December 04, 2013

Why I Don't Like Functioning Labels

"We are all different - but we share the same human spirit. Perhaps it's human nature that we adapt - and survive" -Stephen Hawking

Labels are always such a loaded subject. They can also become a divisive issue for all of us. "High-functioning" and "low-functioning" seem to be medical terms applied by lay people, often with either a sense of pride or a hope for pity and commiseration.

I see the word "function" as an action that does something, but that's it. A car can function without doors and windows. A car can function with a broken horn. It can even function without a working speedometer or lights. It can function with just the last dregs of gas left. A car can function, quite loudly albeit, without a muffler. How a car functions has no bearing on the comfort of the ride, the speed you get there, or its safety.

Similarly, a person's "functioning level"  has nothing to do with the quality of their life, their intelligence or capability to contribute to society. Functioning is decided by outside societal factors of what people deem "acceptable" or tasks that everyone should be able to do. Usually things like dressing oneself, feeding oneself, living independently. It's all relative and very similar the concept of "success." Success to one person might mean a large screen TV in a large house, with multiple fancy cars. Success to someone else might be a lifetime of nomadic travel with few possessions. Success to another might be a high school diploma and a job they are passionate about. Success to yet another may be staying home raising children.

I believe the concepts of both success and functioning should be up to the individual. If the person is happy, that's what matters. If being alive and sharing their presence with others is good for them, then so be it. Whether or not you can use the toilet independently has nothing to do with your level of intelligence. Whether or not you can speak, should have nothing to do with the work you can earn a living at, the art you can create or the volunteer time you can commit to helping others.

Let's take a look at Stephen Hawking, for example. He has a brilliant mind. He needs help to eat. He cannot walk. He can no longer speak. In fact, he needs assistance for all of his every day tasks. Despite this, he claims to be happy and is still publishing books. If you were to put a functioning label on his every day capability to complete even mundane tasks, it would be "low." If you put a functioning label on his book writing abilities and the insight he shares with the world, it would be "high." So how should this label be applied if it is to be applied fairly?

Or take a look at this study claiming even so-called "high functioning" Autistic people still struggle with life as an adult. Does high-functioning equal happy? Does it equal productive? What does it really mean?

What about people with MS? Some days they wake up with a good amount of energy to get through the day and a clear mind. Other days they wake up totally blind or with paralysis. Which label applies to them and when?

If high-functioning means I can feed myself, dress myself and use a toilet, is that all there is to life? If a person was considered "normal" and their functioning is reduced due to an accident or illness, is their life less worthy? Or of less value? Are their thoughts suddenly discounted?

As your grandparents aged and their bodies became unreliable, did you love them any less? Did what they have to say become useless? Were they just a waste of space?

There are people who are "high-functioning" - they can hold a conversation, use the toilet, feed themselves and such, but they are in prison for murder, and thus, not contributing to society. Does a function label really matter?

I've left a lot of open-ended questions so people can answer them for themselves. I won't be using functioning labels, however. Not for me, not for my son or anyone else. There have been episodes in my life where I was truly low-functioning. It's important to remember that functioning can change over time, and even from day to day and minute to minute. Functioning is not the be-all and end-all of life. There's so much more to life than just functioning

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