By James R. Thompson, PhD

All doctoral students and faculty in the Department of Special Education at the University of Kansas participate in specializations. The six specializations include the Strengths Based and Inclusive Approaches to the Education of Adolescents with Extensive and Pervasive Support Needs sequence of which I co-lead. I suspect that our specialization has the longest program sequence name in the entire field of education and it doesn’t exactly roll off the tongue. Because several of us have had a hard time getting the full name correct when asked, we’ve started calling it Strengths Based Inclusive for short.

KU Department of Special Education website

Leaving the length of the name aside for a moment, there are probably many people outside of the field of special education, and perhaps some inside as well, who might be curious about our focus on “strengths”.  After all, our doctoral sequence is intended to prepare scholars whose future work concerns children and adults with disability diagnoses that are consistent with intellectual disability and related developmental disabilities. Isn’t that population different from the general population because of their deficits?

The definitions that are used for diagnoses of disability clearly suggest that evidence of a deficit is a distinguishing characteristic. For example, according to the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), intellectual disability is “a disorder with onset during the developmental period that includes both intellectual and adaptive functioning deficits in conceptual, social, and practical domains” (American Psychiatric Association, 2013, p. 33).  This deficit-based definition and approach to understanding people with disabilities is consistent with what has traditionally been known as the medical model of disability.

Identifying deficits within a person can be useful to the extent that deficits can be prevented or remediated. Certainly, preventing neurological impairment and teaching people useful skills are worthwhile endeavors. However, the downside to the medical model becomes apparent in instances where a condition cannot be prevented (i.e., the central nervous system is already formed) and achievement gaps cannot be fully remediated, even with the very best instruction.

Illustration by Pete Gamlen.

When viewed through a medical model lens, a condition that cannot be fixed is understood to be a chronic pathology. An implication of such a conceptualization is to focus professional efforts on caring for people in specialized settings, much like people who are physically ill being provided care in a hospital. Pathologizing and medicalizing disability has historically resulted in restricting people’s opportunities to participate as full citizens in society.

An alternative to the medical model is a social-ecological model to understanding disability, where disability is understood in terms of the fit between a person’s competence and the demands of community environments. Understanding people this way focuses professional efforts on modifying the context in which people function. It is important to point out that a social-ecological conceptualization does not call for denying that people with disabilities experience limitations in personal competency. Their limitations in competency, however, are not their most salient characteristic. According to a social-ecological conceptualization, the most important difference between people with disabilities and the general population is that people with disabilities need extra support to successfully participate in daily life activities in community settings. Educators and other human service professionals are called to prioritize time and energy on (a) making environments and activities more accessible and welcoming, and (b) identifying and arranging personalized supports so that a person can successfully participate in culturally valued settings to afford access to rich life experiences.

Zahra Al Dhamin, Saudi Arabian sculptor. Photograph by Gadsen-Hayton.  BBC Online blog  review of exhibition Disabled People at Work by Kathleen Hawkins, June, 2014.

So, in terms of the real world, what does this changing conceptualization of disability really mean? I know a young man whose life experiences provide a good example of the power of a strengths-based, supports oriented, and inclusive approach to working with people with disabilities. For the past five years this young man has been employed as an office worker in one of the world’s largest insurance companies. His job involves sorting and delivering mail and running an array of office machines, while often being pulled away from his own duties to help others in the office who are in a pinch. From a deficit-based perspective, an observer could point out that it took him longer to learn his job tasks compared to others whom his company might have hired, and he has continued to require more direction and coaching on the job than most other employees.  He might never had been hired had the focus been placed solely on these challenges.

Instead, his strengths were taken into consideration and he has proven to be an excellent, long-term employee. Although he could not learn job tasks as quickly as others, this was not a weakness that kept him out of the job market. Rather, his commitment to learning helped him master the duties his job required, and once he learned them he learned them  well. The fact that he needed more direction and coaching than others did not prove to be an insurmountable obstacle to job success. Rather, his job required someone who was willing to follow directions from others, and it was important to have someone who could be counted on to do job assignments as directed. His eagerness to help others and his flexible disposition were strengths that served him well in a job that required him to step away from his normal duties and assist others who found themselves in a time crunch. Perhaps his most important talents were his cheerfulness and ability to bring out the best qualities in others. These personal strengths had a positive effect on the office climate, which enhanced everyone’s productivity and motivation.

The Two Fridas (1939) by Frida Kahlo. Image courtesy of the Frida Kahlo Foundation.

