BLINDNESS Some Psychological and Social Implications*
DAVID L. KEEGAN, M.D.I DANIEL D.G. ASH, M.D. 2 TIMOTHY GREENOUGH,Ph.D. 3
Introduction Psychiatrists have a major role to play in the care of people with psychological adjustment problems to physical illness or disability. At times, the task may be neglected or inadequately handled - the opportunity for therapeutic and preventive involvement may be missed because of lack of interest, understanding or research basic to the knowledge of reaction to physical dysfunction. Blindness is a dramatic example where a multitude of myths exist, but there are only scant objective data on the adjustment process itself. Blindness has a precise ophthalmological ~nd legal definition but from the psychological standpoint precision disappears (3)t. The crisis of visual loss has been described by Blank and Riffenburg (1, 16). The stages of the reaction include shock, denial, anxiety, anger and sadness - typical of the reaction to any loss. The adjustment to visual loss has been likened to mourning or grief and the acceptance of a new status (15). Cholden emphasized the ability to 'Manuscript received October 1975. 'Associate Professor, Department of Psychiatry, University of Saskatchewan, Saskatoon, Saskatchewan. 'Clinical Assistant Professor, Department of Surgery (Ophthalmology), University of Saskatchewan, Plains Health Centre, Regina, Saskatchewan. 'Staff Psychologist, Saskatchewan Hospital, North Battleford, Saskatchewan. t A person is considered blind whose central acuity does not exceed 20/200 in the beller eye with correction, or whose visual acuity is limited by a field of vision where the widest diameter subtends an angle of no greater than 20 degrees. Can. Psychiatr. Assoc. J. Vol. 21 (1976)
accept the finality of the visual deficit as a major step to rehabilitation (5). Carroll described the required step in terms of a change of self-concept from a sighted to a visually handicapped self-image (3). The changes of physical function of mobility, communication, technique of daily living plus psychosocial changes surely meet the definition of a crisis of major proportions. Crisis theory in social psychiatry holds that because there is great instability and pain in crisis, the person is open to new learning. This new learning may lead to positive adjustment or maladaptive function (2). Intervention and help for people in the crisis of physical illness may result in a positive outcome and rehabilitation success. The study to be described is partly an attempt to define some aspects of psychological and social adjustment, to assess factors which emphasize better adjustment and to seek out possible vulnerable groups of people for future crisis intervention and preventive psychiatry. Method The subjects were randomly chosen on the basis of time of registration with the Canadian National Institute for the Blind (CNIB) and by definition were declared legally blind and they also had to be adventitiously blind. One hundred and fourteen subjects between 13 and 70 years were interviewed in their home, using a structured questionnaire which included a profile of progression of visual loss, adjustment, coping, and various demographic items. The psychological adjustment was measured by 330 items of the Minnesota Multiphasic Personality Inventory
333
334
Vol. 21, No.5
CANADIAN PSYCHIATRIC ASSOCIATION JOURNAL
(MMPI) which included the Depression, Psychasthenia, and Hysteria Scales. These scales measure symptoms of anxiety, worry, depression and somatic symptoms of psychological origin (7). Emotional dependency was measured by the Leary Adaptation of the MMPI (13). Social function was measured by an 86item adaptation of the Gunzberg social function scale (10). This questionnaire included adjustment measures of mobility, self-help, techniques of daily living, communication, occupation, and employment plus a global score of social adjustment (Social Adjustment Total - SAT). Personality traits were measured by the Cattell 16 PF Inventory recognizing the fact that these subjects had gone through periods of psychological reaction and were often assessed when they were well along the path of visual deterioration (4).
The subjects were grouped for statistical purposes along the dimensions of sex, age, sudden or insidious onset, length of time from declaration, maximum economic level, giving up hope, CNID and rehabilitation involvement. Some of the ophthalmological and medical results will be reported elsewhere. The F test and Duncan's Multiple Range Test (DMRT) were used to assess statistical significance, while the Canonical Correlational Analysis was used for the personality trait values (6).
