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Reflections on Respect and Caring for Persons with Disabilities: My Sixty-One Years of Alberta History
Jean Pettifor
The topic of my address is neither a presentation of academic
research nor of the personal stories of persons with disabilities. I
look instead at the ever-evolving orientation on what is ethical, at
what we believe is good and right related to living with persons with
disabilities, as reflected in a few historical events. These are
personal reflections on experiences in my brush with history.
Deviates, Medicine, and Management
In September 1948 I was hired as a psychologist for the Edmonton
Guidance Clinic (Mental Health Services), but for the first year was
called a 'social worker' because the Minister of Health allegedly did
not like psychologists - social workers were said to be a little
better, but his first choice was said to be 'psychiatric nurses'.
Ministers seemed a fearful lot then. A friend told me that a secret
investigation of my political views was underway to determine if I was
a communist trying to infiltrate the government in order to bring it
down. Communist hunting was a popular activity of the day, but I could
not believe that I was a threat to anyone, let alone be such a powerful
agent of social change. I can report that the Government of Alberta is
still standing, and so am I.
By then the way in which persons with disabilities in Alberta
were cared for had improved from the days of Bedlam, 'madhouses' and
'insane asylums'. I refer to a description of the arrival of the first
patients at the Provincial Mental Hospital at Ponoka.
The first group of 16 (patients) had arrived
for the opening of the Ponoka Mental Hospital for the Insane on July 4,
1911. The patients walked two by two up the hot dusty hospital road,
tied to each other with loose bands of rope. Several horse drawn wagons
carried individuals in strait jackets. Several days later 164 patients
(108 men and 56 women) were transferred from Brandon, following the
fire.
Yet, in some respects the situation in 1948 still had commonalities with those earlier days.
The first task in my job orientation was to give the Stanford
Binet Intelligence Test (IQ) to patients at the Provincial Mental
Hospital at Ponoka because there seemed to be a policy that every
patient should have an IQ on record. I quickly learned that I could
correctly administer a standard test but that many factors could
interfere with the "subject" engaging in the tests. The Mental Hospital
often had a huge staff member in the testing room. I assumed this was
for my protection should any hallucinations put me in danger. I did not
sense danger. I also thought it ridiculous for me to go through the
motions of testing when we could not communicate with each other
because we were in different worlds. I was expected to read A. F. Tredgold's definitive book on
"mental deficiency," first published in 1908 for physicians and
psychiatrists. The 12th edition was edited by his son in 1979. In 1994
I met a grandchild of A.F. Tredgold who was ashamed of carrying the
Tredgold name because of the grandfather's influence in supporting the
eugenics movement. Intelligence Quotients seemed very important in opening or
closing doors, such as to special services, school placements,
institutional placements, and for eugenic sterilization. I was
increasingly skeptical of the usefulness of IQ ratings without
additional supporting information. My assessment reports often
questioned the validity of the test ratings. The tests were not a
precise measurement of an abstract concept like intelligence. At a
conference in Washington DC in 1967 I heard an aging Jean Piaget
severely criticize American intelligence tests as based on learning and
achievement, whereas problem-solving tasks were a superior way of
evaluating cognitive abilities. I remember attempting to test a young
adolescent who was more interested in the noise from the nearby bar and
knowing whether I was old enough to be allowed to go in for a drink. He
could not list the last four Prime Ministers of Canada let alone
Presidents of the United States. We were expected to classify those whose IQ scores were less
than average as 'dull normal', 'borderline', 'morons', 'imbeciles' and
'idiots'. One result was that professionals learned one could insult
friends or colleagues by calling them such names, a practice that has
not disappeared. Is such name-calling disrespectful of those with
cognitive difficulties, or is it so dissociated from its origins that
such terms are not relevant anymore? Newly into my role I had my first tour of the Provincial
Training School for the Mentally Retarded in Red Deer (PTS), later
named Alberta School Hospital (ASH), and still later in a period of
reform renamed the Michener Centre (1977). Dr. D.L. McCullough, Medical
Superintendent (1931-1949), and his wife, also a physician, were both
highly respected for their work with the 'mentally retarded' (sic), but
they are scarcely mentioned in any history I have found. For my part, I
was taken aback by the massive crowding of beds and the bare floors and
walls. We were told that the trainees only destroyed things and were
too 'retarded' to appreciate pictures or toys, and what might bother us
they would not notice. Besides, bare floors were easier to clean. When a young inmate/patient/client/trainee/resident/guest/
inhabitant - whatever the current terminology - wanted to touch my
necklace I was warned "don't let her touch you- she is schizophrenic!"
