A revealing opinion poll sponsored by MD Support shows that a strong majority of people affected by AMD do not think of themselves as blind, and they do not want the term to be used to describe their visual impairment.
The pronouncement is well known: “age-related macular degeneration (AMD) is the leading cause of blindness among senior citizens.” Along the same line, some organizations declare that “macular degeneration causes blindness,” or that donating to their cause will help them to put an end to macular degeneration’s “blinding impact.”
Macular Degeneration Support (MD Support), one of the world’s leading patient advocacy organizations, strongly emphasizes that people can see with AMD. They are not, therefore, going to go blind, and telling them so can be seriously hazardous to their psychological health, quality of life and motivation to seek treatment. In a study of 51 newly-diagnosed AMD patients researchers found that 33% met criteria for a depressive disorder at 6-month follow-up.1 Another study compared AMD patients who had unilateral central vision loss with those who had bilateral legal blindness. The unilateral group showed greater emotional distress despite comparable levels of disability, leading investigators to speculate that expectation of future worsening vision can cause severe emotional anguish and fear.2
The purpose of the MD Support survey was to gather opinions from AMD patients about the indiscriminate use of the word “blind” as a description of their condition. The survey was taken between June 1 and June 19, 2006, and the results have been distributed to patients, advocacy organizations and eye care professionals worldwide.
Survey population
253 people responded to the opinion survey. 87 were members of the AMD Internet community, 7 were members of a live support group and 159 were residents from a total of 12 retirement centers across the United States. Each respondent reported having one of the following AMD conditions:
- Dry, unilateral (1%)
- Dry, bilateral (31%)
- Wet, unilateral (11%)
- Wet, bilateral (31%)
- Wet in one eye, dry in the other (26%)
The respondents represented a diversity of years with the disease:
- Under 1 year (15%)
- 1-4 years (37%)
- 5-10 years (39%)
- Over 10 years (9%)
Survey Design
The survey presented five statements, requiring the respondent to indicate either agreement or disagreement. An interactive checklist-type form was accessible during the first half of June 2006 on the MD Support web site.3 The statements were also read aloud to retirement center groups during an Internet conference meeting of MD Support’s National Low Vision Support Group on June 8, 2006. This venue required response by a show of hands.
The statements were as follows.
A. The term “blind” means no functional (useable) eyesight in either the peripheral or central fields.
B. AMD affects the macula, or central vision, only.
C. AMD does not, by itself, cause blindness.
D. As a person with AMD, I DO NOT consider myself to be blind in either or both of my eyes due to AMD alone.
E. The terms “blind” and “blindness” should NOT be used without qualification to describe a person with AMD.
Space was provided on the online form for comments by the respondents. Comments from the retirement center participants were passed along by the group facilitators.
Results and observations
The following percentages of respondents agreed with the five statements.
Percent of Agreement Per Statement
| A | 91% |
| B | 95% |
| C | 93% |
| D | 91% |
| E | 93% |
Observation 1: As expected, not all respondents agreed with the established definition of blindness (A).
Possible rationales:
- Differences in interpretation of the definition.
- The perceived need to use the word for dramatic effect, whether or not it is used accurately.
Basis for rationales from respondents’ comments:
- “I do feel blind when I can’t see without aids.” (Rationale #1)
- “The word “blind” has many degrees. I am not totally blind, but I am partially blind and am considered legally blind.” (Rationale #1)
- “’Blind’ is the only word the population acknowledges.” (Rationale #2)
- “If ‘blind’ or ‘blindness’ is not used an an outcome of AMD, some people will not understand the total effect AMD will have on their sight.” (Rationale #2)
For a discussion of the established definition of “blindness,” see “What is the established definition of blindness?” below.
Observation 2: A small percentage of respondents did not agree with the established definition of AMD.
Possible rationales:
- Liberties taken with the established definition of AMD.
- Misunderstanding of the physiology of the disease.
Basis for rationales from respondents’ comments:
- “Losing one’s central vision changes the quality of life. Central blindness is blindness, no matter how you try to phrase it.” (Rationale #1)
- “Macular degeneration doesn’t just destroy [macular] cone cells. It destroys [peripheral] rod cells, too.” (Rationale #2)
- For a discussion of the established definition of AMD, see “What is the established definition of age-related macular degeneration (AMD)?” below.
