Tuesday, March 23, 2010
Patty: YouTube 3
This week the YouTube Video has been transcribed by wonder niece Shannon. Out of the blue she sent an email offering to do these every now and then. This way, between she and Tessa, the content is made more accessible, I deeply thank both of them, most particularly Shannon this week.
Patty
By Dave Hingsburger
I left Victoria and moved to Ontario where I was to work in one of Canada’s largest institutions. I didn’t know it, because they had interviewed me over the telephone for the job, and when I arrived to find this absolutely enormous building where the main corridor was a kilometer long, I was absolutely astonished. So I went to work and I walked into the building and it was quite a different feeling from the institution in Victoria, because while Victoria was new and built on the side of the mountain this was – this was not new and it was – it was built on this huge flat plain and it was just this enormous, enormous building.
And I went to work on a ward for people who were deaf, and I was hired there because I had come up with a program for teaching communication to a guy with an intellectual disability that was really successful in Victoria. So when I went to work there I didn’t know any sign language so I set about doing that, and was really interested in learning sign and enjoyed the social aspect of being there and meeting new people.
The folks on the ward were a very very disparate group. Most of them were very able people: a few had physical disabilities as well, but there was one in particular whose name was Patty. And Patty was very significantly disabled -- which is to translate literally into ‘very significantly neglected’. And she was always the last to be included in...the last to be fed and the last to be considered in any of the activities that we were doing because she was so much more disabled than were the other folks that we were working with. And while they were able to demand of our time, Patty seemed to be quite comfortable in just sitting alone on her bed and really not participating or taking part.
And I remember sitting around with a bunch of the staff one evening and we were talking about various approaches to people with disabilities and so forth. And I had come out of university and studied a lot about behaviourism and had come to really believe that people with disabilities, no matter how significant their disability, could be taught something. And they made fun of me because of course I had still not completed a full year’s work with people with disabilities and was seen to be very very naive.
And I – I said “Well, take Patty for example: I betcha I could teach her something.” Well the fellow that was her primary counselor said that he had tried several different things with her and that she was just functionally too low to learn anything.
So I set about the challenge of teaching Patty.
Well, what I first did, because of course I was a born behaviourist at that point and – and I was really looking at the things that she liked – because once I knew what she liked I knew what I could use as a reinforcer – and what I noticed of course was that she liked food. And in amongst the food that she liked, she liked sweet things. And in amongst the sweet things that she liked, she liked chocolate.
So firstly we had something in common, and secondly now I had a tool to teach. So I went and I got from one of the wards for children I got these puzzles, and they were the wooden puzzles that were shaped in squares, and they had like a horse and a duck and a barn and a cow and so forth, and they were just one piece that would fit into the larger puzzle. So I thought, Well I’m gonna teach Patty how to do this puzzle, and when I showed it both to her primary counsellor and to everyone else around they just said that that was absolutely impossible to do. So I went and I got Patty who was sitting where she always sat - which was on her bed where she would be sitting for hours and hours at a time - and I brought her to a table with me and sat her down beside me and - and she looked at me with a great deal of shock. I think she just was surprised to be considered and surprised to be the only one and not one of a group.
So she sat there next to me looking at me with a bit of curiousity and I immediately knew there was somebody inside there, because there was somebody who noticed that there was a difference between sitting on a bed by yourself and sitting at a table next to someone else.
So I put the puzzle in front of her and she wasn’t particularly interested in the puzzle, she was – she was much more interested in me: who was this guy that was sitting next to her and who was this guy that was talking to her.
So I distracted her by giving her a small bit of chocolate and she was immediately happy because she had the chocolate in her mouth and, and she had somebody sitting beside her and talking to her. So I got her to take a look at the puzzle and then what I indicated for her to do was to lift one of the pieces, one of the big pieces out of the hole on the puzzle and when she did so I gave her a little bit of chocolate. Well she eventually cleared the four large pieces out of the larger board and she had by then earned four pieces of chocolate. She understood immediately what it is that was expected of her and when I put the puzzle pieces back in she immediately grabbed at them and she immediately took them out. She no longer wanted the chocolate at this point because now she was engaged: she was doing something that she could do and something that she seemed to be enjoying doing...as much as taking puzzle pieces out of a board must be much more interesting than sitting for hours on your bed.
Well, after a short period of time I wanted her now to put the puzzle pieces back in: now this would take a lot more work on her part because she would now have to orient the pieces in order to get them to fit back in to the cutout shapes. And you know what: she did it. I mean, we’re still on our very first teaching session of somebody considered profoundly disabled and somebody who had been profoundly ignored.
