Sometimes it is a challenge making a whole blog post out of a tiny moment, but sometimes it's tiny moments that have gigantic personal meaning. Here goes.
Last Sunday, Joe and I went out for lunch with neighbour lady across the hall. Tessa is a scooter user and the three of us make quite the sight making our way down Yonge Street, me in my chair, she in her scooter and Joe limply slowly making his way behind. We chat on the way down, trying to always be aware that we need to leave space for other pedestrians (a courtesy that isn't always returned). We were headed to a food court in a nearby mall because we knew they had hot and sour soup which sounded good on a cold day.
When we arrived and took of first one, then another and finally the last layer of covering, we were ready to get our victuals. When we got to the counter we noticed that they had a tofu and rice dish on the menu for that day, Joe and I switched to the tofu dish and Tessa, wisely, stayed with the hot and sour soup. When the food arrived and we were all tucked into our table the soup smelled wonderfully of flavours and the tofu dish was bland to the point of being aversive.
After one bite I looked up at Joe and said, 'It really needs some soy sauce, would you mind getting some?' There was a pause and then Joe said, 'No, you go get some.' In a second I realized several things, first I was sitting closer to the food counter, second I was in my power wheelchair and third I was getting so used to dependency that my first thought was to ask for help.
I laughed and said, 'Of course, I'm in my power chair, I don't even know why I asked you.' I went over and easily, more easily than if Joe had to do it, got the soy sauce. We went on with lunch but I knew I'd be thinking about that moment for a while. And indeed I have.
There is a really addictive nature to dependency and receiving help. At least there is for me. I can forget to do it for myself when there is someone around who can do it for me. Oh, not in the big things, I can think for myself, I can speak for myself, but in the little things. And I've seen it in other disabled people too. There is a woman who is often on the same route as I am in the mornings on the bus. She is also in a manual wheelchair. She, like me, can stand and can walk a bit. Now when I get on the bus I always get up and walk up the ramp. I'm very heavy and I don't ever want someone injuring themselves pushing me up a ramp that I'm capable of getting up myself.
However, I sit and watch this woman being assisted off the bus, often with some difficulty as the driver maneuvers her chair around others on the bus. She is also very big and the drivers have a difficult time. I've never seen her stand, which she can, so the driver can easily move the chair. Instead I see her ENJOYING her dependency. She annoys the hell out of me.
And then, at lunch, I reflexively ask Joe to do something I very much can do on my own. Arg and Arg again.
Thankfully Joe had the moxie to simply say 'no'. I hope that other disabled folks reading this also have people in their lives who say 'no, do it yourself' when it's appropriate. I hope that others who love disabled people have the courage to deny help when it's not needed. Every now and then we need to be reminded to use the competencies we have and to think constantly of what we need and what we don't.
Thanks Joe.
Great post. That's the real difference between someone being your supporter and being your carer. A supporter wants you to be independent, even when you're feeling lazy.
ReplyDeleteThanks for this post-it is a topic I have thought a lot about over the past year and struggled with trying to understand when "helping" is the wrong thing to do.
ReplyDeleteKudos to Joe for his moxie and to you for appreciating it.
ReplyDeleteYep. My mom had to help me yesterday after a medical procedure and she exclaimed, "you're so independent!" There are certain things I needed help with, but it's important to maintain my strength too. Sometimes that means my husband is waiting around to help when I tire out.
ReplyDeleteI wouldn't give that as blanket advice. Some of us have the opposite problem -- trying to do stuff that we shouldn't, to the point of harming or even nearly killing ourselves, and sometimes harming those around us who have to clean up the mess after we fall on our faces. For all you know, that woman may be enjoying not having to cause herself excruciating pain or injury by getting up. I know people who can stand seemingly perfect for a few seconds and after that they hit the floor really fast, which potentially not only injures them but can make someone throw their back out trying to pick them up afterwards. As someone who comes from an entire neurological group of people who have a tendency not to show even terrible pain on our faces, I know what it is to be judged for not doing something myself that would cause that level of pain, and for not doing something that I either cannot or should not do. I have watched others of my neurology in situations like having people demand they push themselves with limbs that are bone on bone already, to the point where muscles (yes, multiple muscles) start completely ripping off the joints, all because they don't show pain in a typical way and they could do it for a few seconds so what's a few seconds more? This is the exact attitude that leads to situations I know you have seen in developmentally disabled people because you have written books about it. And this is not to mention that a person might be able to stand and walk one day and barely move the next with many conditions. I am also surprised at you as a fat person for judging a woman partly on the basis that she is fat and therefore apparently ought to be able to do more to stay out of people's way.
