Disabled people are graded. Unlike with non-disabled people, our perceived value in society depends on how “comfortable” the majority feels about us.
This is another way of looking at functioning labels.
Non-disabled people, the majority of them, prefer to accept the absurd idea that, when you are disabled, you must be categorized in one of two classes: a “low” class or a “high” class.
This kind of “acceptance” is because some people are too apathetic to question and defy this wrong idea that disabled people don’t ever change, learn, experience and react to events in a human way.
This is the same group of people that agrees that we must be “fixed” and “improved” in order to be “allowed” to make choices and to be heard.
It should be noted that the ones who don’t give up using functioning labels are also looking into profiting from approaches that would “make us better, more like normal people”. They make money by grading disabled people and promoting approaches, which they call “therapies” , that make the majority feel better about our existence.
But they are not the only ones using functioning labels, and they are not the only ones hurting us.
Let’s begin with parents.
First, what I say here is not “ignore the difficulties” but rather value your children’s strengths, support them, and help them find, or learn, the best way to deal with their individual difficulties. This includes therapies that value who they are and work with them to make certain aspects of their lives easier to cope (without trying to change who they are), and support with whatever is needed for them to achieve their own definition of independence, including self-determination.
You don’t have to ignore doctors. Some disabilities do need a lot of medical attention. What you should ignore are predictions made by professionals that can only value human lives if those lives are as close as possible to what they see as acceptable and worthy.
If you believe your child is broken and too “low-functioning” to succeed, and if you fall for the false idea that a “low-functioning” human being even exists, you are hurting your child.
Self-esteem matters. Being assumed to be competent matters, even if we don’t fulfill all of our parents’ expectations. As we grow, we develop our own sense of worth and we start to develop our own goals and our expectations for ourselves. This is true for all human beings.
If all we hear is that we can’t, that we need to improve, that our future will be not good because we are part of a “low” class of humans, we don’t learn that we can expect to be valued for who we are. This attitude, coming from our own family, becomes a self-fulfilling prophecy.
The same is true for parents who like to set their children apart from other disabled people by making sure the “high functioning status” is always mentioned.
These parents usually don’t allow the children to make mistakes, or act in any manner that appears to be how they say a “lower functioning” person would act. This is an impossible expectation because everyone makes mistakes, messes up and will have at least one big meltdown in their lifetime. The so-called “high-functioning” children learn to be compliant, or they learn how to hide their true selves, or they learn how to hide emotions (at a very high personal cost). They become young adults and adults who are afraid to ask for help, if they are taught that they don’t need certain accommodations.
Parents’ attitudes toward their children can influence how the rest of the world will see and treat the children. For parents of disabled children, attitudes that are not based on an arbitrary grading are even more important.
Because disabilities are largely seen as unfortunate, undesirable and often tragic events, rather than a natural occurrence, or even an uninvited outcome that nonetheless becomes part of who we are, there is already great focus on defining and listing our perceived deficits.
After the list is done and we are “classified”, the focus turns to trying to make us “blend” with the majority, or to “train” us to act like the majority’s way.
This approach does not work and devalues who we are. Besides, the world misses on getting to know our true selves, it misses on learning that there are many different ways to accomplish things, and that definitions like “success” and “independence” are abstract, unique to each individual.
I suggest that parents and close friends of disabled people stop using functioning labels and start valuing our existence as we experience it. That’s not saying that we should not be exposed to learning opportunities. It means respecting our timing, choices, and way of being.
I also suggest that parents and friends of disabled people demand that school and doctors stop using functioning labels. It may not be easy but demanding respect is worth any effort (and contrary to what people might say, using functioning labels is not necessary for services).
Let us define ourselves. No disabled person uses functioning labels as part of their identity – the ones who call themselves “high-functioning” do so because they are not yet accepting of their disability, or because they are supremacists, trying to distance themselves from the “rest of us”.