It would be a mistake, however, to limit consideration of people’s strengths and talents to only those that are directly relevant to success at school or on a job. Most people want to embody and share different sides of themselves; that is, they seek multiple ways to demonstrate their strengths and make contributions to the world. Having a multi-faceted life may even be essential to living a fulfilling life. Can we envision people with extensive or pervasive support needs in non-vocational and non-student roles? Can we envision them as artists, preachers, chefs, gardeners, travel enthusiasts, athletes, sports fans, or in any other culturally valued role that grows and asserts itself  from an inner passion? Can we encourage people with extensive or pervasive support needs to develop their strengths in ways that enable them pursue life experiences that truly enhance their quality of life? A story from Psychology’s history shows what can happen when people with intellectual disability are allowed to discover their dormant/hidden/undervalued strengths.

In 1932, at the height of the Great Depression, a group of adolescent girls and women with developmental disabilities were living at a state institution in Iowa with nearly 2,000 other residents. Near to  the institution was a severely overcrowded and understaffed state-run orphanage. The orphanage was in dire straits due to a perfect storm of an increasing number of destitute women who simply did not have the means to take care of their babies, a decreasing number of families that were in any economic position to adopt, and a dearth of public funding for human services. Infants at the orphanage were failing to thrive physically and intellectually due to a lack of stimulation. With literally no room to place another baby, two infants (15 and 18 months old) who showed signs of significant developmental delays were temporarily moved to women’s cottages on the grounds of a state school in Iowa. Dr. Skeels (1966), who chronicled the events, recalled, “The youngsters were pitiful little creatures. They were tearful, had runny noses, and sparse, stringy, and colorless hair; they were emaciated, undersized, and lacked muscle tonus or responsiveness. Sad and inactive, the two spent days rocking and whining” (p. 5).

Video still taken from a documentary titled “In Our Care: Glenwood State Hospital and School” produced in 1952.  Retrieved from YouTube.

Six months after placement, Dr. Skeels (1966) visited the wards of the institution where the babies had been left. He observed two toddlers “smiling, running about, responding to the playful attention of adults and looking like any other toddlers” (p. 6). He did not recognize them as the two “pitiful” babies that had been sent from the orphanage a little over a half of a year ago. He returned to the orphanage, which was in every bit of disarray as it was six months earlier, and concluded “There seemed to be only one alternative, and that a rather fantastic one; namely to transfer mentally retarded children in the orphanage nursery, one to two years of age, to an institution for feebleminded in order to make them normal” (Skeels & Dye, 1939/2002, p. 21).

Dr. Skeels convinced the State of Iowa to allow him to identify the infants with intellectual disability in the orphanage.  Half were sent to the institution (the experimental group) and half remained at the orphanage (the control group). A follow-up two years later showed the experimental group infants were thriving while the control group infants were languishing (Skeels & Dye, 1939/2002). The experimental children lost their diagnosis (i.e., they no longer met deficit criteria for intellectual disability) and 12 of the 13 were adopted by families. When the children from the two groups were contacted 25 years later, all of the experimental group children were found to be self-supporting adults, compared to only 4 of the 12 control group children (Skeels, 1966).

Psychology was still a relatively young field at the time of Dr. Skeels’ study, and by today’s standards his research was significantly flawed in terms of scientific rigor. Many would suggest it was flawed ethically as well (How could they leave half of the children in the orphanage, knowing that they would be neglected?). From a research standpoint, the biggest problem was that data collection and analyses were overly focused on IQ score changes; infant and early childhood IQ scores are notoriously unreliable, and therefore IQ was not valid as a dependent measure. However, despite questionable data, Dr. Skeels’ main conclusion was spot on. Namely, babies need stimulation and human contact (e.g., touch, affection) to flourish. Neglectful early environments can result in a failure to thrive with long-term effects. Dr. Skeels deserves credit for influencing a line of research targeted to understanding how experiences and conditions early in life can affect future physical, cognitive, emotional, and social development.

Unfortunately, very little is known about the women who cared for these neglected babies. But, what is known is both beautiful and heartbreaking. Skeels and Dye (1939/2002) reported that each child was placed on a ward that included 30 institutional inmates (this was term used at the time for institutionalized adults) who they described as older girls, and one attendant (there a was staff hierarchy, with matrons and assistant matrons in charge of the wards, and attendants were the lowest level of employee). We also know that “in the case of almost every child, some one adult (older girl or attendant) would become particularly attached to a given child and would figuratively ‘adopt’ him” (p. 25). But, everyone contributed. “The girls would spend a great deal of time with the children, teaching them to walk, talk, play with toys and play materials, and in the training of habits. Most of the clothing for these children was made by the older girls. The girls were so fond of the children that they would actually spend their small earnings and allowances to buy them special foods, toys, picture books, and materials for clothing” (p. 24).