Results There were 68 men and 46 women in the study population, of whom 78 lived in urban areas and 36 in rural areas. Seventy
had lost their vision insidiously over more than two years and 44 had lost theirs suddenly, in less than two years. There were no differences of significance on adjustment measures between any of these parameters as assessed by the F and DMRT. Subjects declared· blind recently (0-2 years) showed no significant difference on adjustment scores from subjects declared blind longer, either 3-4 years or greater than 5 years. Declaration as a crisis point is further questioned when 80 percent of the subjects indicated their greatest psychosocial distress as being at the onset of visual loss (Figure 1). There was a negative correlation between SAT and the age of Registration as Blind (-0.242), and age of testing (-0.265), both significant p< .01 on the F test. To further validate this finding the youngest age group had the highest social adjustment mean (SAT), significantly higher p< .05 than the age group 36-45 years(Figure 2). The group with the highest maximum economic level attained had the best social adjustment at the time of the study, p < .05, as opposed to those with the lowest economic level. This group also appeared to be much less vulnerable to sliding down the economic ladder as their visual loss continued. The group who had a maximum level of $3,000 - $5,000 annually fared the
TIME OF GREATEST DISTURBANCE (CRISIS)
50
49/114
40
Number
30
of
25/114
People
20
10
13/114 0 Onset
Intervening
Years
Dec l axat Ion
Time of greatest crisis.
Fig. I.
Present
August, 1976
335
BLINDNESS: PSYCHOLOGICAL AND SOCIAL IMPLICATIONS
SOCIAL ADJUSTMENT AS AFUNCTION OFAGE MEAN OCCUPATION SCORE
MEAN SOCIAL ADJUSTMENT TOTAL
MEAN COMMUNICAnON SCORE
6
57.80a
5.00a
.9.62a
26-35
14
53.20ab
7.79b
7.87ab
36-45
13
37.80b
5.01a
5.23b
46-55
18
39.66b
4.84a
4.59b
56-65
45
40.36b
4.78a
4.49b
Over 66
18
47.36ab
4.52a
5.70b
AGE GROUP TESTED (yrs)
NUMBER IN GROUP
Under 25
I
Different subscripts a, b reflect a difference between means on Duncan's Multiple Range Test p< .05 Fig. 2.
worst and were most vulnerable to the drop in income(Figure 3). The 59 subjects who indicated rehabilitation involvement showed significantly better function p< .01, F test, than the 50 who stated no rehabilitation(Figure 4). The most significant variable affecting both psychological and social measures was that of whether the person had given up false hope (acceptors) or had not given up hope of regaining their vision to previous levels (non-acceptors). The 78 acceptors had significantly lower psychological symptoms and higher social adjustment scores than the 36 non-acceptors, p 80). There appears to be a close negative relationship between the SAT and the Dependency and Depression Scores of the MMPI. These latter scales correlate higher than Psychasthenia or Hysteria scales. The personality traits on the Cattell 16 PF of "humble", source trait E, "shy", trait H, "expedient", trait Q3, correlated positively with the increased dependency score reflecting dependent psychological adjustment. The traits of "conscientious", source trait G, "forthright", trait N, and "experimenting", trait Q 1, were positively correlated with increased social adjustment as assessed by Canonical Correlation Analysis. The subjects stated that the responses given are obviously difficult to separate from present function and the perception of the past in the light of the present. Discussion The study appears to indicate that the greatest distress or crisis is at the onset of visual loss rather than at the declaration of blindness. This validates the findings of Fitzgerald who found psychological symptoms of anxiety, anger and depression running high in his subjects for the first ten months following visual loss (8). We found a group similar to Fitzgerald's subjects who have continued psychological distress well after the onset as measured by high depression and dependency scores (9). One-third of Fitzgerald's group had significant symptoms even up to two years following onset. The subjects in our sample who generally had the highest scores on dependency and depression scales and low social adjustment were the non-acceptors who did not give up false hope of regaining their vision. The discovery of this group of non-acceptors tends to validate the earlier subjective findings of Cholden (5)
337
and Carroll (3). People who do not accept the handicap appear to form a group who are vulnerable to prolonged distress and possible maladjustment. Youth appears to protect against poor adjustment, whereas the middle years seem to make it more difficult, particularly in the area of social skills. These findings are very much in line with those of Reed (IS) where earlier onset and younger age were correlated with rehabilitation potential and better outlook. Lukoff and Whiteman (14) found that a combination of independent self-image and independent expectations of others leads to most independent social function in the visually handicapped. It is speculative, but the economic independence measures in this study seem to validate this finding. Certainly the groups who are most dependent on social assistance at the time of their maximum income do poorly on SAT and are vulnerable to an economic down-turn with blindness. The combination of certain personality traits appears to correlate with either psychological dependency or social adjustment. As these assessments were done postillness and post-crisis there may be questions as to how they reflect the pre-illness personality. Cattell feels that these aspects are permanent and stable over time but it is difficult to say how much the changes and psychological reactions may modify the original awareness of self. It will be interesting to seek further validation of this. Some probably vulnerable groups were found - the middle-aged, those with low incomes, those who do not accept visual loss as permanent, those who do not accept rehabilitation and those who are humble, shy and expedient in combination on the Cattell (4). It is difficult to know what leads to this vulnerability, although adjustment and rehabilitation seem to be related to giving up false hope. Also, the middle-aged and the lower income groups may be less flexible to change, and society offers fewer alternatives. It is of concern that the major resource for the visually handicapped, the CNIB, cannot enter the helping role at the time of greatest crisis because it is not involved at the onset
