BY H. BARRY WALDMAN DDS, MPH, PHD, RICK RADER, MD,
STEVEN P. PERLMAN DDS, MSCD, DHL (HON)
If you have tears, prepare to shed them now… Look! In this place ran Cassius’ dagger through: See what a rent the envious Casca made: Through this the well-beloved Brutus stabb’d… Judge O you gods, how dearly Caesar loved him! This was the most unkindest cut of all.” 1
(Mark Anthony in Julius Caesar – via Shakespeare & Stephen J. Gould)
One reads the prodigious words of Stephen J. Gould in a state of awe (with a mixture of reverence, fear and wonder caused by something mystical, sublime and sacred). Gould was a paleontologist, teacher and writer who died all too soon. He brought together the clashing worlds of baseball, religion, biology, geology, and evolution in an effort to consider our realities from different perspectives.
In his essay, The Most Unkindest Cut of All (referring to the hell of the holocaust in World War II) he used Shakespeare’s telling of Mark Anthony’s speech to relate how Brutus destroyed Caesar, the man who “loved” him. In actuality, he describes how all too often well-meaning efforts take a twist and bring about unforeseen consequences. For example:
Dorothea Lynde Dix (1802-1887) was an author, teacher and reformer. Her efforts on behalf of individuals with mental illness and prisoners helped create dozens of new institutions across the United States and in Europe and changed the public’s perceptions of these populations.
In mid 1830s, she took a job teaching inmates in an East Cambridge prison, where conditions were so abysmal and the treatment of prisoners so inhumane that she began agitating at once for their improvement.2 “Jails were an all-purpose solution for a lot of issues…The downside was that nobody really cared about the people who did not belong there, like those with ‘retardation’ (i.e. intellectual disabilities) who had been abandoned, or people who were mentally ill but not criminals.”3 Prisons at the time were unregulated and unhygienic, with violent criminals housed side by side with individuals with mental illness. Inmates were often subject to the whims and brutalities of their jailers. She found that criminals, people with intellectual disabilities and the mentally ill all lived together in terrible, unheated conditions. When she asked why (unheated), she was told “the insane do not feel heat or cold.”3
During the Civil War she was appointed to organize and outfit the Union Army hospitals and to oversee the vast nursing staff that the war would require. After the war, Dix returned to her work as a social reformer. She continued to write and offer guidance to what was now a widespread movement to reform the treatment of the mentally ill. Old hospitals were redesigned and rededicated according to her ideals, and new hospitals were founded in accordance with the principles she espoused.2 Today, the cultural scenario is much different. “Experts in the 20th century began to say that asylums, a dramatic improvement over jails, were the problem. Horror stories about abuse led to a 90% reduction of residents in mental health facilities; instead the trend became outpatient care and drugs. In 1955, there were almost 560,000 patients in mental hospitals and now there are about 35,000.”3
What also happened after the decline in the number of asylums? “A recent report from Treatment Advocacy Center says there are 10 times more people with mental illness in state prisons and county jails (207,000 and 49,000, respectively) than there are in state mental hospitals (35,000). A jail is the largest single ‘mental institution’ in 44 of 50 states while beds in mental hospitals have declined in the last 60 years.”3
But there are differences between intellectual disabilities and mental illness:
Thoughts are limited by cognitive ability and understanding. and perception.
Disturbances in thought processes and perception. May experience hallucinations and delusions.
Is life-long and will not dissipate.
May be temporary, cyclical or episodic.
Onset occurs prior to 18 years of age.
Onset can occur at any stage of life.
Medication cannot restore cognitive ability.
Medication can be prescribed to control the symptoms.
Assessed by a psychologist.
Assessed by a psychiatrist.4
However, individuals with intellectual disabilities may also have a mental illness or mental disorder. One study in Australia reported that people with intellectual disabilities had a disproportionately higher rate of mental illness than the general population (31.7% vs. 20.0%) and a much lower rate of treatment.5 Reports in the U.S. indicate that, “The (co-occurring) prevalence is conservatively estimated at 33%, with some sources reporting much higher rates.”6
SO WHY INSTITUTIONALIZE AND THEN DEINSTITUTIONALIZE INDIVIDUALS WITH INTELLECTUAL DISABILITIES?
As was noted earlier, “how all too often well meaning efforts take a twist and bring about unforeseen consequences.” Almost 200 years have passed since Dorothea Dix’s efforts began to transform the horrors of jailing individuals with mental illness and placing them in more humane hospitals and institutions. The reality is that almost two centuries ago, advances in medicine and social awareness had not adequately separated mental illness from mental retardation (as it was then described). Placing individuals with intellectual disabilities (if they even were recognized to be different from those individuals with mental illness) in a safe environment with the necessary healthcare services seemed a satisfactory setting for the persons (now known as) with special health needs, their families and the community. It was not until the second half of the twentieth century that we learned of the potential horrors of institutional life; using Shakespeare’s words, “This was the most unkindest cut of all.”
