The Evolution of Disability Rights Litigation (and some stories)

David Ferleger, Esq.

Evolutions in Advocacy, a Brief History: The Bible to Bedlam to Bill Johnson

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• Origins of concern for people with mental illness.
• Early hospitals: Ancient
• England: 1200s to 1800s
• United States: 1700s to 1800s
• United States: Legislation Beginning 1970s
• Consumer/citizen advocacy: Beginning 1970s

Introduction

I welcome you to an experiment in time travel. I invite you to imagine some scenes from ancient Greece, Morocco, Spain, old England, and the United States two or three hundred years ago. I invite you to the United States Congress 30 or more years ago. See in your mind's eye the sights, sounds and other sensations one might have experienced at mental health institutions in the USA or elsewhere, as advocates, consumers/patients, staff or otherwise and the lessons this trip may have for individual, systemic, legislative, policy and other advocacy.²

These scenes are snapshots, intended to facilitate discussion; they are not intended to provide a full history of a complex subject.

Origins

Concern with the needs and rights of people considered to be "disabled" are ancient. Biblical and ancient Roman law express that concern³. The Asklepeia were ancient Greek dream hospitals where priests would prescribe treatment based on the patients' dreams. Hospitals for the so-called "insane" were established by the eighth century in Arabic countries (an asylum in Fez, Morocco early in the eighth century), a section of a hospital was set aside in Europe in the middle ages, 1326, and the first European hospital devoted to mental patients was built in Valencia, Spain in 1409.⁴

England

⁵The infamous St. Mary of Bethlehem hospital⁶, known as "Bedlam," was established in 1247 but did not receive mental patients until 1377 soon after King Edward III confiscated it. It was small. In 1403-4, it held six "insane" patients and three "sane" patients. In the 1600s its census was about 30. In 1676, it was replaced by the larger Moorfields Bedlam.

The new Bethlem was for show, and it was showy. It had public gardens and was modeled on a French palace. Lunatics were on display for a fee, with locals and foreigners coming to look, perhaps after a visit to the zoo animals at the Tower of London. In 1695, Thomas Tryon, an early anti-slavery abolitionist and pacifist, complained about allowing such visits on holy days:

It is a very undecent, inhuman thing to make… a show… by exposing them, and naked too perhaps of either sexes, to the idle curiosity of every vain boy, petulant wench, or drunken companion, going along from one apartment to the other, and crying out; this woman is in for love, that man for jealousy. He has over-studied himself, and the like.⁷

It took several hundred years for English law to become concerned with the conditions in institutions and the procedure for confining people in them. In 1744, Parliament enacted An Act for Regulating Madhouses, which for the first time gave physicians the power to commit.⁸

In a curious precursor to group homes and outpatient commitment, the 1700s and 1800s saw in England not only the creation of small private madhouses but one or two person commitments/confinements for the rich, with the referring physicians often having a financial stake in the facility.⁹

The United States

The United States was not far behind England. Built in Williamsburg, Virginia, the Public Hospital for Persons of Insane and Disordered Minds was the first building in North America devoted solely to the treatment of the mentally ill. It was later named the Eastern Lunatic Asylum and is now a museum of its old days.¹⁰ The first patient was admitted October 12, 1773. The Governor pressed for the facility because he believed science could be employed to cure "persons who are so unhappy as to be deprived of their reason." He was concerned about "a poor unhappy set of people who are deprived of their senses and wander about the countryside, terrifying the rest of their fellow creatures." He proposed a hospital for these unfortunates staffed by doctors who would "endeavour to restore to them their lost reason."

There were 24 cells, each had a strong door with a barred window that looked on a central hall, a mattress, a chamber pot, and an iron ring in the wall to which the patient's wrist or leg fetters were attached. The cells were reserved for dangerous individuals or for patients who might be treated and discharged. In those days, treatment consisted of restraint, strong drugs, plunge baths and other "shock" water treatment, bleeding, and blistering salves. An electrostatic machine was installed. In 1790, the hospital was expanded and, in 1799, two dungeon like cells were dug "under the first floor of the hospital for reception of patients who may be in a state of raving phrenzy."

In 1751, Pennsylvania authorized the Benjamin Franklin-founded Pennsylvania Hospital in Philadelphia to accommodate mental patients. An 1895 history reported:

In the earlier days of the Hospital, even down to quite recent times, the mode of commitment of the insane was so easy and free from formality that a few words hastily scribbled upon a chance piece of paper were sufficient to place a supposedly insane person in the Hospital and deprive him of personal liberty… [After application to the hospital managers or a physician, the person was admitted.] Once in his cells, or quarters for the insane, the patient had no appeal from the opinion of the attending physician."¹¹

Move into the 1800s now. Change did occur, with the mid-1800s "moral treatment" movement urging humane care, open wards, elimination of restraints, friendly relations between staff and patients, and the like, and then – with conditions still inadequate and commitment procedures still unconstrained by legal process – with the social reforms prompted by women such as Dorothea Dix and Elizabeth Packard (the latter a woman committed to an institution by her husband) who pressed for an end to the abusive systems then in place.¹²

The origin of the notion that the state's parens patriae power, the power to protect the patient's own safety or that of others, justifies involuntary commitment came in the Massachusetts' Supreme Judicial Court's decision in In re Josiah Oakes, 8 Law Rep. 123 (1845), on a habeas corpus petition filed on behalf of an elderly Massachusetts resident who was committed to a private psychiatric facility on his parent's application after he married a young woman of "unsavory character" a few days after his wife's death. This is the case most cited by modern courts and writers as the foundation for involuntary treatment.¹³

Late in the Last Century

There is more to the history, of course. These are just some snapshots to set the stage for considering where we are today, against the backdrop of where we were.

