The world can be a confusing, complicated place. To deal with this the human brain is very keen on the creation of labels and cognitive shortcuts to try to put some order on the chaos. The terms used about people with disability by others and not them, are worth exploring.
In a 1998 Scott Danforth, a professor of Teaching and Learning from the States stated in relation to the terms used for people with disabilities:
“In my experience, the scariest thing about these labels is the way we create them and then run around pretending they are not humanly created/perpetuated. We treat them as if they are solid as a rock, unchanging, unquestionable. We also pretend that everyone using a given label or term means the same thing, an inevitability in language use.”
Many terms are used for people with disability, most of the terms being linked to the person’s medical or educational diagnosis. The pervasive use of the terms mild, moderate, severe and profound levels of intellectual disability is an example. These terms are still used in services for people with intellectual disability to give a sense of what services are required to support the person. For example, someone with a severe level of intellectual disability needs more supports than someone who has a mild level.
When you ask students what are the positive uses of these terms the answer is usually, by having a sense of the level of disability, the application of a label can support someone to gain the requisite funding and supports from the government. Fair enough.
But the use of these labels when discussed in relation to what Danforth says above, is enlightening. They are created by professionals, based on IQ scales primarily and are still used by many services to describe their client groups. These terms are seen as solid enough to be used by professionals in disability services, in the categorisation of people with disability. But once placed in one of these four boxes, what about the person who has been labelled.
Ok, they can have access to the required services, but how does the term empower the person to live their vision of desirable future, do the job they want to do, go out with the friends they want to go out with, to make the choices they want to make.
And the issue is seen as primarily as focussing on the person’s side. The medical model approach which sees the person as being the problem and having to be changed. In reality, the level of a person’s ability is as much linked to the environments they are in and the skills of the people that support them, as the disability they were born with. So the label is not static and can vary depending on many circumstances.
Marc Gold, a pioneer of supporting people with disability to acquire skills in a systematic way, had the foresight to see that people when they are supported properly can learn many new skills, regardless of the IQ they have and the band they have been placed within. In one of his videos made in 1973 (access more details here), he shows that with proper support Barbara who has an IQ of 18, can learn to make bicycle breaks to the same if not better standard than factory workers in a factory down the road. This video was made over 40 years ago, how far have we moved in supporting people with intellectual disability to learn?
Barbara based on the level of disability scale in many services would be defined as severe to profound and access the services normally provided for that group. Gold provided Barbara with the skills to get a job and earn a wage.
Let’s be careful about the labels we use, and focus on the person and their capacities; rather than the diagnosis or measurements of professionals. Language has power, it provides us with cognitive short cuts. But when you hear the terms mild, moderate, severe or profound think not only of the person and their disability but in what context are they being defined in this way and how can we, working with them, progress their vision of desirable future.
Learn more about labels, and person centredness in our modules. Explore them here.