3.10. An Emancipatory Patient Standpoint Theory

Stories are windows to who we are and who we want to be in the context and structures that re story our story to fit what is expected and denied.

Highlights

• Standpoint in everyday decisions
• Feminist standpoint
• Discovering a patient standpoint as part of making a difference
• Patient standpoint map

Introduction

As I began writing this book, I realized that the combined patient and researcher roles in peer research resonated with the early dual roles of feminist researchers. Feminist standpoint theory, helped to understand the impact on people as they were recruited into patient roles within health systems, just as women were/are recruited roles by patriarchal . More significantly, it helped understand the unique ability of patients to see and analyze concerns in the health system, often more clearly than the health professionals who were bound by their own roles defined by the system.

The most dramatic similarity with feminist standpoint theory was the call for research to begin with the experiences of patients and their struggles to regain their control over their health and health care . As with early feminist research, the ability to study the shared struggle of patients is hampered by the individualized nature of patient experience apart from hospital, long term care and rehabilitation. In this I was lucky because of my foundation within disability, aging and mental health communities that were early leaders of emancipatory movements that challenged health system restrictions and were able to influence alternatives.

In the case studies of new social movements, the insider/outsider advantage of the founders who were able to keep a foot in both marginalized and professional camps defined the successes of the movements. In PaCER, peer research was informed by the presence of some health professionals who were also patients and trained as PaCER researchers. They were able to define the distinct difference between patient experience research done by professionals and that done by patients.

Peer research and the unique partnership between trained peer researchers and participant co researchers was able to hone into the social structures of health care and the political forces that were present that were not apparent to professionals.

This chapter attempts to ‘stand on’ standpoint theory to prepare a simple emancipatory tool that combines the analysis of systems in chapter 9, an emancipatory extension of salutogenesis (chapter 6) and a standpoint theory that enables patients to choose and work toward emancipatory goals. The theory also can identify program and policy characteristics and obstacles to patient ownership of their health and health care. It is also useful for communities and patients looking to find alternative ways of dealing with systemic discrimination. As such it enables people, students, patients and communities to look at options for change and innovation in existing health systems while supporting innovative community and consumer options.

The theory was initiated and developed with the assistance of the Calgary Association of Independent Living as part of their peer support program. It evolved during my thesis as an interpretive tool to address the differences between the new social organizations and their impact on systemic discrimination. Students used the early theory during discourse and narrative analysis of autobiographies to track personal reconstruction of self after disability, illness and loss. most recently it has been a feature in graduate and undergraduate courses related to social change.

Like Salutogenesis it offers an alternative to the deficit or dependent roles of most healthcare models. The theory is a pragmatic strategy using a map of key psychological spaces that were identified through a series of grounded theory studies beginning with the New Social Movements thesis, co design with members of the Calgary Association of Independent Living, student narrative research of autobiographies, Grey Matters and PaCER. What emerged was a social ecology based on collective identity and agency identified from the study of personal and shared stories about overcoming systemic barriers and being heard. The following are examples.

The powerful thing for me is that it isn't about being 'positive' in the face of something cruel and terrible, it's about being real and assertive to have a life in your own hands when so much of the power can be taken away by treatment, illness and even sympathy. (PWLE reviewer of the chapter)

A report of a research project: Patients who participate in peer research respond to the safety of a peer to peer approach to share their stories. Our group said that ‘Telling stories to someone who is like ‘me’ adds to my knowledge about who I am, and what I know’. In group sessions, participants listen to others and respond with their own stories and all gain power and control of new knowledge about their lives. Through being co research participants they describe, explain or evaluate healthcare experience. Through their efforts they become knowledgeable agents in their own right, rather than the source of information that is known by others. Peer research comes from and focuses on questions that would not otherwise get asked.

Introduction to standpoint theory

Feminist Standpoint theory arose from sharing real life stories to create collective identity. In doing so the feminist scholars legitimized everyday experiences of women. They created a movement that challenged the male patriarchy that believed that women’s aspirations were considered misplaced and their problems were seen as a weakness of nature or character faults. (standpoint theory | Definition, Approaches, & Facts)

A patient standpoint theory begins with the basics of feminist standpoint theory recognizing the obstacles to establishing a standpoint theory within health care. A patient standpoint can support emancipatory social science by combining the two key dimensions of empowerment, Identity and agency. Throughout, it addresses how we are recruited into dependent patient roles and the potential to change these roles to become stakeholders in our own health and health care.

The term standpoint in everyday language refers to the stance, perspective or point of view each of us take about issues, opportunities and challenges. You likely have more than one standpoint at any one time depending on what you are doing. These values, beliefs and expectations generally evolve from your history and current circumstances. These standpoints or life scripts develop early in childhood based on our family expectations and they branch out as we encounter and are socialized by the schools we attend, our faith, work, sports, professional training, and friendships.

For example, a student in Community Rehabilitation and Disability Studies, at the University of Calgary might introduce a case study assignment with the statement: I take a social justice standpoint in that I look to the sources of power that render persons with disabilities subjugated. Nursing students might approach the same case study quite differently: As a nursing student, I would be looking for the impact that disability has on overall health and, in particular, the nursing services that might be required. If I were a business student I might take a standpoint that enables me to investigate the case study from a cost effective perspective.

Most of us are not even aware that we make choices and decisions using the values and expectations of family, schools, faith and work. Feminist standpoint theory made this connection apparent: “examining and understanding experience and connecting personal experience to the structures that define our lives” (Hardstock, N. 1998)

Standpoint theory takes this everyday understanding of roles, relationships and systems one step further. Marxist theory, said to be the beginning of standpoint theory, encouraged workers to understand and challenge the forces of capitalism. Modern standpoint theory is also grounded in a collective consciousness or identity as the first step to emancipation. By sharing their experience, women recognize the dominant and systemic forces that have shaped the scope and the boundaries of their lives. Patriarchal systems, not personal inadequacy, hold women in support roles. Subjugation is the result of systemic economic and social discrimination. Collective understanding of the forces that constrain women creates collective energy to challenge power imbalances. Collective research as knowledge generates a perspective of women as told by women ( Nancy Hartsock. 1998).

The researchers and academics who were part of the early feminist movement created disruptive feminist research methods to legitimize the importance of sharing and researching everyday experience through stories. These narratives, in many ways, are similar to the narrative research methods that evolved in the development of peer research.

The publication and dissemination of a shared women’s experience increased awareness of systemic patriarchal forces. These courageous women researchers and academics were both insiders and outsiders. They shared the discrimination of all women, especially within academic patriarchial systems. As researchers they could use the results of their findings to publish legitimate findings of oppression to support the need for social change. ‘We looked both from the outside in and from the inside out...we understood both. [1984: vii]. The feminist political movement used this knowledge to motivate women to construct a collective reality that challenged stereotypes of their lives, their potential and their power. [ New health social movements (standpoint) j.1467-9566.2004.00378.x.pdf]

The following study by Downing and Roush (1985) provides an example of a standpoint theory about women’s move from a passive acceptance of sexism, to a greater understanding of the ways in which sexism has affected their lives. The following four points depict four stages of emancipation

Passive acceptance of traditional gender roles and the belief that traditional gender roles are acceptable.

