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
Emma's Hope Book 
And often groups are dehumanized not because they are perceived as weaker, sometimes its just the opposite, they are threatening because of their strength. Dehumanization needs to take part in the heart and mind and in the soul of the group that is doing the attacking as perhaps some form of detachment and to be able to use this subhuman status as a way to justify/rationalize their actions against other humans. Look at WW2 propaganda posters from both the Allied and Axis powers. They made the enemy nonhuman, as if to make peace in their minds that fellow human beings were somehow not being attacked and killed.
Just have to add that I too had a baby, drug-free at a birthing center with a midwife. It was one of the most incredible experiences in my life, it beat, hands down my hospital experience delivering Teddy with an OB/GYN. And funny, that baby, Meg, is now a vegan, but she doesn’t wear Birkenstocks. Chuck Taylors, but not Birkenstocks! 🙂 You are alright Ariane. You are more than alright! 🙂
Great point! I was so intent on thinking about disabilities and hospitals and institutionalization, I wasn’t thinking in terms of political dehumanization that occurs to justify every single war that has ever been engaged in the history of mankind. And there is obvious overlap here too.
There is definite overlap as I think the roots of dehumanization are universally common. Think too of the infamous Civil Rights images from the Memphis Sanitation Worker’s Strike – men holding up signs that simply say, “I am a man”. Dehumanization.
Chuck Taylors? I will now have to google 🙂
Oh you remember Chuck Taylors. Also referred to as Converse All Stars. What we wore “in the day” is cool baby :-)!
Ah! I STILL wear those!! 🙂
And so do I! 🙂
Or is it all right??? Oh, spelling, it will be the death of me!
or look at the dehumanization of the Jews during the Holocaust because they were so successful that they had to be working against Germany’s best interests. Or current Anti-semitism as this evil group who control the media as well as the banks and are very conniving.
Another good point! Yes. Absolutely.
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i have the same fear having Cerebral Palsy my biggest fear is being institutionalized when I get older but i’m working on being independent so that won’t happen..
Nisha – I am cheering you on!
I was always afraid of institutions too, but growing up different than most people I always thought of society itself as the scariest institution of all. I used to be terrified of it when I was a kid. It just seemed like a big power hierarchy where people who were different than I was got to tell me how to live my life, what opinions I should have, etc. As I got older and figured out better ways to express my feelings, I started using the term “born in captivity” to explain the helpless feeling I get from social hierarchies. Not that I don’t think people should live in societies. I just don’t consider power hierarchies to be a valid form of society.
I also read Go Ask Alice many years ago. It was a great book.
Agreed. Society can be treacherous.
Man, I’m sure glad I read this article. And, from my own observations, everyone needs to burn the last sentence of this article into their moral core. The last sentence says it best “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.” That is profound, and is substantiated by the proverb, “But for the Grace of God, there go I.” Thanks for sharing your wisdom.
Thanks so much. Appreciate your supportive words.
Holy guacamole! You just blew my mind!
You are a woman after my own heart because – wacky sense of humor, (do NOT tell me no one has told you that!) whole house full of adorable kids, husband who’s not afraid to don a pirate’s hat AND dueling eye patches who also makes mud holes for the kids… seriously what’s not to like?
😀
It’s nice to meet you! And thank you for the comment, which I’m taking to mean you liked the post, which means I already like you. 🙂
I’m also terrified of institutions, in my case I kind of have reasons to be, my former mental health team made my fear the possibility of a psychiatric hospital and I have many diagnosis, they also made it clear that people in those places were hopeless and not worthy or respect, too “crazy” to be a real person and they included reasons that are behaviours I also do, I don’t think I will ever lose that fear and that’s good because it makes me care about people that are harmed by dehumanization.
I think the problem is that institutions are not safe, you lose who you are in a place like that, you are not treated like an individual anymore and that’s is scary, the entire system is broken when treating people like that is considered okay.
I never read that book (that’s added to my list now) but learned about how terrible it could from people that have been there including some autistic bloggers like ballastexistenz.
I’m glad that’s not the fate of all autistic people anymore but I don’t think that should be anyone’s fate, the main problem is when society sees someone as less than human or abnormal, we don’t lock away people society values without moral outcry but it’s easy to convince people that some need to be locked away when that’s not true.
Horrible. Horrible that people who were supposed to help you, made you terrified. That, in and of itself, is wrong on so many levels, that they then exerted their “power” over you as well is heinous.
I agree. Any human being put into a place like that where they are repeatedly told they are crazy by others who have control over them would not do well. Aspie Kid wrote about exactly this. I posted a link to his post on yesterday’s blog post.
I have also had an intense fear of institutions, ever since I was very young, due to doctors wanting to hospitalise me as a child, and in later years, after a diagnosis of bipolar disorder, my psychiatrist suggested it. It may have helped me at that time, but I was so scared I just stopped going to psych appointments. Go Ask Alice and Girl, Interrupted, despite being good books, didn’t help this view. I still have some fear but it’s lessened because I feel it’s not the only option open to me now. Excellent post.
I’m so glad to hear you have other options. 🙂
I am so relieved Cali was born in today’s world and not fifty years ago when autism was shunned and misunderstood. To think of where she is today and the unbelievable, miraculous progress she has made makes me proud and well aware of how wrong people were back then. To think of all the individuals who were institutionalized wrongly. Those who were fully capable of living productive and functioning lives, but didn’t because they were “shipped” away is a tragedy! We have come a long way!!! Still have plenty of room to move forward, but definitely have come a LONG way!
Thanks again for yet another thought provoking post. They are quickly becoming a highlight for each of my days!!
I so agree and in another 50 years we will look back and shake our heads in disbelief at the things so many still believe about those who are non-speaking.
I am not sure a fear of institutions is irrational – hope that helps – I rather feel an initial mistrust of institutions to be a rather logical approach. Hope that helps.
Enjoyed the serious depth and connected issues raised in the post, my thanks for sharing.
Thanks so much for reaching out!
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I’m terrified of institutions too. But that was my mother’s big thing, “act normal or we’re taking you to the psych ward & leaving you there”. Confinement is scary. Loss of autonomy is terrifying.
Oh Kassiane… horrible… particularly from someone who’s very existence should have been all about protecting you.
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