For now, let's speed ahead to the third quarter of the last century. Compare these newer snapshots.

In 1975, Congress held a hearings on "Interstate Placement and Traffic in Children and Their Drugging," and "The Improper Drugging of Mentally Ill and Mentally Handicapped Persons," the several-volume report, thousands of pages long, was titled. The Abuse and Misuse of Controlled Drugs in Institutions.¹⁴ Senator Birch Bayh opened the sessions with this comment:

Or investigation is predicated on the view that 'drug abuse' is not limited to unauthorized use of medication by inmates or patients, but also includes forced administration of drugs on unwilling, competent patients and unnecessary use of powerful medications on those institutionalized.¹⁵

It is a measure of the impact which NARPA, and the mental health consumer/patient rights movement, have had nationally that several active early leaders testified to the Congress at that time.¹⁶ In contrast, similar 1961 hearings included as witnesses only mental health and legal professionals, and no consumers/patients (although Dr. Thomas Szasz testified with a consumer-oriented approach).¹⁷

In 1977 and 1979, Congress considered what were then S. 1393 and H.R. 10, eventually enacted into law as the Civil Rights of Institutionalized Persons Act. CRIPA authorized the United States Attorney General to initiate lawsuits on behalf of people in institutions. 42 U.S.C. §1997 et seq.

The United States Justice Department provided the Congress with examples of life-threatening situations in institutions, including "physical abuse of residents and gross neglect of basic medical needs – conditions under which no person in the United States should be forced to exist."¹⁸ The National Association of State Mental Health Program Directors opposed the law as "superfluous" and serving "no purpose" other than clogging the courts.¹⁹ The National Association of Attorneys General also opposed the law.²⁰

Even then, more than 25 years ago, there were many laws on the books protecting the rights of people with disabilities; the names of many of those laws are still familiar today: Rehabilitation Act of 1973, the Developmental Disabilities Assistance and Bill of Rights Act, the Education of All Handicapped Children Act of 1975, for example. In the 1990s, the Americans with Disabilities Act joined the list.

"Contemporary" Mental Health Advocacy in the United States

In the United States, NARPA has grown and flourished as a place in which many personal and policy debates can take place, all reflecting the goings on in the broader society and among mental health advocates, professionals, administrators, consumers, survivors and others.²¹

A few years ago, Rae Unzicker, a beloved NARPA leader, looked at the history of mental health advocacy, from some early civil disobedience and demonstrations in the 1960s and 1970s to the beginning of this century. She noted the varied wellsprings among individuals and groups. Some were based on opposition to psychiatry as a whole, some were oriented to self-help and mutual support, and some had a hybrid conceptual base.

There were debates and divisions. Some defined their efforts as consumer-driven (with the term suggesting recognition of self-definition, self-determination and recognition of rights. Some defined their efforts as those of psychiatric survivors, rejecting the public mental health system and opposing forced treatment of any kind.

Government funding of Community Support Programs, accelerating in the 1980s, contributed to the sharpening of divisions among advocates.

Advocacy programs began to sprout, from Bill Johnson's initial work at a Minnesota institution to legal work such as that by Steven Schwartz and the Massachusetts Center for Public Representation, and the Mental Health Law Project in Washington, DC. Government-funded advocacy began (called PAIMI – Protection and Advocacy for Individuals with Mental Illness) as part of the already-existing advocacy programs for people with developmental disabilities, which had been established in the mid-70's.

This community organizing and work in the 1960s, 1970s, 80s and 90s brought both an outpouring of activism by patients, survivors, consumers and others, hundreds of legal proceedings seeking and generally winning such things as an end for forced labor in institutions, restrictions on the use of seclusion and restraint, parameters regarding forced medication, and remedies for abuse and neglect. Also, courts found a right to a judicial hearing before commitment, and a short litany of commitment hearing rights, such as the right to counsel, was established.

Evolutions

What has changed? What has remained the same?  What are the snapshots we might take today that, 10, 20, 100 years from now would mark our time for those viewing them on what will become of the Internet?

Has there been an evolution on these issues? Or revolution? Or do we "re-volve," that is, turn back again and again to the same or similar places?

A few comments and questions to begin the discussion.

• 30 years ago, there were hundreds of thousands of people in institutions in the United States.²² The number of people in mental health institutions has decreased dramatically and the number of people in prisons has increased.²³ To separate out children for the sake of comparative numbers, 30 years ago, there were 363,000 children and adolescents in mental health, juvenile and other institutions.²⁴ The 1990 Census shows about half that number of young people, 158,118 in institutions.²⁵ What do the census changes mean?
• Alternatives in communities have increased. The one-size-fits-all professionalized outpatient therapist visits of 30 years ago is now just one piece of an array of possibilities. At the same time, we have seen expansion of the 1970s "dangerousness" commitment standard to include various definitions of "danger to self" to which advocates object. We have also seen variations of outpatient commitment laws with yet other commitment standards. What is the nature and benefit (or harm) of community services, of "alternatives," today?
• Physical and other abuse, and neglect, have not ended; one wonders if they ever will. Perhaps there has been an increase in what one might call programmatic or "treatment neglect," in which the more subtle interests of patients/consumers are transgressed. What sorts of restraint, seclusion and other control mechanisms are utilized today? What are the contemporary equivalents of the old styles of treatment, whether those which were punitive, which emphasized moral and humane treatment, the private madhouses, or this century's community services and half-way houses?

I conclude with a question: We've seen a bit of the history. Now, to the future: to what paths do the evolutions in "care" take us as individuals, as advocates, and as a society?

Note: The discussion here selects "highlight" cases or other authorities to describe principles relevant to understanding the legal right which is the subject of this short presentation. This is a starting point for in depth review, not the end point.