Inclusion Matters

A graduate of Santa Clara University (MA Education), Robert Fettgather is an associate faculty member at Mission College. Robert Fettgather has taught courses tackling general, developmental, and abnormal psychology. A disability rights advocate, Robert Fettgather helped start the Coalition for Elder and Dependent Adult rights.

Along with other social civil rights movements in the decade of the 1970's, a disability rights movement emerged. Some aspects coalesced into the Americans with Disabilities Act (ADA), passed in 1990...a landmark civil rights law. It was designed to make sure people with disabilities have the same rights and opportunities as everyone else. Think of it like the law saying, “Hey, access matters.” It covers areas like employment, public services, transportation, and public accommodations. As a consequence, businesses and institutions are required to make reasonable changes so people aren’t excluded. Pretty straightforward idea, yet life-changing for so many.

Let's take a look at some basic provisions. The ADA prohibits discrimination against individuals with disabilities in three key domains. Title I addresses employment, requiring employers to provide reasonable accommodations unless doing so would cause undue hardship. Title II applies to state and local governments, ensuring equal access to public programs and services. A third element, Title III, focuses on private businesses open to the public—restaurants, hotels, stores—making accessibility not optional but required. Every doorway and step evaluated for accessibility. It’s about fairness, but also about participation in the everyday life neurotypical folks masy take for granted.

At the same time, the ADA isn’t just legal language—it affects real, everyday experiences. Ramps, captions, accessible websites, service animals in stores… all of that connects back to this law. Some people still debate how far it should go, especially with newer tech, but the core idea hasn’t changed: inclusion matters. Not perfectly implemented, sure. But still essential in a just society.

Movies And Baseball

An associate faculty at Mission College in Santa Clara, California, Robert Fettgather Ph.D. teaches general psychology, abnormal psychology, developmental psychology, and psychiatric interviewing.  Robert Fettgather has co-authored several papers on social issues including disability and elder rights. In his spare time, Robert Fettgather enjoys our National Pastime. 

As the Academy awards pass, it signals the start of another baseball season. So why not consider some movies that feature America’s National Pastime?

A forgotten lead-off flick might be the Warner Brothers produced, The Winning Team. Loosely based on the life of Hall of Fame pitcher, Grover Cleveland Alexander, it stars Doris day opposite…Ronald Reagan. It is said that Reagan trained with Cleveland Indians star pitcher Bob Lemon for the part. Reviews were solid if not stellar, calling the performances “sincere and moving”. You be the judge.

For contrast, consider a popular film that tells (and sells) the story of the All-American Girls Professional Baseball League during World War II. Of course, that’s A League Of Their Own. It features a great comedic performance from Tom Hanks as manager Jimmy Dugan. Famous for the line “there is no crying in baseball”, there is a more profound bit of ballpark lore that begins with a player complaining about how very hard baseball is…to which Hanks responds (here paraphrasing)…”of course it is hard; if it was easy anybody could do it; its hard and that's what makes it great”

Enough said. Action! Play ball!

A Miracle Unfolding

The Institute for Personality and Ability Testing has certified Robert Fettgather as a Stress Management Trainer, and Medical Hypnosis Seminars of the Los Gatos Institute has certified him in Clinical Hypnotherapy. An instructor at Mission College, Robert Fettgather teaches classes in psychology.

There is in every child at every stage a new miracle of vigorous unfolding--Erik Erikson.

Children from 2 to 6  go from oppositional toddlers (the "terrible twos") who  isolate in solitary play to being skilled, and often cooperative playmates by age 5 or 6. Indeed, compare a two year old and a 6 year old and note their vast differences to see what I mean. 

Here we will briefly review the work of two psychoanalytic theorists. Freud and Erikson each described two stages of personality development in early childhood. Let's start with Freud. Remember, for Freud, each stage (oral, the anal, the phallic, the latent, and the genital)  is characterized by an erogenous zone and libido.  Freud described two stages during the preschool years. The first, the anal stage, is dominant between ages 1 and 3 (the ego is developing in this period). Here the child experiences pleasurable sensation of the bowel and bladder. This stage is significant because it typically coincides with the parents’ desire to toilet train the child. Conflicts may arise! 

