Category Archives: disability

I have always had an irrational fear of institutionalization.  Irrational because I have no “diagnosis” or valid reason that would make such a fear reality unless you count being high-strung, emotional and I’ve been told over the years, “too sensitive” but I don’t think people are ever actually institutionalized for that… or are they?

Maybe it was the stories I was told as a child about a couple of my relatives, now dead, who were institutionalized against their will by family members intent on getting them out of the way, or perhaps it was from all those months my father spent in the hospital clawing his way back to the living after a horse back riding accident that left him disabled for the remainder of his life, or maybe it was the books I read and was drawn to as a teenager.  Books detailing (supposedly) real lives lived such as Dibs in Search of Self, Sybil, The Three Faces Of Eve and Go Ask Alice.

Whatever the reason, I had and have a terror of being “put away”, locked up somewhere.  This fear includes hospitals, group homes, prison, any place that removes my ability to walk away when I choose, and places my care in the hands of others.  As a quick example of how much this fear permeates my life, I gave birth to both my children naturally and in birthing centers, not because I have an aversion to drugs, (I had a lively and deep attraction to drugs of all kinds during my teens and early twenties – I do NOT recommend this) or because I’m a granola-eating, Birkenstocks wearing vegan. (I’m not.  Not that there’s anything wrong with anyone who might fit that description.)   No, I gave birth naturally and in birthing centers because my fear of hospitals aka institutions is so great I begin to feel real panic even writing about it.

When I had to have a partial hysterectomy last winter I informed my surgeon I wished to be the first one in and assured him I would be going home that evening.  When he suggested I might want to stay overnight at the hospital, that even in the best of circumstances I would probably NOT be released to go home, I became so agitated and visibly upset he relented and said he would do all he could to get me home that night.  And sure enough, despite being so out of it I could barely put two words together, let alone a whole cohesive sentence and had a head the size of a watermelon from having been hung upside down for more than five hours, I managed to get myself upright.  My husband, using all his strength half carried, half dragged my useless, morphine infused body out of the hospital and into the relative safety of a taxi driven by a kind, middle eastern gentleman whose upper head was encased in white cloth aka a turban, that reminded me of medical bandages.  In my drugged state I kept imagining I saw blood pooling on the white cloth and had to open a window so as not to hyperventilate and throw up.  As the taxi careened along the streets of Manhattan, I allowed my body to slump against my poor, patient husband who was busy distracting himself with the latest New York Times Crossword puzzle.  Even so, all of this was well worth the effort as I made it home and into our bed by 10:00PM that night.  Panic attack thereby averted. *Whew*

When my daughter was diagnosed with autism, my fear of  institutions was the one fear, outstripped by any other, that brought me to my knees.  For years it was this vision, that horrifying gothic institution, dark and forbidding that I became convinced would be the inevitable conclusion of not my life, but hers once my husband and I died.  It was this looming image in my mind that made me hurl myself headlong into various remedies and treatments.  For years I felt sure that anything we could do to save her from such a bleak future was surely a worthy goal.  It just never occurred to me that what I thought was inevitable was not. And this is where I thank my Autistic friends for courageously sharing their stories with the world.  Because of them, their lives, their stories, I no longer believe this is my daughter’s inevitable future.

Judy Endow is a writer, a consultant, a mom, who conducts workshops on Autism related issues.  Judy is Autistic and spent several years in an institution as a teenager.  In her terrific book, Paper Words she discusses how she perceives the world by the movement and sounds of colors and writes,  ”… please entertain the notion that a person who has an internally wired neurology to enable this, though a bit different from most, may not be any less intelligent, or indeed any less of a human being, than the typically wired folks, who are clearly in “The Majority” in the world-people world that we all inhabit.“

As I read Judy’s powerful book I reflected on the nature of institutions, disability, aging and difference and how we humans tend to dehumanize those we believe to be weaker than ourselves, whether physically or mentally or both.   Until we can begin to embrace that which we do not understand or have experienced we cannot really know the harm we do, intentionally or not to those who must rely on others for understanding, accommodation and help.  Most of us, at some point in our life, will be dependent on another human being to have, at least some of, our needs met.  Let’s all hope we are fortunate enough to have someone who understands theirs is not a position of power, but a gift each of us can give to another, until it is our turn to receive it.

Em’s Self-Portrait – January, 2013