338
CANADIAN PSYCHIATRIC ASSOCIATION JOURNAL
phase which is found to be the most crucial. They cannot become involved until there is a legal definition of blindness. Physicians and ophthalmologists who are available at the time of crisis, and when acceptance should be encouraged, are often not interested or are not informed of the major psychosocial crisis, and thus avoid intervention. At the time of the crisis there should be recognition of the psychosocial sequelae and involvement of knowledgeable resources, including psychiatrists and social workers. The CNIB should be allowed earlier involvement and act as ombudsman for the blind in educating and communicating to the less informed caregivers. Giving up hope of regaining former function appears important. Acceptance of something new, whether positive or negative, requires giving up hope for the old, and learning new concepts. Physicians, ophthalmologists and psychiatrists must develop ways of helping the blind to give up hope in a specific area, yet hold out hope for developing new ways of life. Little is known about this process but it obviously has great relevance to other physical illness and major life changes. Psychiatrists, as agents for change, should be more involved in understanding aspects of acceptance and how to bring it about. Individual and group therapy have been used with blind people to this end (11). Psychiatrists, through consultation services to family physicians and ophthalmologists, may create an awareness of the major crisis of visual loss and the resulting psychological reactions. This may lead to crisis intervention and prevention of future disability by the primary medical caregivers, particularly at the onset and declaration. Psychiatrists should be a part of a psychosocial network so that the visually handicapped person does not slip between the wide gaps existing in the care of the blind. The emphasis for psychiatry is a special understanding of normal and abnormal reactions, rather than that the blind are mentally ill. The greatest fear of the visually handicapped and rehabilitation experts is that when psychiatrists become involved the blind person feels that he has an added stigma.
Vol. 21, No.5
Obviously further psychosocial research is needed. This study has been retrospective with all the problems which this entails. Prospective studies with psychosocial evaluations at the onset of visual loss would provide more evidence as to the nature of past function, psychologic make-up and the exact process of reaction to blindness and the management of this crisis. Operational research into the present services and future new services is required including random samples and wellcontrolled blind studies of different types of psychological intervention with high-risk groups to see if crises could be solved positively for future adaptation. Understanding and knowledge can come only by psychiatrists becoming more involved and adding their expertise to the ranks of the medical and rehabilitative experts who are already helping the visually handicapped. Summary Psychiatry must increase the knowledge of adjustment to various physical disabilities if it is to act in a strong consultant role to medicine and surgery. To this end, the study of one hundred and fourteen adventitiously, declared blind subjects was carried out through structured interviews and psychological and social adjustment measures. The variables were statistically analysed, using the F test, Duncan's Multiple Range test and Canonical Correlation Analysis. The best social function occurred in the youngest age groups, those who had the highest yearly income at the time of maximum life function and who entered rehabilitation. The best psychological and social function was found in those who had given up false hope of regaining vision. The group who had not given up this false hope did poorly on social and psychological adjustment measures and were generally unemployed, coped poorly and did not attend programs in the Canadian National Institute for the Blind (CNIB). The onset of visual loss was found to be the time of greatest crisis, while declaration of blindness in itself led to no particular crisis with associated diminished social or psychological adjustment. Some concern is
August, 1976
BLINDNESS: PSYCHOLOGICAL AND SOCIAL IMPLICATIONS
noted that the CNIB, the major caregiver for the blind, cannot offer assistance at onset because of the legal definition of blindness, and poor service may be furnished by family physicians, ophthalmologists and psychosocial helpers due to lack of understanding, shifting of responsibility and at times, neglect, assuming that the CNIB is assisting when they cannot or are not. More research is needed in all aspects of psychosocial care for the blind. Communicating among helping groups and with the CNIB is imperative if the visually handicapped are to get better psychosocial care. References
