Monday, March 05, 2012

OK OK

Dash it all!

I don't like, and have written about it here before, those 'disability awareness' exercises where people titillate themselves by rolling around in a wheelchair and then get up saying, missing the point entirely, "I could never cope with that." Well people do cope - so shut up. Sorry, but those 'games' annoy me and they seem to be more about people discovering things about their character and their courage than about disability and my life. But I've had a few people beg me for an alternative, an idea, many saying, correctly that I shouldn't criticize without coming up with options.

So I have.

It begins now ..

Try to look at my writing, now, this paragraph, with illumination. Writing is awkward but you can follow what I am saying. Do you worry about my inability to click my laptop buttons such that words flow smoothly? I annoy 'moi' and probably you by doing what I am now doing. But as I do it, it smooths out, I hit buttons quickly now. My mind works hard, HARD. But I finish what I start.

It ends now ...

I am exhausted. That took time. That took energy. That took determination. That took creativity. I was constantly thinking, constantly looking for ways to do what I wanted to to and say, even though not clearly, what I wanted to say. I set myself a lipogram which, if you clicked, you'd see, is a form of constrained writing. That paragraph above was written without using the letter 'e'. It was really hard to do, but it was doable. To me, setting people about the task of writing a story about their dog, their cat, their friend, their child, without using the letter 'e' would give some idea about the mental gymnastics involved in disability. Disability isn't about not having a cut curb ... well it is but it isn't ... it's about figuring out what to do about the fact that there isn't a cut curb. Coming up with options, coming up with ideas. constantly thinking, constantly evaluating what might or might not work.

I see this too with people who have intellectual disabilities when they get stuck on something. Trying desperately to figure out what to do, how to act, what comes next. Disability isn't a passive experience, it's an active one. It's trying to interact with a world that isn't easily accessible. I am more often mentally exhausted by the experience of disability than I am physically exhausted. Even in days that go well, those days have gone well because I've thought, and planned, and developed secondary plans, and reviewed options upon options upon options. It's tiring.

It's a bit similar to typing words into a string for you to sit and look at and say 'I got it!' (that was a lipogram)

Whew, I don't want to do that often.

No, it's not glamorous like riding around in a wheelchair laughing, fully knowing that you can get up at any time. No, it's not like pouring water into a glass wearing a blindfold. No, it's not showy. But it does get the point across. I tried this out on someone the other day who wanted to know why someone he worked with was always happy in the morning and always tired and a bit grumpy in the evening. There was nothing medically wrong. The fellow I was talking to made like the person was being willfully difficult in the evenings. I suggested that maybe, by the end of the day, he was just tired, really, really, tired. This self same staff gave up after trying for five minutes to write a sentence without 'e' ... he looked at me and said, 'this is really hard work'. I suggested that the fellow he supported worked hard like that all day every day. I suggested maybe developing an evening routine that was enjoyable, full of things the fellow chose to do - that he'd choose things that were comforting and less challenging than his day had been. It worked. Everyone is happier.

So there, happy?

I know, just know, that others with disabilities may not like this. Well, I don't really either, whatever happened to empathy? But I tried to find something that might have meaning without being demeaning.

24 comments:

Kristine said...

I've heard of this exercise before (never tried it), but I don't think I've ever seen it linked to the disability experience like this. Brilliant. It strikes me as a great starting place, at least, for a more meaningful disability awareness day... Because I HATE the usual stuff too. I have a feeling I'll be using this at some point. Thank you!

Mary said...

Thank you!

I'm another person who can't stand the "parlour games" approach to disability awareness. Any fool can sit in a wheelchair in a church hall and steer it around a little course of cones.

Disability, the experience of being *dis*-abled, begins when, halfway through the course of cones, you get a phone call to tell you that a loved one is being rushed to A&E, and the instinct to leap up, shove the cones aside, grab your car keys and run out of the building turns into an unexpected logistic battle where you have to stay calm enough to get out of the course with wheels unjammed, find the janitor to unlock the platform lift to let you out of the building, and phone around all the taxi firms in town trying to find *one* accessible vehicle that can get to you within the next couple of hours, so that you can go and argue with hospital staff about whether or not your "outdoor" wheelchair will be allowed on the ward.

And instead of finishing the "awareness day" with a sense of achievement (if you coped) or shame (if you didn't) and returning to a privileged life where, to use your metaphor, you have a full keyboard available... disability is when you have to carry on having these tedious, upsetting, belittling battles every single day, in every single aspect of your life. Every meal out. Every job interview. Every friend's birthday celebration. Every trip to the shop for a pint of milk.

