The Rise and Fall of the Medical Model of Disability
By Rick Rader and Steven Eidelman
This article uses language that deviates from this publication’s standard of using APA inclusive language guidelines. While the language in the article is used to illustrate the evolution of perceptions about and labels for disabilities and is historically accurate, it may be unintentionally offensive or triggering.
The Inclusive Health Model focuses on the inclusion of all, including people with intellectual and developmental disabilities, in health, medical, and dental policies, procedures, research, trainings, and services.
The Inclusive Health Model is an evolution of the Social Model and the Medical Model.
Throughout time, understanding of societal and medical views of disability and those with intellectual and developmental disabilities changed, starting from a place of wanting to understand, to wanting to treat and ‘fix’, to recognizing that proper healthcare can be a powerful tool towards self-determination and inclusion.
During the Age of Antiquity and the Middle Ages (late 5th to the late 15th centuries) people with disabilities were a highly visible presence in everyday life. There were many old English terms to describe them: the lepre, blynde, dumbe, deaf, natural fool, creple, lame, and lunatic.
In the past, when parents gave birth to children with disabilities they were naturally puzzled. They desperately wanted to know (as do parents today) the “why,” the “how,” and the “needs” to care for them and to protect them. In search of the answers to these puzzles, they didn’t ask the politicians, lawyers, generals, musicians, alchemists, poets, or merchants. They went to the physicians. And the physicians did what they did (and continue to do) — they observed them, described them, studied them, discussed them, treated them, and cared for them. Medicine at the time offered little as a science. Treatments included potions, incantations, bleeding, cupping, and leeching. Centuries before the idea that diseases were caused by pathogens, the theories included the belief that diseases and disabilities were caused by demons, sin, bad smells, astrology, stagnant water, and an imbalance of liquids in the body.
Throughout history, people with disabilities, especially people with intellectual and developmental disabilities (IDD), were devalued by society. They were mistreated, neglected, stigmatized, isolated, and harmed. In order for society to justify their inhumane treatment, they were assigned “social roles” which depicted them as subhuman. They were identified and labeled as menaces, burdens, pitiful, defective, holy innocents, and uneducable. The stigma served as a license for their mistreatment. The general exclusion of people with IDD from mainstream society often meant that many physicians had little or no experience working with people with IDD in their medical training.
Clinicians created and promoted the use of specific descriptive terms and labels. Depending on the level of disability, they were classified as morons, idiots, imbeciles, feeble-minded and mentally deficient. At that time, the terms were not considered derogatory, defamatory, or insulting; they were based on measured capacity, limitations, and functionality. These terms were not intended to be disparaging or belittling; the intention was to inform other clinicians as to the baseline of individuals they were treating or referring. The terms had a shelf-life of about 20 years until pop culture hijacked the terms and used them in negative contexts towards people who did not have an intellectual disability but might have been socially awkward, unattractive, physically impaired, or even shy, modest, or diffident. Society, and not physicians, contributed to the negative perceptions of people with cognitive challenges.
The impact of terminology and the transformation of the acceptance of people with intellectual and developmental disabilities can be illustrated through the evolution of the American Association on Intellectual and Developmental Disabilities (AAIDD), one of the country’s most respected and influential organizations dedicated to promoting the total inclusion of this population. AAIDD was founded in 1876 and its first president was the French physician Édouard Séguin, MD, regarded by many as the father of special education in U.S. The original name of the organization was the Association of Medical Officers of American Institutions for Idiotic and Feeble-Minded Persons. Throughout its history, the name changed in 1906: American Association for the Study of the Feebleminded, 1933: American Association on Mental Deficiency, 1987: American Association on Mental Retardation, and finally, in 2007: American Association on Intellectual and Developmental Disabilities—and remains named that … for now. The name changes were not cosmetic but rather reflected society’s view of people with IDD.
“It is also noteworthy that for many decades the presidents of the association were all medical professionals. This reflected both the willingness and influence of the medical profession and the early need to establish a basic clinical understanding of the complex needs of people with IDD. Mainstream society, including education, training, and inclusion did not play a significant role until a new age of social acceptance changed our thinking after an additional 75 years.”
