Getting My Head Around It

     I have come a long way in two years when it comes to wheelchairs--my being in a wheelchair.  Maneuvering it.  After all, though in my 50s, I have never driven a car before now.  But, more to the point, I have come a long way in terms of surmounting fear.  "People are going to treat me differently.  Once again, I will need to be on the defensive to protect myself from misunderstanding."
     As far as I have come, I have yet to get my head around one aspect of wheelchairs.  Headrims.
     They are for other people.  Other people need them.  Not me.."
     I resisted the insurance representative, as sweet as she was, when she asked me to consider purchasing a headrim.
     "Think of your long-term needs.  Not now.  Not a year from now.  Think about your needs five years down the road." she said to me.
     I do not dwell on it, or I would never get out of bed in the morning.  But, someday, I may lose the capacity to use my left hand---the only hand available to me for meaningful use, since my right hand is affected significantly by cerebral palsy.
     Just now, surfing the web for information about wheelchair accessories, I came upon a picture of a boy in a wheelchair using a headrim.  Intellectually, I know, it is magnificent that headrims exist to provide mobility, and opportunities to stay actively engaged in this life we have been given.
     Yet, my intellect does not assuage the pit in my stomach.  Someday I may find myself in need of a headrim in order to remain mobile, and active.  What will that day--that life--look like?  Will I be able to talk?  Will people be able to understand me?
     I remember the most difficult time of my life.  I was in the hospital for nine days.  I had a toxic level of anticonvulsants in my bloodstream.  I was hooked up to an EEG for an outrageous nine days--outrageous by any standards of medical practice.  But, that was not the most difficult part of my life.
     "Just tell me.  What am I supposed to do.   Go back to work and try to figure out how to cope with my disintegrating body?  Stop working?  What?  Tell me.  What am I supposed to do?  Just tell me, and I will do it."
     I talked to my family incessantly.  Several good friends.  I had no sense of time.  I had no sense of what to do.
    That was four years ago.  A lifetime ago.
    Did I really work full time?  Did I really work for a large corporation?  Did I really work for the same company for 24 years?
   I never thought I would be working at the same company when I turned 65.  Yet, I did not know where I would be.  I still don't know.  I knew that I did not have the courage to seek a job elsewhere.  The prospect of being told I did not measure up was too much for me to confront.
     Had you told me in the hospital in 2009 that I would live the life I do now, I would not have believed you.  Volunteering twice a week doing research at  a museum.  Being very active in advocating for Catholic Church reform.  Preparing to advocate for accessible mass transit in the metropolitan area.  Writing blogs.  Swimming.  My life in 2013 was unimaginable in 2009.  Though intellectually civic-minded, "volunteering" was not a word in my vocabulary.  I could not define it.
     What will my life in 2017 be?  Will I need the headrim?  Are there other accommodations I will need to make?  No doubt there will be some.  What will they be?
     Right now I use my wheelchair to travel long distances.  I am able to walk around my home.  Yet, buying a refrigerator last summer opened to me the cold hard facts I needed to confront.  What dimensions--what height and depth did my refrigerator need to be to accommodate a Patty Thorsen in the future, who would be constantly bound to her wheelchair?
     Move me toward understanding, not what 2017 will be, but, toward what I will need--what inner resources--to live an engaged life.  Settle my queasy stomach.

Disability Defined in Statutes--in the ADA

     A healthy, intelligent medical partnership" regarding individuals with disabilities must begin with a definition of terms.  I will begin with the statutory definition stated in Section 12102 of the Americans with Disabilities Act of 1990 (ADA).  That is my starting point.  I write the Brain Damage Diary, and Patty's Epilepsy Chronicles to share a much deeper understanding of disability that we must strive to achieve--that we must create.
     Section 12102 defines disability as follows:
     (1) Disability
The term "disability means, with respect to an individual
(A) a physical or mental impairment that substantially limits one or more major life activities of such individual;
(B) a record of such an impairment; or
(C) being regarded as having such an impairment (as described in paragraph (3)).
...
(3) Regarded as having such an impairment
For purposes of paragraph (1)(C):
(A) An individual meets the requirement of "being regarded as having such an impairment "if the individual establishes that he or she has been subjected to an action prohibited under this chapter because of an actual or perceived physical or mental impairment whether or not the impairment limits or is perceived to limit a major life activity.
(B) Paragraph (1)(C) shall not apply to impairments that are transitory and minor.  A transitory impairment is an impairment with an actual or expected duration of 6 months or less.
     This definition is vague--intentionally vague.  The ADA of 1990 was crafted as a guideline--an instruction to a civilized society, in this case the United States, as to how to regard individuals with disabilities in daily life, and availability to resources sufficient to be a citizen who makes valuable contributions to society.  There  has been, and will continue to be significant litigation and debate regarding the nature of the term "disability."
     The ADA of 1990 definition of "disability" provides the starting point for my offering of the phrase "individual with a disability."  The ADA definition was developed as a guideline.  My definition, my descriptions--my reflections--are shared in the hope of spurring discussion, and nurturing greater understanding.