Revelation, when women question traditional gender roles, and how they may have supported these roles.

Synthesis when women reject traditional gender roles and judge men on a more individual basis.

Active commitment sees collective action and a commitment to social change. Women and men are different yet equal. (Moradi, Subich, & Phillips, 2002).

The following table depicts the similarities and differences between a feminist standpoint and a proposed patient standpoint theory. This table was adapted from principles and practices of current feminist science. It captures established practices of feminist standpoint theory and early indications of a patient and disability standpoint theory.

Table 1: Feminist standpoint and Patient Standpoint characteristics

The above table highlights the obstacles patients face to increase their control over their health and health care. The shaded cells identify the key differences that had to be taken into account when creating a patient standpoint theory. The first and most difficult is the lack of a consistent patient cohort. Most standpoint theory relates to identifiable groups where the difference is stable and lifelong, such as gender, race, immigration status, indigenous heritage. Apart from PWLE with disabling conditions and aging, most patients remain within individualized treatment models that seldom include opportunities to connect with peers during healthcare. Knowledge about health conditions tends to be organized by health professionals and there is little opportunity for sharing experiences and concerns with peers. The use of social media and chat rooms have done much to overcome this gap in patient knowledge and these new connections triggered patient engagement networks. Finally, apart from citizen action groups and health associations, there are few political avenues to voice concerns and suggestions for change. The examples below reflect emancipation.

This whole table causes me to reflect on patriarchal and colonial views on women and other cultures and how they relate to my health conditions. I sometimes feel my present journey is counterintuitive to how I was raised. I’m now examining the matriarchal way in my own culture, the roles we played and how they were erased by colonialism. I've always felt I was in 2 worlds, not quite in one, not quite in the other but then I learned about the concept of 2 eyed seeing and I was able to reconcile things and feel stronger in my beliefs as they evolve. As we joke “Big Aunty Energy.” Guiding Principles (Two Eyed Seeing) (Indigenous reviewer)

I know as a dialysis patient in my 40’s social media opened up my world to people like me, and in turn to Patient engagement opportunities. Review team member.

Experience is not stable even for those with substantial and ongoing contact with the health system. At this time, the first goal of emancipation is about recognizing and acknowledging patients' ability to question and make decisions about personal health and health care and in the process (PRISM/PaCER@ucalgary.ca/part of the team)

A patient and disability standpoint theory

This section draws on a number of parallel research projects: The Calgary Association for Independent living research ( CAIL: RESOURCES) supported an informal grounded theory project to explore how members could analyze everyday stories to understand the obstacles they faced and their goals to overcome the obstacles. Undergraduate and graduate student research used narrative analysis to uncover patient reconstruction stories. The use of basic standpoint theory with the new social organizations to understand standpoint from an social change perspective and finally; the use of standpoint in courses related to social innovation and design thinking.

We start with Jean Baker Miller’s feminist standpoint definition adapted as a patient standpoint. Patients, who are in a subordinate position within a health system, observe and learn what is expected by the healthcare system and professionals in order to navigate the system. Their dependent position is what motivates them to study the system. This perspective is an advantage and patients with chronic illnesses or disabilities become adept at learning what professionals need and want to hear and use this knowledge to retain or regain control.

This aligns with the basic theory of Salutogenesis (chapter 6) which affirms that citizens who use the presence of health related stressors to build and refine personal, program and generalized resources that lead to a sense of coherence about health. Based on their understanding of the condition, patients develop the ability to manage concerns and find meaning to build resilience and confidence.

These standpoint approaches strive for empowerment and new social roles to address JEDI principles (Justice, Equity, Diversity and Inclusion). However, in a medical system, the source of power along with the drivers of compliance are embedded within essential resources that patients rely on. It is not possible for most patients with chronic or complex conditions to risk offending their medical professionals when they might be refused continued care. As peer research such as PaCER continues to move forward, the impact of democratization of healthcare will become more apparent, but first we must pay attention to the complications, social problems and potential opportunities of a patient standpoint theory.

In order to focus on a new Patient Standpoint theory, we have addressed the specific complications within healthcare programs and policies to create four common psychological healthcare situations or spaces that represent:

• being well and competent; Feeling good and in control
• crisis and change; Feeling bad and I’m to blame
• dependence and compliance; Feeling bad but it not my fault, it’s them
• belonging within a new normal; Feel good because of where I am and those who support me

These situations can be identified by simple narrative analysis of patient and pwle stories to uncover identity and agency. We were privileged to be part of a social enterprise that enabled us to track the social impact of PaCER as part of the Strategic Clinical Networks and national research teams. We discovered that when systems support new roles for patients and persons with disabilities, change happens. This innovative partnership created peer research that was listened to by the Healthcare system. Publishing this standpoint theory and new peer research options may help to guide professional and public interest in patient involvement to achieve health transformation. The following are some examples

• Patients were initially excluded from the use of the safe surgery checklist and this led to confusion about what was happening. The safe surgery checklist study significantly changed the role of patients in surgery by informing all patients about the existence the checklist that allowed them to participate in the protocols and this led to improved compliance in using the checklist
• An arthritis project saw peer researchers and physician researchers part of a co design project to develop a patient management app for knee osteoarthritis.
• Patient input into one day breast surgery noted significant patient suggestions for more patient centred education focusing on preparing for surgery and after care.
• Current socialization practices in mental health override patient stories and relationships and when the findings were shared with professionals, they were more aware of the impact of losing personal stories.
• Parents who deliver ‘still’ babies need to connect and mourn loss in natural ways which helped professionals respond differently after delivery.

The production of a collective research voice^[1] enables patients and communities to propose alternative roles, policies and practices. The realization of common experience enables people to see their lives not as their personal fault or deficit. Many problems are social problems within health systems that are not aware of the impact of their criteria, practices and policies.

How to use patient standpoint theory

Most standpoint theory is considered a process that begins with sharing stories of everyday life that challenge dominant oppression and ends with collective action to achieve justice, equity, diversity and inclusion (JEDI). This chapter deals with Standpoint from a patient perspective that recognizes the complexity of patient roles in health systems and the power of narrative peer research in analyzing and challenging existing constraints to achieve JEDI.

Refer to the resource section for details. This experience is included in the RESOURCE SECTION that details not only the experience with the CAIL but a four year study of autobiographies to refine the analysis of stories throughout a life history.

The basic four quadrant map grew during workshops based on the basic map with persons with disabilities, seniors and health and education professionals where we asked people to describe what was happening in each quadrant, the adjectives used to describe the experience, program characteristics, and even colours to describe the quadrants.