The so-called Medical Model has been described as “viewing disability as a defect within the individual. Disability is an aberration compared to typical traits and characteristics. To have a high quality of life, these defects must be cured, fixed, or eliminated.” The Medical Model saw the person as a ‘patient,’ and saw ‘disability’ as a defect. There is no doubt that the Medical Model was, in part, responsible for increasing the longevity of people with intellectual and developmental disabilities as it compelled the introduction of many health and medical interventions for people with disabilities. In addition to societal changes inspired by advocacy and advancing perceptions, extended lifespans created the need, the opportunity, and the imperative to begin to view people with IDD beyond the clinical perspective and to appreciate them as individuals with unrealized and unattained potential.
The newer Social Model viewed disability “as the inability to participate fully in home and community life. The Social Model distinguishes between disabilities and impairments. Disabilities are restrictions imposed by society. Impairments are the effects of any given condition. The solution, according to this model, lies not in fixing the person, but in changing our society. Medical care should focus on enhancing our daily function in society.”
“By taking the best tenets of medical care and optimizing opportunities for the full inclusion of the individual in their community setting, we have seen the genesis of the Inclusive Health Model. This has resulted in its recognition as the current best practice. It is a blueprint that has been shown by research and experience to produce optimal results and that is established or proposed as a standard suitable for widespread adoption.”
Video courtesy of Special Olympics
The Inclusive Health Model grew out of the biopsychosocial model of healthcare, a belief and appreciation that illness, health, and disability are the result of an interaction between biological, psychological, and social factors. There is an understanding that to achieve one’s personal goals there needs to be a platform of health and wellness. People need stamina, a positive outlook, confidence, self-esteem, and the ability to process sensory surroundings to reach their fullest potential across the lifespan. The Inclusive Health Model views wellness as the vehicle to achieve all the aspirational endeavors that people have dreamed they could achieve. The Inclusive Health Model is a tribute to the tireless efforts of countless physicians, educators, researchers, advocates, reformers, visionaries, families, and change agents who strived for self-determination, inclusion, autonomy, and independence.
“We call for increased training and support of physicians about intellectual and developmental disabilities. Physicians and dentists, among other health professionals, are a vital component of inclusion of people with IDD and their families into life, for everyone, in our communities. We have come far and have farther to go. The medical community needs to be a part of the journey. We are a long way from the days of a medical model.”
The National Council on Disability, in a July 2021 letter to the Accreditation Council on Graduate Medical Education wrote, “There is robust literature from the United States Surgeon General, the Center for Disease Control and Prevention, the National Institutes of Health, the National Academies of Science, Engineering and Medicine, and leading healthcare institutions and researchers, that acknowledges and confirms the statistically significant sub-optimal treatment for this vulnerable patient population in the healthcare sector. While there is a myriad of contributing factors involved in the health disparities in patients with disabilities (e.g., access, stigma, reimbursement, transportation, economics, and environment), one of the main identified factors is the lack of physician training in the assessment, management, and treatment of patients with disabilities. This lack of training is a noted deficit in both graduate medical education as well as post-graduate clinical training in residency and fellowship programs...”
Hard to imagine anything clearer than this.
And the leadership in the dental profession is on board as well, saying, “The American Dental Association is taking steps to help dentists better care for patients with intellectual and developmental disabilities, including by collaborating with the American Academy of Developmental Medicine & Dentistry (AADMD) and the American Medical Association.”
The Medical Model is in the rear-view mirror and going forward, inclusion in our communities must embrace inclusive physical health and oral healthcare.
About the Authors
Rick Rader is a physician board certified in developmental medicine. His specialty is in creating innovative healthcare delivery programs for people with intellectual and developmental disabilities across the lifespan. He is a co-founder of the American Academy of Developmental Medicine and Dentistry and President of the American Association on Health and Disability. He is the Director of the Habilitation Center at the Orange Grove Center, Chattanooga, Tennessee. Contact Dr. Rader at habctrmd@aol.com.
Steven Eidelman is the Co-Founder and Advisor of the National Leadership Consortium. Steven was also the H. Rodney Sharp Professor of Human Services Policy and Leadership at the University of Delaware. He is a past President of AAIDD and serves as Senior Advisor to the Chairman of Special Olympics International. Steven also serves as the Executive Director of The Joseph P. Kennedy, Jr. Foundation. Contact Steve at sme@udel.edu.