I. Blank, H.R.: Psychoanalysis and blindness.
Psychoanal. Q., 26: 1-24, 1957. 2. Caplan, G.: Principles of Preventive Psychiatry. New York, N.Y., Basic Books Inc.,1964. 3. Carroll, T.J.: Blindness: What It Is, What It Does And How To Live With It. Boston, Little Brown Co., 1961. 4. Cattell, R.B., Eber, H.J.: The Sixteen Personality Questionnaire, Third Ed. Champaign, III., Institute for Personality and Ability Testing, 1966. 5. Cholden, L.: Some psychiatric problems in the rehabilitation of the blind. Bull. Menninger Clin., 18: 107-112,1954. 6. Cooley, W., Lohnes, P.: Multivariate Data Analysis. John Wiley & Sons Inc., New York,1971. 7. Dahlstrom, W.G., Welsh, G., Dahlstrom, L.E.: An M.M.P.l. Handbook, Vol. I. Minneapolis, Univ. Minnesota Press, 1967. 8. Fitzgerald, R.G. Reactions to blindness. Arch. Gen. Psychiatry, 22: 370-379, 1970. 9. Fitzerald, R.G.: The newly blind: Mental distress, somatic illness, disability, management. Eye, Ear, Nose and Throat. Mon., 52: 30-56,1973. 10. Gunzberg, H.C.: Progress Assessment Chart 2 of Social Adjustment, S.E.F.A., Teaching Set. Birmingham, England, S.E.F.A. Ltd., 1967. I I. Keegan, D.L.: Adaptation to visual handicap: Short-term group approach. Psychosomatics, 14: 76-78, 1974. 12. Klich De M.B., Wierig, G.J.: Social and emotional adjustment among the blind. Percept. Mot. Skills, 32: 516-518,1971. 13. Leary, T.: "Adjustment Through Docility". In: Interpersonal Diagnosis of Personality, New York, Ronald Press, 1957.
339
14. Lukoff, I., Whiteman, M.: Social Sources of Adjustment to Blindness, Res. Series 21. New York, American Foundation for the Blilnd, 1972. 15. Reed, E.: Factors Influencing Vocational Rehabilitation of the Blind, Monograph. New York, American Foundation for the Blind, 1960. 16. Riffenberg, R.S.: The blind patient. Arch, Ophthalmol., 79: 361,1968.
Resume La psychiatrie doit accroitre une connaissance afin de savoir comment s'adapter a diverses invalidites physiques, si elle doit jouer un role de consultant plus important avec la medecine et la chirurgie. A cette fin, on a entrepris une etude sur cent-quatorze cas, choisis au hasard, declares aveugles, par I' entremise d' entrevues tres structurees et des f'acons de proceder tres psychologiques et sociales. On analysa les changements en se servant de statistiques et en utilisant Ie test F. Test multiple de Duncan et l' analyse de "Canonicale Correlation" . On rencontra les meilleures fonctions physiques dans les groupes des plus jeunes, ceux dont les familles possedaient un revenu annuel plus eleve, et ceci, au moment maximal de leur fonctionnement, et qui deja avait commence leur reeducation. Le meilleur fonctionnement psychologique et social apparut chez les aveugles qui avaient abandonne tout espoir de recouvrer la vue. Le groupe qui ne I'avait pas fait, a reagi pauvrement et son adaptation social en souffrit. Ce groupe, en general en trouva pas d'emploi, et ne savait comment reagir a leur situation et ne participait pas aux programmes de L'ICNA. Le debut de la perte de vision est Ie moment Ie plus eleve de la crise de cecite , alors que la declaration de cette maladie ne conduisait pas en elle-rneme a une crise particuliere, accompagnee d'une association d'ajustement social et psychologique diminuee. On souligne une certaine inquietude, car L'ICNA, I'organisme principal qui s'occupe des aveugles, ne peut offrir son aide ala declaration de la cecite , dfi a la definition legale de cette maladie. De plus, a cause de I'incomprehension de cette
340
CANADIAN PSYCHIATRIC ASSOCIATION JOURNAL
maladie, des services inadequats sont souvent donnes par Ie medecin de famille, I' ophtalmalogistes et des aides psychosociaux, causes par une incomprehension de la maladie, que I'on impute egalement a une jeu de relancement de la balle vis-a-vis la responsabilite et surement a une negligeance de ces derniers services qui prennent pour acquis que L'ICNA, apporte son aide, alors qu'il en est incapa-
Vol. 21, No.5
ble ou qu'il se trouve dans I'impossibilite de Ie faire. Une recherche plus approfondie est necessaire pour envelopper tous ces aspects de soins psychosociaux donnes aux aveugles. Une communication avec d'autres groupes qui offrent leur aide aux aveugles et L'ICNA s'impose, si, les veritables handicappes doivent recevoir de meilleurs soins psychosociaux.