ReplyDeleteI know people can get lazy because I have seen people admit to it and I have on rare occasions been able to get to know someone well enough to spot it. But since my own drive not to be lazy (which originated in people a long time ago judging me in situations they didn't fully understand) has nearly killed me on several occasions, as well as seriously harmed other people, I really have to take strong exception to your calling out another person on it in a situation you nay not even fully understand. The rest of the post was perfect but that one part called up flashbacks of things like lying on the sidewalk having three people griping at me for inconveniencing them and being lazy, while all the while I was experiencing a level of organ failure that would normally have long since had a person bedridden for months rather than out hanging out with friends in any capacity, sidewalk or no. And because of their reaction to me, I got up, got into the truck, and went back home to not show much pain for awhile after until I was finally diagnosed (but only just barely because the doctor almost decided not to check for the problem since I was still driving myself to be far more functional than most nondisabled people would ever be in those circumstances).
Don't get me wrong, the situation you are in is something to celebrate and something to write about, but that moment when you start judging other disabled people? That's the point where those of us with the opposite sort of problem start tensing up and making ready not to show it the next time we have real trouble, because that stereotype about the lazy gimp enjoying our helplessness, it hurts to get hit with it so much that many of us would die to avoid it. And when you start putting that judgement on anyone but yourself is the point where many people (the ones who are unaware it is just a stereotype) will nod and think they understand and go on to apply it to people THEY barely know. Laziness pisses me off too, but it's only rare circumstances when I would presume to know enough about another disabled person to apply that label to them.
I entered developmental services with no direct experience and a lot of heart. Too much heart. I thought it was my JOB to help people do EVERYTHING. But supporting people is different than just helping them. A wise mentor, Katie S., used to tell me, "Everytime you do something for someone that they can do themselves, you increase their disability. Everytime you expect people to do for themselves what they able to do, you are supporting increased independence and their quality of life."
ReplyDeleteNow, my question is: Does this mean I should tell husband Ron that he doesn't have to wake me up in the morning with a hot cup of coffee waitng on the night table anymore? (I hope not!)
Uh oh, Dave, I think you've done it again. You ask, beg, plead with the world not to judge or assume, but you've made a huge assumption that the woman in the chair ENJOYS the dependence. Unless you have actually validated your assumption with her in conversation, I don't think you can be so certain. Who knows what her actual ability or pain levels are? Who knows what legacy of parenting, caregivers or personal choice drives her behaviour. Love you anyway ;)
ReplyDeleteAmanda and Fun Mom, I try to keep my blog posts short and readable. Do you know how tedious this piece would be if I explained all of the observations that lead to my conclusions and how I came to the 'best guess' regarding the woman I described? I think that someone who allows herself to be lifted on a bus then moments later stands, unlocks the door to her home, folds the wheelchair and lifts it over the stoop, could probably stand for a second to allow the chair to be easily moved, but maybe not. Grant me the right to telegraph some images without describing the whole process of development. Even with what I've said, it's still a guess. I know that.
ReplyDeleteAh, Dave. Joe loves you!
ReplyDeletePoint well made, Dave. I made an assumption that you made an assumption. Sorry 'bout that. But what (just supposin') if this woman had been yelled at by a previous caregiver for standing or trying to assist in the getting on/off vehicles? We can see the visible, but the feelings and histories remain hidden. Just sayin' :)
ReplyDeleteI have the exact opposite problem, it's still a revelation to me to think that I have the right to insist on being accomodated. Since I was autistic from birth but only diagnosed at 15, I went a long time just struggling along on my own.
ReplyDeleteAnd I think you're making assumptions. Maybe this woman can stand in some circumstances but not others. Maybe standing tires her out a lot, so she doesn't do it when it's not necessary. She is living her own life, and you don't know her.
But I do see your point with some of the kids I worked with. One autistic boy that I took swimming, I'd always dress him and he never made any attempt to dress himself, but then his mom told me that if she went to another room, he'd dress himself. He only did it if he thought someone else wouldn't.
Another girl, I worked with her awhile, and then there was a few months break, and then I worked with her again, and at first I didn't realize she'd gained self-help skills in that time and automatically helped her. She didn't do anything to discourage this - it's only because we were *both* getting changed and I took a break from changing her to change myself that I realized she could do some of it herself.