I write, speak, and sing a great deal about my late brother Mark. Not only was the arc of his life a bellwether for the terrible times in which he lived, but he became a great teacher for me as he lived in the community as a middle-aged adult. Mark’s life could have been the model used to present the unmet educational and social needs, experienced by children with disabilities and their families prior to the changes brought by sweeping federal law. Mark’s early childhood was brutal, both during the few years when he lived as part of the family, and then after age eight, when he was institutionalized. There, he suffered the ghastly violence wreaked most heavily upon the smallest and most helpless residents, or more accurately inmates, within those barbaric institutional prisons. It must be understood that being sent to a state institution was truly a life sentence within prisons beneath even international standards concerning prisoner of war camps without any hope of change. However, this essay is about early childhood, disability, social inclusion, and the potential of federal law.
Mark was born in 1954 and went away in 1962, thirteen years before PL94-142, or the Education for All Handicapped Children Act of 1975, now called IDEA, the Individuals with Disabilities Education Act. That law required the early identification of children with disabilities and family-related services prior to kindergarten. It also mandated the inclusion of children with all disabilities in public elementary, middle, and high schools. Like all US disability rights laws, the law requires individualized planning and inclusive settings. Like all civil rights, disability educational rights have to be safeguarded by educated parents advocating at every step along the legal way. Mark’s early life can give us important lessons about what not to do as we shape the social life experiences of children with and without disabilities.
When I was five, my little brother Mark was born with a severe cognitive disability. Early on, like all children from functional families, Mark was nested within the protection of the nuclear family. Mark’s earliest life was punctuated by a series of missed developmental milestones as our helpless parents conferred constantly with our pediatrician and the Cleveland Hearing and Speech Center about his behavior’s implications concerning the degree of Mark’s cognitive limitations. I remember those heartache-laden murmured exchanges between my parents, spoken assuming I would not understand. I remember their muffled grief as they watched their youngest son grow into his disability, and experience ongoing harsh social exclusion. Early on, my mother invited her next-door neighbor friend over, with her toddler one year younger than Mark. I remember much motherly interventions as Mark attempted to play with his younger neighbor. Tensions filled those little gatherings. There weren’t many such visits. Yet, my mother understood that Mark needed to play with other children, and she also understood that she needed relief from the constant demands that mothering an active child with a cognitive disability requires. To serve Mark and herself, Mom organized a preschool co-op among other mothers, held in our church’s basement, so that Mark would be included in an organized playtime and could not be excluded from participation due to her leadership, she thought. My Mother enjoyed a few hours of independence from Mark during his first experience without her watchful supervision. A crisis developed, during her absence, when Mark was accused of pushing another boy. The other mothers caucused. They told my mother that Mark could no longer attend, since they were afraid that he would hurt their children. Wait a minute! I think the snap judgement delivered to my mother had some serious flaws, both in the factfinding and the conclusion. Mark was an unsocialized little boy who needed to learn how to play with other children successfully, and they with him. Mark was outgoing, happy, willing to share, and always an eager, maybe over-eager, playmate. I know because I played with him, and he was never aggressive nor violent. Ironically, rather than being the perpetrator, my brother was always the victim. The one exception was our Sunday school. There, the leader of the preschool saw to it that Mark was successfully included. Quite a difference. The story my mother was told was that Mark pushed another boy at the top of a little wooden slide. Was the other little boy not taking his turn on the slide and frustrating Mark? Did he push first? My observations were that very quickly other children became impatient with Mark’s lack of cognitive development.
The old African adage is that it takes a village to raise a child. Native American culture holds that belonging is the first “circle of courage” ensured by the tribe for all children. But our village had no such high-minded guiding principles. The other mothers had no patience for Mark’s disability and felt no responsibility to help. Exclusion was the norm, and my mother was bucking the system, attempting to develop an inclusive preschool, but the other mothers had no buy-in if it was going to require additional time and most of all patience from them. My Mom’s experiment could have worked had she explained that all members of the co-op were going to help by teaching their typically developing children patience and kindness. Of course, someone would have had to teach them those virtues first. Then, they would have socially engineered success. That would have been the monitoring of play, intervening when needed, and teaching by example. That would have required conscious intention and most of all – time. Mark could have succeeded but turning a roomful of rug-rats loose together, without ongoing guidance, was not how. I have no way of knowing Mark’s culpability in the pushing incident, but the other mothers made a decision that was sudden and final. They had a zero-tolerance policy for any inappropriate behavior by my brother. The stereotypic fear of “the other” with a cognitive disability was the stalking horse during that stage of his childhood. It was unspoken but they feared Mark because of his disability. That bias reflected an unspoken cultural norm.
As we grew older, Mark was lured into the neighborhood to play with an established gang of other children, outside and away from the family. These play sessions always soured at Mark’s expense. Although Mark’s brief absences gave all of us a breather, nearly every engagement ended with Mark having experienced an ever-increasing spiral of shocking violence. Mark’s kindergarten was delayed by two broken legs, one in June and one in October. Our neighbor was the kindergarten teacher and advocated for Mark’s attendance in her protective classroom. Otherwise, he would have been excluded from school all together. So, he attended the last half of the kindergarten year. It was agreed that Mark would repeat kindergarten hoping for a burst of development, but another year didn’t change Mark’s brain. He would never catch up and our parents and the kindergarten teacher’s flailing were a prolonged act of desperation.