Why, in truth, should J not bear gently the deprivation ofsight, when J may hope that it is not so much lost as revoked and retracted inwards, for the sharpening rather than the blunting ofmy mental edge? John Milton 1608-1674
DAVID L. KEEGAN, M.D.I DANIEL D.G. ASH, M.D. 2 TIMOTHY GREENOUGH,Ph.D. 3
Introduction Psychiatrists have a major role to play in the care of people with psychological adjustment problems to physical illness or disability. At times, the task may be neglected or inadequately handled - the opportunity for therapeutic and preventive involvement may be missed because of lack of interest, understanding or research basic to the knowledge of reaction to physical dysfunction. Blindness is a dramatic example where a multitude of myths exist, but there are only scant objective data on the adjustment process itself. Blindness has a precise ophthalmological ~nd legal definition but from the psychological standpoint precision disappears (3)t. The crisis of visual loss has been described by Blank and Riffenburg (1, 16). The stages of the reaction include shock, denial, anxiety, anger and sadness - typical of the reaction to any loss. The adjustment to visual loss has been likened to mourning or grief and the acceptance of a new status (15). Cholden emphasized the ability to 'Manuscript received October 1975. 'Associate Professor, Department of Psychiatry, University of Saskatchewan, Saskatoon, Saskatchewan. 'Clinical Assistant Professor, Department of Surgery (Ophthalmology), University of Saskatchewan, Plains Health Centre, Regina, Saskatchewan. 'Staff Psychologist, Saskatchewan Hospital, North Battleford, Saskatchewan. t A person is considered blind whose central acuity does not exceed 20/200 in the beller eye with correction, or whose visual acuity is limited by a field of vision where the widest diameter subtends an angle of no greater than 20 degrees. Can. Psychiatr. Assoc. J. Vol. 21 (1976)
accept the finality of the visual deficit as a major step to rehabilitation (5). Carroll described the required step in terms of a change of self-concept from a sighted to a visually handicapped self-image (3). The changes of physical function of mobility, communication, technique of daily living plus psychosocial changes surely meet the definition of a crisis of major proportions. Crisis theory in social psychiatry holds that because there is great instability and pain in crisis, the person is open to new learning. This new learning may lead to positive adjustment or maladaptive function (2). Intervention and help for people in the crisis of physical illness may result in a positive outcome and rehabilitation success. The study to be described is partly an attempt to define some aspects of psychological and social adjustment, to assess factors which emphasize better adjustment and to seek out possible vulnerable groups of people for future crisis intervention and preventive psychiatry. Method The subjects were randomly chosen on the basis of time of registration with the Canadian National Institute for the Blind (CNIB) and by definition were declared legally blind and they also had to be adventitiously blind. One hundred and fourteen subjects between 13 and 70 years were interviewed in their home, using a structured questionnaire which included a profile of progression of visual loss, adjustment, coping, and various demographic items. The psychological adjustment was measured by 330 items of the Minnesota Multiphasic Personality Inventory
333
334
Vol. 21, No.5
CANADIAN PSYCHIATRIC ASSOCIATION JOURNAL
(MMPI) which included the Depression, Psychasthenia, and Hysteria Scales. These scales measure symptoms of anxiety, worry, depression and somatic symptoms of psychological origin (7). Emotional dependency was measured by the Leary Adaptation of the MMPI (13). Social function was measured by an 86item adaptation of the Gunzberg social function scale (10). This questionnaire included adjustment measures of mobility, self-help, techniques of daily living, communication, occupation, and employment plus a global score of social adjustment (Social Adjustment Total - SAT). Personality traits were measured by the Cattell 16 PF Inventory recognizing the fact that these subjects had gone through periods of psychological reaction and were often assessed when they were well along the path of visual deterioration (4).
The subjects were grouped for statistical purposes along the dimensions of sex, age, sudden or insidious onset, length of time from declaration, maximum economic level, giving up hope, CNID and rehabilitation involvement. Some of the ophthalmological and medical results will be reported elsewhere. The F test and Duncan's Multiple Range Test (DMRT) were used to assess statistical significance, while the Canonical Correlational Analysis was used for the personality trait values (6).