So I continued on with her and a few people gathered around to watch and the interesting thing was they weren’t so much excited as they were angry. And I think they were angry at me and I think they were angry at her: because how dare I, a new staff, come in and show them that somebody who they thought couldn’t learn, actually could. And I think that they were angry at her because I think that they thought that she was somehow hiding – hiding her intelligence in such a way that they hadn’t found it.
Well, we continued on and over the next several days I taught her how to put that puzzle together and she started to look at me with a great deal of anticipation, and I started to look for another job.
There was just no way that I wanted to continue working in the institution like that and there was just no way that I wanted to have...a legacy working with people who were locked away simply for the crime of difference. And I worked with Patty for a little bit longer and I couldn’t really get anybody interested in doing any of this work with her because ultimately, they said, it didn’t matter. Because doing puzzles didn’t change, as they saw it, the quality of her life and she wasn’t more able...and she wasn’t more able to tie shoes and she wasn’t more able to pull up pants and she wasn’t more able to do any of those things.
And I tried to make the argument that if she could learn to put a puzzle piece in, well then she could learn to do those other things as well. But...they didn’t think so and when it came time to leave and...pack my bags and leave from that place and go on to my next job I was...I was wondering about the ethics of what I had done because it seemed like I had gone into a place and I had awakened the humanity of another human being only to desert them: to leave them in that place and to leave them with nothing.
Because I think it’s, it’s much more difficult when you know that there is chocolate and puzzles in the world to now not have chocolate and puzzles. I think it’s difficult to have somebody who sits beside you and talks to you and then not have someone sit beside you and talk to you, and even though I had showed them up and even though I had demonstrated that behaviour therapy had the capacity to teach, I’m not so sure...that I learned the lesson that needed to be learned and that I understood what this meant to Patty and what this meant to me and what I should have done differently.
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13 comments:
Puts new meaning to that phrase:
"I am not a puzzle! I am a person!"
WOW.
Thanks, Shannon, for the transcript! I like how you capture exactly what Dave says and how he says it. Many "official" transcripts "clean up" the person's speech by taking out repetition, false starts and stops, etc. Which may be fine for a hearing person who just wants to refresh their memory for what was said or who wants to receive the meaning without verbal distractions. But it really loses the flavor and texture of how a person actually talks, and that's some of what I'm looking for as a deaf person when I read a transcript or closed captioning.
Yes, I like the transcription too--talking is different from writing, and it felt really conversational.
It took me so long to realize that my son understood more than he said as a preschooler, because he did not convey that in any way due to his autism (wouldn't follow commands, point if you asked him to choose, etc). His receptive speech was 98% for his age--smart!, but his expressive speech indicated a 2-year delay--they couldn't even test his receptive until he could express a little.
How much sooner I would have elevated my speech difficulty to him if I'd realized--he must have been frustrated with me. Sometimes limitations indeed look like more than they are. I am grateful he had the OTs and speech therapist he did, ones who could see his future in there somewhere.
A year later, he tested for and was accepted into an advanced magnet school, where the great difficulty is getting them to understand that he's autistic and how that affects him.
The anger is very familiar to me from institutions. The easiest way to get every staff member furious was to show a skill at one point that you hadn't shown at other points.
They had no room for people whose skills fluctuated. People who could only do things when comfortable or when around certain people or when out of the hostile searching gaze of staff.
Staff used to play a game with me. I would be tied down for some reason and they would stand around trying to do things to force me to respond. They would put their faces right next to mine and tell me they knew I could see them so why pretend I wasn't. They would say all kinds of atrocious things.
Mind you the reason I wasn't responding was usually because I couldn't. Either my comprehension was shut down or my reactions were.
But if they could get a response?
Even a little one like my eye following them a few inches?
Rage.
Rage at me for "hiding" from them all that time until some twitch of my muscles "showed them I was really there".
Ever since then I have a terror of being watched with that kind of eye. By people who think I'm hiding something and that some muscle twitch it another will tell them who I really am. Lying there unable to get away from them while they played that game with me is more traumatic than the time some of them declared me a waste of space and tried to kill me.
I'm not sure what you could have done different. Changing things in an institution takes time. I once was able to change things in a mentasl hospital I was working at, but that was over a period of five years.....
This is the same problem that has me stuck in a job I am no longer really comfortable with because I disagree with most of the way the policies are put into practice. However, I feel I can't leave because I worry about what will happen to the people I have a direct impact on daily.
Thanks for the transcript so I can read this at work! Haunting story. I can't tell you how profoundly this blog and Amanda's have changed my understanding of disability and made me aware of the extent and perniciousness of discrimination in the world.
