The smell doesn’t change – it hasn’t for over 100 years. It’s the smell of urine, feces, body odor, musty hair. And it fills the halls, where it permeates everything within its path – it’s the smell of despair, stripped humanity, the ever-slowly-wasting-away of souls. It’s where some of us visit, some of us live, and too many of us die.

I am, of course, describing residential care facilities for those with physical disabilities – or, more aptly, institutions. Over the 100 years, the common verbiage has changed from asylum, to home for incurables, to institution, to residential care facility. Yet, beyond a name, fundamentally, nothing has changed – not the facilities, not our cultural practices, not even the smells. Those with disabilities still line the halls, locked away from society in literal five-by-seven-foot rooms that have fewer amenities than a prison cell – not even a commode of their own. What you’ll see is a twin bed pressed against the wall, a dresser, a TV, and a common cardboard box with one’s worldly possessions. Nine years, a woman with multiple sclerosis told me she’d been in her room – and I looked at the windowless walls of degraded paint, and thought to myself, Nine years of starring at blank walls absorbing her dignity, humanity, sanity. Nine years dying an emotional death, where she’s treated with less dignity than a convicted murderer on death row.

Now, it’s easy to point fingers and blame the mainstream for still accepting institutionalized care, still locking those with physical disabilities behind stone facades while the rest of the community drives by in luxury cars, never giving a thought to who’s hidden away in that “historic” building. And, it’s easy for families to convince themselves that it’s what’s best for their Billy or Diane, those who have severe physical disabilities, whose families know not else what to do.

However, I hold myself to a much tougher standard, knowing that I, too, am to blame. See, with a flip of a coin, I could have spent my life in a five-by-seven-foot room, where my humanity was stripped, and I wasted away, never to be known. As I tour institutions today, I see not those who should be there, but those just like me if a simple call had been made or the right question asked, where my severe disability and ultimately neglectful parents should have landed me in an institution. But, like missing a flight by moments, later to learn that it crashed, I didn’t end up in an institution. Instead, I went on to college, career, and family – a normality I could have easily never known. And, for those of us with disabilities living independent, upper-middle-class lives, we’d like to think that it’s due to our hard work or perseverance. But, it’s not. It’s just happenstance and luck, where the only difference between us and them was a cosmic coin toss, a stroke of luck that flung us down one path instead of the other, saving our lives while those just as worthy as us – our exact image – weren’t so fortunate.

And, with that reality – that the only factor that prevented me from being institutionalized due to disability was a random, cosmic coin toss – I struggle to live with the guilt and shame that consumes me: What have I done to help any of my peers who remain locked away? Who am I to sleep soundly at night in my custom home, on Egyptian cotton sheets, while my peers lay in a degraded five-by-seven-foot room, on soiled bedding, starring at windowless walls, their lives absorbed by the stench of it all? Who the hell am I to have escaped the death sentence of an institution, and not have had the presence of mind to go back and carry even one of my peers out on my shoulders?

Comments
  1. Frwheel16 says:

    Great story mark, I can say that I feared living like that and it did help me with my goals in life. Yes I had and still have a very supportive family it’s still a fear .

  2. Josh Winkler says:

    Mark,

    I have followed your site for years and while I’ve enjoyed every article you’ve written, this one tops them all. I too spent several years in the working world, failures in the system brought me into advocacy. Are you going to Harrisburg to see ADAPT in action this month? Unfortunately circumstances are preventing me from going, but having been born in PA this action means a lot to me personally. I appreciate the work you do in the mobility industry, if we all do our part we can improve the lives of all American’s with disabilities.

    Josh

  3. athenivandx says:

    Wow. Very powerful essay. That’s all I have to say for now. Similar can be said for people with intellectual disabilities and I feel a similar type of guilt.
    Thanks for writing this.
    Andrea

  4. mrscripple says:

    I remember my collage years, repeat visits to Branden our local place to lock our peers away that were “retarded” or hard to look at. I too remember volunteering at the Waterbury State Hospital and thinking that I too could be here if my family had at a specific moment in a time of stress decided to put me there. I know the guilt, shame, pain, and knowledge that we all could go back to those places with the way things are going!!!

  5. shasme says:

    I am so deeply touched by this essay. I’ve been a nurse for 22 years. My first nursing job was in such a place as 5×7. I spent my nights there in 12 hour shifts. I eventually left the institution for all the reasons you have already indicated. In addition, I began feeling guilty for the “pill dispensing factory” it had become. There was no hope in pushing pills from a giant medicine cart up & down the long corridors with barely enough time to greet the residents. Inhuman it what I call it; but I had no authority to make changes, so I left. Seems cowardly of me now.

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