Results There were 68 men and 46 women in the study population, of whom 78 lived in urban areas and 36 in rural areas. Seventy
had lost their vision insidiously over more than two years and 44 had lost theirs suddenly, in less than two years. There were no differences of significance on adjustment measures between any of these parameters as assessed by the F and DMRT. Subjects declared· blind recently (0-2 years) showed no significant difference on adjustment scores from subjects declared blind longer, either 3-4 years or greater than 5 years. Declaration as a crisis point is further questioned when 80 percent of the subjects indicated their greatest psychosocial distress as being at the onset of visual loss (Figure 1). There was a negative correlation between SAT and the age of Registration as Blind (-0.242), and age of testing (-0.265), both significant p< .01 on the F test. To further validate this finding the youngest age group had the highest social adjustment mean (SAT), significantly higher p< .05 than the age group 36-45 years(Figure 2). The group with the highest maximum economic level attained had the best social adjustment at the time of the study, p < .05, as opposed to those with the lowest economic level. This group also appeared to be much less vulnerable to sliding down the economic ladder as their visual loss continued. The group who had a maximum level of $3,000 - $5,000 annually fared the
TIME OF GREATEST DISTURBANCE (CRISIS)
50
49/114
40
Number
30
of
25/114
People
20
10
13/114 0 Onset
Intervening
Years
Dec l axat Ion
Time of greatest crisis.
Fig. I.
Present
August, 1976
335
BLINDNESS: PSYCHOLOGICAL AND SOCIAL IMPLICATIONS
SOCIAL ADJUSTMENT AS AFUNCTION OFAGE MEAN OCCUPATION SCORE
MEAN SOCIAL ADJUSTMENT TOTAL
MEAN COMMUNICAnON SCORE
6
57.80a
5.00a
.9.62a
26-35
14
53.20ab
7.79b
7.87ab
36-45
13
37.80b
5.01a
5.23b
46-55
18
39.66b
4.84a
4.59b
56-65
45
40.36b
4.78a
4.49b
Over 66
18
47.36ab
4.52a
5.70b
AGE GROUP TESTED (yrs)
NUMBER IN GROUP
Under 25
I
Different subscripts a, b reflect a difference between means on Duncan's Multiple Range Test p< .05 Fig. 2.
worst and were most vulnerable to the drop in income(Figure 3). The 59 subjects who indicated rehabilitation involvement showed significantly better function p< .01, F test, than the 50 who stated no rehabilitation(Figure 4). The most significant variable affecting both psychological and social measures was that of whether the person had given up false hope (acceptors) or had not given up hope of regaining their vision to previous levels (non-acceptors). The 78 acceptors had significantly lower psychological symptoms and higher social adjustment scores than the 36 non-acceptors, p 80). There appears to be a close negative relationship between the SAT and the Dependency and Depression Scores of the MMPI. These latter scales correlate higher than Psychasthenia or Hysteria scales. The personality traits on the Cattell 16 PF of "humble", source trait E, "shy", trait H, "expedient", trait Q3, correlated positively with the increased dependency score reflecting dependent psychological adjustment. The traits of "conscientious", source trait G, "forthright", trait N, and "experimenting", trait Q 1, were positively correlated with increased social adjustment as assessed by Canonical Correlation Analysis. The subjects stated that the responses given are obviously difficult to separate from present function and the perception of the past in the light of the present. Discussion The study appears to indicate that the greatest distress or crisis is at the onset of visual loss rather than at the declaration of blindness. This validates the findings of Fitzgerald who found psychological symptoms of anxiety, anger and depression running high in his subjects for the first ten months following visual loss (8). We found a group similar to Fitzgerald's subjects who have continued psychological distress well after the onset as measured by high depression and dependency scores (9). One-third of Fitzgerald's group had significant symptoms even up to two years following onset. The subjects in our sample who generally had the highest scores on dependency and depression scales and low social adjustment were the non-acceptors who did not give up false hope of regaining their vision. The discovery of this group of non-acceptors tends to validate the earlier subjective findings of Cholden (5)
337
and Carroll (3). People who do not accept the handicap appear to form a group who are vulnerable to prolonged distress and possible maladjustment. Youth appears to protect against poor adjustment, whereas the middle years seem to make it more difficult, particularly in the area of social skills. These findings are very much in line with those of Reed (IS) where earlier onset and younger age were correlated with rehabilitation potential and better outlook. Lukoff and Whiteman (14) found that a combination of independent self-image and independent expectations of others leads to most independent social function in the visually handicapped. It is speculative, but the economic independence measures in this study seem to validate this finding. Certainly the groups who are most dependent on social assistance at the time of their maximum income do poorly on SAT and are vulnerable to an economic down-turn with blindness. The combination of certain personality traits appears to correlate with either psychological dependency or social adjustment. As these assessments were done postillness and post-crisis there may be questions as to how they reflect the pre-illness personality. Cattell feels that these aspects are permanent and stable over time but it is difficult to say how much the changes and psychological reactions may modify the original awareness of self. It will be interesting to seek further validation of this. Some probably vulnerable groups were found - the middle-aged, those with low incomes, those who do not accept visual loss as permanent, those who do not accept rehabilitation and those who are humble, shy and expedient in combination on the Cattell (4). It is difficult to know what leads to this vulnerability, although adjustment and rehabilitation seem to be related to giving up false hope. Also, the middle-aged and the lower income groups may be less flexible to change, and society offers fewer alternatives. It is of concern that the major resource for the visually handicapped, the CNIB, cannot enter the helping role at the time of greatest crisis because it is not involved at the onset
