The Name Game:  How and when diagnosis matters

“Well, what’s the diagnosis? Do I have a Learning Disability, or not?”

“Is is Autism? Asperger’s Syndrome?”
“Will this diagnosis disqualify our family for respite funding?”
“Does my child qualify to have an aid in school?”

In our office, we have a love-hate relationship with labels and diagnoses. Formal diagnostic language opens doors to services and validates disability claims. Because it summarizes many signs and symptoms, diagnosis can be a useful shorthand between professionals. But diagnosis is by no means an exact science, particularly in the field of Mental Health. And reducing an individual’s strengths and weaknesses, style and functioning to a single term can erase more than it highlights. What do we really know about Suzie with Bi-polar Disorder? Not much, but “Bi-polar” on a piece of paper may cause us to make all kinds of decisions and judgments before we find out.

We would usually prefer to go with a descriptive approach, de-mystifying the problems, identifying strengths, and brainstorming with families and/or school personnel for solutions. Describing people as individuals, rather than as belonging to a category, means trying to understand and connect with the person; to see the world as they do. Suzie’s family does not see her as a diagnosis, but as a whole person, with interests and motives and loves and frustrations of her own. How, they want to know, can they help?

When teaching Psychopathology at the local college, Serena carefully avoids what she calls the “going to the zoo” approach. Traditionally, students learn about specific psychiatric diagnoses one category at a time, with a strong focus on what is different, even bizarre, about each “illness”. It is too easy to be fascinated by difference and gawk at the unusual, like the freak-shows of old or the once-popular Supermarket tabloids: “See the giant woman, the thin man, and their alien child!” This is dreadfully misleading. The reality is that within every family there will be someone who fits some category in the textbook. And, so what? One person’s “abnormal” is someone else’s “normal”—just the everyday condition of their lives.

The second problem with the category approach is that it treats disability as something that belongs to the individual. We speak of a person having a disability as though it were carried with them all the time, like luggage only not so useful. In reality, being disabled is a function of two things: the capabilities of the individual, and the demands of a particular environment. Turn out all the lights in a lecture theatre, and suddenly the blind student becomes the only one who can still easily find her way around. A child who can’t sit still in a classroom has no disability on the playground monkey bars. And if a house cannot be accessed without stair-climbing, is it the person in the wheel chair, or the house that “owns” the disability? Why even speak of “Learning Disabilities” to describe bright children that a school is failing to teach? Couldn’t this be called a “teaching disability?” Or just a mismatch of the child and the methods available?

The third problem is that having a disability implies that one can’t get things done as efficiently or effectively as another, non-disabled person. It’s as if the entire person either is, or is not, “disabled”. Yet we know people with significant disabilities in one or more areas of functioning who can still out-perform most people in others. And doing something well shouldn’t be the criterion for deciding whether or not one should try it. Serena, who has fibromyalgia and scoliosis of the spine, is finding herself to be quite disabled when it comes to helping with house renovations. But she can think circles around most people, and her physical limitations don’t keep her from looking forward to winter skiing, which she enjoys immensely despite having no talent whatsoever.

A fourth, and very serious problem with the category approach to diagnosis is that it is used, and abused, to determine access to resources for both children and adults in BC. Unlike the United States, Canada does not have a law that entitles children to an appropriate education regardless of their abilities; nor do we guarantee all of our citizens access to the means to participate in their communities. In 21st Century BC (British Columbia, that is), we’ve seen a systematic withdrawal of services to people with disabilities. Even more seriously, we’ve seen access limited by an ever-narrowing list of boni-fide “disabilities”: If your disability isn’t on the list, you needn’t apply.

Take, for example, this paragraph from the Ministry of Education’s policy on K-12 funding for special needs:

“The Basic Allocation, a standard amount of money provided per school age student enrolled in a school district, includes funds to support the learning needs of students who are identified as having learning disabilities, mild intellectual disabilities, students requiring moderate behaviour supports and students who are gifted. Additional supplementary funding recognizes the additional cost of providing programs for students with special needs in the following categories: dependent handicapped, deafblind, moderate to profound intellectual disabled, physically disabled/chronic health impaired, visually impaired, deaf/hard of hearing, Autism Spectrum Disorder, and intensive behaviour interventions or serious mental illness. (emphasis ours)

In other words, schools can access extra money to meet the additional needs of students with certain special needs, but not others. A child whose tested IQ is above 70, but who has a severe learning disability such as dyslexia is not funded. Parents of children with learning disabilities have been fighting this ruling. They want schools to provide their children with an Individualized Education Plan (an IEP) and adapted instruction. Without this, their children will not reach their potential in public school. So far, this fight for legal recognition of their children’s right to an appropriate and publicly-funded education has failed.

At the adult level, too, Canadians are forced to play the game of “Match that Category.” In BC, such services to people with “Developmental Disabilities” are made publicly available through Community Living BC. But the door to services is even narrower than the one for Ministry of Education funding. According to the CLBC website:

“Developmental disability” … means: ‘significantly impaired intellectual functioning that
(a) manifests before the age of 18 years,
(b) exists concurrently with impaired adaptive functioning and
(c) meets other prescribed criteria’(as of the date of this policy, no further criteria have been prescribed)
(from the CLBC Policy Statement on Eligibility, posted on the Community Living BC website.)

“Impaired intellectual functioning” that begins before adulthood is the first criterion for funding; without it, the person is ineligible, no matter how severely impaired they may be in their everyday “adaptive functioning”. Intellectual impairment is, for the purposes of CLBC, defined as in IQ test score of under 70.

The problem with this is threefold. First, no Psychologist who went to Ethics class will tell you that a single test score can be an adequate measure of functioning. IQ tests are good for many things, including helping to determine one’s learning style, predicting school success, and, when combined with other measures of adaptive functioning, helping to assess one’s general ability to cope and learn in a variety of specific circumstances. But they cannot, with a single score, tell us how “smart” a person is, or whether or not they need assistance in order to participate in the world that they live in. CLBC is relying on a single score to give too much information, and Psychologists should not be participating in this pretence of objectivity.

Secondly, the “Impaired intellectual functioning” standard leaves out those whose intellectual functioning is just fine, but whose physical and/or communication problems make it difficult for them to perform the every day activities of self-care, social life, and employment. This standard is perhaps most cruel to those with Cerebral Palsy that affects both movement and speech. After 19 years of advocating for the tools and support to help their children to communicate their intelligence, it must come as a cruel joke to parents to have those children excluded from supports as adults because they are too smart.

Finally, CLBC does not offer help to those who become disabled after the age of 19.

Having access to the means to become our best selves, and then to participate as meaningfully as we are able within our society, is a fundamental human right. Ironically, impoverished countries often are more, not less, inclusive of people with disabilities. The reason is fairly obvious: they can’t afford to leave anyone’s talents untapped. It is an affluent society that can afford to sideline those who don’t meet a narrow standard of “able”. In doing so, we sideline also an experience of what it means to be human: vulnerable, interconnected, and infinitely diverse.

In the long run, almost everyone lives some part of their life with one or more disabilities. The TAB’s (Temporarily Able-Bodied) might do well to remember this, and to make their doorways a little bit wider, both structurally and metaphorically.