So while I see the point that people who say "you shouldn't criticize without coming up with options," are trying to make, it does seem a bit like they are smacking someone around the head with a frying pan, and when you say "I don't like being smacked around the head with a frying pan," responding with "well what would you like me to smack you around the head with, you can't criticize without coming up with options!"

The answer is simply "I'd like you to stop smacking me around the head, and use your intellect and/or human compassion to realise that it hurts me!"

Hannah Ensor said...

Love this idea! - do you mind if I blog about it? - referencing you & linking to here of course :D
I've never found a good way of explaining why going to new places is so exhausting, and never done on a bad day, but this would demonstrate it brilliantly!

Thanks Dave,

Hannah

Dave Hingsburger said...

Hannah, of course you may blog about it, thank you for referencing it to my blog. As far as I know I've originated this approach to disability training and it would be nice to be credited for it.

John R. said...

Bravo!!! I cannot stand disability "awareness" exercises either. I will not facilitate them and think they are a waste of time.

I know however that people will usually prevail in things despite disability and that they will totally adapt.

As a person who spends his professional life "training" staff and caregivers this post speaks volumes and I am grateful for any better "exercises" in empathy and understanding adaptation....my state requires certain sensitivity awareness exercises in it's crisis intervention curriculum. Hate it.

Lipograms all day long, I say!!

Anonymous said...

empathy. compassion. This is what it's about.
Wearing those distoring glasses, moving round a building in a wheelchair, being fed by someone else so you can find out better ways of how to support people, ...
I think these exercises sensationalise difference and trivial-ise disability.
Like when people say, I always put my clothes on in the same order, I'm a bit autistic! No you are not. You get how routines can feel comfortable, that's all.
It puts in mind the Pulp song 'common people' about a privileged person with a 'thirst for knowledge' wanting to 'live with common people like you' and that superb line, 'no-body likes a tourist'.
It makes me a bit sick that people laugh and ENJOY these exercises- in the common people song 'I said pretend you've got no money, she just laughed and said oh you're so funny. I said yeah? Well I can't see anyone else smiling in here.'
If you use pseudo tourism in awareness training, pls consider ethical tourism.
But better still, when people work with clients who experience impacts of disability, I think providing time and support to overcome the obstacles to PUTTING OURSELVES (staff) IN THIER (clients') SHOES, their individual experiences, connecting in an empathic manner, is more likely to effect positive change.
Certainly it's more demanding of training participants. But isn't that the point, disability results from shirking legitimate requirements?
L

Gina @ Inky Ed! said...

Dave
How fantastic. I too will try to remember to link to this post on my blog - what a fantastic way to explain why a student might 'droop' a bit or 'act up' at the end of a school day. Oh how i'd love the opportunity to use it a a school prof.development day.

bob said...

It's a lot to ask of people to have any more empathy for others than they have for themselves.

Nan said...

What Mary said made me laugh!"I don't like being smacked around the head with a frying pan." I like the lipgram. Will remember that one! It is inclusive in many ways (of people with intellectual disabilities, learning disabilities, etc...). Thanks for taking the time to share it.

Anonymous said...

Ahem Dave.....
---myself has an e...

Julia

Rachel Douglas said...

Oh I never liked those "awareness" things either. In my camp of Ds, the trend now is to have a talk or send a letter to the elementary class about their child. It makes me cringe. It makes me sad. Would we ever do that for our typical child? I certainly know I don't fully "get it" so I appreciate your willingness to educate.

Colleen said...

Dear Dave:

I am not a fan of the parlour games either. Yet I see them regularly played out by other programs at my college.

I like the analogy of getting smacked around in the head with a frying pan. Here are some of the things it took for me to get my tenuous grasp:

1) my brother lived in an institution for 40 years and lost so many of the skills he had - not because of anything in him but because he was so brutalized

2) my daughter was born with a disability and she looked "different" - standing in the check out line at a store at the mall - in front of me everyone is oohing and aahing over someone's baby - when they get to me no one says a word about how cute my baby is - and she was darned cute (I am not biased or anything :-))
3) taking my mother in law who had had a major stroke to an "accessible" bathroom where we had to wait until every other stall was empty, remove the trash can and occupy the whole bathroom in order for her to use the "accessible" stall - she never lost patience but she did need to change her clothing due to the wait - and then on the way out a mother with a 3 year old was obviously furious that they had had to wait so long
4) going on vacation and coming back 2 weeks later to my job to learn that 2 of the young women I supported had had hysterectomies in my absence - one because she had menstrual cramps and the other because at 13 she had been caught necking with a boy in the bathroom - despite the fact that I had been arguing vehemently against them being sterilized (I am old - this is before the Eve decision)

I could go on and on. The biggest thing I have learned is that struggle does not have to be part of disability - society makes it that way. You can't learn that from parlor tricks.