“HEALING” WITH MAINSTREAMING AND COMMUNITY PROGRAMS
The “healing” process includes: mainstreaming children with special needs into school settings and adults with their needs in appropriate work sites, as well as establishing community oriented group residences and enhanced personal family residential settings. The reality is that there are tens of millions of persons with disabilities now living in our communities.
“Approximately 56.7 million people living in the United States had some kind of disability in 2010. This accounted for 18.7 pereparent of the 303.9 million people in the civilian noninstitutionalized population that year. About 12.6 percent or 38.3 million people had a severe disability.” 7
Experience has taught us that advocates for particular causes frequently are those persons who personally have experienced the travails of a particular event or condition. A case in point (at the time of the major deinstitutionalization of the many residents with intellectual disabilities into community setting programs) were events that involved President John F. Kennedy, Eunice Kennedy Shriver and their sister Rosemary Kennedy, who experienced intellectual disabilities and residence in a sheltered environment. The president’s introduction of legislation and personal advocacy for community programs for individuals with intellectual and other disabilities lost momentum with his assassination. Eunice Shriver’s dream for community action for individuals with intellectual disabilities was realized with the exponential growth of the world wide Special Olympics and Healthy Athletes program.
BUT THAT IS ONLY THE BEGINNING
The Americans with Disability Act (ADA) was a major step in assuring equality for individuals with disabilities. So too are the ongoing media and government agency reports to publicize the shortcomings in these efforts. Equally important has been the effort to categorize individuals with varying conditions (i.e. a person-first identification, e.g., a person with an intellectual disability) rather than identifying someone solely on the basis of their condition, e.g. a mental retard.
Mainstreaming is critical from the perspective of individuals with disabilities (particularly in schools) if they are to live life to the limit of their ability. Yet, from the perspective of the other children in the class (and their parents), “those” children are taking too much time and effort away from the rest of the class. There is no simple answer to satisfy all parties, except that the times have changed. The reality is that in the past, individuals with disabilities “did not exist” (they were secreted in institutions, lived in back rooms of homes, were not mainstreamed in our schools or the massive numbers of aged with increasing proportions with disabilities did not live into their 80s, 90s and beyond). Today, they are woven into the fabric of our everyday lives; in our schools, our malls, our offices, factories and the general workforce. They are our children, our husbands and wives, our parents and our friends. To think any other way would be “the most unkindest cut of all.”•
ABOUT THE AUTHORS:
H. Barry Waldman, DDS, MPH, PhD – Distinguished Teaching Professor, Department of General Dentistry at Stony Brook University, NY; E-mail: firstname.lastname@example.org
Steven P. Perlman, DDS, MScD, DHL (Hon) – Global Clinical Director, Special Olympics, Special Smiles and Clinical Professor of Pediatric Dentistry, The Boston University Goldman School of Dental Medicine, Private pediatric dentistry practice – Lynn MA.
Rick Rader, MD is Director, Morton J. Kent Habilitation Center, Orange Grove, Chattanooga , TN and EP Magazine’s Editor in Chief.
1. The Richness of Life: the essential Stephen Jay Gould. (Ed McGarr P, Rose S.) New York: W.W. Norton & Co., 2007.
2. History. Dorothea Dix. Web site: http://www.history.com/topics/womens-history/dorothea-lynde-dix Accessed November 11, 2015.
3. Campbell S. Mental illness and crime: what the legacy of Dorothea Dix hath wrought. Science 2.0 Web site: http://www.science20.com/science_20/mental_illness_and_crime_what_the_legacy_of_dorothea_dix_hath_wrought-138601 Accessed November 11, 2015.
4. A step by step guide to section 32 applications. A project of the intellectual disability rights services. Web site: http://www.idrs.org.au/s32/_guide /p040_4_2_IDandMI.php#.VkNiiNKrTs0 Accessed November 11, 2015.
5. Morgan VA, Leonard H, Bourke J, et al. Population based study. British Journal of Psychiatry, 2008;193(5):364-372.
6. Quintero M, Flick S. Co-occurring mental illness and developmental disabilities Social Work Today, 2010;10(5):6
7. Brault MW. Americans with Disabilities: 2010. Current Population Reports Household Economic Studies P70-131. Issued July 2012. Web site: http://www.census.gov/prod/2012pubs/p70-131.pdf Accessed November 12, 2015.
Source Exceptional Parent Magazine