All things touchable had been removed. I had not known that I could
catch schizophrenia so easily. To some extent the persons admitted to
institutions were "non-persons" removed from sight and from communities
and often from their own families. If it were known at birth that the
infant would have a major disability, parents were strongly advised to
give the baby up before they become attached as if the baby was a real
person. My first two years consisted of doing intelligence tests until
finally we non-physicians were permitted to talk to clients in a less
controlled/structured manner, but still under psychiatric supervision.
Supervision consisted of 'do this, do not do that', but never the
reasons why. We were indeed the 'paras', 'ancilliaries',
'subordinates', 'hand maidens' of psychiatry and seemingly kept so. I
have administered thousands of individual intelligence tests to
Albertans, supposedly with an eye to discovering and measuring
deficiencies. I began looking for strengths. I still wonder why
'negative' results are called negative when it means 'good that there
are no problems'. Why is it 'positive' to find problems? And talking about measurement, as I advance in age, I wonder
if growing older is not another form of disability that we prefer to
measure quantitatively by chronological age rather than by loss of
function - we love numbers. Parallel with my orientation as a psychologist in the mental
health system was my orientation to the professionalization of
psychology, as a process and structure that encompassed professional
ethics. Professional ethics became my major focus in considering what
is right and good in our interactions with others, and especially where
persons may be vulnerable as a result of disabilities. By some coincidence the year I began employment (1948) was
also the year that the United Nations Universal Declaration of Human
Rights was adopted and which committed nation signatories to maintain
the rights and entitlements of all citizens. The 30 articles defined
the meaning of life, liberty, security, equality, and freedom from
torture, cruel, inhumane treatment or punishment. The Declaration was
preceded in 1945 - 1946 by the Nuremberg trials that disclosed to the
world Nazi Germany's cruel and inhumane experimentation and treatment
of not only Jews, but also of persons with disabilities. What we now
consider to be evil then was justified in the interests of the
purification of the race. Today, questionable treatment of detainees is
justified as in the interests of national security. These events in the
1940s also spurred professions to develop or review codes of ethics. Protests
In commenting on Alberta history of services for persons with
disabilities, one cannot omit the Eugenics Board. I worked in the
Guidance Clinics for 24 years before the Sexual Sterilization Act was
repealed. We were community based rather than institutional, but we did
refer people to the Eugenics Board. My task was IQ testing. The
psychiatrist made the recommendations for admission to PTS in Red Deer,
or referral to the Eugenics Board for sexual sterilization if
individuals met the eligibility criteria and he believed that it was in
their best interests. The rationale presented to us was that these
recommendations were respectful and caring for both the individuals
involved and for society. The 'school hospital' in Red Deer, it was
argued, could provide special care and training beyond what the family
could. For those with 'genetically transmitted diseases' it was
considered in most cases impossible for families to provide minimally
adequate care for child rearing and therefore it was undesirable that
they reproduce. Unfortunately, as we held clinics across the province,
there appeared to be some truth in this argument, but the cause of the
problem might as well have been attributed to poverty and lack of
community resources rather than genetics. There were few support
resources in the community. We encountered tragic cases, including
preventable deaths of infants, where our only recommendation might be
for the community nurse to check in weekly. There were parents who welcomed sterilization for their
adolescent children that might be vulnerable to sexual exploitation in
the community. We were told that all referrals from the community were
voluntary. However, the records show that by 1937 amendments to the Act
allowed for sterilization without consent under some circumstances. In
the 1990s these cases came under legal scrutiny and, to their credit,
many were referred from the institution rather than from the community.
