The next couple of years were spent cleansing my life and moving thoughts to their prospective right places, either gently aside or thrown out all together.  I continued my advocacy rampage and stayed in contact with others who had been given gentamicin and were now living the same as I.  There was something gnawing at me though.

It was the bite of being labeled as “disabled”.

            Hi, I’m Cheryl and… I am disabled – according to the label I was handed.  For me, that label only intensified the feeling of disability.  It was a label that once applied is attached with such force that it can never be removed.  Well, I refused to wear that label.

            I’ll tell you what, being disabled is tough enough but then to be adhered to a label and forced to live according to the ingredients added by something or someone else?  Really now, isn’t up to the person to add the ingredients, after all, I think I know best what recipes work for me.  Having a label places disability rights, needs, dreams and goals into issues and conditions to fight and lobby for.  Because of labels people lose their individuality and become an entity on which their very lives depend on whatever that label is allowed to provide.  Often, that provision is nothing close to what is really needed, that sense of inclusion with everybody else in an everybody else normal world.

            I don’t believe there’s a good human label.  Any kind of disabling label would direct a person into an immediate disadvantaged life.   Everything changes when you are labeled with something wrong or different with you; the way people interact with you, how they look at you, how they treat you and think about you.  There are stares of pity and even disgust that sear deep into your soul.  You can feel that pity and disgust and when you do, it changes how you feel about yourself.

Labels begin the process of separation from who you really are as a beautiful, unique and amazing person to living outside yourself in a place where everyone else has lost the concept of who you really are.  Labels plant you into another part of life where the light of life is dimmed and there is no seed of growth left to flourish.

            It is important to know that you will be defined under several different labels  – one’s you don’t get to define but rather are defined for you.  These are the labels used by medical professionals, support agencies, Social Security, Division of Vocational Rehabilitation, Independent Living Centers, Aging and Disability Resource Centers, health and other insurance agencies and many other service providers.  These professionals use labels as part of their “qualification” process.  And each has a very different understanding and definition of the word disabled and or disability.  These folks look at what’s wrong with you in order to review their guidelines to determine how sick or disabled you are to determine what therapy, equipment, and meds to use, your eligibility to receive Social Security Disability Insurance, basically, any services you may need or could receive to assist you in rehabilitation, and hopefully, independence.  I’ll talk more about this later as it deserves its own spotlight.

Then there are the labels society uses.  These are the ones I think really stink because the general public perhaps unknowingly feel they have the right to place us in places we certainly are not.  The general public really has no clue to what our conditions are, what it means to us, does to us, and makes us feel.  It’s the old school way that people think – if you are “different” you are not normal.  Can someone please tell me what normal is????

Labels file us under the category of which it stands for, not for which stands for us.  If there is anything you take away from this blog, please let it be that “labels are for soup cans, not for people”. (A quote I heard from one of the voices from “Stories across Wisconsin”, during a Self Determination Conference sponsored by the Wisconsin Board for People with Developmental Disabilities, http://www.wi-bpdd.org/).

Labels that define health conditions define compensation, acceptance, motivation, attitude, will, thinking patterns, interactions, and simply, how we get better.  I really believe that labels help set the stage for how people with acquired disabilities develop a personal expertise to embracing and living with their new normal.