By Ilise Feitshans
Disability, if viewed appropriately as a universal facet of the human condition, is a cross cutting issue that unites all people: Everyone has a disability, everyone has a gift. [1]
Society needs the benefits from each of these features of individual variability to promote human progress and benefit from interdependence[2], but this facet of disability is rarely mined in the trenches of daily battles to protect the civil rights and human rights of people whose society gives them the label of “disabled” [3].
Unfortunately, despite its universal character, disability has too often played out in society as the great divide that separate the vulnerable from the strong: healthy or well versus disabled or infirm, unable to produce. Sabatello has characterized this problem eloquently, “Grounded in assumptions of societal influences and powers, this approach draws attention to the societal environment accounts in order to understand the construction of disability. It stresses that disability is a social construct, an ancillary of the domination of the able-bodied and the subordination of persons with disabilities.” [4]
The seminal importance of this medical reality is understated by the term “diversity”. The term diversity implies something static that can be represented proportionally when assembling a meeting or convening a governmental body, in order to ensure a different voice or unusual perspective has been included in the process at hand. While acceptance of difference is essential to understanding, accepting, tolerating and ultimately benefiting from the gifts of individuals despite their disability, there can be no magic formula that proportionately represents people with disability; there is no recipe for disability that predicts or guarantees which people will endure whatever cocktail of illness and disabling conditions they must endure in their lifetime.
Even when illnesses share a classic co-morbidity, such as the obsessive-compulsive nature of young children with ADD or ADHD to cling to the information they do understand as a compensation mechanism once they realize that their process information differently—pairing of co-morbid conditions is not automatic. Disabling conditions may be acute, long-term or chronic, but there is no predictable formula for their duration or their severity, just as the dilemma posed by co-morbidity. Such linkages as co-morbidity or prognostications of cause and effect can only be estimated and they are never static. Therefore, protecting people with disabilities against societal discrimination and providing appropriate necessary services or accommodations is part of the nature of human variability itself: the population that is to be protected is fluid, changing as new technologies offer treatments and cures, despite the happenstance of daily life.
Life is full of surprises, but none so surprising as the achievement of human potential. The building of the great cathedrals and the vision of the minds that led to them; the writings, backwards, by Leonardo Da Vinci, the beauty of the music from the human voice; all challenge our predisposed sense of reality, our myths about ordinary life as it is supposed to be. Gifts and talents, once demonstrated to society as whole are taken for granted, but what are they really like in their social context? What is it like to live with them? To live among people so unusual that things mundane to them are the stuff of other people’s great dreams? And what of the people around them, to whom they express those dreams?
People with learning disabilities, who have impairments that affect their visual processing or auditory processing, therefore possess a different way of seeing the world that is innate to them, but unlike the world view theoretically shared by the surrounding collective society. Invisible neurological impairments interfere with processing information, as if the student had two brains: one very fast, taking in information, and one sending out information very slowly. Invisible disabilities make a difference in the ability to perform daily major life activities in the hyper literate society of the 21st century, which might not have mattered a century or two before. For example, slow processing can make it unsafe to drive a car, if the driver needs extra time to understand and process the information on road signs while driving at fifty miles an hour or cannot recall the difference between a left and a right turn. Such conditions held little or no consequence in a society that drove a horse and buggy and did not move with the contemporary technology’s lightning speed, but can have lethal consequences in a society where information for highway traffic is displayed on rapidly changing electronic signs.
Thus, neurological impairment impacts an individual’s performance of major life activities: seeing hearing, walking, learning even social interactions are governed by a host of auditory and visual cues that must be received by an individual, processed in a manner consistent with the social conventions of their cultural context, and then interpreted into information that can be used by the individual when formulating a response that will be understood as communication within the cultural context of the society at large. Disabilities make the work more difficult, the struggle longer, the triumph of the human spirit that much greater. When listening to the magic sounds from Perlman’s violin or Randy Chang’s concert piano, the audience does not focus on the crutches of the master violinist or the face of a pianist with Down syndrome; they appreciate the beauty of their talent. When admiring a painting made by a person who must hold the brush between his toes, many viewers cannot imagine how such beauty was created by the artist’s use of his feet.
