Disability versus Difference

When is a child disabled? When is what we – the adults in a child’s life – call a “disability” simply a difference, something that we may find it hard to accommodate, but which does not constitute something wrong with the child?

Few questions cause more tension within families than this. One parent may have one perspective, the other parent the opposite. Or, parents may be united in their sense that a child is “different but not disabled”, yet the school may look at it differently. Conversely, parents may feel strongly that a child must accept and cope with a disability while the child him or herself rejects this identity.

A glance at the literature for parents finds widely divergent viewpoints. One perspective, often offered by clinical professionals, counsels parents to understand, accept, and cope with their child’s condition in a tone not much different from the one that we might adopt to speak with parents of children with diabetes or epilepsy. Another, frequently voiced by parents, argues that society wrongly pathologizes children who think or behave differently – sometimes for benign reasons (such as trying to harness the resources of the special education system to help a child who is struggling in school), sometimes for reasons that are less benign and are rooted in prejudice against those who are different.

As a clinician I find it hard to reject the former model in its entirety. Having worked with patients with severe autism, with paranoid schizophrenia, or with multiple suicide attempts associated with a mood disorder I find it impossible to deny that these individuals live with a disease in just the same way that someone with diabetes lives with a disease – with the twist that the psychiatric disease expresses itself through abnormal cognitive, emotional, and behavioral patterns rather than through abnormal metabolic processes. It is wrong to deny that these patients – who, along with their families, suffer terribly – are struggling with illness.

At the same time, I have met many people who has been told that there was something wrong with them – sometimes in sophisticated clinical terminology, sometimes in the crude language of “lazy” and “stupid” – when in truth the “wrongness” lay not within them but in the poor fit between their learning style and personality and the expectations and demands of their environment. And just as it is wrong to deny the reality of an illness that has a patient in its grip, it is also wrong to tell a capable, motivated young person that their struggles are due to a neurological defect rather than to the rigidity of the systems – familial, educational and otherwise – that they are caught in.

How do we tell the difference between a difference and a disability? We cannot simply make a list of diagnoses falling into one bin and another list for the other, as the distinction frequently cuts across diagnostic lines. I have met many children diagnosed with Asperger’s Syndrome, for instance, who seem to carry that diagnosis because of their families and school’s expectations rather than because of an intrinsic disorder, and other children diagnosed with Asperger’s who seem more clearly disabled. Nor is it simply a matter of severity. Some neuropsychological disorders can readily be incorporated into a healthy life with proper management, while cases of individual-environment mismatch can be devastating if unrecognized.

For families struggling with this issue, I suggest a thought experiment. Ask yourself this set of questions: knowing everything that you do about your child, can you imagine an environment – a world – in which their profile would be adaptive? A world in which their way of thinking, learning, and relating to other people would be an asset rather than a liability? Is such a world feasible? Would it be desirable?

Consider two examples:

Kate is a girl diagnosed with ADHD. She loves sports and works hard to be a good soccer player and she has a good group of close friends, but she hates school and struggles to get C’s. She is frequently in trouble for talking in class, failing to turn in assignments, etc. Ask yourself, what would a world that worked for Kate look like? Perhaps it would be a world in which people spent much of the day outdoors engaged in vigorous physical activity. A world in which the environment was variable and unpredictable, requiring one to do things differently one day than they had the day before. An environment in which advanced literacy skills are optional save for a small group of professionals, but tight social relationships are critical.

Does this world sound feasible? Sure, this is probably what the world was like for much of human history! Small farming communities or groups of hunter/gatherers probably lived in settings which basically met these criteria. Does it sound desirable? For many people it probably sounds idyllic.

Now consider Paul. He has been diagnosed with High Functioning Autism. He has no close social relationships, even with family members. He is versatile with computers and other forms of technology but has trouble navigating even routine social interactions, such as making a purchase in a store or ordering in a restaurant. He adheres to a very consistent routine but any departure from expectations is met with great anxiety and upset and derails the entire day. Ask yourself, what would a world designed for Paul look like? Perhaps it would be a world in which human interaction was negligible, or heavily mediated by computers. A world in which our needs were met not by engaging and forming relationships with other people, but through inanimate technological systems. A world in which there was almost total consistency day-to-day and week-to-week, with no unexpected deviation.

Is such a world even theoretically possible? Has it ever existed? More importantly, even if we could create it would we want to? Or does it sounds like some dystopia out of a science fiction novel?

Thoughtful people will disagree on these points. The process of thinking this through inevitably involves value judgments, as the above examples make clear. Moreover, parents and teachers who are up to their elbows in the day-to-day struggle of helping a child such as Kate through middle school are likely to be inclined to remark: “it’s great that she would have been a happy and healthy kid in a 19th century farming community, but this is 2013 and we have 8th grade math to worry about!”

This is a fair point, but there is still value in clarifying our thinking in this area. It will help us to understand and empathize with our children. It will also help to frame our goals and expectations for their future. Kate’s parents might reasonably say to themselves that they have a hard road to get her through middle school, but that ultimately she will find an environment better suited to her profile and will be positioned to thrive. Paul’s parents, on the other hand, may be concerned that, regardless of his technical competencies, it will be difficult for him to find an environment that allows him to succeed, and will concentrate on intensive interventions to build his social skills and flexibility while he is young.

While not an easy one, the “disability vs. difference” conversation is one which will often families to better understand their children and to plan for their future and in many cases it is one worth having.