Friday, February 12, 2010

Disability 101

"So what's wrong with you, I know it's none of my business." He looks at me intently. I've just finished doing a session on rights for Self Advocates in Cambridge. I'm used to this kind of curiousity about my disability. The difference between people with intellectual disabilities is that they will often simply a) flat out ask and b)state that they know they shouldn't ask. I told him, simply, that I can't walk.

'Hmmm,' he said, 'have you ever been able to walk?'

'Yes,'I answered.

'Oh,' he said puzzling.

'I've been in the wheelchair for about three years.'

'I've always been disabled,' he said, matter of factly.

'And that's ok right?' I asked wanting to affirm that bit of disability pride.

'Yeah, so did anyone teach you how?' he wanted to know.

'How what?'

'To be different.'

'No,' I said.

'They should,' he said and walked away.

You know what? They should.

Here's my challenge to readers, what would the class titles be in a degree course in how to be different? I've got a couple, but I'll let you all go first.


Adelaide Dupont said...

One course title I can think of is:

Different not Less

and another is

Developmentally Progressing.

Gone Fishing said...

differently enabled, funny this is kids will always ask me why I wear boots' Adults almost always say "oh you have a disability I never noticed

Heidi said...

If actors can do it...

Writing, learning and delivering scripts for those unwanted questions.

Hear it, respond, and move on!

Heidi said...
This comment has been removed by the author.
Kristin said...

I can't match these course ideas but I love the concept.

Ashley's Mom said...

"Uniquely Living"

Anonymous said...

"Accepting Myself"

FridaWrites said...

My husband's ideas:
Stress management
Assertiveness training
Knowing the law
Disability finance (disability focused--everything's more expensive, how to fight insurance)

-Getting your first(or second) wheelchair or scooter (emphasis on planning ahead for possible further disability, proper evaluation since insurance will only cover 1, avoiding injury/clots/pressure sores (no one instructs on this if you're not SCI, equipment specifications)
-The medical model versus the disability model
-You don't have to overcome
-How to keep people from touching
the chair
-Changing personal relationshipos

Mary said...

Ooh! Ooh!

I have mitochondrial disease and PTSD. Now, the fact that the PTSD comes from nightmarish childhood events has meant that virtually everything else has been an improvement on my earliest experiences. Progressive loss of stamina and motor control with two different types of chronic pain though? Yeah, I'm in a fairly dark spot right now.

I need a class on grieving loss of abilities that will never, ever come back.

I need a class on how to convince my university that if my liver stops functioning for a week, the no excuses on late papers thing is not "unfair to the other students."

I need a class on how to cope with constant physical suffering.

I need a class on how to feel disabled instead of lazy.

I need a class on being disabled and also feeding my kids. Disability finance, as someone else said.

I need a class on how to just let go of social work as a career and switch to something realistic' like editing, without feeling like I'm giving up my spiritual life. I just can't do religion.

Bibliotekaren said...

You will have friends but you get to be your own best friend

I think everyone has their own brand of being different. And, those with shared labels sometime make the most assumptions about each other. Functioning, resources, overlap diseases, etc. all make our experience unique even from those sporting the same label. Yes, we get to be our own best friend.

Lia said...

I think this would be less for a training in being different, and more for anybody, but it was the first thing I thought of.

"How to Appreciate Diversity"


miss kitten said...

i'm all for "you are more than your disability".

Megan said...

Coming Together: Diversity

Labels belong on consumer products, not people

Anonymous said...

"Through A Glass Darkly" for the class.

"Through A Glass Darkly" is an abbreviated form of a much-quoted phrase from 1 Corinthians 13 in the Christian New Testament, "For now we see through a glass, darkly", meaning clarity on a situation is often obscured, like looking at something with a darkened mirror.
From Wikipedia

bakafox said...

I second the need for a class on
"I'm Feeling Disabled, Not Lazy"

Also classes giving scripts/outlines better ways of explaining "I'm Disabled, Not Lazy" and "This Isn't A Matter of Trying Harder or Trying Again" to people who wind up enforcing the fears of laziness.