338
CANADIAN PSYCHIATRIC ASSOCIATION JOURNAL
phase which is found to be the most crucial. They cannot become involved until there is a legal definition of blindness. Physicians and ophthalmologists who are available at the time of crisis, and when acceptance should be encouraged, are often not interested or are not informed of the major psychosocial crisis, and thus avoid intervention. At the time of the crisis there should be recognition of the psychosocial sequelae and involvement of knowledgeable resources, including psychiatrists and social workers. The CNIB should be allowed earlier involvement and act as ombudsman for the blind in educating and communicating to the less informed caregivers. Giving up hope of regaining former function appears important. Acceptance of something new, whether positive or negative, requires giving up hope for the old, and learning new concepts. Physicians, ophthalmologists and psychiatrists must develop ways of helping the blind to give up hope in a specific area, yet hold out hope for developing new ways of life. Little is known about this process but it obviously has great relevance to other physical illness and major life changes. Psychiatrists, as agents for change, should be more involved in understanding aspects of acceptance and how to bring it about. Individual and group therapy have been used with blind people to this end (11). Psychiatrists, through consultation services to family physicians and ophthalmologists, may create an awareness of the major crisis of visual loss and the resulting psychological reactions. This may lead to crisis intervention and prevention of future disability by the primary medical caregivers, particularly at the onset and declaration. Psychiatrists should be a part of a psychosocial network so that the visually handicapped person does not slip between the wide gaps existing in the care of the blind. The emphasis for psychiatry is a special understanding of normal and abnormal reactions, rather than that the blind are mentally ill. The greatest fear of the visually handicapped and rehabilitation experts is that when psychiatrists become involved the blind person feels that he has an added stigma.
Vol. 21, No.5
Obviously further psychosocial research is needed. This study has been retrospective with all the problems which this entails. Prospective studies with psychosocial evaluations at the onset of visual loss would provide more evidence as to the nature of past function, psychologic make-up and the exact process of reaction to blindness and the management of this crisis. Operational research into the present services and future new services is required including random samples and wellcontrolled blind studies of different types of psychological intervention with high-risk groups to see if crises could be solved positively for future adaptation. Understanding and knowledge can come only by psychiatrists becoming more involved and adding their expertise to the ranks of the medical and rehabilitative experts who are already helping the visually handicapped. Summary Psychiatry must increase the knowledge of adjustment to various physical disabilities if it is to act in a strong consultant role to medicine and surgery. To this end, the study of one hundred and fourteen adventitiously, declared blind subjects was carried out through structured interviews and psychological and social adjustment measures. The variables were statistically analysed, using the F test, Duncan's Multiple Range test and Canonical Correlation Analysis. The best social function occurred in the youngest age groups, those who had the highest yearly income at the time of maximum life function and who entered rehabilitation. The best psychological and social function was found in those who had given up false hope of regaining vision. The group who had not given up this false hope did poorly on social and psychological adjustment measures and were generally unemployed, coped poorly and did not attend programs in the Canadian National Institute for the Blind (CNIB). The onset of visual loss was found to be the time of greatest crisis, while declaration of blindness in itself led to no particular crisis with associated diminished social or psychological adjustment. Some concern is
August, 1976
BLINDNESS: PSYCHOLOGICAL AND SOCIAL IMPLICATIONS
noted that the CNIB, the major caregiver for the blind, cannot offer assistance at onset because of the legal definition of blindness, and poor service may be furnished by family physicians, ophthalmologists and psychosocial helpers due to lack of understanding, shifting of responsibility and at times, neglect, assuming that the CNIB is assisting when they cannot or are not. More research is needed in all aspects of psychosocial care for the blind. Communicating among helping groups and with the CNIB is imperative if the visually handicapped are to get better psychosocial care. References