The phallic stage occurs between ages 3 and 5, during which the Oedipus conflict emerges wherein a boy feels like he is in competition with his father for "possession" of his mother. Resolution of the conflict comes in identification with the same-sex parent. The superego is developing during this stage. Freud suggested that to successfully resolve the Oedipus conflict, relationships between the child and both parents had to be warm and loving. The Oedipus Complex derives its name from a character from Greek Tragedy

Erikson’s stages align with Freud's but have a different emphasis.  Erikson believed that change was  triggered by the new, physical, cognitive, or social skills of the child rather than by changes in psychosexuality as  Freud asserted. Erikson’s stage of autonomy versus shame and doubt centers around the toddler’s new mobility and the ego's  desire for autonomy. As we have consistently noted, these are the so-called terrible twos and can be a challenging time for parents who may respond to normal autonomy with strict and punitive interactions, promoting shame. 

According to Hamachek, adults who developed a healthy sense of autonomy as toddlers:

Like to make their own decisions

Are able to say no without feeling guilty

Resist domination

Like to get things done

Are able to listen to their own inner feelings as they make decisions

Reflection Point: Do you believe autonomy was fostered in your own early childhood? Can you see examples from Hamachek in your adult autonomous behavior?

Guardianship of the Infantilized Elder: A Pipeline to the Institution Industrial Complex?

Robert Fettgather, Ph.D. is a counselor, educator, writer and activist residing in Grass Valley, California.  He holds a doctorate in psychology and master degrees in both psychology and education. Robert Fettgather has served as Special Consultant in psychometrics to the Departments of Education and Developmental Disabilities for the State of California. Robert Fettgather also holds a specialist credential in learning handicapped and community college credentials in both learning and developmental disabilities.

Note: This article was originally published online by the International Network for Critical Gerontology, July 7th, 2017

Chronologies for aging move, by clocks and calendars, from past to future across the lifespan. But not without exception. When it comes to social status for some individuals, time seems to reverse course. Teenagers demanding adult status complain relentlessly over being treated like a young child. We notice a helicoptering parent, babying a third grader with smothering overprotection. This phenomenon has been referred to, psychodynamically, as infantilization-treating an individual as if they were much younger than their chronological age. Earlier in my career, I became interested in the ways that adults with intellectual disability were infantilized, patronized, and robbed of their autonomy (Fettgather, 1987), including how they were given double-binding mixed messages to act like an adult even as they were treated like children (Fettgather, 1989). I am now turning to questions of how elders, especially those experiencing impairments associated with aging, may be diminished by practices associated with a similar social construct.

In recent years, I became acquainted with a legal device, “plenary guardianship”, wherein guardians retain all rights, powers and decisions over wards who are believed to lack capacity to care for themselves. This device seems to mirror the psychosocial experience of infantilization, but with potentially more devastating and permanent consequences. Based on a concept of parens patriae (parent of the nation) dating back centuries, the king had an explicit duty to protect those presumed to lack the capacity for managing their own lives-state sanctioned infantilization. Similarly, the contemporary “plenary guardian” is deemed ‘parent to the elder’ (or intellectually/psychosocially disabled person) who has been determined to lack adult capacity in a socio-legal construction of perpetual infancy-childhood. Plenary guardianship takes all decision-making from the ward and places it in the hands of an all powerful guardian.

In the spring of 2014, I attended the 3rd World Congress on Adult Guardianship. The conference highlighted worldwide, growing concerns and critiques of plenary guardianship. Many contemporary deconstructions of guardianship suggest that too often it is undue, overbroad and overprotective (Martinis, n.d., One Person, Many Choices; Blanck and Martinis, 2015). I argue that even benevolent guardianships may infantilize, fostering dependence and regression. And for elders of means, there is considerable anecdotal evidence of forced isolation with estate plundering by public and professional guardians. US Government Accounting Office Reports (GOA) beginning in 2004 (Government Accountability Office, 2004), and subsequent reports through 2012, show consistent patterns of financial exploitation and neglect. For example, one guardian embezzled $640,000 from the estate of an 87 year old man with Alzheimers Disease. Protective services discovered the man residing in a filthy basement and wearing just an old shirt and a diaper.

Beyond property, the very body of vulnerable elders becomes a commodity in an institution industrial complex that unites private business with government interests with an emphasis on profit making and social control (similar to the prison industrial complex). For example, Liat Ben-Moshe (Ben-Moshe, n.d., The Institution Yet to Come) emphasizes the nexus of impaired mind-bodies with an institution industrial complex dedicated to careerism: “political economists of disability argue that disability supports a whole industry of professionals that keeps the economy afloat, such as service providers, case managers, medical professionals, health care specialists etc”. With the absolute authority of a plenary guardianship, the concern is that guardians may force institutionalization into nursing home facilities where profit is the bottom line-a kind of pipeline into the institution industrial complex. Charlene Harrington, researcher at UCSF investigating care at nursing homes, summed up her findings, “Poor quality of care is endemic in many nursing homes, but we found that the most serious problems occur in the largest for-profit chains” that keep costs low to increase profits (Fernandez, 2011). A 2015 study at Hunter College also found that 12% of guardianships were initiated by nursing homes as a means to collect debt from residents (Bernstein, 2015).

