When I first saw the video, ‘She Never Knew She Never Knew,’ I sat in my chair stunned. The visual, the words, the powerful message with it’s underlying outrage touched me somewhere deep down in my heart. Institutional hallways have resounded with the echos of my steps. I’ve seen the ‘land of the long corridor’, I’ve seen what it does to people with disabilities who live there, I’ve seen what it does to the staff who work there and I've seen what it does to family who visit there. The video was stunning, but it was the words of the song which captured me. The incredible sense of loss … the mammoth theft of life which occurred in plain view. “Who pays the time for the crime against an innocent child?” is the question the song asks. The answer is stark …
So I approached my interview with Dana Mase, the songs singer and co-writer, with a bit of trepidation. I’m not an interviewer, I’m also someone who reacts to talent with awe and I was afraid of simply making a fool out of myself. I called Dana at the specified time and she answered with a warm voice and was very open to speaking with me. She told me that the song came to be because, Myles Wren, a friend who worked with people with disabilities was thinking of doing a documentary and wanted her to write a song for it.
During the course of their conversation Arlene’s story came to the fore. A lovely, kind and gentle woman had lived much of her life locked away for the crime of difference. Dana said, “If I was going to write a song about her experience, I had to get to know her, meet her, spend time with her. I found a woman who was warm and lovely. As I talked with her, I began to understand what had been taken from her. She was a little child, she had no say.”
I told Dana that her approach to Arlene's story was what captured my heart and mind. I have spent so much of my life working in the area of abuse and victimization that when I think about the captivity of the institutions, I think about what was done to people there. The outrageous stories of abuse which continue to shock us, continue to hold us accountable. However, Dana's song opened a different part of my mind to a different part of the story. I understood what what done to people with disabilities but I did not consider, as I should have, what was taken from them. Perhaps the greatest abuse was the theft of the life that could have been lived.
Later on, in visiting the institution where Arlene had lived to film the video, Dana reflected, “The contrast between this warm, beautiful person and this cold cruel institution was hard. It seemed just so unjust. Until I walked in there I had no awareness that this had occurred. This blew me away. It seemed just so wrong. For people to blossom, there must be warmth and love, this seemed to be the opposite of that.”
Dana also spoke about how, as she came at this from ‘outside’ from ‘not knowing’ she had to go deep within herself to write the song. In doing this she realized what pain had been experienced and that “you can’t fix it, it’s done, lives have been stolen, basic things that are taken for granted, she missed them, they were taken away from her.’ It was this understanding that has led Dana to establish a therapeutic riding programme for people with disabilities. "I want people to have all sorts of experiences open to them. I want them to be able to experience as much as they can in this world. I love horses, I thought this was a way I could share that love."
Myles Wren, was also kind enough to speak to me. He works with a lot of older people with intellectual disabilities. Many of whom lived in large institutions. Many of whom had stories to tell, stories that are unlikely to be heard. Arlene’s story touched him deeply because, over time, he’d formed a bond with her, ‘when my father passed away, Arlene put her arm around my shoulder and told me that she would be there for me.’ Here a woman who had no family, knew, instinctively, how to be family.
Both Dana and Myles, who is a co-writer of the song, hope that the song and the video will be used to raise awareness and to focus on the injustice of lost lives, unlived loves, unexperienced dreams. I believe that the song does that. I believe it is making a difference. Both Dana and Miles speak of how the song affects others with a bit of awe, Myles said, "Everyone who sees it, understands it, almost everyone cries," and Dana said, "The song touches people for a reason, what they are seeing is a tragedy beyond understanding."
She Never Knew She Never Knew … but we know what was done. And because we know we have a responsibility to make ‘never again’ more than a slogan, it must simply be our pledge.
For those who missed the video last time, here it is again:
Wow, just wow.
I was angry at you when I saw that video for the first time. I didn't like to be made to feel feelings that I've stuffed away. I did not live in an institution, I lived with something equally damaging. I lived with being my mother's tragedy and my father's disappointment. They didn't want a child on wheels. They never took me out, admitted to only a few of my existance. I was home schooled, the call it now, but the experiece was rather like getting education in a prison cell. If I left the house, it was after dark, and we'd drive long distances to be in placed where we'd meet no one we knew. I never knew about girlfriends, and gossiping, and dances, and playing with others. The difference between Arlene and myself? I knew I never knew. And it's left it's mark. I can't go out without a sense of shame. People's stares hurt me to the core, more than they should, because I know that my parents fled from them. Mr. Hingsberger, I happened upon your blog while looking for something else. I've stayed ever since. I've never commented. But I want you to know that you have introduced me to a world of pride and self respect as a person with a disability. I don't know why you write this blog, I can sometimes feel the cost behind the words. But I want you to know that for me, here in the rest of the life I have, you have made a difference. Thank you. On the 23rd, I will hold a small funeral for my childhood. Then, I hope, I can say goodbye to all that and begin to work on beginning. I shall play this song as my prayer for the childhood, for the life, I lost. Thank you Dana and Miles. Thank you for telling the story of many of us.