The following map represents the basic four section grid with the themes and colours identified. The quadrant labels can be adapted to reflect specific situations. Each axis can adapt by changing the axis labels. For example, while the horizontal axis represents a positive and negative pole, the poles have been named: good, bad; happy, sad; pain free, overwhelmed with pain; upbeat, depressed or the ease, disease continuum of salutogenesis. The vertical axis represents agency and labels such as internal, external; supportive, restrictive; individual, collective agency etc.

When dealing with external control in health situations there are a number of debates. For example, when overwhelmed with pain or loss that places people in the negative side of the grid, the source of control and power is two fold. The external control can be supportive and facilitate positive self regard or it can be negative and increase avoidance of failure or helplessness.

Those with complex health care needs may need to let go and let others help or make the decisions for a spell. Those who brought this to light, felt that it was a conscious decision to prioritize what they could or wanted to be in control of. For them, It was not a learned helplessness, it was a willing suspension of being in charge for a period of time. A reviewer spoke of having to abide by funding regulations in order to meet basic needs even though they restricted her freedom and ability to contribute to advocacy work. A patient standpoint needs to accommodate many layers of power and complexity to be able to represent and adapt to an emancipatory science in systems that are both essential and restrictive. This is one of the intriguing ways that theory opens the door to layered experiences and decision making in health care.

Figure: Basic structure of a patient standpoint map based on positive and negative self regard poles and internal and external locus of control poles.

A route map to get from one place to another.

Standpoint and Systems theories were not part of the early incubation of PaCER because the focus was on explaining and describing patient experience in healthcare systems. Then, the emerging science of engagement pivoted more deliberately to making a difference by focusing on peer research as part of social innovation and social enterprise. This shifted to standpoint theory as goal setting. As a tool in goal setting it soon became apparent that the basic grid was operating primarily at a personal level but the quadrants also spoke to identity and agency within programs, policies and systems.

The basic four quadrant map worked well but it became apparent in the narrative study of autobiographies (as in the Student Autobiography Resource) that stories could begin in one quadrant and end up in another, in fact, journeys often included more than one quadrant. As students continued to map autobiographical stories, we noticed common movement patterns.

• Most patient autobiographies begin in the Blue Competence quadrant of feeling positive and in control. Stories tell of the life they expected before the accident or illness. These stories of expected achievement and competence developed in childhood.
• Stories of the onset of illness and trauma found patients in the RED Crisis and Change quadrant of feeling bad/ negative or defined by deficits while struggling to remain in control. There is generally a high level of anxiety and desperation to leave this space. The stories of blaming, naming and shaming were common.
• For those in the RED Crisis and Change quadrant, the typical story was about reclaiming Competence or the BLUE quadrant. This journey from blue to red and back to blue is also the most common story of patient experience in most qualitative patient experience research.
• Stories about intractable conditions told of fighting to stay in control and, when it was not possible to overcome the condition, the person ‘dropped’ into the GREY quadrant that retained negative feelings of deficit but transferred agency to professionals, social institutions and policy in order to gain external support (most often funding).
• The GREY space of learned helplessness and compliance denotes loss of individual control to the collective external control of compliance with reduced expectations of personal control.
• From GREY, the YELLOW Acceptance quadrant regains positive energy of a new normal, a safe place to be that comes with peer support or discovery of new purpose. Deficits remained but were accepted because of new positive roles and relationships.
• Many stories ended in YELLOW or moved on to return to the initial BLUE Competence quadrant that depicted the full circle of autobiography back to a productive and competent identity and personal agency.

These basic movement patterns provided new focus in creating a Standpoint map that included transitions from one quadrant from one quadrant to another—and another—and another.

• The transition between BLUE and RED combines to create a PURPLE transition that sees illness and disability as a challenge to be conquered. This space is the foundation script of sociologist Art Frank who sees this movement as a hero script. The Wounded Storyteller: Body, Illness, and Ethics, Second Edition, Frank
• The transition from RED to GREY produces a WINE COLOUR transition and is the only other way to leave the RED quadrant. This transition captures resistance and defense mechanisms employed to protect self identity.
• The next transition from GREY to YELLOW produces a GOLD colour and was named Transformation because it includes powerful external forces such as spiritual awakening (gold scripts) and the influence of peers, champions, models or mentors.
• The final transition from YELLOW to BLUE produces a GREEN transition that occurs when people regain enough positive self regard to become agents again and use their new knowledge of illness and peer support to contribute to others.

We then had a basic set of four psychological spaces that reflect health related experiences and four transition strategies that point to where people want to move and how to get there. The Grid had become an active standpoint theory. I then returned to the autobiographies to test out the hypotheses generated by the blending of the colours and realized that the quadrants and transitions depicted most patient journeys. In the past two years, I have also been able to explore the ability of this standpoint theory to support interpretation of peer research.

The final coloured standpoint theory is presented below.

Figure: Full standpoint theory map

The eight facets of the coloured standpoint theory map represents an emancipatory patient perspective of healthcare experience that captures how experience depends on changes in health status and agency. A single patient standpoint based on a common health care experience would be difficult to imagine.

The following tables suggest how a patient standpoint might foster co design, data collection, analysis, interpretation and social innovation. We begin with the four psychological spaces that can be identified by analyzing stories told by patients using the cartesian mapping of identity and agency. This can also be accomplished through discourse analysis of the documents that inform program and system policies and protocols. Program and policy analysis using discourse analysis of online descriptions is included as a RESOURCE: the Sample in the Standpoint analysis that is part of a course on social innovation in health care), protocols or interviews with professionals.

As you consider each facet of the standpoint map, consider how it might be used during co design to identify a main concern or priority for peer research. This might be used in SET focus groups to analyze stories or themes collected as part of co design.

During Data collection and analysis, how might identity and agency criteria be used to compare stories and themes.

During Reflect, how might the map be used to locate themes and categories that relate to the main concern or question of the research.

The Blue / Competence Quadrant

Figure: Blue Quadrant

The Blue quadrant was the first psychological space identified in the study of autobiographies, partly because most autobiographies include a chapter on what life was like before the accident, illness, or loss. This represents their anticipated life story and as such sets the stage for the changes to come with the onset of a disability or health condition.

Blue stories aligned with Atkinson’s motivational theory that captures the basic motive to approach success (MAS). This includes the expectation and probability of succeeding. The MAS appears to be associated with the behavioural activation system, positive emotionality, and extraversion that combine in an approach temperament (Elliot, 2008). Many of us live our entire life in this quadrant, living our anticipated life guided by our expected scripts. It is difficult to realize that this is only one reality if we have never experienced anything else.

However, everyone doesn’t have a history of success or a motivation to achieve. Standpoint theory helped professionals realize that their way of seeing the world as blue might inadvertently inhibit their students and clients from succeeding.

Living the life expected can present long term consequences when serious setbacks occur later in life. When you have lived a life of expected successes you have little chance of building resilience. The concept of errorless learning that was once popular in special education actually harmed children who had expectations of mastery because of ‘their teacher’ and also had little hope of considering how to approach a problem outside of the school environment. Teachers who expect all children to be able to succeed are soon surprised and disappointed by children who don’t respond the way expected. They see these children as not motivated, lazy, and disruptive.

