We live in a society where labels have significant importance and are meaningless all at the same time. This strange paradigm really speaks to the radical changes needed to take place in the world before equality for all can be accomplished.
Let’s focus on the significant importance of labels with regard to the disabled (label). It’s not lost on me that in the first three sentences of this blog I have already labeled a large portion of our population, but it leads right into why labels have significant importance in our society. The “Big Book of Labels” otherwise known as the Diagnostic and Statistical Manual (“DSM”) is in many ways the gatekeeper for access to proper services and accommodations. Without that diagnosis (label) and the proper diagnostic medical code, the insurance companies will not pay. Will not pay for therapy, will not pay for services, will not pay for equipment, and will not pay for anything. Then there are the Schools and the Individuals with Disabilities Education Act where you must meet the definition of an “eligibility or disability category” (Anyone of 13 labels) before needs can even be considered to offer help. Let’s not forget about all of the other federal and state laws such as, the Americans with Disabilities Act (labels), Section 504 (labels) or any of the State Autism insurance laws (labels). The way our society is set-up, it requires all of us to fight for our labels. We have started to revel in our labels; if we remove our labels, brings a loss of services, accommodations and respect. Just look at the debate over the new autism definition (label) for the DSM5 if you think I’m wrong. Does changing the definition in the “Big Book of Labels” mean you no longer have the need for services and accommodations; no, of course not.
So, if labels are so significantly important in our society how can they also be meaningless? Søren Kierkegaard has been quoted as saying, “Once you label me, you negate me.” My son has been labeled over and over again in his 11 years. To help you understand let me begin by counting all the ways my son has been labeled, 1) learning disabled, 2) language disorder, 3) developmentally delayed, 4) small for gestational age, 5) short stature, 6) apraxia of speech, 7) sensory integration disorder, and 8) special education student. After you read all of those labels that have been placed on my young son does that tell you anything about him; no, of course not.
Why, because labels do not tell you anything about my son as a person.
Why, because labels are meaningless in helping to describe an individual.
Why, because we are all individuals with nuances and strengths and challenges and it’s that combination that makes us who we are.
Why, because every last one of us is different in many ways and yet more alike than you might realize.
Why, because my son, you, your children, and I will never fit in a pretty little box with a bow on top.
Why, because I refuse to judge a person by their label and I would rather see them for who they are.
Why, because once you label me, you negate me and you don’t get a chance to know the individual only the label.
So there is the strange paradigm; we need labels in order to receive proper services and accommodations but they are meaningless when describing an individual as a whole. I use labels everyday because I need to in my job as a parent and a special education advocate but that doesn’t mean I have to judge someone by their label. As a matter of fact, if you tell me you have autism or are autistic (whichever you prefer) all that communicates to me is that you might need an accommodation but it doesn’t tell me anything about you. The only way I will learn anything about you is to get to know you. I will however accommodate you, or your child, if you ask, such as:
- My son has autism, this is an emergency could I jump the queue for a public restroom; or
- I am autistic, I don’t really understand your meaning.
The label in this instance helped me understand the need for the accommodation. Although to be quite honest, I would allow any child to jump in front of me in a bathroom line if their parents told me it was an emergency and I would try to explain my meaning in a different way if anyone told me they didn’t understand. I wasn’t always this accommodating but being a parent has sure helped me get there. As I end this blog I will once again remind everyone that while labels have their importance they do not define us because, “Once you label me, you negate me.”