Before I became disabled, I was perfectly aware of access issues and of the diversity of barriers that I would face. True, I had no idea about the constancy of experiencing one kind of barrier or another. I knew these things because for a little over a year I was a pusher. I worked with young adults in their final years of high school, all of whom had one kind of physical disability or another. I also knew it because I had friends who used wheelchairs and we often went out together.
But.
Wow.
Pushing the chair and being in the chair are very different experiences. As pusher I got the kindly looks, others didn't see me - they say my generosity and my caring spirit (puke). Sitting in the wheelchair gives a different world view. So I came to know hostility as a barrier that I would not have identified. I came to understand that the world was not mine and that any space I had was 'given' by others, never rightfully my own. I came to understand that difference and disability are at fault for the social awkwardness and social cruelty of others.There is such a strong social convention for blaming difference for the punishment it receives, it's hard to avoid that trap. So some of this kind of thing was new to me.
Even so.
I pledged to myself.
And.
I promised Joe.
That, when we were going somewhere, I wouldn't start thinking about the difficulties of managing my way over uneven curb cuts or through narrow just fitting doors or the anxieties of dealing with the social aspects of disability become a reason for deciding against going somewhere. I knew that actual physical, can't get in, barriers were a different thing. My pledge was that if I could go and wanted to go I would go.
I almost broke that pledge yesterday. We were talking about something that we do on occasion, something we both like, and as we talked I began to think of all the ways that this was difficult for me and, part of me just didn't want to go thorough it. I could do it, I wanted to do it, but ... I didn't want to deal with what I'd have to deal with.
I began to say 'no' knowing Joe would think I didn't want to, but I did, I could have lied and said I was tired. But I didn't, I started talking about all the myriad barriers to going.
Joe gave me a hard stare.
We went.
11 comments:
Usually I have no trouble with what you post, but for some reason this one bothers me.
You and Joe can have that arrangement - but barriers are real, and can take a lot of energy to overcome, and at some point the amount of energy expended is above the limit - and there is none left for enjoying the experience. I find myself in that situation often, as one of my disabilities robs me of energy.
As we get older, things get harder. Even the bodies pushed by the most determined minds will have to adjust, and change their expectations downward.
I'm glad to see you can still overpower the whiny interior voice that needs overpowering. But I can't take the insight you're offering here - and there's no shame in dropping unrealistic expectations.
It all depends on what it costs you for the next day and beyond. And who shares that cost with you.
I went past one of these barriers last night - and I barely made it home. It was scary.
Alicia
Alicia, you are entirely right and I got this wrong... about ten minutes after I wrote it I shook my head in dismay. I'm leaving it up for others to weigh in.
I'm not sure it's a matter of right and wrong....more that different factors have different weights each time this type of situation arises. You and Joe have a healthy relationship, so his point of view is reliable. Hope you enjoyed your outing.
Dave -
You don't have it wrong - for you. And Joe. And now.
I envy that.
You would probably envy me the ability I still have to go to things by myself, and to get in and out without direct assistance yet.
But each person has to weigh the cost to self and others of making promises. And should know their own limits.
I think what happened is that Joe knows you too well to let you do things he knows will be bad for you - and therefore, worth the cost you both have to pay when you go out.
Cost/benefit analysis - and I don't let my husband know how bad it is, because he's willing, but I want to postpone the time when I HAVE to depend on him as long as possible.
I stay home most of the time, but I can still do a couple of things - and I don't know how long I will be able to. When I can't do them on my own, they will have to stop - because him helping me would be a huge burden (I've done the analysis).
I didn't say you were wrong - I said it bothered ME.
It still made both of us think - and that's always worth it.
Alicia
Just wondering - in the end, was it worth it?
I agree with both the posters above. I was physically disabled by chemo and my husband was reliable at knowing when I was too tired to do something. He'd know before I did. I'm a pusher througher, tough it out person, wanting to ignore physical stuff. It worked for us, his sometimes setting a limit. I like that Joe can give you "the look" and have you rethink your decision, but hopefully he, like my husband, knows when something is too much. Hope you had a great time!
I use a wheelchair. I am a woman. I am old. I live in an inner suburb of a big city.
I have set limits for myself that have to do with my safety, my energy level and my enjoyment (or lack thereof) of a given activity. For example: I don't go out alone at night, I only go to one activity per day. That sort of thing.
I am the one who sets my limits. And I am happy with that. And I am delighted that no one else tells me what to do or not to do.
But that is what works for me. I believe that each person has the right to do, or not to do whatever works for them.
But I also believe that it is sometimes a good idea to take advice. As you did.
Wow. That was quite the pledge you made to Joe. I certainly wouldn't be brave enough to make such a promise. I take great consideration before each outing. Weigh and measure each obstacle. Make plans to accommodate or circumvent. Determine if the outing is worth the outcome of stress, pain and "the next day" payment. There are many times I've dearly wanted to go somewhere, but couldn't. There are times I could have, but didn't because of the cost to myself and others. Like you, I am so conscious of the space, time, effort and general affect I have on others. Does my insistence of enjoyment of something cost others too much? Will it overshadow the event? Will my presence disturb the event that is about someone else? Yes, all carefully weighed. I admit, I have gone out and done things at the urging and cajoling of my partner and have regretted it. I have realized it is better to disappoint at home then get out and about and disappoint then. And as pointed out, as I age, my scales change. Often the spirit is willing but the body is too weak.
I think this was spot on. It was actually just what I needed to hear this morning. My disability is blindness. My husband has mental health issues. There are times, a lot of them, when he doesn't want to go out and do something that I'd really like to do. I'm completely capable of going myself, but I often don't. It's more work to arrange transportation or I'll have to ask directions to the restroom or what if I get lost or...I can dream up a lot of excuses. In the end though, that's just what they are excuses. Sure, it takes more effort for me to go someplace by myself, at least someplace new, but that's not a reason to not go. I think the tough part is recognizing the difference between excuses and actual concerns.
Hi all, I'm so glad that I didn't change the post and left it for discussion. I have been really helped by what people have said, and the spirit in which it was said. Thank you all so much.
Well, I'm late as always but I'm still going to open my yap.
I live alone. I don't have a Joe. Or a Joe-substitute. :-) If I fall, there's nobody to help me back up. If I get stuck because of something breaking, a sudden roadblock, or other unexpected surprise, there's nobody that's going to help. I don't have any friends nearby. In a disaster there's nobody within a 3 hour distance I can call for help.
This keeps me housebound more than I'd like to admit. It's the middle of winter. My apartment has a deck out front with no guiderail. I cannot get outside as long as there as ice or snow that might make me fall. I can't use the scooter at all in this weather, and the cane can only do so much. Last winter I was shut in for nearly 4 months. This winter, well, we'll see.
But even in the summer I get hesitant. What if something happens? What if I get stuck? What if the scooter breaks down? What if I try to walk only its farther than I can go?
The worst part is not knowing which is reality, based on past experiences, and which is just overblown paranoia and anxiety. I don't have a Joe Substitute there to lend a hand if I'm right. And if I'm wrong, I'm missing out on life for no reason.
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