I have watched the video four times amd each time Dana is able to send to me the loss we have all suffered for the treatment of those like Arlene who were shut away for the crime of difference. What a powerful message. Thank you for sharing the video.
Dear Still in Hiding: I will light a candle for you too, on the 23rd.
"There is an appointed time for everything. And there is a time for every event under heaven—
A time to give birth and a time to die;
A time to plant and a time to uproot what is planted.
A time to kill and a time to heal;
A time to tear down and a time to build up.
A time to weep and a time to laugh;
A time to mourn and a time to dance.
A time to throw stones and a time to gather stones;
time to embrace and a time to shun embracing.
A time to search and a time to give up as lost;
A time to keep and a time to throw away.
A time to tear apart and a time to sew together;
A time to be silent and a time to speak.
A time to love and a time to hate;
A time for war and a time for peace."
God bless you on your journey. Know that there are others sitting on the mourning bench with you...
Dear Still in Hiding,
It's not often that I feel this terribly sad and angry and hurt. I have lived in an institution but not one like the terrible prison that you grew up in. I am sitting here not able to write and that doesn't often happen. I send you strength but I see that you are already on your way.
Maybe my blog will be interesting for you. Mind you I am a radical crip on wheels but I am sure you have come across them. I have grown so much from sharing with others, my peers, my people.
"Never again" - I am in on that. The thing is we are still doing it. Institutions still exist. Sometimes they are not huge like the one that Arlene was incarcerated in. Sometimes they are group homes or segregated services that keep people segregated instead of supporting them to live their lives as they wish. Institutions are not comprised of walls - they are the result of attitudes/prejudices - and we still have them. We have such a long way to go.
I am a sister of a man who lived most of his life in institutions. The cost was huge - to him first and foremost, to our family also. I shudder to hear the hint of blame in this song. My parents were not monsters, they were desperate. I don't think that my mother ever recovered from having to send my brother to an institution. My other siblings and I were robbed of our brother and much of our mother. I am so grateful that he was part of my life but I am not grateful for what happened to him.
Beautiful song, much needed message.
If you ever question yourself re writing a blog, come back here and read the comments.
I will be marking this day.Thank you for openning up this difficult part of our history.
I read the words but could not get the video to play the first time you posted. This time it played. It is horribly tragic this history of ours. The life my little one with Ds would live had she been born 50 years ago makes me shutter.
Unfortunately, it is still going on in Eastern Europe and many other countries. I walked the halls of several institutions (they call them invalid hospitals) in Ukraine last summer. The experience will never ever leave my mind. I hugged skeleton children who still managed to smile and say thank you for the banana I was feeding them. I know that many have already passed due to neglect and lack of nutrition.
When will the rest of the world realize the potential of our beautiful children?!
Praying EVERYday that things will improve.
I have never been inside an institution but have worked with those who "came out" since Dave raised the idea of the 23rd I have been remembering more and more of their stories, how little is written down and owned to in our society. I want to do something about that but dont know how to start. I started to look on the internet but only found vague matter of fact descriptions not personal experiences - I even found that their had been a massive child hospital less than 5 miles from where I live within my lifetime! How did I not know that?
I think it is only when we acknowlege our history that we can honestly say we are going to change but there are still institutions - of the heart and mind.
I cried when I read your post Still in Hiding and am glad you too are setting yourself free.
Wow these are some of the most powerful comments I have read in awhile and rightfully so. Still in Hiding...your journey has just begun and good for you for starting....when one door closes another opens. I wish you much joy and happiness in this part of your journey....I as well will be praying for many reasons on Monday. xoxo
Please, please, please everyone who talks about this in the past tense -- STOP. This is still going on. Everywhere.
I can't even explain what it feels like to read things like this. Because I think too many people get the wrong kind of idea.
They will think that this is over. It's not.