Observation 3: Exactly half of those who disagreed that AMD, by itself, does not cause blindness (C) also disagreed with the definition of blindness (A). 71% of those respondents think of themselves as blind, even though they retain useable peripheral vision.
Possible rationales:
- Liberties taken, or confusion about, the established definition of “blindness.”
- Misunderstanding of the physiology of the disease.
Observation 4: Statements D and E are personal opinions which can be strongly held and which are the main focus of this survey. Of the group who consider themselves to be blind (D), only 79% agreed with the established definition of “blindness,” but 92% agreed with the established definition of AMD. 81% were aware that AMD affects only the macula.
Of the group who disagreed that the word “blind” should be avoided in connection with AMD (E), 38% agreed with the definition of “blindness,” while 85% agreed with the definition of AMD. Only 46% were aware that AMD affects just the macula.
Possible rationales:
- Liberties taken, or confusion about, the established definition of “blindness.”
- Misunderstanding of the physiology of the disease.
Observation 5: Comparing responses by number of years of experience with AMD yielded some interesting variations, as shown by this table.
Percent of Agreement by Experience Group
| A | B | C | D | E | |
| 1. Under 1 year | 91% | 100% | 73% | 82% | 82% |
| 2. 1-4 years | 84% | 92% | 88% | 84% | 84% |
| 3. 5-10 years | 89% | 100% | 89% | 96% | 93% |
| 4. Over 10 years | 86% | 86% | 71% | 57% | 71% |
The group reporting 5-10 years with the disease (Group 3) was significantly more likely (96%) than the other groups to not think of themselves as blind (D) and more in disagreement (93%) with the other groups about using “blind” in connection with AMD (E).
Possible rationales:
- Realization over time that AMD will not rob one of total sight.
- Eventual attenuation of the original dread that a diagnosis can cause.
Observation 6: Group 4 (over 10 years experience) showed a significantly lower percentage of agreement with nearly all of the statements (Statement A being the exception) than the other three groups.
Possible rationales:
- Frustration with the length of time with the disease.
- Frustration with aging in general.
- Blindness from a secondary undiagnosed condition.
Discussion
The results of the MD Support opinion survey show that 93% of people with AMD are averse to the use of the word “blind” in connection with their condition. 91% of them do not consider themselves to be blind, 93% know they will not go blind from AMD and 93% think the word by itself should not be used in connection with AMD. These are convincing statistics that are now available for the first time to eye care professionals, patient advocacy organizations and public service agencies. Hopefully, the message is clear and will be heeded.
More important, however, is that people with AMD can use these findings to defend themselves against those who tell them they will go blind. To dispense that kind of false information is irresponsible. It can have grave emotional consequences that can lead to serious depression and even thoughts of suicide.4 It also blurs the line between people who are visually impaired and people who are truly blind, a distinction which all governmental agencies, experienced AMD patients and especially blind people recognize.
Here are comments from selected respondents who have spoken well for the majority opinion.
1. “I resent the media and advertising agencies using this term for the sole purpose of shocking the consumer to pay attention to their causes.”
2. “I prefer ‘visually impaired’ over ‘blind.’ The word ‘blind’ to most of us would mean black blind–seeing nothing at all. This could be very frightening to someone who is first diagnosed.”
3. “I definitely do not consider myself blind. The director of my local support society feels that I should refer to myself as blind. I prefer my own description, ‘vision impaired.’ I disagree thoroughly and completely with the society’s stance.”
4. “When I went to renew my driver’s license, the people at the local MVD wrote ‘blind’ in the space for my left eye. I was insulted, because it was not totally accurate.”
5. “If people are told I’m blind, they don’t understand when they see me navigate the room fairly effortlessly, even though I can’t read, drive or play golf. I think the term ‘blind’ confuses people.”
6. “When first diagnosed, the only word I heard was ‘blind.’ I have since learned that I am going to be visually impaired–never blind. I went through much pain and despair because of incorrect or poor terminology. That was so unnecessary.“
7. “Blindness is a powerful word. For the newly diagnosed it can be like a bomb going off with disastrous emotional results.”
8. “Should we not also think about those who are really blind? I am not denying that AMD presents a good deal of problems. I am not denying that some of us really suffer. But, does that give us the right to claim fellowship with those who are really blind?”