Resilience as social capital

In the senior’s study of resilience one of the key findings was worry that young people don’t have opportunities to risk and to fail and that they will never learn how to be resilient. Seniors had all experienced deprivation and loss as part of two world wars and the great depression. They felt that their childhood experiences had produced social capital of resilience that could be shared with others

The Blue quadrant is important when analyzing programs and policies because it represents the dominant quadrant of many who are health professionals. It is not uncommon for online program descriptions to be written as if clients were motivated primarily by success even through the language used to describe patients and clients reflect the goal of compliance - the good patient.

Red: The Crisis and Change psychological space

Figure: Red Quadrant

The Red quadrant is extremely complex and stressful, it is a crisis, in addition the patient considers herself responsible or at fault. It is a double jeopardy situation. This is the domain of salutogenesis where the decisions we make to stay in control or to relinquish control to others. While stress is to be expected and necessary if we are to build resilience, the dominant discourse of modern healthcare has been shaped by a belief in health science and professional care is needed to detect and handle health issues. While this is basically true, we have become dependent upon health systems for our health. When the internet made medical information accessible and online chat groups made it possible for people to share experiences, patients gained confidence and motivation to have a say in their care. This will all change as the potential for patients to be more engaged in prevention, self management, and monitoring health and health care. As the fourth industrial revolution of digital health materializes, the time is now to reclaim this quadrant by refocusing on the power of feeling in control of issues that make us feel uncomfortable.

The Red or Crisis space most often comes without warning; accidents, trauma, sudden onset infections, or disease. It is also a temporary space, as people struggle to maintain some control during the onset of problems. This is a high energy quadrant and can become dangerous.

The breakthrough of understanding this quadrant came with a group of students studying autobiographies about eating disorders. Not only did they read autobiographies, they also dove into deep web anorexia chat rooms. This challenge was taken up because of the Canadian Mental Health Commission’s report that year had declared anorexia to be the #1 serious mental illness issue because of the high rate of suicide. The first level of analysis dealt with the inherent danger of being in a negative space (here the impression of being overweight) without a way to leave the space. The struggle to assert control over the negative experiences was a vicious cycle of avoiding eating to overcome aversion to one’s appearance. These girls and boys, trapped for long periods in situations where they blame themselves for negative appearance, withdraw from school, work and family relationships, joined deep wave chat lines about losing weight and suicide.

The discomfort when someone lands in this quadrant is visceral and there were many tales of suicide when people were trapped for long periods in situations where they blamed themselves for negative outcomes in their health, their relationships and their work. This is also a standpoint of people highly motivated to escape from the anxiety of being responsible for a threatening medical situation. This motivation is also the source for change. We all are motivated to change when we are unhappy about who we are, and feel that we are in control or have a probability of success.

This quadrant tends to be a short lived space as noted by the lack of stories told about this essential experience with medical concerns. The struggle to understand and to name the condition often precedes the motivation to maintain control and leave the quadrant.

Too close to home

I had been asked to teach the map to a class of special education teachers for a colleague. She took part in the class discussion until we reached the Red Quadrant. She slowly moved to the back of the class and crossed her arms. I quickly ended the class and went to her to find out what was wrong. Her husband had lost his job in the downturn of the Oil and Gas boom. He was a senior executive used to power and control and considered that he could overcome this unexpected setback. He spent months analyzing the firing, working on strategies to convince the company that they needed him, looking for comparable jobs and selling off luxuries. Finally he seemed to lose hope and was found dead by suicide. She was angry with me for not telling her about the dangers of being in control and feeling responsible during a sudden change in identity.

Yvette’s metaphor of an alien land

This metaphor is part of the hidden pathways of chronic illness describing the initial impact of adult onset of life threatening illness, such as cancer, Huntington’s Chorea and ALS as well as conditions considered to be without hope. This is a segment in Hidden Pathways to chronic illness that captures the impact of negative news over which you have no control. You and your family have been away on vacation for two weeks and return to your farm in south eastern Alberta. The sight that awaits you is shocking and surreal. The entire landscape that was once flourishing with undulating green grain fields around the farm is now nothing but fields of pale brown earth with short straw stubble everywhere. As you drive up the driveway toward your home, you are more shocked. The house and outbuildings look starkly naked as there is not a shred of colour visible where the trees, shrubs and garden had been lovingly planted.

All that remains is a moonscape with some tree skeletons standing in the brown earth and the carcasses of hordes of grasshoppers. This scenario might be similar to those confronted with chronic illnesses. Life proceeded as normal and then one day a huge, foreign landscape was before them.

Most patient experience does not focus on this quadrant because there seems to be an assumption that the cure for the anxiety and stress of health concerns is to align with professionals who understand how to manage these situations. This is in part due to the individualized nature of healthcare, there are few options for connecting with patients who could provide support for self help and how to make decisions about care. The fear of losing medical support is often just too great for individuals who would like to be engaged in their health care.

Interestingly, healthcare options such as walk in and private health clinics, complementary health care and online health care are gaining market share because they are more likely to see the patient as a contributor to healthcare and a decision maker. Physicians are also on the front line with digital health and physician clinics that manage care with a combination of digital machine learning protocols and community paramedics and supports. These options embed patient partnership in care.

The Grey / learned helplessness quadrant

This quadrant represents a common quadrant in patient engagement theory. It is the psychological space that occurs when people feel vulnerable, fallible and lost that reinforce the need for professional care. Unfortunately it also has the potential to create long term dependencies as people rearrange their lives around the healthcare they rely on.

Figure: Grey Quadrant

GREY is the second most identifiable psychological space and is the polar opposite to BLUE (the diagonal) space of Competence. GREY captures Atkinson’s motive to avoid failure (MAF) where MAF is defined as a relatively stable personality disposition to avoid and anticipate negative effects of failure outcomes. It is the stable response to loss of control and chronic conditions that are often defined by in terms of shame, embarrassment, humiliation, and loss of status and esteem (McClelland et al., 1953). This avoidance is seen in the stories of experience of many of the clients and patients who had experienced failure and stigma, loss and despair. This history results in little control over the probability of failure or success. The MAF may be associated with behavioural inhibition systems and a learned avoidance temperament (Elliot, 2008).

The title of this quadrant, learned helplessness (Seiglema,1967) was adopted during the early stages of development because much of the development was done with professionals who felt comfortable with the term when working with long term disabilities, chronic illness and disadvantage. It also conveyed the systemic stigma at the hands of bureaucracies and educational systems. The experience of consistent failure produced a strategy of avoiding situations that might lead to failure. This is often interpreted as disruption, low motivation, avoidance all of which reinforce the continued need for external control. Teachers often rely on programs based on reinforcement of good behaviour but forcing people to try to achieve increases the need to avoid potential failure. The standpoint theory from this quadrant would be used in peer support to encourage people to feel good about themselves and thus reduce negative self regard. One might look at the power of paralympics and sport itself to change the negative image of disability and to encourage engagement.

