There is no other life than this one. It doesn’t matter what one believes regarding death and the after life, this is the one life we have, right here, right now. How will we live it? What we do, what we say, how we behave in this moment is indicative of how we do anything.
I’m reading Rosemary Crossley’s first book, Annie’s Coming Out, which she wrote with Anne McDonald and was made into a movie in the 80’s, released in the US under the title, “A Test of Love.” (As a side note, I find it interesting that the book’s title places Annie as the protagonist and yet the US film title suggests the therapist is. By the way, I’m one of the people who believes both Anne and Rosemary were/are heroic and have nothing but tremendous respect for both.)
“Children, even children who could sit up, were generally laid down to be fed. Their heads would rest in the nurse’s lap, and their bodies would lie across another chair placed in front of her knees. This meant children were being fed with their heads tilted right back, a method called, for obvious reasons, ‘bird feeding’: gravity drops the food straight to the back of the throat, and there is no chance to chew. Children were encouraged not to shut their mouths – a second mouthful immediately followed the first. I have filmed a nurse feeding a child: food is piling high on his face because he is unable to swallow it at the rate the nurse spoons it in.” ~ Annie’s Coming Out by Rosemary Crossley and Anne McDonald
The above is, but one of many harrowing passages in the book describing the institution Anne McDonald was placed in when she was three years old.
“To be imprisoned inside one’s own body is dreadful. To be confined in an institution for the profoundly retarded does not crush you in the same way; it just removes all hope.” ~ Anne McDonald in the book Annie’s Coming Out
It is impossible to read this book and not feel horror. Horror at our ignorance, horror that a place like St. Nicholas Hospital was more the norm than not, horror for all we didn’t understand or know, horror for our capacity as human beings to treat one another with such indifference and cruelty. It is easy to console oneself with the thought that this happened more than thirty years ago and this sort of thing would never happen now, not here in the United States, not now.
This article in the NYTimes was written just last year, I wrote about it and other atrocities ‘here‘.
How will we view the “treatments” commonly used with Autistic children thirty, forty years from now? What will we think about the commonly held views regarding autism and Autistic people. Will we look back with the same horror I feel as I read Annie’s Coming Out?
Anne McDonald and Rosemary Crossley
Emma's Hope Book 
I have thought about that….how we will view autism “treatment” 30 or 40 years from now. I worked as an ABA therapist 15(ish) years ago when I was in college. The methods used then are VERY different than the methods used now. It was all table time, discrete trial, no-no-prompting. How awful to have been taught that way if you were an intact mind in a non cooperative body. It was the very therapy that I did not want for my son when he got diagnosed. Even though I think that there are a lot of positive changes being made in how we teach autistics (mainly because we are starting to listen to autistics) I do wonder what we will think in the decades to come.
I am hoping, actually, that we will be horrified. As horrified as I am while reading Rosie and Anne’s book, as that will mean we have moved far beyond what is now thought to be the “truth” about autism and Autistic people. In my view, that will be a very good thing.
Personally I believe we are spiritual beings having an earthly experience to help us be better spiritual beings. The things we suffer here can teach us all about compassion, service, and unconditional love. We can spend our time being outraged at other people’s choices, or we can make our own choice to be a healing influence. Most of the therapies of the past, even though misguided, were attempts to help. Most people, are doing the best they can with the knowledge they have. If we believe our own knowledge is closer to the truth, then it’s our responsibility to share it in a persuasive and provable way. Autistics who share their experience are doing that.
Marie – if you read the NYTimes article about isolation rooms, restraints and watch the video footage of what is currently going on at the Judge Rotenberg Center, you will see for yourself that many of the things being done are much, much more than misguided attempts to “help” people.
“We can spend our time being outraged at other people’s choices, or we can make our own choice to be a healing influence.”
This is a false dichotomy and a false choice.
We *should* be outraged at the mistreatment of disabled people, past and present, AND we can make choices to be a healing influence on the future.
And some fairly horrible things are still done in the name of “helping” autistic and disabled kids, despite protest from autistic/disabled adults about the harm done by those things. So it’s not simply ignorance. Practitioners may sincerely believe they’re helping, but they also have a material stake in the belief that developmentally disabled people must be treated in certain ways.
Yes, I am surprised there is not more outrage, actually. Perhaps when enough people are outraged, the horrific things that are being done will end.
