Understanding the Evolving Landscape of Disability

The landscape of what we have chosen to call disability changes rapidly, and for many reasons. Parents, educators, social service providers and others who work with the disabled (especially children) should be familiar with the scope of these changes and how they might affect the individuals with whom they work. Here are a few core principles that derive from our current understanding of disability:

• Be cautious of final principles

  Most of what we believe we know now will turn out later to be either false or incomplete. This is a well-established principle in many fields, and is variously known as the Incompleteness Theorem (Godel), the Uncertainty Principle (Heisenberg), or the Principle of Tolerance (Bronowski). Our knowledge is always incomplete, cannot be completed, and reflects our current perspective -- not reality. This means that our knowledge of disability will always be incomplete, fragmentary, and evolving.

• Recognize that diagnosis is a map and not the landscape

  All human behaviors, symptoms, conditions, syndromes, and disorders exist on spectra that are essentially arbitrary. A diagnosis is not a way of placing an individual on a given spectrum but rather identifying the spectrum. In this sense, diagnosis is not central to practice. Many children with neurodevelopmental and genetic conditions (about 40 percent) will never receive an accurate diagnosis. This implies that the focus of our attention should be on practice and not diagnosis.

• Understand that research reflects culture, not truth

  Contemporary research in all fields is infused with the cultural artifacts common to any group of people working toward common ideas: personal bias and favoritism, politics, manipulation, fraud, insecurity, and the occasional shining example of elegance and truthfulness. Treat research as provisional; a guide rather than a directive.

• Recognize that human capacity always exceeds what research and past experience suggest

  This seems obvious but is easy to forget in a research climate that is declarative, reductionist, and prone to absolutes. We still do not know most of what we need to know about the core themes of human consciousness, embodiment, and development. The junctures at which we revise our views are always those points at which individual achievement exceeds what contemporary theories allow. This is the method by which advancements are initiated. We revise our notions of what is possible only when someone achieves that which is assumed to be impossible.

• Identify environment as the crucial factor

  Current genomic research supports the notion that genetic factors are activated or inhibited by the environment. Perhaps as much as 30 percent of our genetic structure is imprinted by the specific environments to which we are exposed as children (and as adults). Developmental theories also support the centrality of the environment, as do educational and disability models. The environment of human relationships is the central context through which all aspects of human behavior are mediated. Accordingly, environment (in most cases) should be the focus of our interventions, strategies, and supports.

• Understand that mainstream standards and models reinforce themselves and discourage discovery

  Standard, well-accepted approaches and models tend to be blind to their own assumptions and inadvertently exert most of their energy in sustaining the system rather than seeking knowledge. This is a well-established difficulty in many fields (archaeology, physics, anthropology, astronomy, etc.). Models tend to become self-reinforcing, and in this way diverge from their original purpose. The models of disability are no different. Efforts should be made to explore and understand mainstream models but also to question their limitations and assumptions. This role is heretical, usually results in personal attack, and is understandably a difficult posture for most people to sustain. But such contributions are crucial. A model without heretics is a dead and irrelevant model.

• Recognize that lack of progress in individual development typically reflects a limitation of practitioner skill rather than an inherent individual limitation

  Humans are built to evolve through the lifespan, and this is such a fundamental impulse that it cannot be eradicated by disability. Some individuals will undergo small, almost unnoticeable changes that are commensurate with their (unknown) abilities; others will grow in ratcheting leaps and plateaus; others will change and grow in small steps spread across many years. But in all cases, the most foundational human impulse is to grow. No one is exempt from this impulse. It defines us.

• Trust experience more than research findings

  Clinical judgement, individual exposure, and simple experience are almost universally more effective than research findings (which focus on aggregates, averages, and conditions that are not similar, probably, to the conditions of your work). In the work of disability support, practices developed through careful attention to individual needs will often contradict research while at the same time reliably producing better results than what research predicts. The best clinicians, teachers, and social service providers are those who place contemporary research within the context of individual experience. The research is secondary to the practice. Or, to put it another way: the clinician is a primary heuristic research practitioner.

• Work on the continuum of practitioner skill

  One of the difficulties of working with disability today (and, in fact, this also applies to many other fields) is that the sheer volume of research and associated information is beyond the scope of any one person. You can know, perhaps, one or two percent of what is happening in your field. The rest is hearsay at best. In this type of environment, individual practitioners face the considerable challenge of substantial ongoing professional development. Of course, this is ultimately a good thing; but it can be tiring, as the ground shifts quickly and unpredictably. Stay as current as you can, and recognize that you can never be quite as current as you need to be.

• Recognize the interdisciplinarity of the field

  Disability is an interdisciplinary field of inquiry with connections to medicine, psychology, culture, biology, neurology, spirituality, ethics, and many other fields. Increasingly, practitioners are starting to recognize that many benefits can be gleaned from the fusion of various fields into an eclectic sort of practice -- a bit from here, a bit from there -- which encourages maximal exposure to multiple activities, strategies, and principles. This type of approach is essentially playful and exploratory; it honors the fundamental humanity and authenticity of the work.