When I was an undergrad, I failed Art Curriculum and Instruction because I missed a bunch of classes because I was ill. When I took it again, with a much more accommodating teacher, I told her at the beginning that I get sick a lot, and was hoping not to miss too much class, but if I did, could I arrange to do extra work to make it up. She agreed. I didn't miss that much class, I think like three, but to get my "participation" grade up I asked to do an extra assignment.
She gave me the book, "The Seven Habits of Highly Effective People" by Stephen Covey and I had to write some sort of paper on how it applied to teaching. This was when the book first came out. Now, I know, the lingo and concepts in it have been so overused and misused in the corporate world that when anyone brings it up, it automatically causes eye rolls and groans. Be Proactive! and Synergy! now have about as much value as the concepts in "Who Moved My Cheese?" which has to be the stupidest book ever written that corporate minions have ever been forced to read.
Anyway, I liked "Seven Habits." I also went on to read "First Things First" and "Principle Centered Leadership." I'm sure to many people the information in these books was nothing new. But to my little 19 or 20 year old brain, it was all stuff I felt like I hadn't been taught before. I think I had a gap in knowledge or maturity or something. And I see it in a lot of disabled people, especially young or newly disabled people. The gap is in the ability to set your own standards and expectations for yourself.
When you are disabled, people don't know what to expect of you. Their expectation are either way too high or too low. They either think you can't do anything, or they expect you to do everything just like everyone else. This either/or mentality permeates every facet of society. Social Security Disability Insurance either expects you to be able to work in gainful employment full-time or not at all. That is actually their definition of disability. In academia, all of the standardized tests a person with a disability takes with accommodations (i.e. with a person to read the test to you if you are blind) come with an asterisks on your score card saying your scores don't count. Families have trouble setting expectation for those with disabilities that are both fair and equivalent to their siblings. My sister is still bitter because she worked all summer to purchase a new bike and my parents bought me mine after I had my second hospitalization in a years time. Employers either flat out refused to hire you, or hire you but refuse to accommodate you. You never can tell sometimes if the people around you are letting your poor performance slide by or if they are amazed by something that you do that is completely natural for you like it is a great skill. It is everywhere, and if you are the person living it, day-in, day-out, you come out of it not knowing what to expect of yourself.
The Covey books, for whatever reason, seemed to fill that gap for me, or at least get me on the road to figuring it out. Covey talked about a circle of concern; all of the things a person is concerned about. Within that circle is the circle of influence, which is what you can actually do about it. For example, I'm concerned about global warming, but I can't fix it myself. I can, however, vote, purchase, and live in ways that help solve it and not make it worse. I'm concerned about D's health. But I cannot keep him from having health problems. I can only do what we've both agreed that I will do to support his good health habits.
Another thing that struck me from the Covey books was the notion of an Emotional Bank Account. You make deposits to people's emotional bank accounts by showing them kindness and compassion. If you've deposited enough and have enough credit, than every once in a while, if you screw up and make a withdrawal, your debt will be allowed, or even a loan may be extended and you will have to pay it back in kindnesses. If you make too many withdrawals, your credit may be extinguished and you will no longer be able to bank there. It sounds kind of cold and crass, but it is not that much different from the idea of Karma.
This is important for disabled people to have a handle on, I think, because you sometimes have to ask for help a lot. You sometimes feel like you are always indebted, and you sometimes have low self-esteem socially and may let yourself extend too much credit to those who don't deserve it anymore. It is important to know that your bank is just as important as everyone Else's. You deserve deposits, you don't have to extend credit past where you are comfortable, and you should make sure you keep a positive balance with those who help you.
I gave these books to D when he was in the hospital. He read parts, and is now using the Covey system a bit to manage his time and responsibilities better. I think D has struggled with these kinds of issues since becoming disabled. It's tricky as I have talked about earlier. Some think he should be doing everything, some think that it is so unfortunate he got in this accident 12 years ago that he should not have to lift a finger to help himself. Of course it is somewhere in between. Support needs to be respectful of the persons individual expectations of himself. When that support goes overboard, it is no longer support. It is hurtful. It says to the person, "I don't trust you to do this. I don't believe in your abilities. I don't think you can survive on your own without me." I've seen D be hurt like this and have done what I thought was right to stop it. But it is not for me to stop. He's going to have to deal with that challenge on his own.
I was asked today, "What would you do if one of your sons had a terrible accident like D did?" Well, of course I would mourn the loss of the body he lost. Then I would have to do what was necessary to be supportive. At first, that would probably mean a lot of hands-on help. But slowly, just as I'm doing even now in their first habilitation, I would have to step back and let him find his new life on his own. Slowly, my circle of influence would have to shrink, even if my circle of concern did not. The loss of bodily functions and health is enough to get through without the loss of self added to it. And after perhaps a couple of years, I would only see my son's disability in the most logistical and practical of senses, it would not be his whole identity. For he would have his own new self that has grown and changed throughout the years and throughout the rehabilitation experience and beyond. I would get to know that self, and not stifle him in the box of disability and rehabilitation his whole life. My mourning period would go through its phases and fade into the background. And my joy would return in loving my son for who he is. Easier said than done, I'm sure. But I've loved a good bunch of disabled people as friends and lovers, and have gone through their journey with them. What I was able to deposit in their emotional bank account the most was the ability to appreciate them for exactly who they are. The person who asked me this expected me to say something like, absolutely whatever I could to support him. And this is true. But I know through years of experience that that means letting him be the best person he can by letting him make his own mistakes and learn from them. Many, many times I have had to stand back and watch a child, even disabled children, even my children, struggle and goof up so that they could learn how to do it right.
When I was in blind rehabilitation, we had a blind cane travel instructor who quite often, made us go out and do a particular travel route on our own. Many other blind rehab centers insist that the instructor be sighted and be within something like 30 feet of the blind student. I have to tell you, without the blindfold, the blind instructor, and the traveling I did on my own as a totally blind person (wearing a blindfold) I would have NEVER believed in my abilities to handle myself when lost (and, yes, you do get lost. The trick is getting unlost.). If a sighted person was there to watch over me and catch all my mistakes, you probably would not see me traveling today with two small children. Perhaps I would not even had the confidence to have children. (By the way, no blind person has ever been injured or harmed in any of the many blind rehab centers who use this method. Its all about the skills and confidence in your abilities.)
I'm meandering a bit here, but I started thinking about this when I was asked this question by a dear family member who, with all the good intentions in the world, has hurt D. He has been that sighted person standing at arms length to catch him when he falls. It has been stifling for both of us at times. I made a mistake by getting involved in this, for as I said earlier, it isn't for me to tackle. It's a bit hypocritical for me to do so on behalf of D. So I apologized for that. It is not my intent to hurt anyone. But D is who I love, and I did what I was condemning. I gave too much of the wrong kind of support. One thing I never do enough of, is keep my big mouth shut. Most of the time I like me that way. But sometimes I do things that I regret.
humm this is good stuff for me to think about. I need to remember that my becoming disabled doesn't mean that I get to take and take out of my families emotional bank. I still got to find a way to pay into it, even if I can't do it in the way I use to. I'm not even sure how to do that.... I use to do it by doing things like running over and doing the dishes just as a suprise or cleaning the house when they were on vaction... but I can't even do that at my own house now. Hummm how do you give when you are not mobil anymore? How do I show them that I love them? Good post lots of thinking to do about what you have written.
Posted by: achromic | October 28, 2005 at 10:06 AM