Wednesday, July 20, 2011

Help. I'm Confused!!!

I don't know the point of this post.

There are two competing messages and I don't know which one to write.

I got on to the WheelTrans bus to go to work yesterday and the driver parked me in the middle of the bus and prepared to lock me into place. There was no one else on the bus, typically in that case I'm placed on the left hand side of the bus behind the driver. If there is someone in that spot, I'm placed on the right hand side. I like the sides. I didn't want to be in the middle. I didn't want to be a bother so I said nothing and let him go about his business. Inside I was annoyed that he didn't do what other drivers did and put me in the RIGHT place on the LEFT side. I was also annoyed that I was letting it happen, saying nothing. Further to all this, I don't like sitting in the middle.

When he was done he said, cheerfully, 'I've put you in the middle because we've got a long drive and this way you'll be able to look out the front window rather than just at the belts behind the driver's seat.' Oh. He had a reason for putting me there. I thanked him, even though I didn't care about seeing out the front window I like sitting on the RIGHT SIDE which was, of course, on my LEFT SIDE.

Then we took off. Within moments I found myself watching out the front window and chatting with the driver who turned out to be very amicable and quite social guy. It was nice. As we drove my annoyance began to leave me and realization came in it's place. I didn't like sitting in the middle, only because I thought I didn't like sitting in the middle. I'd never actually sat there. I knew it only because I knew it, not because I'd experienced it. Now here I was experiencing it and I kind of liked it. Oh my.

It turns out the I liked habit and routine, not the Left side or the Right side. In fact, I really enjoyed the middle, maybe even better than what I had thought I preferred before. I loved the ride, it went by much more quickly when there was much more to watch. Odd.

Now, here's my trouble with this story and my struggle to understand what it means. Often I'm confronted by situations where staff are frustrated because a person with a disability is claiming to be making a choice but in fact they are just following routine. Staff feel that if they tried something new, they would really, really like it. They wonder if the forced routines of past supports have morphed into a habit that is interfering with quality of life. They ask for guidance about providing motivation for experimenting with change. I always say that we need to listen to what someone says. I think that's the right thing to do.

But ... I was kind of forced by having something done without asking for my input. If the driver had said, 'Where do you want to sit?' I would have answered out of habit. I would not have learned something new about myself, I wouldn't have broadened my options when travelling. My quality of life would be good because my voice would have been heard but my habit would have led to me not enjoying something I only thought I didn't want or like.

(I want to be clear here that the driver did NOTHING WRONG. I'm not saying that. All the other drivers put me to the Right or to the Left without asking me either. It's just how they place people on the bus. Habit. I always get asked if I want to sit in my chair or on the benches in the bus. I always choose the chair. I know I want the chair because the benches are too low. I don't want the discussion I hope will happen here to devolve into the criticism of a really nice guy whose thoughtfulness brought me a new experience.)

I know that there are those who's disability requires routine and that changes in routine are disturbing and even painful. I'm not talking about those folks here either. I'm simply talking about people who's lives have been run by routine and who no longer seem to be capable of making choices outside their routine. What's the best approach to ensure that we are making choices real, not habitual? Does it matter?

And the big question here, 'Why am I so confused about all this?'


CL said...

It sounds like this dilemma represents a tradeoff between two things that you value: On the one hand, you value autonomy and want your preferences to be respected. But you also value new experiences, which might be more likely to happen if you surrender autonomy and let other people make decisions for you.

Often with these tradeoffs, we decide what to do based on what we value more. And in this case, I think respecting people's autonomy is more important than getting them to try new things. If you had asked to be seated on the side, and the driver had said, "No, you'll like the window better" and then stuck you there over your objection, that would have been wrong.

In this case, the driver didn't do anything wrong because you didn't express a preference. And that's probably because you didn't feel strongly about it -- I understand that you had a significant preference, but you knew the center wasn't going to be painful or humiliating or anything really bad, which is why you decided to let it go. And so things worked the way they were supposed to -- the driver cheerfully did something he thought you would like, and it was okay for him to do it because you didn't object, and the experience turned out to be good.