I am an Autistic who “shares my experience” as well doing another thing which is not called “sharing” as it relates to my academic knowledge and is for some reason thus more respectfully called “teaching.” Also, I think it is spiritually impoverished to look away with eyes of deliberately fashioned “peaceful” ignorance when injustice happens. Outrage is the compassionate response to outrageous things as well as the logically most tenable. Healing can come about only through honesty. Please do not so smugly discount the experiences and knowledge of my friends. I find it outrageous. If you do nothing when wrong is happening, you are not doing right, you are doing nothing. Love is not just fluffy sentimentality. Sometimes love is badass, a chosen action of making a stand, repeatedly, even as people murmur greeting-cards into your ear.
(((Ibby))) I am so happy there are students who are fortunate enough to have you as their professor!
Love love love!!
Ib, I might have to quote you sometime on “Outrage is the compassionate response to outrageous things.”
Yay!
Sometimes it matters more what people do than what they believe. For example, a teacher recently told me that she does not believe in autism. I responded that autism is not a religion. It doesn’t matter whether you believe in it or not, only that you implement needed supports.
Access to communication, visual supports, inclusion opportunities – basically whatever a person needs to access the world outside their skin – is a given in my book – not at all dependent on what anyone believes or doesn’t believe.
It is not right to expect that it is ok for others – often the most vulnerable amongst us – to suffer so that others can be taught about compassion, service, and unconditional love. If you need to learn about compassion, service and unconditional love by all means please do this – just not at the expense of vulnerable human beings by thinking the atrocities meted out to us over the course of history is ok. It is not ok because we too are human beings and deserve to be treated like human beings.
Also, being abused by caregivers in the name of treatment caused me suffering. It never once taught me anything about compassion, service or unconditional love – so if you are meaning it that way it still doesn’t make sense to me. In fact, other people who are kind, caring and treat me well have taught me these things – not the institutional treatments and caregivers.
So that is why I say that it often times matters more what people do than what they believe. There is a saying that the road to hell is paved with good intentions.
I too have found the most profound lessons in life have come from those who were kind and compassionate. And those same people are often outraged and are making a difference in this world with their combined outrage and kindness, it’s a powerful combination. Actually I have just described you, Judy!
Intent isn’t magical. Attempts to help are failures if they don’t help.
Further, it is not all on us to share. Autistics who choose to share do so because we’re feeling nice, not because we have to. And then it’s out of our court. It’s y’all’s job to pay attention.
Speaking of paying attention: if you aren’t outraged, you haven’t been.
(((Kassiane)))
“Attempts to help are failures if they don’t help.” Yup and that’s being pretty kind considering the massive failures when it comes to what is believed about autism and Autistics.
I think there’s a big reality gap that no one has mentioned yet. Many of the so-called therapies — past and present (though hopefully not future. Please, not future!) — are not “attempts to help people” because those administering the “treatments” do not really believe there is “a person in there” that could benefit from help.
So many of the “therapies” that are inflicted on children and adults are not designed to help anyone other than the people charged with responsibility over the “assumed non-person” in their care. The disabled unfortunate enough to fall into their clutches are not really being treated, they are being managed, more or less like livestock. Anything those disabled “assumed non-people” do or say that is difficult or challenging gets “treated” out of them one way or another until all that is left is a compliant husk.
Compliant husks are easier to warehouse, easier to clean and feed, easier to stack like so much inert cordwood, waiting for that final breath and the burning or burial that finally ends the grudging labor of those who had to “tend the garden” because our society has only enough decency to say that we do not kill our disabled and infirm — though no one is required to help them truly live, either.
To justify this “storage” treatment of disabled people — a treatment that still goes on today in some places, as hidden as possible from the public eye — “spiritual” . . . well, honestly, that just makes me want to vomit. There is nothing spiritual, nothing holy, nothing laudable about the suffering those who have been discarded as “less than human” are forced to endure and to claim that their agony is somehow ennobling to anyone is a perversion.
I would hope that all people who consider themselves spiritual or have any sense of awe and yearning in their spirit in any way will take those feelings and philosophies and turn them toward reform and never rest until we have built a world in which *all* people are regarded as being genuinely human and no one is forced to suffer at the hands of “helpers” who would seek to help everyone except the person they are “treating.”
Word!
Sparrow – What a beautiful comment. Thank you for leaving it here!
Just the passages you shared here were troubling, I can’t imagine what the rest of the book conveys…though I will read it now and think about the questions you raise here. Which is exactly what I like about your writing: it is connected to people, lives, yet asks us to consider the big picture as well.