With foreboding Mark was advanced into the wilds of first grade. He was already a head taller than the other children and he could not be held back again. Failure was assured. My brother was put into a class of typically developing children with no classroom aid or any sort of academic support. It was impossible for him to focus as required. As a result, he acted out, distracting other children, and generally upsetting his classroom with behavior he could not help. Bullying was organized and extreme. In early October, Mark’s violent torment peaked in a crisis, and he refused to attend school ever again. Mark had not failed, the principle and the teachers had failed him. They had failed to plan. They had failed to support. They had failed to supervise, and they had failed to protect Mark from the type of thuggery that can result when a child with a disability is subject to the rough justice of unsupervised time away from the classroom.
Following his failure in public school, Mark was enrolled in a special church-run school for children with disabilities. He lasted two days before he was sent home with a note stating that his disability was too severe for their school and to please keep him at home. Mark was a boy without hope for education and who began to act out the violence at home that he experienced at the hands of typically developing children. My parents were promised that the institution would provide a safe environment where he would be educated and learn a trade. Sadly, none of this was true. Mark was sent away in 1962, the same year that President Kennedy signed the first legislation intended to develop community-based resources for people like my brother. In 1964 the Civil Rights Act was passed, beginning a ground swell in American law, protecting human rights. In 1975 an expansive piece of legislation, impacting the educational lives of all children, became law.
PL94-142 established the concept of early intervention as an essential aspect of public education for children with disabilities. Thanks to this law, children like Mark now are identified by public schools early on. Public schools are required to include all children with proper support, regardless of the degree of their disability. A few models have demonstrated the benefits of inclusive preschools for children with and without disabilities. In New York City, the Lexington School for the Deaf offered a terrific preschool for hearing children and those with hearing disabilities. The Cleveland Sight Center developed an inclusive preschool for children with and without visual disabilities. Also in Cleveland, the Cuyahoga County Board of Developmental Disability provided a model inclusive preschool, addressing cognitive disabilities. Each of these programs provided a successful model that always had a waiting list for children without disabilities. But note, that each program addresses only one disability, unlike real life wherein all disabilities are peppered throughout all communities. In most places, such model preschools do not exist. Head Start Classrooms are the exception and, depending on personnel, may include skilled staff training and inclusion. Certainly, other models exist as well, but our nation’s inclusive preschools are spotty at best since preschool education is not required. Our spending on early childhood education is sickeningly low. In the US, we spend about 500 dollars per child per year as opposed to roughly 20,000 dollars in Scandinavian countries. There are certainly model schools where top-down support of inclusion ensures that the high-minded promise of the law is realized, but like Mark, children are too often dumped into classrooms without supports adequate to ensure success.
Classrooms however are not the root of the problem; bullying always is. Children with disabilities are victims of psychological and physical abuse. The cycle of abuse begins with social exclusion, moves to ridicule, and ends in violence. Today cellphones have introduced cyber-bullying which exponentially accelerates the impact of bullying. It happens when teachers aren’t looking. The solution must begin in early childhood with the consistent teachings of heart intelligence – patience, empathy, kindness, and compassion – in action. Through these teachings young children will learn that human difference is normal, and that their engagement is required to ensure the safety and success of everyone.
During the first years of this century, I consulted with a grant-based undertaking, called Project Support, a noble afterschool-club model, which works at all grade levels to develop social support systems for kids with disabilities and all devalued differences. Project Support Clubs protect, include, and develop real friendships across unlikely boundaries. Over the 3 years of grants from the Ohio Department of Education, we were successful in establishing Project Support Clubs in over 700 elementary, middle, and high schools throughout Ohio and within a few other states.
IDEA introduced a sea change concerning the life of people with disabilities. Rather than expecting that children with severe disabilities would not attend school and be kept at home, or sent away to prisonlike institutions, the law introduced an entirely new paradigm. It requires that schools open their doors to all learners and provide education regardless of the severity of the disability. If instruction is provided in an inclusive classroom or even “down-the-hall,” social understanding must still be taught. Inclusive settings such as lunchtime, physical education, and the arts, are such ideal times.
Early childhood is the perfect time to begin to teach social understanding. It involves emotional growth and the development of empathy, compassion, and patience within all children, especially those without disabilities. Beginning in elementary school, Project Support Clubs develop real friendships that will grow through time. I have seen isolated children with down-syndrome grow into adults whose lives are woven into the community, including employment, thanks to Project Support friendships. Project Support is social engineering – the intentional development of social communities where engaged real friendships are expected. Social understanding can be taught as we acculturate all children to accept differences. The development of positive connection will lead to a lifetime of interconnected living. Heart intelligence is social understanding, and we only have one opportunity to teach that essential life skill. This is when we can socially engineer inclusive communities through development of heart intelligence, leading to the social welfare of everyone.