So I think we can say the general rule of respecting what people say still stands. If someone says, "No, I really need to be on the left," we should listen to them, because it might be important for reasons we don't understand, and because everyone deserves that respect. But we can suggest new experiences to each other, as long as we're willing to accept the other person's wishes if they don't want to try something.

Kristine said...

It seems like no matter what hypothetical situation people raise in my world as a teacher, my response is, "It's going to depend on the relationship you have with the student before ________ happened." If you have a good relationship with the kid already, handling the situation will come naturally. If not, well, it's going to be a lot tougher.

Even completely separate from my disability life, people give each other advice all the time, right? Whether it's major life advice, or just tips on a movie you should see. And most of it, for me, goes in one ear and out the other. If the person giving advice is a trusted friend, I'm more likely to consider it.

I think that in an ideal world, staff will have a relationship with the person with a disability, where advice often is offered. Relationships of trust are built through sharing the small things. (And I'm talking in both directions! As a teacher, I tell my students what to do ALL the time. But I also like to get info, insight, and opinions from them. I've discovered some awesome music, comedians, food, etc, from their recommendations! I've also learned a lot about their cultures and... well, lots of things. :) As that relationship of trust is established, the staff person can offer suggestions and advice about how the person with a disability might want to vary their routine. Same as you would any other person. Give your persuasive reasons. Maybe a "Let's make a deal. Try it once, see if you like it?" would be appropriate. Or maybe not. At the end of the day, it's still the person's own life and their own choice. If they choose to stick with their routine, it's generally not the end of the world. The important thing is the relationship, the trust; that's what empowers them to make their own decision, whether they choose to take someone's advice or not.

Anonymous said...

Because my parents were always worried that despite of my chd I would find my way in this world they gave me a kind of daily routine and I learned a lot of selfdiscipline. When these things were established my Dad told me about "Kompromiss" which I guess comes to the englisch agreement.

Sometimes we did an agreement over new things and it that made it easyer for me to try other things outside my routine.

I highly agree with what CL and Kristine said.

Julia (from Germany)

Feminist Avatar said...

My in-laws never try new foods; in fact, their response to most new foods is 'I don't like that'- even though they have never tried it. And, I don't mean they just aren't adventurous- they won't eat mushrooms because they 'don't like them' but have also never tried them. Why are they like this? I don't know, but I imagine that a psychologist will probably be able to point to something in their upbringing that made them less adventurous eaters.

Some people just like routine and are unwilling to try new things and that is ok. Yes, we might think they are missing out, but ultimately they have the right to live how they want. And, yes, some disabled people are conservative because of the institutions and environments that they lived in, but that is now part of who they are and should be respected. In fact, we might even see the wish to 'change' conservative people as a denial of those life experiences, when they should be acknowledged as part of what made them who they are.

(Which is not to say that choice shouldn't be available, or that we should encourage our disabled children to be equally conservative).

Belinda said...

My comment is quick and not as thoughtful as the others so far. I think it IS confusing. I think stretching people--being stretched myself--is a good thing--and it doesn't always happen willingly (in my case)but I strongly believe in autonomy for people. I agree with previous comments that pointed out the importance of relationship in helping people risk and stretch.

krlr said...

I'm going to out-short Belinda here and throw in my 2cents: this might be less about disabilities and more about being human. We are All creatures of habit.

(yes, yes, to greater/less extent, caveats, exceptions, etc)

Becca said...

I think that most people, disabled and not, tend to do things because they fall into a routine and don't like change.

If we acknowledge this, then the question might become, should we allow disabled people to act the same way as non-disabled people do in this situation?

That question is easier to answer. It's the same reason training in how to report abuse is important, despite some people who protest that false reporting will be a problem. It's not a problem isolated to any group of people.

coffeetalk said...