My issues are different, I’ve struggled with social pragmatics; was not able to start having relationships till i entered my 30’s, due to an inability to use/read body language. But I began therapy at 30…met a psychologist who was just starting out, fresh from grad school. I asked her what therapy would consist of, for someone like me. She said, “That was something I asked my professors on a regular basis. No one had a reasonable answer. I say we figure that out together.” Her attitude was one of respect, centered on getting to know the person, not implementing a grand design. I think it’s what is needed, when it comes to providing support: respect, not brute insistence of any goal, method or ideal.
Obviously my situation has nothing in common with institutionalization. But your post…reading about the “bird feeding”…it reinforced the sense in my mind that, too often, ideas and strategies can lose their connection to people and become these perpetual motions machines…they take on horrible lives of their own and generally do the most damage to the most vulnerable among us. Anyway: hoping therapeutic techniques will be increasingly based on respect for the individual, and not tactics that dehumanize, belittle.
So glad your therapist responded this way to you!
The bird feeding is just one of a number of truly awful things described. I agree with you, that these ideas and strategies easily take on a life of their own…
The bird feeding story really upsets me. I have an equally appalling example of mistreatment from that era. I know of someone in my city who is autistic, non-verbal and physically disabled. He was not born physically disabled, that happened when he was a young man while he was in state ‘care’ in a mental insititution. As he was often hungry he took to pinching other patients food. To try and correct this behaviour the genuises at that institution withheld food as some type of correctional attempt / punishment. When that didn’t work they decided to operate and severe his achilles tendons so he was no longer mobile, figuring that if he was wheel chair bound he could not get to food so could not steal it. This in the early 1970’s.
I assume people somehow in some abstracted way thought they were doing the right thing when they did these sort of things. But there’s a simple test you can apply that My Dad told me about. He gave up being a Catholic when I was a young boy, but he told me there were two ideas from the Bible that he liked to live by which I recollect (rightly or wrongly) as being these:
“Do unto others as you would have them do unto you”
and
“I am my brothers keeper”
Pretty straightforward and good rules to live by IMO. If what you are doing to someone doesn’t meet both those criteria above then you are doing something wrong.
It’s not an easy book to read. I’m having to put it down every few pages. Very, very upsetting…
That’s a really horrific story and truthfully how did anyone convince themselves that it was a good idea?! Sounds more like it was “helping” the staff, which is also often the reason for the rampant over medication one hears about in other institutional settings.
I like your father’s rules, simple, easy to remember even if hard for many to practice. BTW – My husband also rejected Catholicism. Now he writes novels that skewer the Catholic Church!
Yes, “helping” the staff, not the individual whose personhood has been erased and dismissed. Exactly. See what I wrote above. Thank you for writing about this difficult topic, Ariane.
Loved your comment! 🙂
Sometimes it can be tempting to slide down the path albeit not necessarily the horrific one mentioned in the book. However the discussion gave rise to medicating and compliance training to make people (and not just autistic ones) easier to to handle. Struggling with the balance right now of experimenting with stopping my sons daytime medication because as hes gotten older he is learning to focus and self regulate more. You have the classroom on one side that doesn’t want us to because he is noticeably more hyper…and honestly exhausts me at times just to watch…vs the SLP who agrees that he has been much more verbal and thinks we can deal with the hyper for the vocalization (and he’s not half sleeping through class)…so its about finding a balance between medicating into submission and being too wound up to learn much of anything.
As always I’m having trouble organizing my thoughts into anything but a ramble. I do hope that in years to come that we will be looking back at how clueless the medical profession was and how as a whole many very bad ideas existed and how much more humane and respectful it is now…
Right, this idea of “control” versus “help”. When a child is “out of control” the urge is for a short term fix, which usually doesn’t look at the underlying issues and often can make things worse. I hear you. We are dealing with similar issues at the moment, not regarding medication, but, so called “behaviors” at school (which I argue is “communication”). Very frustrating…
I guess the upside to my particular situation is this is really the first hiccup we’ve had there and honestly I’ve been so spoiled up til now that I’m in no way prepared for public school and fighting for what he needs there in 2 yrs. Forget fear of autism I’m good with that…I fear school and autism clinics (also coming up and which I need to prepare for bc clueless ex actually coming to this one. Bleh) lol
Each of us must respond with outrage at any person’s choices that cause any harm to anyone of us- especially if that harm is occurring to one of us who is disenfranchised by the majority . Our outrage to this abuse (however well intentioned or well meaning) does not negate desire to be loving, healing influences on one another. There is no way to peacefully ignore/reject/hope for better the abuse of another when you see it.