With my colleague, Linda Kincaid, we have addressed elder rights to be free from plenary guardianships leading to chemical restraints (Fettgather and Kincaid, 2013) and forced isolation (Kincaid and Fettgather, 2014). Isolation is often achieved by limiting or denying visitation to hide poor living conditions or inadequate care from public scrutiny. Our current project, at the Coalition for Elder and Dependent Adult Rights, juxtaposes reports of guardianship abuse in GAO Reports and other sources with the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). The project considers current problems in guardianship and institutionalization against criteria of the UNCRPD that seek to “promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedom by all persons with disabilities and to promote respect for their inherent dignity”. We contrast guardianship abuses with UNCRPD articles for equality, privacy, justice, liberty, and freedom from exploitation and torture. In particular, we place special emphasis on Article 12, equal recognition before the law. Article 12 says that “States Parties shall recognize that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life.” Our concern is that plenary guardianship fails the standard of equal recognition before the law, and that alternatives must be vigorously pursued.

In that regard, we align ourselves with an international group of stakeholders who believe that incapacity should not be presumed (Dinerstein, 2012). Alternatively, we are committed to the presumption of capacity and to advancing supported decision-making as an alternative to plenary guardianship for elders and people with intellectual and psychosocial disabilities. In this model, decisions, supported by one or more persons, are made by the individual who has ultimate authority over his/her life. Personhood is honored, with no one acting as surrogate parent. We believe that this approach, with appropriate safeguards, oversight and subject to regular review, will disrupt the pipeline from guardianship to institution industrial complex. It will help reset clocks and calendars for heretofore infantilized adults and restore dignity, autonomy and adult status to the decision-making process.

References

Ben-Moshe, Liat. (n.d.) “The institution yet to come”: analyzing incarceration through a disability lens. Academia.edu, 1-16.

Bernstein, Nina (2015, January 25) To Collect Debt Nursing Homes Are Seizing Control Over Patients. Retrieved from https://www.nytimes.com/2015/01/26

Blanck, P. and Martinis, J. (2015). ‘‘The Right to Make Choices’’: The National Resource Center for Supported Decision-Making. INCLUSION, Vol. 3, No. 1, 24–33.

Dinerstein, Robert D.(2012) “Implementing Legal Capacity Under Article 12 of the UN Convention on the Rights of Persons with Disabilities: The Difficult Road From Guardianship to Supported Decision-Making.” Human Rights Brief 19, No. 2, 8-12.

Fernandez, Elizabeth. (2011) Low Staffing and Poor Quality of Care at Nation’s For-Profit Nursing Homes. UCSF News Center. Retrieved from https://www.ucsf.edu/news/2011/11/11037

Fettgather, Robert (1989).‘Be an Adult’: A Hidden Curriculum in Life Skills Instruction for Retarded Students? Lifelong Learning: An Omnibus of Practice and Research, Vol 12, No.5, 4-5,10.

Fettgather, Robert (1987) The Relationship of Teacher Adult Ego State to Interactions with Retarded Students. Transactional Analysis Journal. Vol 17, No. 2, 35-37.

Fettgather, R. and Kincaid, L. (2013). Chemical Restraint in Long-term Care. Southern California Public Health Conference. Los Angeles, California

Government Accountability Office. (2004). Collaboration Needed to Protect Incapacitated Elderly People (GAO Publication No. 04-655:). Published: Jul 13, 2004. Publicly Released: Jul 22, 2004.Washington, D.C.: U.S. Government Printing Office

Kincaid, L. and Fettgather, R. (2014) False Imprisonment and Isolation in Long-term Care. American Society on Aging Conference, San Diego, California

Martinis, J. G. (n.d.). One person, many choices: Using special education transition services to increase self-directionand decision-making and decrease overbroad or undue guardianship. Quality Trust for Individuals With Disabilities,1-29.

United Nations Convention on the Rights of Persons with Disabilities (n.d.)United Nations, 1-22. Retrieved from