However, when working with people who have complex and severe medical conditions, there was a definite push back to the term ‘learned helplessness’ which, for them, implied that their feelings were not real. Learned Helplessness also failed to recognize that there are times when the pain is just too great, the loss too hard to ignore. During these times, patients need to unplug and let others take over, to retreat and recover. There must be a new name for this reality that doesn’t diminish those who end up in this psychological space, being ashamed and unworthy because of repeated put downs by those trusted to help.

The following examples provide dramatic and extreme GREY situations.

Naming terrorism.

The following excerpts from Dorothy Birtles, founder of the Quaker prisoner befriending scheme lays the foundation of extreme external control in a situation that is fraught with death and pain. Both external locus of control and a certainty of torture and death are dramatic and sadly, still current. Dorothy Begins.

Violence and torture are so highly successful

We need to be shaking in our boots

The pictures, muggled out from a prisoner are excruciatingly painful

These guards are trained to bring these people to their knees

The lowest possible level of human experience

The sexual things are not there by accident

It’s beyond sadism as such

Getting pleasure…..

This small, gentlewoman fiercely believed that all societies are capable of unspeakable terror but it can be faced, studied and countered. The newletters of personal contacts brought torture crashing home,

From one of the prisoners> I spend much of my life in prisons. For six years I was unable to see the sun. Several of my prison friends were executed and we all took our share of it. Our only crime was wanting freedom.

Other similar stories such as House in the Sky unmasks similar examples of systemic terror https://en.wikipedia.org/wiki/A_House_in_the_Sky

Those who end up in GREY because they can no longer fight ‘the systems they rely on’ represent the need for a standpoint theory that can create collective action to challenge systemic discrimination and punitive social policy that restrict personal choice and ignore personal values. It is here that JEDI action comes into play. As more senior and disabled citizens have the options of working and universal basic income replaces welfare payments, the strain of GREY may fade especially as extended productive life years increase.

Yellow Quadrant of Belonging and Acceptance

Figure: Yellow Quadrant

This quadrant has a low profile in a growth oriented economy where everyone is expected to contribute to production. It also provides psychological space for living with a purpose beyond employment. This has been a choice for many living with disabilities and chronic health conditions. The patient and citizen engagement movement relies on people who volunteer to make a difference because working full time may not be possible. Our focus on productivity makes this difficult as people who devote their talents and time to make life better for everyone are subjected to policies that restrict earning and even discourage volunteering instead of working at more ‘appropriate jobs’.

The yellow quadrant is most uncomfortable for those whose work is to ensure that people return to productive employment after injuries or illness. In the past rehabilitation itself focused on employment as the gold standard and used employment statistics to justify rehabilitation professions and programs.

As a rehabilitation professional, I didn’t understand this quadrant but I came to understand that yellow was an end goal for many of the people I worked with. This quadrant also seemed foreign to me. I worried about my own personal lack of experience of belonging, and acceptance. The Yellow quadrant is more than an alternative to employment, it is a space to gain strength and motivation by finding personal achievements. It is the space of peer support and mutual growth. It is a realistic goal for standpoint theory. It is here where identity with ‘others like me’ can lead to wellness.

That said, Yellow is a psychological space relegated to ‘others’ who often are defined within charity discourse or non productive. The science of engagement will hopefully take up the challenges of transformation to support research in these important and neglected spaces.

Balancing a yellow life

This new normal is where I'm at and happy at and even find that many in my team support me not working but instead having the flexibility of volunteer and value of peer support. However it's a big thing that I struggle with knowing that I'm doing the right thing for my physical and emotional health while society as a whole has a discourse that somehow I don't have value or am taking advantage of the system/lazy just because my new normal is better for me. – reviewer

Professionals see Acceptance and Belonging as Malingering

Workers compensation and Disability Insurance professionals at a presentation about the Standpoint grid, were quite happy to name the quadrants and consider the implications for working with clients in the first three quadrants but the last quadrant was met with hostility and anger. They felt that any standpoint needed to be about going the full way, not taking advantage of the system, malingering or challenging long term treatment goals. While I had never related to this quadrant easily, likely because I had worked as a vocational counsellor, I was shocked into reconsidering the value of living a life that had purpose.

This quadrant provides a safe path back to BLUE and a standpoint from this quadrant provides a peer foundation that defines support groups and a standpoint that is invoked when those with serious conditions search for meaning in order to accept their new normal. It is here where identity with others like me can lead to wellness.

Transitions as standpoint stories of emancipation from health concerns.

This section describes the four transitions that mark strategies to regain control and a sense of wellness. The study of transitions took up a great deal of incubator space and focused study and research.

The ‘royal purple’ transition from Crisis to Competence.

This transition is the most common motivation and the most frequently used strategy to overcome obstacles and return to life as it was before illness and trauma. This is the transition of patient education, of finding answers and new ways of living as a way to regain competence. This is the hero script in Arthur Frank’s work. It is also a dominant male script.

Sometimes people become addicted to the high of conquering adversity and health problems, and tempt fate by pushing limits to challenge adversity. This is a high energy transition, it represents the current discourse on the power of medicine to overcome stressors and health concerns.

Deciding to beat off cancer and win the election.

Ed was the leader of a political party and had successfully fought cancer. When he realized that the cancer had returned he made up his mind to work through the cancer no matter what the result. He and his party worked out many ways around the fatigue and pain and Ed continued valiantly defying cancer. Shortly after the election he passed away but had achieved an unprecedented increase in election wins. He died a man of competence, bravery and determination, he achieved his goal and died with the memory of his achievement.

Terry Fox: the Canadian hero and we must carry on.

Terry decided to use his remaining time to make a difference by running across Canada in spite of a prosthesis and active cancer. His determination to continue despite major obstacles struck a chord in the Canadian spirit of never give up. His legacy continues as we respond to his challenge that we continue the fight to beat cancer.

The Wine: Defenses transition

There are two routes out of Crisis and Change, the Wine transition is not normally tried until the person has tried repeatedly to transition through the Challenge transition, the royal purple. Naming and understanding the transition between the Red / crisis and change quadrant and the Grey / learned helplessness quadrant was the last transition to be identified. This transition is seldom recorded in autobiographies or shared with others apart from the despair and the fear of losing control. Much of the search to understand the role of defenses came from focus groups recalling their experience in the Defense transition from the rear view mirror. In groups they were able to share these stories and enjoy the embarrassment and struggle where they would not share these experiences in interviews or surveys.

The solutions found to avoid this loss of control were often seen as a defect or illusion and suggested only in passing. However people caught between an untenable situation (Red category) and the Grey category of helplessness or loss of hope, live in constant turmoil. For many, the potential loss of control (moving down from Red / crisis and change to Grey) is overwhelming and it took much reanalysis to figure out what was happening.

People who live with blame, shame and anxiety ways to protect themselves from new uncomfortable realities through defense mechanisms. I include some of the more widely accepted defenses as examples of some of the strategies that were identified to protect personal control over health and health care.