In the 1996 Leilani Muir was successful in suing the Alberta
Government for wrongful sterilization and wrongful confinement. In a
subsequent class action suit the Alberta government finally agreed to
an out-of-court settlement that carried the condition of
confidentiality. I do not know how much the individuals benefited.
Someone discovered that I was from that era and was still alive, and
thought that I should review old IQ test reports in order to prove that
persons of normal intelligence were being sterilized without their
knowledge or consent. Ethically it was unacceptable to come to
pre-determined findings on inadequate evidence. Dr. John M. MacEachran, Head of the Eugenics Board (1929-
1965) has been much maligned in recent years for his support of sexual
sterilization. Horrific reports regarding practices at the PST and the
Eugenics Board came to light in the 1990s. MacEachran otherwise had a
distinguished career. He established the first Department of Philosophy
and Psychology at the University of Alberta in 1909, the first
constitution of Canadian Psychological Association in 1939, and he
received many awards. He resigned from the Eugenics Board in 1965 and
passed away in 1971. I took two philosophy courses from him in the
1940s and found him philosophical, scholarly, gentle, and hardly the
picture that is painted of him today. When I saw a list of members of
the Eugenics Board over time I recognized the names of many eminent
persons. He was not alone as a product of his times. However, there was
much evidence of abuse. Reform
During the 1960s there was much unrest in the government services in
mental health, disabilities, child welfare and education, especially
when journalists brought stories of neglect, incompetence and abuse to
public awareness. We were directed to refuse access to certain
journalists at our guidance clinic offices, although secretly we were
glad someone was willing to publicize the deficiencies in the larger
systems. The Social Credit government made two major moves in an
attempt to quell the discontent - the first by setting up a commission
of enquiry, the second a pilot program. These initiatives were well
received although some cynics considered them to be stalling tactics. The Commission was established in 1968 to conduct a
comprehensive survey of mental health services in Alberta in order to
establish a standard of excellence. At this time Mental Health included
services for persons with disabilities. Dr. WRN (Buck) Blair was
considered an ideal choice to lead the Study. He was the recently
appointed Head of a new Psychology Department at the University of
Calgary, having retired from the military with a rank of Colonel, and
he was a knowledgeable, shrewd, and energetic man of good cheer. His
two reports were seen as a blueprint for change. Buck was thorough in
how he organized his assignment- with study groups, special projects,
consultants, visits, briefs, public hearings. I remember the excitement
of many persons whose voices were finally being heard. During the time of this study an election was held and the
party in power changed. Mental Health in Alberta Volume I was presented
to the Social Credit government in 1969 and Volume II in 1973 to the
more recently elected Conservative government with no mention of the
change in political sponsorship. However it was the new government that
picked up the ball for actual reform, rather than the old one that
initiated the study. Re-reading the 1969 report some 40 years later some thoughts and questions come to mind.
- Blair was extremely careful to recognize the good work of everyone
in the mental health systems (including disabilities) and not to blame
any persons or associations for anything.
- He publically recognized the many persons who contributed to his consultations.
- His 189 recommendations were forthright but primarily administrative; for example, he expressed the need for:
- Services to be expanded at the community level, and not centralized or institutionalized.
- Better co-ordination of services at the community level
- Need for more highly trained staff, and the need for more staff in all services.
- The need for more research and evaluation.
- His chapter on the Sexual Sterilization Act and the Eugenics
Board and the Provincial Training School now raise further questions
for me.
- Why did he seem to have difficulty making suggestions for change
regarding the Sexual Sterilization Act and was it because he did not
want to imply criticism of the status quo?
- Was he aware in the 1960s of any of the abuses that came to light in the legal cases in the 1990s?
- Did he really support sexual sterilization if it was properly regulated?
- Did his recommendations constitute the means of achieving
proper regulation, or were they implicitly the means for discrediting
the Act. He recommended:
- first, a larger Eugenic Board membership of persons more highly
qualified to evaluate the biological and social criteria as a basis for
sterilization,
- second, that those who refer candidates for sterilization be registered as competent with their professional associations,
- third, an executive secretary to co-ordinate information for the Board including current relevant scientific findings.