Video still taken from the documentary “In Our Care: Glenwood State Hospital and School” produced in 1952.  Retrieved from YouTube.

The pitiful infants certainly brought a priceless gift with them to the institution. Namely, they offered those who were willing to love them the opportunity to discover their own strengths and talents, and to find additional meaning in their own lives. What a delightful change of pace it must have been to have a baby on the ward to love and to hold. What joy these babies must have brought to their temporary mothers.  In Man’s Search for Meaning, Victor Frankl (1992) explains how he survived the Holocaust by finding personal meaning through his experiences. He writes:

Being human always points, and is directed, to something, or someone, other than oneself – be it a meaning to fulfill or another human being to encounter. The more one forgets himself – by giving himself to a cause to serve or another person to love – the more human he is and the more he actualizes himself (p. 115).

Psychiatric Hospital of Schönbrunn, 1934. Photo by Nazi Party SS member, Friedrich Franz Bauer

After 2-3 years at the institution, the toddlers were removed and returned to the orphanage because they were now perceived to be promising candidates for adoption. Did the mothers take pride in the work they had done? Did they celebrate the fact that they had provided their child with an opportunity for adoption by a family? Were they even aware that this was the child’s likely fate? Or, was a child, who was loved dearly by a group of women, taken away from them without much explanation? Did any of them question why, despite their efforts and success, they were no longer considered to be worthy to be mothers, or even provided opportunities to maintain their relationships with these children?

Skeels and Dye’s (1939/2002) famous study offers little to us today in terms of guidance in regard to child development. There is far more solid research documenting the importance of optimizing the early years of a child’s life. The most relevant lesson we can take away from their study concerns the importance of understanding people with disabilities by their strengths and seeing their potential to enhance the lives of others with whom they are associated.  The women from the Glenwood State School were briefly provided an opportunity to discard their identities as institutional inmates, and discover their strengths as healers and mothers.

Art work by Aoife Hyland Sidener, 6th grade middle school student, Kansas.

In the Strength Based Inclusive sequence the efforts of students and faculty members coalesce around research agendas that bring to light the strengths and gifts of people with extensive and pervasive support needs.  We strive to prepare future educators to see past disability labels while recognizing and fostering the talents of their students. As long as the faculty and students in our doctoral program sequence remain true to these ideals, it is probably OK if we continue struggle to correctly recall the full name of our sequence.

References

American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: American Psychiatric Publishing.

Frankl, V. E. (1992). Man’s search for meaning: An introduction to logotherapy (4^th ed.). Beacon Press: Boston, MA. Retrieved from https://archive.org/details/MansSearchForMeaning-English

Skeels, H. M., & Dye, H. B. (1939/2002). A study of the effects of differential simulation on mentally retarded children. Proceedings of the American Association on Mental Deficiency, 44, 114-136. Reprinted in J. Blacher & B. Baker (Eds), The Best of AAMR: Families and Mental Retardation: A Collection of Notable AAMR Journal Articles Across the 20th Century. American Association on Mental Retardation: Washington, DC.

Skeels, H. M. (1966). Adults status of children with contrasting early life experiences: A follow-up study. Monographs of the Society for Research in Child Development, 31 (3, Series No. 105).

Bio

James R. Thompson, Ph.D. has over 30 years of experience in the field of developmental disabilities as a direct support professional, special educator, rehabilitation counselor, teacher educator, and researcher. He has authored or co-authored over 70 books, book chapters, monographs, and articles in professional journals, and has directed multiple federal and state funded research and model demonstration projects. His primary research focus for the past 15 years has been on support needs assessment and planning with children and adults with intellectual disability and related developmental disabilities. He is the lead author of American Association on Intellectual and Developmental Disabilities’ Supports Intensity Scales (both the adult version and the children’s version), the first assessment tools to provide standardized measures of the support needs of people with disabilities. The Supports Intensity Scales have been translated and published in 13 languages, and are being used throughout the United States and world. Jim serves as Editor of Intellectual and Developmental Disabilities.

Dr. Thompson serves as a Professor in the Department of Special Education, Senior Scientist at the Beach Center on Disability, and Associate Director of the Kansas University Center on Developmental Disabilities. He has previously served on the Board of Directors for the AAIDD and the Council for Exceptional Children’s Autism and Developmental Disabilities Division. He currently serves as Editor of the professional journal, Intellectual and Developmental Disabilities.