I think you said it best in First Contact, Dave - we have to let people tell us what it is like for them to be them. You can't get that from parlor tricks either!

Colleen

Dave Hingsburger said...

Julia, that slipped right by me, you have an eagle eye. Dave

Anonymous said...

I'm with the rest of your readers Dave! I think the lipogram is an awesome idea! I work with children with disabilities in the school system. We are having a pro-D day tomorrow and are asked to give suggestions for things to do. I am going to suggest we try one of these exercises just to help all of us put ourselves into the shoes of those we support. Thanks Dave!

- Beannie

Hugh Campkin said...

Love this! Mind if I borrow it for training purposes...? no, I thought not... :)

thanks, Dave

Dave Hingsburger said...

Hugh, of course not!!

Julia, everytime I looked at that damned paragraph all I could see was the 'e' in myself. How I missed that when I read it and read it and read it again. It bothered me so much I had to go back and change it!! LOL Anyways, it's done now.

bob said...

Dave, I'm disappointed you changed the myself to moi. Clearly, you had put a lot of effort and sincereity into the exercise, yet still made the "mistake".

Writing for my brain injured self (on a great day) requires the kind of effort you reported needing for the lipogram. I thought your "mistake" made the point much more powerfully because of how much it bothered you. The "mistake" is not about you but about what you're trying to imagine.

Anonymous said...

Dave,

it was a struggle for me wether to point to your "mistake" or not. But because you are indeed able to change it, it was something I must point out to treat you equal.

I hope you get the meaning in my words and understand the thoughts regarding disabilty in them.

Julia

Ruti said...

Why wasn't that man already spending his entire day doing activities he chose?

Anonymous said...

I really am surprised at all the negative views towards the exercises typically used. As an educator within a traditional setting for traditional students entering various medical related fields, I find many of these exercises invaluable. Yes - there is often tittering and laughter - but it is not directed at others that fight with disabilities - but at themselves. Their own surprise of awkardness, lack of ability to perform daily tasks even in "pretend" mode. Such activities promotes awareness. How they are approached and how they are performed and how they are discussed are all part of the exercise. Good - actually excellent dialogue has come from students who are going to be dealing with various disabilities during their careers. These tiny touches of the battles that are faced daily by those living with disabilities goes a long way into meeting and dealing with people in their medical related practices. Simple things like clearer instructions, reading levels, more than one way to do things, walking slowly, speaking slower, getting feedback, assisting with form filling, transfers, interuption, dealing with family and caregivers - and so on - are necessary. YES - there can always be improvement and I love your example - but let us not throw out the baby with the bathwater. Those with the knowledge and experience, like yourself, keep on showing us what to do - and believe me - every person who has the responsibility of trying to educate and integrate and appreciate those with disabilities will be very, very grateful. Until then, I will continue to turn the giggling,eagerness to learn, and experience into awareness and compassion and hopefully a drop of understanding.

C'est moi said...

What a wonderful exercise! As both a teacher and a Girl Scout leader, I always seek to learn ways of being more aware of how to help others. Thank you for sharing this activity!

C'est moi said...

Thank you so much for sharing this exercise! Both as a teacher and as a Girl Scout volunteer, I try to learn new ways to help others. This will definitely be useful -- thank you again!

Ruti said...

Dave,
What do you think about the Blind Museum in Israel? They have an entirely dark museum in which people sighted people try to do everyday things -- including a mock up grocery store. And blind guides lead sighted tour groups through the museum.

Anonymous said...

I know that one big issue I have with these trainings is that they fail to meaningfully recognize the ways one can become good at functioning with a disability. Someone who picked up a pair of crutches for awareness day isn't going to have the muscles I've developed, the skills on how to best navigate obstacles such as stairs (which isn't always the technique they teach), the sense of balance, the awareness of what surfaces to watch out for, the fun tricks, etc. They'll have a distorted idea of what it's like to have my disability. Generally, they end up with an exaggerated idea of the physical difficulties and very little sense of the social stigma. This reinforces the tendency to excessive and pushy "helpfulness" and makes my life more difficult.

Now obviously I'm not everyone. However, a significant percentage of people with disabilities have developed skills that aren't going to be readily apparent to an able-bodied person playing around for a couple of hours. If an organization wants to know how to work effectively with people with disabilities, they should talk to (and possibly even employ) actual people with disabilities and not play around with pretend disabilities.

I don't think many people would suggest that increased gender sensitivity would be best achieved by getting a bunch of guys to put on a dress and run around for a few hours and telling them "Congratulations! You now know what it's like to be a woman!"