Buck did not tackle the basic ethical and human rights issues. Also,
as I remember the times, there was little explicit attention in the
professions to codes of ethics. He did provide an excellent condensed
history of the development of mental health services in Alberta from
1909 to 1973.
The second major action of government, a pilot project, was
announced in July 1969. A Calgary and Region Mental Health Planning
Council whereby concerned agencies and groups would establish a plan on
how to implement the recommendations in the Blair Report. When they had
consensus, then the Government would act. Many, many task forces and
committees were set up to define the perfect mental health service
systems for Calgary. Excitement ran high and a multitude of reports
were prepared. I still have copies of most of them. There was also
intense rivalry in the interests of who would get the biggest share of
the government's largess. The Planning Council ceased to function after the Conservative
government replaced the Social Credit one in 1971, and the
Conservatives rapidly repealed the Sexual Sterilization Act and adopted
an Alberta Bill of Rights. The speed of reform was rapid. A new department called Services for the Handicapped was
established separate from Mental Health Services, thus giving
developmental and other disabilities a much higher profile. Personally,
as a mental health employee, it also distanced me somewhat from the new
developments. There was a steady closing down of beds at the Red Deer
institution as community-based services and accommodations were
developed locally. The philosophy had been changing from medical care
to an emphasis on person-centered community based quality of life.
Major developments occurred at places in Calgary such as the Alberta
Children's Hospital, the general hospitals, the Vocational Research and
Rehabilitation Institute, Wood's Homes, the Baker Centre, the Guidance
Clinics, special education programs, professional training programs at
the Universities, and also with various supporting organizations. The
currently named Community Rehabilitation and Disability Studies program
at the University of Calgary has been at the forefront of progress in
education, research and training that emphasizes respect, caring,
equality, fairness and removing artificial barriers in relation to
persons with disabilities. The regionalization of social services and
later of health also increased local decision-making. It is a mighty jump from the institutional days to the
present. Many, many people have been involved in the process. I am
pleased to have contributed my bit to a climate of change. My Retirement to Professional Ethics
In 1989 I retired from Government services in favor of teaching,
consultation, and promoting a moral framework of respect, caring,
integrity and social justice. I had already made major contributions to
development of the Canadian Code of Ethics for Psychologists and its
interpretation for different areas of practice. Nancy Marlett was quick
to involve me with Community Rehabilitation and Disability Studies. I
have now taught dozens of courses on professional ethics for
rehabilitation practitioners, as well as made presentations and
conducted workshops. I am proud to have worked with Susan Cran in
developing the Canadian code of Ethics for Rehabilitation Professionals
(2000). This Code provides an ethics lens for surveying and evaluating
where we have been past, are at present, and determining where we want
to go in the future. When we consider ethical principles, such as
respect and caring for others, we can appreciate how our
interpretations have changed over time. Respect is the cornerstone of professional ethics. Respect is
valuing the worth of human beings for themselves, not for their
achievements, or as a means to an end. The ethical concerns for
consent, confidentiality, privacy, caring, competency, etc. are simply
ways in which we show respect. Respect is more than autonomy and
self-determination, and the goals are more than vocational training and
placement. One must add equality, fairness, and quality of life.
The language we use carries implications for how we show
respect in our perceptions of others. Today we do not use terms such as
'deviates', 'feeble minded', 'aliens', 'lunatics', 'deficients',
'retards', 'cripples', 'dummies'. The use of terms like 'handicapped
persons' is going out of favor if one believes that the handicap is
socially determined even though the impairment may be medical. We have
come a long way in our understanding of the meaning of disabilities,
and subsequently in the use of more respectful language. Today the term
'persons with disabilities' is considered more accurate and more
respectful.