I. Blank, H.R.: Psychoanalysis and blindness.
Psychoanal. Q., 26: 1-24, 1957. 2. Caplan, G.: Principles of Preventive Psychiatry. New York, N.Y., Basic Books Inc.,1964. 3. Carroll, T.J.: Blindness: What It Is, What It Does And How To Live With It. Boston, Little Brown Co., 1961. 4. Cattell, R.B., Eber, H.J.: The Sixteen Personality Questionnaire, Third Ed. Champaign, III., Institute for Personality and Ability Testing, 1966. 5. Cholden, L.: Some psychiatric problems in the rehabilitation of the blind. Bull. Menninger Clin., 18: 107-112,1954. 6. Cooley, W., Lohnes, P.: Multivariate Data Analysis. John Wiley & Sons Inc., New York,1971. 7. Dahlstrom, W.G., Welsh, G., Dahlstrom, L.E.: An M.M.P.l. Handbook, Vol. I. Minneapolis, Univ. Minnesota Press, 1967. 8. Fitzgerald, R.G. Reactions to blindness. Arch. Gen. Psychiatry, 22: 370-379, 1970. 9. Fitzerald, R.G.: The newly blind: Mental distress, somatic illness, disability, management. Eye, Ear, Nose and Throat. Mon., 52: 30-56,1973. 10. Gunzberg, H.C.: Progress Assessment Chart 2 of Social Adjustment, S.E.F.A., Teaching Set. Birmingham, England, S.E.F.A. Ltd., 1967. I I. Keegan, D.L.: Adaptation to visual handicap: Short-term group approach. Psychosomatics, 14: 76-78, 1974. 12. Klich De M.B., Wierig, G.J.: Social and emotional adjustment among the blind. Percept. Mot. Skills, 32: 516-518,1971. 13. Leary, T.: "Adjustment Through Docility". In: Interpersonal Diagnosis of Personality, New York, Ronald Press, 1957.
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14. Lukoff, I., Whiteman, M.: Social Sources of Adjustment to Blindness, Res. Series 21. New York, American Foundation for the Blilnd, 1972. 15. Reed, E.: Factors Influencing Vocational Rehabilitation of the Blind, Monograph. New York, American Foundation for the Blind, 1960. 16. Riffenberg, R.S.: The blind patient. Arch, Ophthalmol., 79: 361,1968.
Resume La psychiatrie doit accroitre une connaissance afin de savoir comment s'adapter a diverses invalidites physiques, si elle doit jouer un role de consultant plus important avec la medecine et la chirurgie. A cette fin, on a entrepris une etude sur cent-quatorze cas, choisis au hasard, declares aveugles, par I' entremise d' entrevues tres structurees et des f'acons de proceder tres psychologiques et sociales. On analysa les changements en se servant de statistiques et en utilisant Ie test F. Test multiple de Duncan et l' analyse de "Canonicale Correlation" . On rencontra les meilleures fonctions physiques dans les groupes des plus jeunes, ceux dont les familles possedaient un revenu annuel plus eleve, et ceci, au moment maximal de leur fonctionnement, et qui deja avait commence leur reeducation. Le meilleur fonctionnement psychologique et social apparut chez les aveugles qui avaient abandonne tout espoir de recouvrer la vue. Le groupe qui ne I'avait pas fait, a reagi pauvrement et son adaptation social en souffrit. Ce groupe, en general en trouva pas d'emploi, et ne savait comment reagir a leur situation et ne participait pas aux programmes de L'ICNA. Le debut de la perte de vision est Ie moment Ie plus eleve de la crise de cecite , alors que la declaration de cette maladie ne conduisait pas en elle-rneme a une crise particuliere, accompagnee d'une association d'ajustement social et psychologique diminuee. On souligne une certaine inquietude, car L'ICNA, I'organisme principal qui s'occupe des aveugles, ne peut offrir son aide ala declaration de la cecite , dfi a la definition legale de cette maladie. De plus, a cause de I'incomprehension de cette
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CANADIAN PSYCHIATRIC ASSOCIATION JOURNAL
maladie, des services inadequats sont souvent donnes par Ie medecin de famille, I' ophtalmalogistes et des aides psychosociaux, causes par une incomprehension de la maladie, que I'on impute egalement a une jeu de relancement de la balle vis-a-vis la responsabilite et surement a une negligeance de ces derniers services qui prennent pour acquis que L'ICNA, apporte son aide, alors qu'il en est incapa-
Vol. 21, No.5
ble ou qu'il se trouve dans I'impossibilite de Ie faire. Une recherche plus approfondie est necessaire pour envelopper tous ces aspects de soins psychosociaux donnes aux aveugles. Une communication avec d'autres groupes qui offrent leur aide aux aveugles et L'ICNA s'impose, si, les veritables handicappes doivent recevoir de meilleurs soins psychosociaux.
Why, in truth, should J not bear gently the deprivation ofsight, when J may hope that it is not so much lost as revoked and retracted inwards, for the sharpening rather than the blunting ofmy mental edge? John Milton 1608-1674
