The Disability Community has done an excellent job spreading awareness, and advocating to eradicate The “R” Word. We may never be totally done with it, but its usage, particularly in books, movies and television, seems to be greatly reduced, thanks to public outrage through social media and boycotting campaigns. Personally, I think it’s time to do away with another problematic label: “high-functioning”. This will likely be a taller task, because unlike The “R” Word, “high-functioning” is used, primarily, by people within the Disability Community, to describe ourselves or our family members.
“My son is high-functioning,” a mom or dad might say, as an entrée to a school setting, an after-school program, a church daycare, a job interview – or maybe even before that son or daughter is left with a babysitter for the first time. In other words, “even though my child has a disability, he’s really smart and capable and won’t give you any trouble”, or “my child speaks really well so you won’t have to struggle to understand what he wants or needs.”
People with disabilities are already at a societal disadvantage. They are easily sequestered or shunned because they might speak with a stutter, or look different, or behave in a confusing way – and they are constantly having to overcome obstacles and prove themselves “good enough” to fit in, or be accepted, or be included, or be hired, until people have taken the time – if they do take the time – to get to really know them. And take a moment to think of the individuals who might be labeled “low-functioning”. Why do they have to be exposed to these unnecessary distinctions every day of their lives? It’s hurtful.
When we use the term “high-functioning”, we are being exclusionary, and creating a hierarchy of people within our own community, these same people who have fought and will fight these acceptance battles their entire lives. We are saying, “this person is better than that person.” “This person will be much easier to (fill in the blank) than that person.” And, from almost 30 years’ experience working with people with disabilities and family members, and 25 years’ experience as a father of daughters and a son with disabilities, and 62 years on this planet, I can also say it’s simply not true.
I guess I’d be considered “high-functioning”. I don’t have a disability label, I have a Bachelor’s degree from a college, I write and edit articles for a magazine, I develop and facilitate training programs, and I go around the state teaching youth and adults about disability topics. But I have “cognitive vacations”, when I just can’t say or write what I want to say. I have days when I simply can’t get my act together, and I just need somebody else – more capable at that point in time – to carry the ball, or the weight. My functioning can be a day-by-day or even hour-by-hour measure.
Recently, my wife Gina and I were at a gathering of parents, all family members of people with autism. What brought us together was the reality that none of our adult sons or daughters were having success finding or keeping employment. Most were dealing with behavior issues that had surfaced in work settings, which made their bosses, co-workers or customers uncomfortable. Most were dealing with motivation issues, because our adult children much prefer staying focused on their game console, computer screen, or other special interest to waking early, showering and dressing, leaving the “known” of home, and going to work on a regular basis. Even so, down the line, most of the assembled parents described their children as “high-functioning.” In most cases the parents were referring to the fact that their children could communicate, with words, pretty effectively. (Though I’m not even sure that’s a fair statement.)
The sixth or seventh time I heard that term used, I finally spoke up and said, “I would like us to stop using that term here. Our kids are not ‘high-functioning’. Our kids have some really significant challenges to working consistently, making money, and someday living on their own. I can tell you the names of 12 young people I know who have intellectual disabilities – who might be considered ‘low-functioning’ – who go to work five days a week and are making a decent living, and in some cases are living in their own apartments or with roommates. If our kids were truly ‘high-functioning’, we wouldn’t be sitting around this table.”
We don’t need or benefit from more labels. We need less labels. Labels tend to group us and set us apart, and get us further and further from being viewed as individuals. I am all in favor of explaining disabilities based on what an individual is capable of doing, and what he may need some support with. As a father of three now adult children with disabilities – one with cerebral palsy and two with autism – I know that saying my daughter has cerebral palsy, or my son has autism really tells you very little. We know that autism is considered a “spectrum”, because there’s such a wide range of characteristics to people who experience that disability. Some are verbal, some are not. Some are social, some are not. Some want to wear the same blue shirt every day, others crave variety. A person with CP may use a wheelchair or a walker, or may just walk with a different kind of gait. Some have articulation issues, some speak crystal clearly.
You get the idea. So, for that after school program or job interview, it’s much more practical, for everyone involved, to talk about what your daughter’s skills and attributes are, and what she’ll need help with. Let’s think twice before using “high-functioning”, especially when what we’re saying, what we’re conveying is, “my kid’s better than yours.”
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