• Repression and Denial: when faced with a diagnosis or prognosis that causes loss and fear, patients protect themselves and family by tucking the information away and ignoring its existence. Doctors used to encourage families to deny medical information that might be considered too much for the patient to handle. Many families close ranks and don’t let others know about a cancer diagnosis, it becomes a family secret.

This was a common defence for men who couldn’t cope with the thought of not being able to continue to be the head of household. It is also common with cancer when a person feels that the only way to protect family members is to hide the diagnosis and continue life as is. Some cultures hide or ignore disabilities or illness for fear of public shame. Denial is also an effective way to protect promotions and job security.

• Projection: this tends to be used in situations related to mental health concerns where others are blamed for causing the problems, diverting attention away from personal responsibility. The use of projection becomes a defence in many areas of life as it becomes part of a patient secret. The blaming process is not only used by patients but by family members who become complicit in blaming others for family problems.
• Regression: with chronic and degenerative conditions, it is easy to lessen adult expectations and enable patients to relate as they might have done when they were children. Those with dementia are often encouraged to live as a child would to make their life happier and less stressful. Similar stories are told of developmentally handicapped adults who are encouraged to continue with childlike activities and avoiding situations that might become difficult if the adult were expected to live like an adult.
  
• Sublimation: unacceptable impulses are transformed into socially acceptable interests turning negative energy into positive outcomes.

The defensive strategies needed to deal with the anxiety of being caught between crisis and dependence are significant and provide a temporary reprieve between two untenable situations. This category of strategies is difficult to research through autobiographies or traditional qualitative research because defenses are not generally shared as coping mechanisms.

The gold transition, Transformation

This transition is life changing. It is about finding value or connection that enables us to change negative identity to positive self regard. Transitioning occurs when people connect to a power source that can counteract the forces of marginalization and subjugation. Finding a higher power, reconnecting with cultural traditions, reading an inspiring autobiography and disability sports are some of these forces. When connecting with peers, patients realize that they are not unique or alone. People find hope that they might also be able to change their situation when they meet others who have been able to make significant changes in their own lives. This sentiment captures the power of the independent living movement, emancipatory theory and social disability theory.

The stories from disability and adult mental health celebrate peer support such as disabled sport, independent living movement and Club house, not to mention the many advocacy and emancipatory groups that exist in this space. This is a collective space of role models and peer support of those who have overcome adversity and use their experience and expertise to support others.

Greenbank program

Most of the applicants to the Greenbank college came from special schools, specialized institutions, family homes or group homes for the physically disabled. As such many came from a grey standpoint. Greenbank college was a place of acceptance and belonging, run by people with disabilities. Gerry himself was a peer, coming from childhood polio to challenge the education provided by the institution he lived in. Greenbank college was founded on peer support and challenging the systems that subjugated and controlled the options available to disabled youth. Originally I thought that Greenbank was representative of a blue quadrant of competence but the stories of competence were more in keeping with the community wheelchair industry, whole food restaurant and second hand store. Greenbank was in fact an example of standpoint theory, providing time and opportunity to share personal experiences within their living situations. They also were able to challenge the dominant stories of subjugation through their successes in the training colleges through modelling the telling of their stories with Gerry Kinsella and disabled staff as role models.

Wheelchair sports

Gerry worked very hard to avoid being in a wheelchair and struggled to get around with canes and calibers. One evening he attended a wheelchair basketball competition with a friend and became mesmerized by the power, maneuverability and grace of the wheelchairs. He was smitten with a desire to use a wheelchair and to build wheelchairs for racing. He and a disabled colleague who was an engineer designed and manufactured high end racing wheelchairs and used them in fundraising runs

Connecting with a higher power to find meaning is also a common source of transformation. These ‘god scripts’ can be as simple as : God wouldn’t have sent this illness if he thought I couldn’t handle it, or as complex as the need to atone for past life sins in order to move to grace in the next life. These higher power scripts are often minimized by professionals who may be uncomfortable talking about someone’s higher power.

The God Scripts

In one of the narrative analysis classes, I noticed that a large number of students had chosen religious autobiographies. I had formerly ignored the spiritual aspects of their choices but with the large number, I asked if these students might like to focus on ‘god scripts' in their analysis. With autobiographies covering many faiths and cultures this became a highlight of the year. The scripts had such diverse and contradictory messages but the essence remained the same: there are things to learn about life from setbacks, there is purpose in what is happening, you can handle this.

Green transition of Contribution

This transition is about the expertise, the connections and understanding that comes with long term conditions or life changing events. This is also a key transition in standpoint theory, turning knowledge of collective identity into action. Feminist standpoint theory focuses on collective action, the autobiographies and experience working with the Patient Standpoint grid also identified the option of moving from a collective sense of belonging to individual action. This was part of indigenous stories that celebrated the retelling of original stories and living within community with ancestors and the land, while finding ways to use this new traditional strength and wisdom to navigate a white individualistic society.

The key to a green transition lies in the expertise gained within an asset based experience of the yellow quadrant and the willingness to become active in making a difference. There is a large appetite for champions who have experienced a serious health concern, who then write or speak about their experience. Other patients and PWLE use their influence to become involved in advising and research. These generally begin as a volunteer commitment but are no less valued than moving to paid employment.

The other example of this is the growing influence of peer support. There is a growing movement to investing in training and payment of patients who provide support to others. Some examples of peer support workers include.

• Peer Support Canada that works with the Canadian Mental Health Association to certify peer support workers
• A scoping review of peer support workers https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0141122
• The growing interest in Citizen Science in health and health care. Citizen Science for Health | @CtznSci4Health is a broker for health research looking to find engaged patients. https://www.citizenscienceforhealth.org/ provides an overview of the options available.

In summary, the structures and strategies of the above Patient Standpoint theory will hopefully evolve as it is used and adapted to various situations. Like the challenge of Antonovsky, the originator of Salutogenesis, my challenge is to use and adapt this Standpoint theory to health research and, in particular peer research.

Applications of Standpoint theory

Here we look at the use of Standpoint within research conducted as part of this chapter. Notice the startling range of patterns that depict not only the cases studied but the nature of the social innovations. We then look the power of narrative to convey the emancipatory nature of patient standpoint.

Standpoint and New Social Organizations

The following is a summary of the standpoint analysis of the impact of the new social organizations.

Gerry Kinsella and the case study of Greenbank college, a training centre for disabled youth run by disabled people. Gerry was a scrapper, fighting the system in defence of others like him. He was the insider with status because he was a social entrepreneur, earning money as a business to challenge the oppression of the ‘professional disability sector’’.

Gerry was in the Blue quadrant as a media sports hero setting a standard of competence and achievement for his Greenbank team. Originally I thought that Greenbank was also in the Blue quadrant but Gerry was an agent of transformation, guiding and encouraging young people who had come from Grey Quadrant of special schools and medically based programs into Greenbank, a safe Yellow place of acceptance and learning among peers. Eventually, with training, the young people joined competitive, downtown business to contribute to the success of Greenbank by working and mentoring new graduates and eventually moving into main street lives.