In my husband's family, all special occasions are the same....the same food, the same conversation (someone always, and I mean ALWAYS mimicks the dog vomiting under the table from the Christmas Vacation movie)....the same. One such occasion we decided, since the event was being held at our house, we'd switch things up. We did a mixed grill-type meal. Several choices of bbq'd meat and all the fixings that go along with that. It was the most ackward meal I've ever been a part of. Somehow the same conversation didn't flow like it usually did and no one was comfortable with anything. The occasion was not a positive experience for anyone. Was it simply the food change? I don't know. We've not done it since and know that we will forever be eating turkey, mashed potatoes, green bean casserole, etc. for all occasions. I LOVE trying new things, but have learned that for some there is comfort in the "same". So, to answer the question, "Does it matter?"....I don't know the answer. As a developmental service worker, I am always aware of offering choices, but understand that sometimes the outcome of an experience is dependent on a comfort level. Thank you once again for "putting it out there" for us to consider.

Tony said...

This seems pretty straight forward to me. If you allow people to make their own choices, sometimes they will make the wrong ones. People are still allowed to be wrong.

If you had asked to be on the left, he should have put you on the left. You didn't ask to be put there and lucked out that this was one of the times you were wrong about what was better. Now maybe you will be wrong less often in the future, but the onus is still ultimately on you to decide when you might like to try something new and when you'd rather things just stay the same.

Princeton Posse said...

I agree with Krir in that we are creatures of habit. I suspect that sometimes the "habit" protects us from having to think. I like routine but get bored so I change the routine but if anyone else tries to change the routine or interupts, I get upset. What funny creatures we are.

Belinda said...

Tony hit the nail on the head and now I am outshorting Krir! :)

Trish said...

In terms of applying this insight to someone in a support or caregiving role, I think a crucial bit of information would be how much the disabled person understands about their right and ability to make choices.

Because my son has autism, we have had to explain to him a lot of background information about why trying new things has value and how to decide whether the level of discomfort he is feeling at the idea of trying something new is manageable or is too high for him to handle at that moment.

We might encourage him to try something for a shorter time or smaller amount and explain that he can then make another decision of whether to continue or not. If it's an activity, perhaps he could watch someone else do it or read about it first to help make up his mind if he wants to try.

Often, I find that knowing he can say no, say stop or say that he needs help gives him the sense of control he needs to be willing to try. So having written all of this, I guess it all comes down to the issue of control. If you feel that you have control in general, you may be more willing to accept the feeling of being out-of-control that a new experience often brings with it.

Colleen said...

Dear Dave:

I agree with Trish's comment that the person must always feel that they are in control of what happens to them. They must feel that they can request change and change will happen.

Before we encourage someone to try something new we have to establish that they can pull out at any time. Typically we have that power. If you have lived life without that power - where your stop or I want out means nothing - then trying new things is a kajillion times more scary I would think.

As a support worker I would establish that trust with the person. My students are encouraged to let people know that they will stay with them through a new experience and if the person says they want to change something or leave then they change that thing or leave - no questions, no cajoling. They wait until the person is ready to try the new thing with this reassurance. No has to mean no.

Great discussion!

Anonymous said...

What an interesting and thought provoking post and comment thread. Thanks Dave.

As the caregiver for a young child I was wrestling with a somewhat related dilemma this morning - how much to push my son to give away some of the toys he no longer plays with. Of course, disability and childhood are different in important ways, but this has helped me think about the most important values I want to foster in my son and how this decision factors into them. Thanks for the help, all!

Noisyworld said...

Why are you so confused? Because people are complicated, it doesn't help you at all but it's the truth :/
You cannot make a true decision without trying the options, but if you're too blinkered/scared to try the options (you didn't even realise there was a choice) you make a decision with what you know.
This is very familiar to me, I think somewhere's going to be really loud, but I get through it anyway, it's difficult because I'm inflicting pain on myself, but it's (normally) worth it :)

liz said...

I think that autonomy is more important.

That said, there can be fun ways to encourage ALL people to change things up a little, like Backwards Day (eat dinner at breakfast time, switch seats around, etc). Afterwards, people can ask what the other folks liked about doing things the other way. But autonomy comes first.

GirlWithTheCane said...

I think that autonomy is more important.