9. “I still have good usable vision in both eyes, even though I have wet AMD and significant geographic atrophy in both eyes. When I read articles or comments that say I will go blind from MD, it frightens me and my family.”
10. “Although I agree to all these things at this time, it is the opposite of the way I felt for two years, which caused severe panic attacks. Even the RN told me I could go blind.”
11. “I consider myself visually handicapped, but certainly not blind. I resent reading publications that say AMD is the leading cause of blindness. This is not true, and it is time that we take a stand.”
Even though more than 90% of the AMD community agrees with these people, we must not ignore the few who do not. Obviously, several needs must be met in order to address the welfare of everyone living with this disease.
- Complete and accurate patient education about personal pathology and prognosis.
- Public accounts and media presentations that are accurate, truthful and noninflammatory.
- An uninterrupted continuum of care from diagnosis to successful self-management, with the goals being greater confidence, continued independence and a higher quality of life.
This ends the report on the opinion survey. Following is discussion and clarification of the established definitions of blindness and AMD.
What is the established definition of blindness?
Six reliable online sources were consulted:
American Heritage Dictionary Online
dictionary.com
encarta.msn.com
www.medterms.com
wordnet.princeton.edu
www.websters-online-dictionary.org
These sources confirm that “blind” means “without sight,” “unable to see,” “sightless,” “unseeing,” “without useful sight” and “unsighted.” It should be noted that www.medterms.com varies from the theme by adding that blindness is also “without part or all of the sense of sight.” This is contradictory (or unclear at the least), as it immediately follows that resource’s definition, “unable to see.”
Mixed in with these definitions, one will sometimes find the statutory definition of blindness (commonly called “legal” blindness), which was established to determine who may take advantage of governmental assistance and benefits. The definitions of legal blindness by these sources are variations of the American Heritage Dictionary version: “Having a maximal visual acuity of the better eye, after correction by refractive lenses, of one-tenth normal vision or less (20/200 or less on the Snellen test). The Social Security disability program (among other ruling agencies around the world) adds that a person is considered visually disabled when he has “a limitation in the field of vision of your better eye, so that:
(a) [he has] a contraction of peripheral visual fields to 10 degrees from the point of fixation, or
(b) the widest diameter of [his] visual field subtends an angle no greater than 20 degrees.”
The Royal National Institute for the Blind (RNIB) says that “Interestingly, for statutory purposes, the definition of blindness is occupational rather than medical.” 5 For that reason, statutory (legal) blindness is not part of the issue presented here.
Section 64 of the National Assistance Act 1948 (UK) defines blindness as “unable to perform any work for which eyesight is essential.” This is in line with the medical definitions quoted above, but arguments to the contrary are often set forth. Dr. Kenneth Jernigan spoke for the opposing viewpoint in Who Is Blind?6 when he wrote “blindness can best be defined not physically or medically but functionally or sociologically.” A sociologic definition of blindness, or one that is based upon an individual’s own perception of functionality, may be a convenience, but it would be insufficiently arbitrary. A person who has been recently diagnosed with AMD does not want to hear “blind” used indiscriminately. He wants a clear appraisal of his prognosis, and that appraisal, by definition and by virtue of its unnecessarily incendiary impact on his emotions, should not include the word “blind” without qualification. The people of the AMD community have spoken clearly in favor of this standpoint, and they will either speak out against or ignore any attempts to use the word indiscriminately.
What is the established definition of age-related macular degeneration (AMD)?
AMD is a progressive disease of the retina wherein the light-sensing “cone” cells in the central area of vision (the macula) stop working and eventually die. The disease is thought to be caused by a combination of genetic and environmental factors, and it is most common in people who are age sixty and over.
At its worst, macular degeneration will damage only central vision, which arises from the macular area, comprising less than 5% of the total retina, but responsible for about 35% of the visual field. This means that an affected person will find it difficult or impossible to read, drive, or recognize faces. The peripheral vision, however, is left untouched. Many affected people move about with no assistance at all and, with the help of both visual and non-visual devices, many lead independent, productive lives.
This description of AMD is from the MD Support web site.7 It is typical of the descriptions found everywhere, most notably the emphasis on the fact that the peripheral field is spared by the disease and that blindness is not a result. Here are examples from four other respectable sources.