Dorothy Birtles, driven by a personal and a spiritual mission as a Quaker, reached out to those tortured and often killed in prisons because of their political beliefs. With a simple act of kindness, she connected caring quakers with prisoners, writing letters of acceptance and belonging and sharing the stories of prisoners with their extensive networks.

Prisoner’s lived in the deep depths of the GREY quadrant, without hope, without any but the smallest sense of control in the midst of torture and extreme brutality. The Befriending scheme was the transforming influence (GOLD) and stories were a transformative source of comfort. Belonging to a story that was larger than torture was definitely a Gold transition and prisoners experienced an unexpected source of belonging and acceptance within a Yellow quadrant that could be considered virtual given the absence of physical connection between UK Quakers and prisoners. For the Quaker correspondents, their normal, everyday blue existence was plunged into pain and suffering of the Red Quadrant but their work brought them back to a new competence and sense of control, not in releasing prisoners but though sharing the power of their stories with others.

Dame Cicely Saunders, the founder of the Modern Hospice Movement and St. Christopher's Hospice.: Dame Cicely began as a nurse, an almoner, and eventually a physician and a palliative pain specialist. Her books were written for families and patients and she expected patients who were dying to write their life’s legacy story for the family. She expected them to set aside the despair and helplessness imposed on the dying to take up the challenge to live until you die. Patients came deep in the grey quadrant with cancer and other terminal conditions in control, with no power to fight that power. This was the only example of patients moving from a Grey quadrant to a Blue quadrant without going through the other transitions. Many patients died in the Blue quadrant.

Henry Enns and Disabled People’s International (DPI) is an international social movement that captured the emancipatory promise of the women’s movement and all of the struggles against systemic subjugation of difference in all forms. It was founded by disabled people who resisted the attempts of the World Rehabilitation Association to control them. Henry was the master storyteller and part of an international coup that located their work at the level of the UN and the declaration of the rights of disabled people.

This new social movement worked in the same fashion that the feminist movement had. Henry and others travelled the world, meeting groups of disabled people and sharing stories of systemic discrimination and the lack of accessibility and services. They also met with the power brokers in each country challenging their policies and practices and building the local capacity to continue the fight.

Within standpoint theory, they acted as GOLD agents of hope and transformation, encouraging those living within neglected segments of society without hope or agency. The DPI provided the positive external control of transformation to help groups come together and build skills in order to become agents of change in their own right through a positive collective sense of positive self regard (Blue). In many ways the original DPI group of disabled men acted like the Women academics as insiders able to bridge to power through their negotiation skills.

Henry Three Suns and the Siksika Nation. Henry had become a social worker to create child welfare solutions that honoured the traditions and family values during the infamous scourge of the 60’s scoop but he refused to see himself as a change agent. His indigenous spiritual and collective approach to life opened an interesting translation of the Grid. He and one of my PhD Students who was indigenous felt that the Blue quadrant was WHITE, as in White races, The Yellow quadrant was Indigenous with external forces of ancestors, generations to come,creator and the land. Grey was the loss of their humanity through alcohol and white ways and Red represented the pain inflicted by white ideas of power and wealth. This positive YELLOW collective existence found a way of living and knowing with White society. The changes in the colours looked strangely like a medicine wheel.

The RESOURCE SECTION by Cera provides an example of standpoint is useful in choosing potential goals / innovations for design thinking. It demonstrates how online program descriptions can be used to identify location on a standpoint theory.

Figure

Using scripts from three of the health systems related to health professionals who experience moral injury: treatment and diagnosis, community inclusion, and peer and natural support, I used standpoint theory to understand where on the grid moral injury patients were at the onset of their moral injury and where on the grid treatment staff or programs attempt to guide patients to healing. The ‘end destination’ of each system was illustrative of what the system defined patient capabilities. In the treatment and diagnosis system patients were not supported in returning to the BLUE quadrant, while in the community inclusion system supports were given to those who were in the GREY quadrant, therefore excluding those in the RED quadrant. Finally, the peer support system supported members in all quadrants but was uniquely able to facilitate a transition from YELLOW to BLUE that the other analyzed systems were unable to do.

RESOURCES

Co designing an emancipatory standpoint theory

Intrigue with power in health and healthcare began for me in a psychiatric unit for aggressive and regressed women. As part of a social innovation called token economies we were able to change the behaviours of these women by providing rewards for ‘good and productive behaviours.’ In the same institution, I was part of challenging dependent roles of patients by introducing a positive checklist that staff had to fill out and report on. We created a work place within the hospital by creating realistic employment expectations.

I continued to develop self assessments and community training programs for disabled adults that built a culture of capacity. This led to changes in institutional programs for profoundly handicapped children and new curricula for the children and training programs for teachers where none had existed in public education. This position led to designing the Community Rehabilitation and Disability Studies program at the University of Calgary, the first of the Canadian Disability Studies programs that was transdisciplinary and focused on creating leaders in community alternatives and advocacy of people living with disabilities and their families.

These experiences confirmed my belief that new social organizations could change the way people saw themselves and related to each other. Then I was jolted further from my beliefs. I joined a new social organization for Independent Living that challenged my assumptions that social change depended upon professional programs and tools. One of our university students was hired to create a program that followed the principles of independent living that included: change the environment not the person; a person with a disability can understand the needs of another; that a person with knowledge and power can make their own decisions. The program accepted all people with disabilities including those who had lived their lives in institutions.

I was so taken aback by the changes in people’s lives that I set out to do my PhD to understand more about how to conduct peer research with social innovators in Canada and the United Kingdom. As I was conducting my PhD, my university students took up the challenge to become engaged in research that looked for the ways people reconstructed their lives after illness, loss, trauma, or from disabling conditions. We developed methods to analyze autobiographies. The result of all three simultaneous activities created a first version of standpoint theory. All three activities were about emancipation and created tools and theory to unpack a standpoint theory that explored a very broad and diverse sector of health. For details of the above, refer to the chapter on social innovation in health through research.

Incubating a self assessment and goal setting tool

The Director of the Independent Living Centre was a student in the Community Rehabilitation and Disability Studies program and knew of my early work with Vecova and how we had used a simple tool to help people with limited language make basic decisions and express feelings (positive and negative feelings). She asked me to help find a way for the members of Calgary Association and Disability Studies to make decisions. She felt that they had been so controlled and diminished by their experiences in institutional care, that they had difficulty understanding their strengths and what they wanted to accomplish. We introduced the Vecova yardstick but it was clear that that linear process was too simplistic. Instead we decided to add a second axis to create a grid system.