The first thing that jumps out so clearly, is that anyone of us with or without dysphagia,however mild, has a hard if not impossible time managing our airway/esophagus in a “bird feeding position” . It is impossible to manage -aspiration risk seems probable, and penetration, pooling is inevitable..how was this ever an option?
It’s awful. As I read your comment I thought about all the people who have used their outrage to influence change. It is those who speak out, who protest, who say, NO! that actually encourage change. If we all agree and just go along with what’s being done, more of the same will continue.
I found they had made the book available free on Annes website in word format, so if anyone else is interested it’s available here: http://www.annemcdonaldcentre.org.au/annies-coming-out
Thanks so much for providing the link. I ordered it used through Amazon.com, it took almost a month to get to me!
I finished the book. What is revealed in the Epilogue about a particular commissions ‘findings’ is the most reprehensible thing of all in the book for me. Those ‘professionals’ should be in jail for crimes against humanity.
Which is saying a great deal, as there is so much in the book that is just horrible. I’ve dog eared and highlighted huge amounts, haven’t gotten to the end yet and will resist the urge to jump ahead and read the epilogue…
There are people like this everywhere, not just in institutions, who need someone to come along and doubt the words used to make them something so profoundly less than others that everything can be denied to them.
Yes, they are everywhere and without those of us who can protest doing so, it will continue unabated.
This is Rosemary. Anne would be pleased that people were still talking about the book we wrote more than 30 years ago, but distressed that many people with disabilities are still seen as “outside the boundary which delineates the human race”.
There were many horrifying things about life in St Nicholas. One of the most horrifying was the total unawareness of the horror by most of the long term staff.
In the mid-seventies I walked round the wards completely openly with a huge reel-to-reel video recorder. There was no way of hiding it so I just acted like I had permission and the filming was all completely routine. Staff lined up to be filmed. Many were doing dreadful things. They had no concept that anything could or should have been different. They did not think of the residents as children.
The only protection for those people who cannot complain, is for us who can to evaluate every aspect of their treatment as if it applied to us. Would we like to be fed lying down, would we like to share all our clothing with others, would we like to have our dessert mixed in with our main course etc etc? If we wouldn’t, why do we think they would?
Rosemary – I have loved both your books and have marked them up with notes, highlights and scribbles in the margins. They should be mandatory reading for anyone entering the field of disabilities in any capacity.
Your comment about walking around the wards with a huge reel-to-reel video recorder reminded me of the Nazis who so proudly filmed themselves and others in the concentration camps, another instance when human atrocities were committed against a group of people seen as inferior by so many.
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I agree with ‘in strange mind’, but there are added matters.
1) While ‘bird-feeding’ may well be convenient for ‘stevedores’, there is another motive: “the pleasures of power,” either the ‘lesser being does exactly as its then-current Master wishes, or it suffers for that master’s pleasure.
The master wins; the chattel loses: by keeping up, it becomes an Obedient Bodily Extension, a mere appendage of its master; if it does not, then it suffers, and its master’s sadism is pleased.
Ah, the wonders of moral disengagement, where one is not human. Instead, one is a “useless feeder” ( the German word eludes me), and the sole use one has to ones’ master / owner is to make that person look and feel as good as possible.
There is a darker-still portion, that of the notions of Magic(k) found in the unconscious. While few people actually practice true Magick, the unconscious is shot through with matters such as ‘the law of attraction’, ‘the law of contagion’, and other ‘tales of power’. ( the reference to Castaneda is deliberate)
One of the more pernicious notions is “magical power can only properly manifest in perfection – perfection in all possible ways.”. More, perfection is attainable, and therefore, obligatory; and those who are not perfect are that way by knowing and malicious choice.
After all, most (defined-as) normal people BELIEVE they’ve Learned to be as they are, that they’ve thereby earned the vast privileges due such moral labor; and this fuels not merely the entitlement manifested toward ‘lesser beings’ – but also the notion of Desert.
Lesser Beings deserve to be punished; and their Betters deserve to punish them; and to do so is NOT evil, but good both individually and collectively.
When the evils are dead, the righteous remnant shall regain its lost magical potency. This is the precise justification for the Holocaust. Hitler ( and our more-modern betters) knew and know exactly what they are doing.
They shall be gods; and we, the lesser, are to worship them: perfect imitation, perfect mirroring, knowing our place at their feet (in adoration) – and ultimately, dying for their express pleasure.
It is, ultimately, all about them.