When I worked with youth with disabilities, many of them had a hard time when people (doctors, counselors, agency reps) were added to their support teams. Since I was the person who often did the referrals to these new members, I had a conversation with the person I was supporting before the actual referral happened. If after these conversations they didn't want the referral to happen, it didn't. And if at any time they got uncomfortable and didn't want to go on receiving support from the new team member, we had an agreement that they just had to tell me, and it was done. This meant that sometimes people rejected help that I really rather they would have kept, and I had to learn to accept that. But most of the time people would at least try, knowing that they didn't have take what was offered if they didn't want to, and I really felt strongly about letting them make their own decision...even if I couldn't see a good outcome coming from it.

Anonymous said...

I don't like change very much, I love routine and get really annoyed when something happens to interupt what I am used to. That is just my personality type.

But change happens.

Although I don't disagree with anything anyone has said and autonomy is of vital importantance I do worry we don't prepare people for when change does happen and has to happen. So when an elderly carer dies or a change in staff due to holidays takes place, respite etc etc people can become distressed but what if it is just a quality of life change?

My six year old son hates change, he won't go swimming, doesn't want to learn to cycle or go to social groups or events. Sometimes I make him attend these, sometimes not, sometimes it works, sometimes it doesn't.

Guess I am just as confused.

Tamara said...

I can't relate to the staff/person with a disability relationship at all, so maybe I don't get it enough to comment. But, honestly, Dave, I'm confused too.

I'm thinking of this as a parent and thinking of how my kid would just eat bologna sandwiches with ketchup and watch pokemon all day if he, at 14, was never "encouraged" to do anything else. I sure do try to give him choices, but also try to give him good choices to keep him out of "ruts".

I try to relate that to how I hope he's treated in the future, and it's just making my brain hurt.

I hate this post. It's really making me think way too hard.

Thanks, Dave.

ivanova said...

What a great post!

Here's a caregiver POV: I think all people have had the experience where we did something unexpected and maybe unwanted and it turned out to be wonderful. I think people with disabilities who have caregivers sometimes end up stuck in a rut--not because of their disability, but because it's easiest for the caregiver to adhere to a routine. I think it's nice to be given a new option, like "Hey, can we go this other way today?" As long as the person gets to say NO!

I worked for 4 1/2 years with a child with autism who likes his routine a LOT. But I have a short attention span and I crave novelty. So I was always trying to mix it up and do something different. I was constantly encouraging him to try something new, just for my own selfish reasons. Sometimes he would go for it and sometimes he would refuse. But as time went by he became slightly less rigid in his thinking and more relaxed about his routine. And I think it helped him realize the difference between times he could make a choice and times where he HAD to do something (like if he had to go to an appointment or meet his mom.) But this is just my POV as his babysitter; I can't speak for him.

Anonymous said...

Great post! I can definitely apply it to my own life ... like when I feel crumby and want to shut down the world and sit in front of the tv. I have to really push myself to remember that maybe doing something outside of my cocoon, or even more radical ... doing something with someone else ... can really help.

And with the folks I work with .. I try to listen and remember.... like when someone says they don't want to try a new job activity, I remind them that I have been listening, and they have told me about their dreams to have their own apartment, and a job... and that they have to try, one day at a time to do things to lead them down that path..... moving forward and doing things unfamiliar scares me too... but only sometimes.

Karyn said...

I'm really struggling with expressing myself on this subject.
Leave well enough alone. Why do we always think that our way is better? Why do caregivers think that they need to make life "better" for someone? Is their life lousy?
If we truly want to make life better then lets work on making sure that each staff person is at their shift so the people served can count on their routine not being disrupted. Let's make sure we are doing the activities and routines that the person we are serving wants, not trying to fit the person into what we want to do or think they should do.
It never ceases to amaze me how activities change with the staff that provide the support. Whose activity is it? Yeah, I know everyone has unique relationships but, really, totally different interests?
Let's advocate with legislators so the people we serve are actually able to make choices about where they live and work. No matter what the national economy looks like or who is in office.
Let's be realistic in the fact that most support staff are in a person's life less than 2 years. Often less than a year. So,recognizing that staff are only making a short term commitment they need to respect that the people they serve have a whole life without them.
So, I think that individuals served by agencies try enough NEW in their lives and staff need to assess why they want someone to change.