When Your Best Efforts Fail . . .
An Open Letter To Ophthalmologists
Although your work is dedicated to the preservation of sight, the time will inevitably come when you face the fact that one of your patients is, or will become, legally blind. At this critical moment, you have, for that patient, the greatest service yet to render.
To an overwhelming degree, your patient's first steps toward some adjustment to blindness will be guided by you. He or she undoubtedly has high respect for your expertise, and you will likely be the first professional with whom he or she will talk about blindness.
Your patient's immediate reaction to the news of blindness will depend, to a large extent, on the attitude toward blindness you display and the information you provide. Even when your best medical efforts to preserve sight fail, you can play a major role in directing your patient to take the first steps down the road to achieving independence and a positive attitude about blindness.
The National Federation of the Blind wishes to be of assistance to you in this challenging area of your professional life. We hope that the information provided below will help you as you work to develop a comfortable, positive, and effective approach to responding to blindness or oncoming blindness in your patients.
Blindness is by no means a sentence of helplessness, isolation, or despair for your patient. Thousands of independent, self-sufficient, happy blind people, from every walk of life, in every type and at every level of competitive employment, and representing every degree of physical and intellectual ability, have already proven this beyond a shadow of a doubt.
Blind people have proven themselves as competent professionals, working in a variety of fields. Across the country, there are blind teachers in our public schools, blind lawyers, and blind social workers. Blind business leaders are competing on equal terms with their sighted counterparts.
Blind people have also proven themselves capable of leading self-sufficient lives at home and in their communities. They are managing the tasks of everyday living with competence and ease. They are traveling across the United States and around the world with poise and confidence in their capabilities. They are raising children and holding leadership positions in their communities. Given proper training in the skills of daily living and a positive attitude about blindness, which you can help foster, your blind patient can be expected to remain a capable, independent, fully-participating member of his or her community.
Your newly blind patient will need to acquire three things in order to regain self-sufficiency and productivity:
- a complete acceptance of his or her blindness
- an unshakable confidence in the ability of the blind, and of himself or herself as a blind person, to live a normal life
- a thorough mastery of the basic special skills, including Braille and cane travel, which will enable him or her to operate normally without vision in a sighted world.
It is one of your gravest professional responsibilities, and unquestionably one of your finest professional achievements, to initiate the process by which your newly blind patient will be able to take his or her place once more as a normal, contributing member of society. In the following section we will discuss the specific areas in which you, as an eye specialist, can play an important role in this cause.
One of the most obvious but crucial elements that contribute to a real acceptance of blindness is the certain knowledge that sight cannot be restored. As soon as you are reasonably certain yourself, it is vitally important that you inform your patient of the news that he or she is blind, about to become blind, or in danger of going blind in the future, and that blindness is or will most likely be irremediable. Many doctors avoid this direct discussion for fear of seeming harsh or cruel. As the result, many blind people have put their lives on hold for years, failing to admit the severity of their vision loss, or waiting for a cure that will never come. The kindest, most respectful way you can help a patient cope with his or her eye condition is to be truthful about his or her impending blindness and offer the patient positive reassurance that he or she will be able to lead a normal, productive life as a blind person.
It is equally important to maintain a level of frankness with a low-vision patient or with the parent of a partially sighted child. Such patients need and have a right to be kept informed of their current visual status, to understand as completely as possible the nature and extent of their visual disability, and the relative change in vision from examination to examination. The tendency of most persons with slowly decreasing vision'both children and adults'is to ignore or even to try to conceal their loss. More than a few, in fact, may even be unaware that they are seeing less, and generally achieving less, each year. Only you can tell them the truth and be believed.
A diagnosis of blindness must undoubtedly seem like a difficult and painful task. But, this task is made much easier when you know that your newly blind patient need not, indeed with your help will not, be resigned to inactivity and depression. As you inform your patient of his or her blindness, you can extend a very real hope, not of normal sight, but of a normal life without it. It is vitally important that the diagnosis of blindness be made early and definitely, but it is also critically important for you to provide your patient a sincere, positive, and unequivocal message of informed encouragement.
Tell your newly blind patient in no uncertain terms that blindness is not the end for him or her. Inform your patient that thousands of blind persons like him or her, many of them also newly blind, have learned to operate with complete independence and to live completely normal, productive, happy lives.
Steel yourself to avoid pity, apology, or the implication of inferiority because vision is gone. Your patient will face those negative attitudes soon enough when he or she leaves your office. Do not offer half-hearted hope, the prospect of an "almost normal" existence and of second-class citizenship. You must convince yourself, so that you can convince your patient, that blindness is not a tragedy, not an incapacitating affliction, not a bar to anything that makes life worth living, but a purely physical nuisance, already overcome by thousands, and capable of being overcome by anyone.
You must guard against imposing restrictions of any kind, other than those made absolutely necessary by the patient's eye condition; you do not want to reinforce the widespread misconception that blindness in itself necessarily limits movement or activity.
Above all, you should cite the achievements of the blind today: the students, the scholars, the teachers, the scientists, the lawyers, the business leaders, the skilled mechanics, and the secretaries who offer living proof that the hope you offer is a very realistic hope. Your patient should learn from you that opportunities for successful achievement without sight are as numerous as the categories of human activity. And whether your patient be a child in school, an able-bodied worker, or a retired senior, you can steer him or her toward the goals of self-respect, self-sufficiency, and normal activity. Your newly blind patient's first hope of accepting and overcoming his lack of sight lies in your confident, positive approach to his blindness and to blindness in general.
Once you have informed your patient of his or her blindness and provided your best assurances that he or she will be able to resume a normal, active life as a blind person, you have one service left to render. You should provide your patient with information about services available to blind people in your area. This includes vocational rehabilitation services, the state library for the blind, and the local chapter and state affiliate of the National Federation of the Blind. The Website of the National Federation of the Blind provides a wealth of information that can be beneficial to a newly blind individual; it can be accessed at http://www.nfb.org/. The NFB Web site also provides information about NFB-LINK (http://www.nfblink.org/), an online mentoring program linking successful blind people with those seeking knowledge about blindness.
You as the eye specialist can be a powerful force for good in your patient's life, even when your medical skill cannot preserve or restore sight. If you can honestly tell a patient he or she is blind, if you can believe, and make your patient believe, that blindness will not bar him or her from a normal life, if you can guide your patient quickly to those services that will equip him or her for normal life without sight, then your contribution to society will be that much greater. And for that small portion of patients for whom sight cannot be preserved or restored, your best efforts shall not fail.
Executive Director of Affiliate Action
National Federation of the Blind
(410) 659-9314, ext 2335
Resources to share with your patients
- NFB-LINK, (http://www.nfblink.org/) provides mentoring relationships for individuals who would like resources and guidance on a variety of blindness topics. The easy-to-use online system will match you with a knowledgeable, experienced mentor who can answer your questions and refer you to additional resources. Information on a variety of vocational, educational, and recreational interests is available through this innovative program.