19 December 2008

A Week in Hospital: Constructing Disability

Last Friday night I walked out of my "not-quite-in-laws" home and walked around my car to put something I was carrying in to the trunk. It had started to snow while we had been visiting inside, and the temperature had begun to fall rapidly. As I reached for the trunk lid, my feet went out from under me, there was a panicked moment as I tried to juggle what I was carrying, and then I hit the pavement and an explosion of pain went through my body. I reached out to touch my right knee, but found no kneecap there. And then I just struggled to stay conscious, to stay out of shock.

It is now about seven days later, and I'm finally back home. Surgery has scraped together as much of my shattered patella as was possible, cleaned out other bits that were pressing badly on certain nerve endings. I've been locked into a knee immobilizer, fed a steady and massive stream of painkillers, been taught (once again) to move with crutches and (for the first time) a walker, and I've discovered how difficult many of life's most basic tasks can be.

I've discovered something else as well. I might have been deeply foggy for the past week, but I kept observing. And one of the things I observed was how professionals construct disability while working with their patients-clients-students.

1. Not bothering to know who you are.
When the police arrived at the driveway, their mission was to hurry the ambulance and keep me talking. I know this drill. I have worked in emergency services - even emergency medical services. My 'friend' mentioned that I had done that job, and so I might be able to answer questions more clearly than most. The paramedics took that information and ran with it, asking me about morphine dosing, using more "professional" vocabulary. That kept me engaged, attentive, and less focused on the rather remarkable pain level. They treated me as "me," and not as a "patient."

Later, at the hospital, most of the nurses and aides never considered these facts, or asked any questions which might have uncovered them. I became such a "non-specific patient," just a "diagnosis" and thus uninvolved in my own care. This became so extreme on a few nursing shifts that I actually wanted to resist their efforts to treat me.

With the ambulance crew I was a person with a somewhat unique knowledge base who needed help. With the hospital staff I was simply disabled.

You know the parallel: Every time we reduce our students to a label, discard the essentials of who they are, ignore their 'backstories,' we dehumanize them, take them out of the process, almost force rebellion. We also create dependency because we eliminate the contributions of the student. And we typically don't know what to do to help at that point, because we have stopped listening to the best information source.

2. Not really listening.
"On a scale of one to ten, with one being no pain and ten being the worst pain you've ever felt, what's your pain level right now?" I was asked this fifty times. Maybe more.

What's wrong with this question? You would have to make sure you know the patient's prior pain experience. You would have had to really listened before. Because, obviously, if one patient has previously, say, been shot, and another has never experienced anything more catastrophic than a sprained ankle, the two scales will be wildly different in size.

Just as in special needs education we've reduced something very personal into a codable scale that leaves us knowing nothing. Just as I didn't want to be measured against "Third Year Standards" when I was struggling to read when I was eight, I didn't want my pain scale measured against some nurse's arbitrary understanding. (I've had some massive injuries, but this was, without a doubt, the most painful, with the highest "baseline" - always there - pain level.) And because the hospital staff was not really listening, they never could quite get my pain under control.

And I lay there - in pain - and thought how often I hear educators referring to "mild" and "severe" disabilities. And no matter how often I challenge them on this, no matter how often I say, "how do you know what is severe to this student?" They keep using these terms as a way of disabling their students, of turning them into chartable diagnoses.

3. Assuming that "you" can't hear.
Two nurses stand by the edge of the bed and talk about you, assuming that you are not hearing. They stand just outside your door, talking. They give each other 'looks' as they are working on you. They talk to your family without including you in the conversation. They throw open the door, turn on the lights, write something on a chart, and leave without acknowledging you - leaving the lights on and the door open.

Nothing creates disability faster than pretending that the person in question cannot function in the most basic ways.

In the class I taught this past semester we read a bunch of "first person voices" of "disabled"students. Many of the soon to be teachers expressed surprise that the students seemed "so aware." I told them that we are all very aware. We know what every head shake means, what the big words imply. We know that when the person examining you writes a bunch of notes, you've done, or said, something wrong. We even know what you say about us in the Teachers' Lounge, because we see the results. What we learn from your attempts of ignore us is that we are worthless, that we truly are "disabled."

What a difference you might make if you treated us as fully human. If that nurse had said, "Excuse me, I just had to put something on your chart. Do you still want the lights off and the door closed?" She might have handed me a bit of power, and dignity, and allowed me to think of myself as 'as human as' she was. Again, a person in need of help, rather than a person with a disability.

