age 72 and developed cataracts. Their journeys through blindness and visual impairment provided hope and courage to others who have been challenged by the dual disabilities.