Once presented with the full package, the gifted person amid the glory of performance, of creative arts, of honored schoolwork, many people will overlook or even deny the presence of flaws or disabilities. Some viewers may never see the disability behind the gift. Not even Frieda Kahlo’s tortured images of human pain can mask her inner beauty or betray her disability beneath, to the uninformed observer. And only the trained art critic can find the subtle differences between Monet canvases done in the prime of adult vigor compared to later works created despite failing eyesight. With a gift so obvious and the disability invisible to a viewer miles away from where the canvas was worked, no one knows from the face of the work itself about the disability that just happens to be in the background. Disability, although present, that can easily be denied.
Gifts may not be so obvious, however, when the work is incomplete. A student’s goal may seem to be unrealistic or overly ambitious, when viewed from the embryonic or infant moments of time before a great human project is done. Examining the person before the time of results, in the early years of childhood when potential is everywhere and no one has yet uncovered the individual’s gift, may be a very hard time. In those first three to five years of life, only the extraordinary gifts are obvious, often in the form of a prodigy who is unlike anyone else and therefore, by definition, has few peers and learns differently from everyone else. In those early years, disability masks the gift.
There are many myths about the role of disabled students in a mainstream classroom, which can only be dispelled by greater information to the general population [5]. One myth is the belief that extended time is an advantage given to some disabled students,. Yet no student would sit inside a classroom, taking an hour or two longer than peers to complete an exam when that student can be playing outside instead. Extra time will not give a student knowledge the student lacks, or provide talent that is not already present. Many people will never be able, for example, to dance the lead role in Swan Lake or play violin or undertake translation of literature from Ancient Chinese to Modern Greek, even if they are given fifty years to do the tasks involved. Extended time is therefore a low-cost mechanism of ensuring that students who have difficulty in writing, reading or organizing their written expression can perform at their strongest level. [6]. Like a still, deep pool of water with many facets and reflections, the wonder of finding someone’ s gifts despite or because of their disabilities unleashes all the questions of existence, and unfurls all the beauty of divine mysteries. Surely, in finding the gift in even the least obvious of populations, there is only faith in a master plan of nature or pure unvarnished human spirit to be the guide.
There is human potential in everyone, and the educator’s job is to bring that potential forward into the rest of the world. If people refuse to ask the deeper hard questions about potential and performance, gifts remain hidden except when they are most obvious. And if no one aggressively seeks to unlock the gift that has been covered by disability, the label that child bears for life is one of stigma and disability. Too often, in generations past, acknowledging a child’s disability was akin to a death sentence. The life ahead was one of disappointment for parents, who realized in their child only in terms of lost potentials. The child was likely to be spirited away for a closet life in an institution. Retardation, nervous conditions, contagious diseases, mental illness and low functioning associated with the unstable economic status of orphan children all share a torrid history of segregation away from the so-called norm – even though there really is no norm. Even though no child is really in the middle of the mythological continuum in every place; even though the norm is a composite of aggregate human experience; a science fiction for learning and teaching.
Two roads to promoting the human potential long ago emerged in the parted theories of disability education. For children who have disabilities, the road taken has made all the difference. In one – a charity model – views people with disabilities as having limited potential. Their disability, whether physical or cognitive, limits where they can go in society, what they are capable of achieving and ultimately, their ability to contribute to human progress. In such a view, the educator’s job is to make life better for those “poor suffering disabled people.” Somehow, the human potential of the individual gets lost in this model and people are easily relegated to segregated settings that accentuate their difference from the mainstream population and limit their ability as socially defined. [7]
Then there is the human potential model. This model presumes that everyone has a gift; that each person, no matter how obvious their physical or mental disability may be, has something to contribute to the greater society. This model eschews conventional notions of “survival of the fittest” and redefines “fittest” to entertain the possibilities that in one context may appear normal, but in another context is just strange. Like the rocket scientist, whose concerns and ideas about the composition of cosmic gasses are welcomed by NASA but are so odd at a family dinner table. One can only wonder what the world would know had Da Vinci not been so constrained by the conventional views of his world that he felt compelled to fill his notebooks backwards. Unless of course, he was undiagnosed although dyslexic or dysgraphic as well as unconventional..
