What is Disability?
By Clenton Farquharson
Is there a universally accepted definition? Some might say yes. However, if we look beyond our own personal experiences and environments, we’ll understand there is not a “one-size-fits-all” disability definition. “So what,” you may be wondering, “what difference does it make?”
It makes all the difference in the world to individuals who have been labelled.
Within the service system, a label is necessary before a person can receive services. Other factors may also be considered when determining eligibility, but a label is often the first and more important factor. Therefore, a disability label is “good” in the sense that it enables a person to receive services.
However, labels are very, very bad when they’re misused, and they’re misused in a variety of ways. Within the service system, a serious misuse of labels occurs when a person’s label becomes the primary guide in determining how and where services are provided. Public schools often segregate children with similar disabilities in one setting; adults with disabilities are frequently congregated by disability label in group homes, sheltered workshops, and other settings. Vocational-rehabilitation or other employment counsellors often use a person’s label to predetermine what type of job a person can or cannot do.
Life-altering decisions about people with disabilities are frequently made by others (often without the person’s consent and/or against the person’s will) based solely on a one or two word characteristic, which we call a disability label. Ultimately, a person’s life — where he or she spends her time, his or hers relationships with others, his or her potential, and his or her hopes and dreams are both defined by, and at the mercy of, how others use the label.
This is not only patently unfair, but it borders on the obscene. Those of us who are not labelled would never allow others to inflict power over us because of a personal characteristic. Thankfully, more and more people are speaking up against the practice of delivering or “designing” services based primarily on a person’s label instead of the real needs of human beings.
But the greater misuse of labels occurs without us even being aware of it. I’m referring to the common practice of using disability labels across every environment in a person’s life!
Remember that disability labels are socio-economic passports to services. Why, then, do we use them outside of the service system? Why do we let a disability label infect an individual’s personality?
Why do we use labels in our homes, with families and friends, in community activities, and other places that are far removed from the service system?
At a recent conference, a woman who appeared to be in her 50s approached me and said, “My name is Margery. I’m a Down syndrome person.” My Twelve -year-old daughter later asked, “Dad, how can she think of herself that way? That’s not who she is!”
Why did Margery think of herself that way? You know why: because that’s what she heard about herself all her life. This practice causes untold injuries to the spirits of people with disabilities and is one of the greatest barriers to their success and inclusion.This can lead it self to what is called R.S.I. Repetitive Statement injurer, which occurs when enough people start to tell you that and you believe it. In addition, using labels outside of the narrow confines of the service system causes people to think they “know” someone because they know the disability label, even before they truly know the individual!
People with other conditions — conditions that are not considered disabilities — do not usually share their medical diagnoses with every Tom, Dick and Harry! I don’t routinely tell others about my dyslexia or my partners bunions. But many parents routinely tell others about their child’s disability label before saying the child’s name, believing every person who may have any contact with the child has some inherent “right to know” a child’s label. People with disabilities learn (from years of hearing others talk about them) to talk about their medical diagnosis more than who they are as individuals. Professionals and parents often assume the disability label is relevant in every area of a person’s life, and it’s used as indicator of a person’s abilities, potential, or character. But it’s not!
Let’s ponder this very carefully: whether a person is considered to have a disability depends on which services, programs, or laws are accessed. For example, what constitutes a disability differs from program to program. There’s one definition for young children with disabilities, another for adults accessing vocational-rehabilitation services, and so forth.
So, what is a disability? It’s whatever a given agency, organisation, or gatekeeper says it is! The proof that no universally accepted definition of disability exists rests in the reality that individuals must repeatedly prove they have a disability (and demonstrate how it affects them) before they are deemed eligible for a service. Thus, a disability label is simply a socio-economic passport to services. That’s all! (And we must actively dispute and resist the practice of using disability labels to define a person’s character, abilities, or potential!)
In our society, disability is a social construct. It’s a concept that’s been created to fulfil our society’s efforts — private and public — to (pick one or more): address the “problems” of disability, provide services and entitlements, protect people with disabilities from discrimination, and so forth.
But what if a person has a particular condition, and does not use any services? Does the person still have a disability?
In societies where there is no service system, there is no such thing as disability! Yes, there are people with cerebral palsy, Down’s syndrome, and other conditions. But when there is no service system, no benefits or entitlements, or no laws targeted to people who may share certain medical diagnoses, there is no social construct of disability.
We use disability labels across all environments in a person’s life. In doing so, we dehumanise the individual, making the medical condition the most important characteristic of his or her life, and we set the stage for physical exclusion and social isolation.
It’s time to deconstruct the “disability status” and recognise that the social construct of disability is not a constant state of being. We have allowed it to become so by invoking it in environments other than the service system. Our efforts can begin by restricting the use of disability labels and language to the service system. For example, spewing disability labels and jargon while attempting to get a child or an adult included in a typical activity is counterproductive. Instead, simply describe what the person needs to be successfully supported and included. Have you ever considered that disability jargon scares the pants off most people who don’t know what in the heck we’re talking about?
In addition, let’s recognise the many areas in which a person does not have a disability. At home, there’s no reason parents should constantly think of their Daughter as having a disability! She’s a daughter, a sister, a girl who loves Barbie dolls, and more. A “disability status” should not exist in the comfort and safety of her home.
In typical settings (preschools, community activities, jobs, and so forth) a person’s “disability status” is not important. In addition, yes, providing accommodations and support is necessary and important, but doing so doesn’t necessarily require invoking the “disability status.” I’m not considered a person with a disability, but I have many needs and require accommodations, as we all do. No special status is required before these are provided — people around me help because they care about me. Moreover, this is the way things can be for people with disabilities, because at home, among friends, and in the community, disability is irrelevant.
Clenton Farquharson is a director of Gallant 2000