They will think that the awfulness and cruelty of an institution is measured by the size, the shape, the physical beauty or lack thereof, the amount of money funneled into it.
And those things are not real.
And those things -- the belief in those things -- are hurting and killing people still.
People don't understand what's behind the worst institutions I can possibly imagine. They think I'm kidding when I say it. Understand that I'm saying this as someone with experience of institutions that people often remark (from my photographs) look just like prisons, and institutions that look absolutely lovely to anyone who doesn't have to live in them.
The worst institutions have lots and lots and lots of staff. They have beautiful grounds that people are more or less free to walk around on. Every room is decorated in ways that suggest a regular, pleasant house -- and if anything is stained or broken someone fixes it, washes it, and paints over it within a day. There are no locks on the doors.
All of the staff are gentle and would never physically abuse an inmate. They are highly trained at redirecting and calming anyone who becomes violent. If you go outside, they follow you at a discreet distance, where they think you can't see, to give the illusion of freedom and privacy. Their every movement and tone suggests sweetness and gentleness.
But they treat everyone as if they were somewhere varying, between infancy and four years old. With everything -- everything -- that entails.
Because they do not use physical restraint, they have to restrain you in other ways. They do it by such skillful manipulation that if you ever find out you were being manipulated, it's long after the fact. If you confront them on it they'll sweetly and politely tell you they have no idea what you mean. And they will continue to somehow always get you to do what they want, or else to feel awful about not doing so.
Glamour is a word that can refer to a kind of faery magic that can make a hovel appear to humans as a splendid palace. I often use the word to mean a similar kind of deception -- a beautiful facade over a terrible reality. I make it part of my life's work to see through glamour. And I see a whole lot of glamour used in conversations about institutions.
The above institution I have just described has a layer of glamour over it as well. If you look beneath the surface, it's utterly horrifying. Most people don't know how to see beneath the surface. Even when you personally are in such a situation, it can be hard to see.
You feel as if there is something pressing down on you, muffling and suffocating. But when you look around, there's no outward sign of it. So why are you not happy? You must be an awful person to feel so awful when all these nice staff people are doing so much to make you feel at home. You look around, you try to search for what is bothering you, and it's nowhere. But you're in agony. Whenever you think nobody's looking, you cry, sometimes it feels like you'll never stop. Deep down inside you, you know something is going terribly wrong. But trying to pinpoint it is like trying to get a firm grip on a cloud.
Get a glimpse under the glamour and you see that all that has happened is a bunch of substitutions. They stopped locking the doors, but they started following you everywhere and subtly guiding you where they want you. The institution itself is positioned so that even if you tried to run away you couldn't get anywhere. They stopped restraining your body, but their manipulation is like a permanent set of shackles on your mind. Their sweetness in manner hides the fact that they are sweet to you the way they would be sweet to an infant -- even when you're pushing sixty. Treat you like that long enough and you begin to respond and structure yourself like an infant, and the damage that does inside can't be calculated.
I literally have nightmares about that type of institution. When I'm wrapped up in the glamour, this terrible calm takes over. It feels like something soft and smooth pressing all over my skin, and the temptation is to surrender to it and feel its fake calm, fake happiness. Then I wake up and want to vomit I am so terrified and disgusted with what I've just experienced.
This past summer I attended a recreation program for DD people. And it was so much like a replica of my nightmare it was scary. Sometimes I would get smothered under the glamour, other times I wanted to scream. I cried more that week than I normally do in years, yet I was at every turn made to feel as if the problem was me. I can be so very passive but even my most passive wasn't good enough for them.
One day I looked around and saw that everyone there was older. From the era of big institutions. Where they were used to being treated like this, and mostly could out-passive me any day (which is scary because I can get very passive). I talked to a woman whose roommate goes there -- she said she goes in a grown woman and comes out acting like a young child. And not in a way that's just her self-expression -- this is one of those places that molds you into that form.
To survive in a place like that something inside you has to break. It's impossible to fully explain to someone who hasn't been in that position. Something inside you has to die. And it doesn't die any less because you got one of the "good" (read: glamour-covered) institutions. The same forces are crushing down on you either way, the difference is cosmetic.
The worst part of institutions is not physical violence, obvious forms of abuse or neglect. It's not even the experiences you don't get to have. It's the damage that is done right down to your soul, by living under the power of other human beings. Glamour makes no difference. Prettiness makes no difference. Size makes no difference. Even length of time makes less difference past a certain point than you'd think.