There is an alternative approach, a road not taken all that often because it is so uncharted. A path that relies on instinct that drives human potential, with almost a divine mysticism about the belief that people, given a wide variety of exposures and opportunities at a very young age, can express their gifts despite any flaws or disabilities. Under this belief system, flaws can actually be converted to assets in the right context. Like the obsessive-compulsive who makes for an excellent research scientist, meticulously trying the same experiments again and again, making minor alterations in methods until getting it to come out right. Gifts and disabilities are not polar extremes. In fact, these features are inextricable facets of every person, each deserving a fair and equitable opportunity to explore creative avenues. Use technology—videos, PowerPoint, music, performance and assistive devices—to replace written _expression. Offer unusual opportunities for those with disabilities to excel and to try new programs; measure personal progress against their own level, not communitarian benchmarks.
The contributions from preserving neurodiversity are thus a social good. In this sense, difference is a benefit, a source of creativity that is derived from the perspective of their unique way of seeing, hearing, learning and processing information in the world. [8] Thus, it behooves international human rights systems to ensure that neurodiversity is preserved and equal treatment of people with invisible disabilities is not denied.
References:
[1] Ilise Levy Feitshans and Jay Feitshans, citing Sylvia Levy, WALKING BACKWARDS TO UNDO PREJUDICE: REPORT OF THE US CAPITOL CONFERENCE INCLUDING DISABLED STUDENTS: WHAT WORKS, WHAT DOESN’T (Emalyn Press 2003); [2] Feitshans Jay, Gifted Disabled Deserve Study Retrospect Newspaper p5 May 13 2005Jay Feitshans, Invited Presentation to New Jersey Office of Special Education Programs (OSEP) Statewide Special Education Advisory Commission (SSEAC) “Not Understood” June 10,2004, Trenton, NJ- [3] Jay Feitshans, Testimony in Support of S. 2142 An Act to Establish the Gifted Disabled Community Needs Study Commission, New Jersey Senate Committee on Education January 24 2005 (archived on the New Jersey Legislature webpage). [4] Maya Sabatello *1025 DISABILITY, CULTURAL MINORITIES, AND INTERNATIONAL LAW: RECONSIDERING THE CASE OF THE DEAF COMMUNITY Whittier Law Review Summer 2005 [5] KristenGraham, “Sharing Views and Dispelling Myths About Disabilities: At Conference on Inclusion, Students Address Disabilities ” Philadelphia Inquirer April 11 2001
[6] Lambros, Katina M. and Leslie, Laurel K, “Management of the Child With a Learning Disorder, Pediatric Annals Vol 34 Number 4 April 2005 p. 275-287 at 277
[6] Desmond P Kelly, “Learning Disorders” Pediatric Annals Vol 34 Number 4 April 2005 p. 260 [7] Ilise L Feitshans, Gifts and Disabilities: Two Sides of the Same Coin, Lecture for the Barnard College Department of Education November 2004, excerpt from WALKING BACKWARDS TO UNDO PREJUDICE: REPORT OF THE US CAPITOL CONFERENCE INCLUDING DISABLED STUDENTS: WHAT WORKS, WHAT DOESN’T (Emalyn Press 2003).
[8] Jay Feitshans, Testimony Before the New Jersey Special Education Review Commission, Trenton New Jersey, October 17 2006