The first attempt at creating a self assessment tool

I had been intrigued by self assessment and personality theory early in my career, so we tried the popular polar archetypes of:

Eysenck (introversion/extroversion), https://www.tandfonline.com/doi/pdf/10.1207/s15326985ep3403_3?casa_token=OF24RoDl_I4AAAAA:MMXMASX2nNq1zXfqkoE64Vf1ueV81pMOx6O9am_jgHzXNRKqDUoQf8rwdf_ogsbBbQ2mj8yAIdWL

Atkinson's motivational theory (motive to approach success and avoid failure) (https://www.tandfonline.com/doi/pdf/10.1207/s15326985ep3403_3?casa_token=OF24RoDl_I4AAAAA:MMXMASX2nNq1zXfqkoE64Vf1ueV81pMOx6O9am_jgHzXNRKqDUoQf8rwdf_ogsbBbQ2mj8yAIdWL and finally,

Rotter’s Internal and External Locus of Control). A current application of Rotters Locus of Control https://www.frontiersin.org/articles/10.3389/fpsyg.2020.553240/full. The concept of agency or locus of control seemed to work when combined with the basic positive / negative axis of identity and personal self regard. The intersection of the map axis became a neutral or transition zone of two bipolar opposites.

The personal construct work by Kelly (1955) and concept mapping (Gaines and Shaw https://pages.cpsc.ucalgary.ca/~gaines/pcp/) supported our goal of creating simple, grid structures for basic self assessments. This interest in grid formats has continued and is currently represented through what is referred to as Cartesian mapping that is used to mapp constructs against each other. The above grid as a cartesian map was eventually called a patient and disability Standpoint map. It consists of a horizontal axis related to feeling good or bad (self concept, ease / disease in salutogenesis, self regard, pain depending on the situation) and a vertical axis about locus of control. The quadrants are psychological spaces created by the intersection of self regard and locus of control .

The process of using this simple grid as a self assessment tool had a profound impact on my career. In my former work, I had developed a number of standardized tests and surveys, in particular, the Adaptive Functioning Index (AFI) training and assessment tool. It led to trainees assessing themselves according to a standardized instrument that they had been part of creating.

The Calgary Association for Independent living (CAIL) presented an even more disturbing challenge for me, the role of the test designer and assessor was removed completely. Peer support members chose a story of their experience and identified where the story was located on the grid by plotting where it was located on the horizontal identity grid and the vertical grid of internal and external agency. They then identified where on the grid they would like to reach by plotting how they would like to feel (horizontal) and the control they would like (agency) . This was the inception of Standpoint theory as a tool that could be considered a standpoint that included both identity (horizontal) and agency (vertical) directions. Refer to the following youtube for a quick lesson on plotting coordinates on a grid. The map uses the very basic process https://www.youtube.com/watch?v=s7NKLWXkEEE

Staff and members of CAIL were recruited to experiment with the first primitive grids. Members made statements or told short stories about their experiences that were important to them such as the lady next door has a cat that I played with last night, I have always wanted to be in a place where I could have a cat. I got so angry with my worker because he keeps saying that if I don’t behave he’ll leave me and then what?. They then used a story to think about how it made them feel.

• First they considered the horizontal axis and identified where their story was located along the axis of feeling good or feeling bad, It was not necessary to use numbers, They just estimated the distance from the neutral centre to the end the horizontal coordinates. The questions might be: ‘How do I feel about myself when I tell that story?’ Do I feel good about myself or bad about myself. How good? If the centre is just ok and the right end is better than you have ever felt?’
• They then considered where the story was located along the vertical axis that asked the question, ‘where am I? Am I in control of this, or are others in control (internal /external axis( locus of control axis)? If it is the ‘welfare system rules’ that are in control, how much control do they have along the up and down axis, from none to more control than I can imagine.
• They then connected the marks as one would plot a place on a map. This mark ended up in one of the quadrants that identified where they felt they were at the time of the story in terms of their identity (good or bad) and agency (locus of control).

They now knew where they stood when the story unfolded. They could then discuss how they felt with language about feelings and their hopes for being in control. They were supporting each other in telling and thinking about their stories. For example,

• When that happened I was feeling good and in control of what happened
• When that happened I was really messed up and it was all my fault
• When that happened I was not happy with myself but it was because I was stuck in that group home that wouldn’t listen to me
• When that happened I knew I was doing the best I could and the guys there to give me a hand that I can count on.

This created a communication and planning tool for people who were learning about their feelings. The tool also suggested that it might be possible to have control over what happened to them. It was not long before we realized that this small self assessment tool was also able to identify the nature of the environments that people lived in.

• Pete had spent most of his childhood in a behavioural unit. When asked about the unit, he was clear when using the tool.
  • They made me feel like shit, they always noticed how I screwed up, it was like they had shit radar—This clearly defined feeling bad and not in control, ‘they’ were in control
• Joan, talking about living on her own for the first time.
  • I have my cat and I’m learning to cook I decide when I go to bed and what I eat for breakfast—All of these elements of her experience demonstrated a situation of being in control and feeling good about herself.
• Megan, talking about her weight in a hospital setting
  • I try everything I know to lose weight, but no matter how hard I try I look fat and ugly—in control and hating herself.
• Tony, about playing wheelchair basketball.
  • I was so lucky to meet Jim, I’m now part of the team and my life has turned around—Lucky to be part of a team supported by others and doing well. The team is external control that brings comfort and a positive identity

The most important part is the ability to think about identity and agency and that each person makes meaning through discussing it with their peers. For example, treatment is not always institutional, basketball is not always a team experience, anorexia may not always lead to hospitalization and death, and being on your own may also be lonely and frightening.

This tool soon became a power for personal change. Individuals could share experiences that were disempowering. They could identify how they wanted to change with the natural support of peers. We could also use this at the program level. We could see how our expectations and structures created roles, relationships. We could also build personal agency (internal locus of control) and self regard (the good bad axis) by creating different expectations within the program. It was a clear representation of peer support.

To end on a short story about J.

J was a physically disabled woman who was overweight. She was quite worried about her size and wanted to lose weight but she came from a large family and the only times she was invited to visit was for family meals. Her mother was proud of her cooking and cooked very traditional high calorie food. She said she felt very bad about her weight and that she placed herself at the negative end of the horizontal axis. However, when she considered the vertical axis, she placed herself as in control, as she talked about this, she felt she couldn’t miss her family meals, and her mother would be very insistent that she ate her food. While this did not change her behaviour with her family, she clearly understood the external force that her family and her mother exerted. J knew she could make the hard decision to take control and this realization meant that the decision was hers.

The above story was included because it captures what happens when people are trusted to evaluate their own situations, identify possible goals and then weigh the options. As an emerging standpoint map or grid, it was shared in community settings, practicums and classes on social construction and capacity building, along with conference presentations and professional meetings with educators, nurses, psychologists. As these groups experimented with the standpoint grid, the nature of the grid shifted and responded to the different applications.

Summary

Now that we have completed the chapter I invite you to return to the Hidden Pathways and use the grid to locate the paths in the quadrants. You will notice that the transitions are not generally found because the research focused on experiences.

This chapter introduces a first attempt at a standpoint theory grounded in the complexity of healthcare systems. In teaching this theory students were able to locate the quadrant that best described the exp

End Notes

1. A collective research voice is the end product of PaCER research. It denotes that the findings were created by with and for patients throughout the entire research process. ↑