The programs we design carry implications for how we show
respect and how we define our competencies. We have an implicit moral
framework operating. The Universal Declaration of Human Rights (1948)
requires signatory nations to honor and protect the rights and
entitlements of all their citizens. The professional codes of the
helping professions contain a moral framework of Respect for the
Dignity and Autonomy of Persons (some are saying 'of peoples');
Competency or the Welfare of Others; Integrity in Relationships; and
Responsibility to Society. In our Western societies the well-being of
the individual is the first priority. The United Nations addresses the
responsibility to nations, whereas the organized professions assign
responsibility to their individual members. Ethical decision-making is problem solving, choosing what is a
more respectful and caring solution to a dilemma. Dilemmas often
involve the conflicting interests of different people. Who benefits
most from institutional placements - the individual, the family, or
society? Who benefits most from the rule that says lights out at a
certain time? Some simple steps for making ethical decisions can be helpful
on a daily basis. In reviewing past history one can recognize the
goodwill of the players on how to manage persons who were considered
abnormal, but one also wonders whether an ethical framework was
sometimes missing. Here are some steps to take when you are faced with
an ethical dilemma on what is the right thing to do:
- 1. Identify the individuals and groups potentially affected by the
decision and determine for whom you have the greatest responsibility.
- 2. Identify the ethically troubling issues, including the interests of persons or groups that may be affected by the decisions.
- 3. Consider how personal biases, stresses, or self-interest may influence your decisions.
- 4. Consider whether any external or systemic issues have
contributed to the problem and consider whether they can be addressed
in a positive way.
- 5. Develop alternative courses of action and analyze the
short-term, ongoing and long term risks and benefits of each course of
action. When appropriate consult with those who will be affected by
whatever action may be taken.
- 6. Choose a course of action individually or collectively as
deemed appropriate to the situation, after conscientious application of
existing principles, values and standards.
- 7. Act with a commitment to evaluate the consequences of the
course of action and assume responsibility for corrective action if it
is needed.
One of my most memorable workshops was involved persons with
disabilities who used services, service providers, family members, and
administrators - all interested in ensuring good services were being
provided. In their separate groups they were asked to consider how they
know when they are being respected, how they respect others, and
whether they have any suggestions for improvement. Each group reported
back. The nature of the response was dramatic. Everyone said that they
believed in respect. Those with the disabilities wanted to be heard on
their wishes, like not having lights out at nine o'clock when their
favorite TV show came on, or being helped when they did not need help,
or staff using big words instead of words that they could understand.
They claimed to respect staff by being polite, listening, and trying to
understand what the staff wanted. The direct service providers felt
that they were not given credit for all their dedication to providing
good care. The clients should tell them what they want. The families
should not interfere. The administrators should provide better working
conditions and more resources. The families expressed appreciation and
then complaints that, though they know their offspring better that
anyone else, yet no one listens to them. The administrators felt that
everyone hated them, and yet they did not control the budgets and they
allocated money as fairly as they could. No one felt sufficiently
respected, and yet it became clear that better communications within
the systems would enhance respect, understanding and the well-being of
all concerned. I have used a similar format involving representatives of
different cultures, and found it equally useful in increasing
understanding and respect. I leave the question with you, "What is your moral ethical
framework in working and living with persons with disabilities, and how
do you know what is respectful and caring in both your professional
behaviour and your own attitudes and beliefs?" Will a moral framework
be a guide and a lens for seeing the world as we move forward in
today's changing world?
Submitted by Dr Jean Pettifor
Sources
1. Blair, W.R.N. (Buck). (1969). Mental Health in Alberta: A report on the Alberta Mental Health Study, 1968. Edmonton: Government of Alberta, Queens Printer.
2. Blair, W.R.N. (Buck). (1973). Mental Health in Alberta, Volume II. Edmonton: Government of Alberta, Queens Printer.
3. Brown, R. & Neufeldt, A. (2008). Psychologists in the
field of disabilities: Fifty years of innovation and development.
Edmonton: Psymposium, 18 (1), 67-71.
4. Canadian Association of Rehabilitation Professionals (2002). Canadian Code of Ethics for Rehabilitation Professionals. Toronto, Author.
5. LaJeunesse, R. (2002) Political Asylums. Edmonton: The Muttart Foundation.
6. Pettifor, J. Personal papers.
7. Pringle, H. (1997). "Alberta barren," in Saturday Night, Toronto, ON, pp. 30-36,70, 74.
8. Anonymous (1982) William Robert Nelson "Buck" Blair. In J. Pettifor (Ed.). Alberta Psychology Calender 1982, Edmonton, AB: Psychologists Association of Alberta.
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