Skip to main content

View Diary: "Am I disabled? Or am I a child?" (61 comments)

Comment Preferences

  •  My oldest sister lives her life, complains about (11+ / 0-)

    her ills, asks for help obtaining things that require driving and matters of taste (such as this week - I need to find so we can shop for spring/summer clothes) and explicitly tells us when she will do something vs. wants another member of the family to do/help.

    She's mentally retarded and almost 50 years old, went into a parallel education path (i.e., towards trade emphases) after elementary school and has almost always seen people who treat her as being "different" - but, not in a helpful, constructive way - as being odd.  That is, she rightly has seen such people as being the ones who exhibit problems that could use solving.

    Her identity is simply that she is a woman, living with her boyfriend, getting help from family, obtaining public assistance, working a few days each week through a county mental health/support program and who needs new pants - so, can I take her soon?

    Like many of us, what she is happens to be part of who she is and colours how she thinks about herself.  But, mostly on her own terms - and, I think that's an important aspect of anyone's sense or reality of identity.

    For example, my middle sister lived almost haunted and embarrassed by her mild, palsy-like and emotional swings - symptoms that grew into near-constant worries which eventually consumed her personality by her later 20s.  It went even more sour on the flipside, after she was placed into managed care homes where most of her peers were people she did not aspire to be similar to and even resented - her level of analytical intelligence never waned, but her emotional symptoms caused such awful distress and health placement situations that my father was always fighting to make more optimal (after she became too difficult to manage in later years at home).

    It was only in the final year of my middle sister's life that she seemed to finally find an implicit peace within herself, having lowered all the expectations that she'd learned from others were to be the many measuring sticks of her being "accepted" by people she aspired to be like/with.  People who never mattered in her daily life, but images of ideals that she couldn't leave behind.  Her imagination was vast and that became a double-edged sword in the latter half of her years, unfortunately.  I was glad we got to know her all over again, the fun, intelligent sister and daughter who had always been inside, before a sad lack of dutiful medical care - by her then-managed living home - eventually led to a sudden passing.  She died with an identity that was akin to what she had earlier in life: based on how she felt about herself as a person, her family and things she accepted were possible to do or think about each day, without worrying about what may-be or might-have-been in deeply regretful ways because the larger society advertises almost all value via perfectly sculpted images of bodies and minds.

    "So, please stay where you are. Don't move and don't panic. Don't take off your shoes! Jobs is on the way."

    by wader on Sun Apr 20, 2014 at 06:45:41 PM PDT

    [ Parent ]

    •  Thank you for this (8+ / 0-)

      Part of what gets me wound up is the unnecessary suffering like what you describe in your middle sister's experience. Your oldest sister sounds pretty rockin'.

      Our larger 'official' society seems panicked by disability and polices the margins of the valued behaviors and appearances. Otherwise, whence the fear of difference and rejection of those who do not, or cannot, conform?

      Darling, you didn't use canned salmon, did you?

      by JrCrone on Sun Apr 20, 2014 at 07:07:54 PM PDT

      [ Parent ]

      •  For most neurotypicals (4+ / 0-)
        Recommended by:
        wader, JrCrone, worldlotus, mettle fatigue

        I think this is innate.

        whence the fear of difference and rejection of those who do not, or cannot, conform
        They can learn to overcome it, though, but they have to first recognize the impulse and then think about its fundamental unfairness.

        Neurotypical people often lack social skills, too, but many seem quite resistant to learning to improve them.

    •  JrCrone, wader's "the larger society advertises" (6+ / 0-)

      may very well be where this pressure comes from.

      Back in my 1960s college years, a recommended book in sociology was entitled, approximately, "Manners, Mores, and Morals", a book detailing the premise that every society/culture involves a continuum of promoted behavior and despised behavior, was an eyeopener for me, because I had been doing volunteerism from about age 9 onward that put me in organizational work settings, among adults many of whom were paid staff, and that book and class explained a lot of changes in society that really had me at sea.

      the wikipedia page seems to describe pretty similar to what i recall, as the range where manners particular to the society/culture start to take on a moral dimension, as if "well-behaved" in social terms, and the capacity to choose and control every tiny aspect of one's appearance and conduct in every moment becomes considered akin to 'virtuous' behavior, and anything less or different becomes eligible for pointing out as inferior, and subject to ridicule and disgust.

      Basic to that is the fact that it's disgusting for a person of lower status to accidentally (i.e., without control of own's own actions etc) make others feel uncomfortable (and by that to draw the proper punishment of derision) but it's also a social prerogative of high status to intentionally make persons of lower status uncomfortable and marked for punishment purely for being of lower status, as if a lesser human being.

      Movies, television, the blogosphere, and most of all ADVERTISING decree what is desireable appearance and behavior under what circumstance. They also exploit human herd instinct (which involves some degree of seeking for approval from one' peers) to drive us to invest emotionally and financially in trying to have and be what's shown to us as desireable and approved.

      There are a lot of wrinkles in this that i find absolutely fascinating, but probably most people don't, so i'll leave it at that, i guess.

      •  It potentially explains much even beyond how (4+ / 0-)

        those considered disabled are treated, as well - i.e., LGBT, other colours/nationalities, low/no income, etc.

        I realize we're all in a serious topic here on potential identity impacts from culture when disability is involved, but it's fascinating that sociological studies have long revealed a human tendency gone extreme in libertarian/right/Republican people concerning their increasingly narrow fight to define whatis normal and acceptable in today's society through money, politics, unabashed hate speech and even threat of force.

        "So, please stay where you are. Don't move and don't panic. Don't take off your shoes! Jobs is on the way."

        by wader on Sun Apr 20, 2014 at 09:37:08 PM PDT

        [ Parent ]

Subscribe or Donate to support Daily Kos.

Click here for the mobile view of the site