1. “Macular degeneration alone does not result in total blindness. Most people continue to have some useful vision and are able to take care of themselves.” (Kellogg Eye Center, University of Michigan)8
2. “This disorder results in the loss of central vision only — peripheral fields are always maintained. Although loss of ability to read and drive may be caused by macular degeneration, the disease does not lead to complete blindness.” (U.S. National Library of Medicine & the National Institutes of Health) 9
3. “Patients can be told that although central visual loss is common, peripheral visual loss is rare.” (American Academy of Ophthalmology)10
4. “ARMD never causes total blindness. Persons with ARMD, even its most severe form, have normal ‘peripheral’ or side vision. If you know of someone who has ARMD and has lost peripheral vision, this is not because of ARMD but because of another eye condition.” (University of Alabama Department of Ophthalmology)11
As the MD Support survey showed, most people who have had AMD for several years know that, unless a secondary condition affects their peripheral field, they will maintain a fair amount of independence and unassisted mobility. They may have defects in their visual fields (blind spots, distortion or scarring) that prohibit seeing with that part of their retinas, but personal experience and the facts of medical science assure them that AMD will not blind them. They are, instead, affected by “visual impairment,” also called “partial sight” or “low vision.” Their condition may even be described as “central blindness” or even “legal blindness,” which are two examples of how the word “blind” can be suitably qualified.
Most agencies officially recognize the difference between a blind person and a visually impaired person. The United Kingdom’s Disability Rights Commission Act 1999, for example, differentiates between “blindness” and “partially sighted.” The Blind Citizens of Australia differentiates between “blind” and “visually impaired.” These distinctions, like the definitions of “blind” and AMD, are well-known in the eye care field and by those who provide information and support for patients. The only reason, therefore, that someone in such a position would purposefully interchange the terms would be for dramatic effect. As one organizational representative put it, “A patient will get over the shock of being told she will go blind once she learns the truth. It won’t hurt her physically, and it’s a way of getting her through our door.”
If the word “blind” needs to be used to inspire a greater fear of AMD, then the disease must not be frightening enough in itself. That is good news for those who have it, and it happens to be true. AMD can be initially devastating, but the patient can ultimately learn that it is not something to fear. It is neither painful nor life threatening, and it can be well-managed with proper education and treatment.
Conclusion
AMD patients must continue to arm themselves with the facts in order to not be misinformed and misled. They must maintain a healthy skepticism by not accepting what they read and hear without examining the evidence and weighing the author’s motivation. Equally important, they must assist in the proper education of others. In this case, that means resisting use of the clinically inaccurate term “blind” when describing AMD. “Visually impaired” may not be as dramatic, and it may require definition for those who are new to the term, but it is at least accurate. It is most certainly easier for the newly-diagnosed to live with.
The AMD community must continue to encourage contributions to research and the necessity of eye exams for everyone. It must, however, find ways to emphasize those points without resorting to fear tactics and unsupported health claims. AMD is not the leading cause of blindness in senior citizens. It is, however, the leading cause of vision loss. That is more accurate and more acceptable to the patient population. No one knows their visual capabilities better than the people who have lived for awhile with AMD. They have now had their say, and it might be to everyone else’s benefit if they are heard.
References:
1 Alliance for Aging Research. Independence for older Americans: An Investment in Our Nation’s Future. (Accessed Nov. 7, 2006 at www.agingresearch.org/brochures/independence/welcome.html.)
2 Rovner BW, Casten RJ, Tasman WS. Effect of depression on vision function in age-related macular degeneration. (Arch Ophthalmol. 2002;120:1041-1044.)
3 www.mdsupport.org
4 Brody BL, Gamst AC, William RA, et al. Depression, visual axis, comorbidity and disability associated with age related macular degeneration. (Ophthalmology 2001; 108 : 1893-1900)
5 “What’s In a Name?” (Royal National Institute for the Blind: www.rnib.org.uk/xpedio/groups/public/documents/ Visugate/public_terminog.hcsp)
6 “Who Is Blind?”, Kenneth Jernigan” (www.haverford.edu/ods/who_is_blind.html)
7 “What Is Macular Degeneration?”, Dan Roberts (www.mdsupport.org/library/md_description.html)
8 www.kellogg.umich.edu
9 www.nlm.nih.gov
10 www.aao.org/aao/education/library/ppp/upload/Age-Related-Macular-Degeneration.pdf
11 www.eyes.uab.edu