Until you understand that damage -- what it is, what it means, where it comes from -- you will never get rid of institutions. You have to understand it on a very intimate level or you will reproduce it without knowing what you're doing.
I still can't tell you how long I was institutionalized. I can tell you roughly the amount of time I lived in mental institutions and other residential facilities. But that's not the same as the amount of time I was in institutions. I call what I got when I got out, "community institutionalization". That's where you live with your parents but you spend most of the day being driven between various places -- segregated schools, segregated day programs, segregated rec programs, each one with institutional power structures behind it. I remember mental institutions where they walked us to different parts of the grounds for different parts of the day. There's not so much difference between that and being driven.
The transition between a locked ward on a mental institution and later periods of my life was so absolutely gradual that by the time I was "free", I never noticed. That's how they wanted it. I simply created the institutional walls around me wherever I went. That's why I put "free" in quotes. If I had been someone else, I would have been free. Because I was me -- because of my particular history -- I was not. There were invisible walls all around me and I certainly never noticed the real ones were not there. Which was exactly the purpose behind what was done to me. They didn't think I could function outside an institution so they carefully built one inside my head, making me truly unable to function anywhere.
I can get over the physical violence. The attempts on my life. The neglect. The sexual abuse. The parts of "normal life" that I missed and still am missing. So long as I physically survive (which even the recent rec program almost avoided) I will and can get over these things.
I am not sure to what extent I will ever get back the parts of me that died in order for the rest of me to survive. Every now and then I notice I've gotten a little bit back, and I think that finally everything will be okay. And then a little time passes and I realize how much is still gone.
I'm not even saying I can't be reasonably happy. But there are parts of me I still have no idea if I will ever get back. Those parts weren't destroyed by ugly bare rooms, horrific physical or sexual abuse, the loss of normal experiences, or any of the rest of the things most people think when they think of bad institutions. Those things happened to me and they are bad. But on a real basic level they are not the cause of the problem.
The cause of the problem is a certain exercise of power. Of person over unperson. And in order to survive it the inmates have to become as much of that unperson as they can manage. And that does violent damage deep inside the self, that can be incredibly hard to repair. It's violent even when it comes with purported love and sweetness and light.
And until people can stop forcing us to damage ourselves in this way, institutions will continue. That, not anything else, is the core of what is wrong with them. But it's much harder to put that into songs or images or even just words, that the average person would comprehend.
To, "Still in Hiding": Thank you for reminding us that a person does not need to be in an official "institution" to be confined in similar ways. I hope your new beginning will lead you in the direction that you feel is right for you.
To Amanda: Thank you for raising the important points that the era of institutionalization is very far from over.
Amanda, I encourage you to consider copy/pasting all of your notes from here into their own blog post at your blog. You have touched upon all of these themes before, but for some reason some of the explanations and analogies here "clicked" inside my head in a way that didn't completely happen before ... I don't know if I just needed time for the ideas to "jell" inside my head (and I got this trigger at the right time), or if something in your explanations and analogies somehow "worked" for me better this time. I did understand before that in your view certain experiences that happen in institutions are worse than experiencing things that others recognize as "abuse" ... and I accepted that view because I knew you had a first-hand perspective I lacked. But if I had needed to explain the perspective to someone else I'm not sure I could have articulated it other than pointing people to read your entire blog. Now ... I'm still not sure I could articulate it myself, but I think I'm starting to get a glimmer of why a pretty institution with "glamour" can be so insidious and harmful and soul destroying in all kinds of ways even if there is never anything happening that people would normally label as "abuse." I think this is an important concept that more people need to be exposed to, because we cannot create a situation where people who need support in their daily lives retain real autonomy and choice until this kind of glamour is exposed for what it really is.
For people reading this who are not Amanda: My two favorite blogs are, Rolling Around in My Head, and Amanda's Ballstexistenz at ballastexistenz.wordpress.com
Please go read. ESPECIALLY if you are someone being paid to work with people with disabilities, or hoping to do this someday, or are volunteering with people with disabilities, or in any other way in a position to influence their lives. But also if you are a person with disabilities who is looking for thought provoking posts on the human rights dimensions of disability and what happens when certain people have power and others don't.
I've never been in an institution but I've been threatened with it and I know what it's like to pretend all kinds of things to look like a different kind of person to protect yourself.
And I'm afraid to say so in public because I'm afraid it will mark me as the kind of person this can happen to and that then I will be in danger again.
This has to stop. But I don't know what to DO about it.
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