"We'll stop for a coffee at Subway."
"No, I want to go to Tim Hortons."
"You want to go to Subway because it's on the way home."
"I always go to Tim Hortons."
"Tell you what, we can go to Tim Hortons next time."
"I don't like Subway."
"Their coffee is the same as Tims."
"No it's not."
"You have to learn to be flexible, besides Subway is on our way."
"But I don't like Subway, I always go to Tims."
"I've had enough of this now, we're going to Subway."
"It's supposed to be my choice."
"You do have a choice, go to Subway or go without coffee."
"OK."
"That's a good decision."
From the moment this conversation began, you knew two things. Who had the power. Who was going to win. This is an actual conversation that I overheard while being out and invisible (as we disabled people are) in the community.
No, I didn't intervene, didn't say anything.
First, I thought the woman with a disability did a good job of speaking up for herself. She asserted herself well, remained calm during the discussion. She only gave in when it was clear that her continued protest would end in actual punishment.
Second, I'm guessing the staff had a reason for wanting to be back at the house, to go to the closer spot for coffee - why didn't she say so. I mean plans change, life throws curve balls - couldn't she say, I've got to get back to the house earlier than expected, sorry but it'll have to be Subway. Instead of explaining she tried to use force, coercion and confusion. In the end it was her power over the other's dependancy. How do you feel good about that kind of interaction?
These little interchanges, forgotten in a few minutes by the staff (parent) leave a lasting impact on the self esteem of the person with a disability. She walked out of the store with such a sense of disappointment and defeat. Following along behind like a chastened puppy. It was hard to watch. What was harder though, was to realize that the staff didn't even get what they'd done to her. The staff just looked pleased that the issue was resolved and that they were on the way to Subway.
When will we finally understand.
It's isn't ever really about the coffee.
Oh MY. G-d, I pray I don't do that. At least not too often. She should definately at least explained......
ReplyDeleteAt first i thought this was a conversation between you and Joe, and was wondering which of you was which voice until the end of it...
ReplyDeleteThe same conversation takes on a COMPLETELY different tone when, instead of between equal partners in a relationship, it's between someone with an assumption of power over another person and the person ze supposedly has power over.
I don't think the staff person needing to do something else is an acceptable excuse - the staff person is working for hir employer, not the other way round (or at least, IMO, the directly-employed personal assistant model is the only ethically acceptable model for such relationships). If the staff person is working for 2 or more disabled people and their needs conflict... then that shows that there's something fundamentally structurally wrong with that arrangement, not that one disabled person should compromise what they want for the other(s).
Too often I am intervening in interchanges exactly like this. My staff are truly unaware of their complete dictatorship and power play until I point out to them that they are:
ReplyDeletea) paid to take directions and listen to the people we support completely
b) are not engaging in "person-centered" activity when they deny anyone their choice of diner coffee, McDonalds coffee or Tim Horton's....
c) are being institutional and unkind when not engaging and detailing the reasons that a "shorter route" back home is paramount...too often staff seem to think that keeping details and info from people is in the interest of the people they are paid to help...NOT...indeed it is ultimately lying...
so, it is an ongoing teaching and learning process....and, until they get the epiphany, I must keep on showing my staff who I train that it is not about the coffee!
I coordinate habilitation/respite services and provide the staff to individuals living in the community. This was such an overlooked subject in our traing program. You have really enlightened me, and therefore about 70 staff, regarding the perceived and mostly unrecognized power staff can have over the individual.
ReplyDeleteYou have such a possitive impact on me and I am so greatful I am in the position to pass it on. I have been in the field for 17 years and have learned more from you (attending one of your conferences) in 7 days than all those years of "trainings" I have attendended.
Coffee is an issue that is constantly a power struggle between the staff that I supervise and the men they work for.
ReplyDeleteI don't know how many ways I have tried to explain to the staff that it is not their job to make decisions for these men.
I hope you don't mind if I print out this post and pass it around to the staff I supervise, hopefully it will open some eyes.
CAM
CAM, I own the copyright on everything written here but I give a blanket approval for people to duplicate and distribute any way they wish as long as my writing is credited to me. Thanks for passing this along to your staff!
ReplyDeleteDave
I like that you included parents. And I don't think it should be limited to parents of adults with disabilities.
ReplyDeleteAs a mom of an 11 year old with Down syndrome, I find myself in situations where I have to ask myself what I would have done with my older sons without DS.
I have to make sure I'm just making a (hopefully good) parenting decision and not just power playing a kid with a disabilty.
It's seriously hard sometimes. He's only 11, but there are times when I have to think hard about what decisions an 11 year old should be able to make for himself.
This is good to read!
Ahhhh, I needed to go back and read the entire conversation again. At first read, I thought.. oops, I have done this with my kids... until I read the "It's supposed to be my choice" part.
ReplyDeleteOnce I've let them know it's their choice, that's it. It doesn't matter if it's 40 miles out of my way... I have to follow through.
These interchanges leave a lasting impact on anyone's self-esteem.
"From the moment this conversation began, you knew two things. Who had the power. Who was going to win."
ReplyDeleteAny conversation that bears those marks has a problem.
Power is one thing that is best given away.
Now I'm worried that I made my point poorly. By saying that power is one thing that is best given away, I didn't mean our personal power as humans, but that giving away the other kinds of power we hold onto so tightly, actually makes for a much more powerful person.
ReplyDeleteKei, I think that a proper choice is between workable possibilities! If My 14 or 22 year olds would tell me they wantd to go 40 miles away, I would say forget it! You have to properly define the choice. Lets get a BIT more realistic here.
ReplyDeleteAnd Tamara, I can't see giving my 13 year old daughter (who has DS) the same choices as a regular 13 year old in everything! They simply don't have the experience and knowlegde needed. We need to teach them so that they are moving towards independence, but it won't be at the rate as a "Normal" child. We have to aim for goals like that, but I think that realistically, it just isn't feasible at all times.
People feel good about that kind of interaction becasue they are usually powerless/choiceless, and here, confronted with a person with even less power, they take their moment of revenge on the world. They take it out on the most powerless and vulnerable. In this very simple coffee conversation you have the root to most, dare i say all, racism, elitism, sexism, disablism, etc. It's all there. You have a special gift, Dave, to see the big issues in the daily moments we don't even notice most of the time. I am so glad you kept this blog going longer than you planned originally. Please continue, even if you don't manage to keep the frequency. The world needs you, Dave Hingsburger!
ReplyDeleteI can tell you when attitudes such as you described will change. When all people with disabilities are seen as fully HUMAN. Only then will the world at large treat us with the dignity they themselves expect. How will this come about? I think it will be through people like you who have dedicated their lives to this worthy cause and through people like me who refuse to accept unacceptable behavior.
ReplyDeleterickismom,
ReplyDeleteI live so far out in a rural area that I have to drive nearly 20 miles just to get to the grocery store, 45 to the mall. My son's special needs dentist is over an hour away and his Cardiologist & Ophthalmologist are a 2½-4 hr drive, depending on traffic. Usually when I give the kids (I have 5 children ages 22 to nearly 8 yrs old living with us) a choice, it's because I also want to have the choices that are further away ;) So for us, 40 miles is a realistic choice.
My hubby & I will often decide spontaneously to drive 1- 1½ hours away just to go to an Olive Garden.