Andrea S:
As a hearing person who deals a lot with the written word and hardly at all with the spoken, it was difficult to transcribe this post. I have worked as an editor in the past, so it was an interesting exercise to take that hat off and simply type. I wasn't at all sure how many ellipses to include! Thank you for giving me a little guidance for future transcriptions.
Dave: As to the story itself, this is a very complex and thought-provoking story. What I like about it is that you don't have the answer: you just have the question. I walked around all day, tidying up, interacting with the kids, getting dinner ready...and thinking things like "what a terrible way to lead a life - hoping someone would come and sit with you and do a puzzle" and then "how on earth can those staff members make sure that every single person in their care has their need for puzzles and chocolate met? I mean, it's not possible, never mind realistic." And then "who is responsible for helping a person blossom - not just look after their daily needs such as feeding and cleanliness, but their emotional and cognitive needs", and then "where are the families of these patients?" and then "if I were a nurse, would I take the time to sit with Patty, learn what she needs, learn to care about her? Open myself up?" and then "Why would you choose that job if you weren't willing to learn about people, care about them, help them with puzzles?"
I don't have any answers either. Really, really interesting post.
Amanda, Thanks for sharing.
I actually thought while reading the transcript that the anger of the staff seemed familiar to me. I was probably partly thinking of the stories you've shared at your blog, and other stories. But I wasn't sure how to articulate the fuzzy connections and thoughts that I’m still struggling to forge. Some include ...
"So why DO some staff respond with hostility when discovering that someone has more intelligence (humanity?) than they realized?"
More importantly,
"What can be done to ensure that this reaction either doesn't emerge or can at least be managed in a way to ensure that no one gets hurt by it?"
I would be curious to hear your perspectives on this someday, Dave. Not necessarily here (I understand you usually leave comments threads to your readers and I respect that). But maybe in a separate blog post. Or if you don't want to impose your views before readers discuss (or at all), then perhaps one lazy day when you don't want to have to write your own post, you could simply copy/paste whatever text you want from this comment, edited as desired for length, clarity, and context, and use it to encourage discussion among readers. Maybe post with Amanda's comment also, if she gives approval.
Some possible discussion questions that people could ponder there:
Any thoughts on what triggers the kind of anger Dave describes in the Patty story? (Referring to when staff discover that Patty isn’t as "low-functioning" as they thought?) Or the kind of rage Amanda describes in her own institutionalized experiences?
How can we use this understanding to identify ways to defuse this rage in a way that keeps people safe? Or, better, to prevent the rage from emerging in the first place?
OR, do we necessarily NEED to understand this kind of rage? Might there be ways to effectively defuse or prevent this type of negative response even if we never really understand what causes it?
How do we help ensure that people with intellectual disabilities, developmental disabilities, people with unpredictably fluctuating abilities, etc., are kept safe from this type of hostility or anger -- and from any abuse or violence people might inflict on them, using this anger as rationalization?
Is this necessarily addressed in exactly the same way other forms of violence/abuse prevention is addressed? Or might a more specific response be warranted? Particularly bearing in mind that even if no blatant abuse follows from people's anger, the very existence of this hostility might itself be very inhibiting to someone not accustomed to revealing their “real self”.
Even seeing someone react with surprise without any hostility at all might make someone feel uncomfortable about behaving the same way again, at least in front of that person. Example from personal experience: I've never experienced the kind of dehumanization or abuse that Amanda describes. But when I was younger, any time an adult was surprised at something I said, I would respond by backpedaling. I would pretend I didn't mean what I said or that I was actually trying to say something else. Or I would lapse into silence. I guess I went through a phase when I was so anxious to live up to exactly what other people expected of me that other people's surprise threw me off: perhaps I saw it as a sign that I wasn’t doing something “correctly.” I used to try to behave in ways that didn't cause adults to be surprised. For me as a little girl, surprise was enough to make me suppress certain things about myself around adults.
How can we ensure that other people's response (even just surprise) doesn't inhibit people from exhibiting, and living up to, their true potential and behaving in ways more natural to their neurology?
Sorry, probably too many questions here for a cohesive discussion! But if you do filch some of this for a blog post some day, perhaps you could trim it and focus on the questions that appeal to you the most.
The story of Patty from First Contact! First Contact was one of the first assigned readings in the Loyalist DSW program. How wonderful to "hear" you tell it! I think the ethics of behavior modification have been grossly overlooked, as is power wielding with the excuse that it's for someone elses "own good".
Thanks for the refresher Dave!
-Rhea
I've been visiting this blog since the first entry and I think we need more initiatives like this one, everything is brilliant, specially these videos as a source of information... I think most people must understand this importance. 2j3j
It is pretty nice from them to make your life easier. I think that youtube has some useful tool for people with disability. I know that they have to work more to improve the system but they have the budget to do it.
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