4. Infantilizing.
This is simple. Making it easy for someone to ask for help enables. Assuming a person can not do, or can not make choices, disables. "Would you like to get cleaned up? I can bring you things or I can help if you want me to," enables. "Now we'll get you cleaned up so you'll feel better," disables. It reduces anyone to the status of helpless infant.

Just as, "That's a great book, you know we also have that as an audiobook or as text set up to run in WYNN," enables, while, "That is a great book, but I think it will be too difficult for you," disables. Which is why most classroom reading groups (those based on reading "ability") disable.

5. Making it look easy.
My physical therapist was great. He really was. If I look at the previous issues he was on the right side every time. But there was one moment.

He was helping me practice stairs. To do this I had already walked further than I previously had, to get to a stairwell. And I struggled up four steps - feeling dizzy, unbalanced, exhausted. It is very difficult to go upstairs when one leg can not be bent at all. You have to swing this incredibly heavy, non-responsive thing, out to the side, hold your balance, keep it out of the way of the crutch on that side... you know.

I came back down. He said, "Let me show you again." And with that he slowly climbed the stairs, with his unencumbered right leg bent at a 30 degree angle.

I could have done that too.

We do this so often in education. We act as if the task is easy or simple, all that's missing is the effort. And then, yes, people who can't do even the simple and easy things, are disabled. We forget that many of these tasks are extremely difficult and complex. We forget that our demonstrations are laughably distant from the way a "beginner" would approach this. And we forget that "we" - educators - might be built radically differently from the students we are trying to help.

Don't suggest "ease" or "simplicity" - admit that things are difficult. That won't discourage, as long as we celebrate every victory over every component process.

So, coming home was dramatically liberating. Here, I may not have all of the supports, but I'm much less disabled. Here, no one is working hard to disable me.

- Ira Socol
who hopes this is readable, I'm still fairly 'foggy'...


HomerTheBrave said...

Reads very well. Keep taking the painkillers.

I hope you have a speedy recovery and a good holiday time, now with the perfect excuse to sit around and let others do the work.

Anonymous said...

glad you're back cuz i wanted to ask you a lot of stuff.

The Goldfish said...

Ira, this is a fantastic post and made complete sense.

I hope you're soon on the mend. Have a lovely Christmas and a very happy, hopefully more comfortable new year.

Anonymous said...

my questions: you give a lot of examples of free text to speech software on the internet, such as natural reader for windows. this free stuff i don't believe highlights each individual word as it is read as wynn does and as confident reader does. so if i want to improve reading skills in my dyslexic students, isn't it much better to get these programs that highlight individual words? if i feel that it is a waste of time to try to improve reading skills, then i should go with the free programs that just read off what is written with no highlighting. if you agree that there is some value to trying to improve reading skills (as opposed to just getting info through the ear), then wouldn't a student need some minimal ability to match letters with sound before the highlighting was tried? in teach chinese students to read each individual character is written over and over again to aid not only in its writing, but in its recognition on the page. if reading is to be taught with no regard for the sound symbol correspondence, than it seems the chinese method of repetition is called for.

Lon said...

Hi Ira,
Sorry to hear of your accident - but loved your analogies. I remember my 5 day stay in our hospital and I think I might have had it a little better in the nurse and personal care department, but I definitely know what you are talking about.
You challenged me - I need to stop telling my son who is 6 - "I think that might be too hard for you - wait until you are a little older." How does that make him feel? He wants to please and be seen as capable - don't we all.
Thanks and Merry Christmas.

Anonymous said...


I'm behind the times due to limited internet access. I hope you are feeling much better by now and can njoy the rest of the holidays/semester break!

Anonymous said...

A great read, Ira. You really made me reflect on my recent stint with a fractured ankle. I agree with many of your analogies and also another ...
CONTROL ... I felt like an object on a conveyor belt, totally in everybody else's control .. their time frame, their order of events, their 'tried and true' ways. I know why they HAVE to do it like that (they know what works, procedures, risk management, OH&S, etc etc) but it leaves the patient (substitute student) out of the loop as far as making decisions and taking ownership.
For instance, hospital staff were wonderful and who am I to think I know better, but when they wanted me to take medication, I said I wasn't in pain and didn't need it. After the 4th time, they started to get a little anxious and encouraged me even more to take the tablets. Did I need them? I don't think so but I eventually felt I had to defer to their knowledge and experience.
How many times do teachers create the timeframe, the topic, the process, the assessment ... and do students lie back and float along the conveyor belt of K-12 schooling, with minimal thought, ownership or involvement.
Hope you are well on the way to recovery!