One Sick Mother said...

"Stop apologizing for who you are"



Anonymous said...

Judith Snow would say.."Labeled disable"

Belinda said...

I suggest "Our Heroes," with inspiring stories of the Rosa Parkes's of the disability movement.

And I think there should be a fun class in how to scare the daylights out of people who try to take control of wheelchairs, like alarms that go off loudly with a voice that says, "Step Away From the Chair!"

Adelaide Dupont said...

Try Differently, not Harder is another good class title, especially for the people who feel disabled as opposed to lazy.

Moving Spirits could be the sprituality class/unit.

Virginia S. Wood, PsyD said...

"Developing a thick skin"
"Anger Management: in the Parking Lot and Beyond"

Moose said...

How about "I swear I'll smack you on the head with my cane"? (Or run you over with my chair or scooter)

OK, seriously, I think there is something to the people who talk about self-esteem stuff. It's not just for those of us with the "invisible disabilities", even those of us with visible ones gotta cope with it.

No matter your disability, it's really biting to have people assume they know what's wrong with you and try to cure you with their magic brain power & words. [Personally, I get a lot of "if you just lost weight you wouldn't be disabled anymore!" Sure, and streudel will fly out of my nose and yodel.] Stuff like this erodes our self esteem and, I believe, can make people feel excluded and like outcasts.

The person who mentioned "diversity", I think, has hit a nail on the head. Diversity, to me, covers the idea of accepting everyone, no matter what categories in life they might file into. It's also, I think, learning to accept ourselves as well.

Sorry to get all touchy-feely.

Anonymous said...

Disabled But Able

Gone Fishing said...

How not to apply for a film roll

Anonymous said...

Love it Dave! Agreed!

As a Ryerson Disability Studies student, I have to say DST 501 really should be available to everyone in the D-club.

When I was more obviously disabled for 4 years, using a chair, I accepted the medical model as fact. I knew nothing other. Taking DST 501 was a profound shake up. Suddenly I realized I was part of "a people" and that "my people" had a history. That overcoming was not the holy grail to strive for. That disability PRIDE was a genuine thing, alive, proud and loud.

It was like suddenly discovering that i had a place to belong; that I had a culture.

And yes, different models of disability (medical, social, and my favorite - affirmation) are covered, as is history, culture and pride.

All together - it really did "teach me" how to be Disabled.

I know - I'm biased because I am a DS student... but I wish that a condensed DST 501 could be offered so that everyone could know their history and feel that sense of culture.


RusW said...

Parenting 101

MoonDog said...


Baba Yaga said...

Oh, boy.

How to recognise the safe-enough people.
& that it's more than fine to walk away from the not-safe-enough people.

That the people who get it may be out-numbered by those who don't and don't want to, but are the pick of the crop.

How to pass (as 'honorary' "one-of-us", if not as "the same as you"), and especially how not to. Because sometimes it's not safe not to have the "nearly one of us" pass, but it's soul-destroying and collusive to do it too much.

That there's great fun and resourcefulness among the other different people, which you may never meet while passing, or failing to pass.

That just because "everyone can" doesn't mean everyone can, or should. & that just because what *I* can do doesn't fit into what other people think I should be able to, doesn't mean I shouldn't. And they're probably wrong.

That others have to adapt too. & if they won't, even though they're certainly worth effort, they may not be worth *my* effort.

That being different means different joys, different jokes, different everything, much of it rather wonderful. And much of it nearly impossible until one realises difference is valuable.

& that sometimes it stinks, and it's perfectly legitimate to say so.

That - since the original question was about acquired difference, & since a lot of disability difference is about waning - human beings are resilient and adaptable, and the grief and shock become manageable, or even turn into contentment. That they do it much faster if one reaches out to those who are also different, than if one keeps trying to fit in with sameness. And that the grief is our own, and to be honoured.

& that everyone's pretty weird anyway. Just some of us can't hide it, or don't want to pay the price of hiding it.

Off the top of my head. ;-)