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Advocacy aspirations

I've talked about how I hate to make mistakes, and commonly let it get in my way. I've recently wondered if this is making me into an awful advocate. I mean, I attempt to advocate, though a lot of times, I don't do a very good job. If it's just me, I feel fine, and can talk to professors, and even school officials if need be. I'm happy to make reasonable requests, and if I notice problems, I try to bring them up courteously. But recently, I've wondered if I'm doing things right. I.E., can I really make a difference? Am I doing anything good, or making things worse for everyone? I'm always afraid that something I do will set things back light years for people with disabilities. I'm always afraid, for example, that I will do an inadequate job of educating people about RSD and chronic pain in general. I want to make things easier for others, and help pave the way for others so that they can have a smoother experience in life. I want to increase equality for all people. In short, I want to change the world, or at least change something for the better.

But that really makes me nervous. What if I fail? Will I make things worse for others who come after me? Will people think Man, that weird/mean/insert-not-so-nice-adjective girl really didn't know what she was talking about. Then, will they be less receptive for others with disabilities or chronic pain?

It's not even that I go into situations wondering about advocating all of the time. It's afterwards, when I analyze situations and wonder "Did I do that right?" I look at the actions of others, and I wonder if I will ever have the skills to make that impact.

And then, some days, I have my head together. I realize that no one is perfect. I realize that I might make big mistakes, but that isn't always the end of the world. I realize that, in general, people are fine with advocacy efforts if good communication is used. I realize that not all efforts are successful, but many are. I start to realize that perfection is really a myth. I should strive for the best, not the perfect.

I'm realizing that advocacy is a process. I'm trying to get involved at some level, even if it's just trying to make others aware of issues. I'm watching how others advocate, and starting to realize that advocacy probably isn't spelled with a capital A. Most importantly, I'm realizing that advocacy can be built out of hope and faith that things can and will get better.

It's hope that causes me to write about struggles and ideas that I think are important. It was hope that caused many of the petitions and advocacy efforts I watched this past year. It's hope that lets me make suggestions to people at school. And it's hope that makes me want to learn how to be a better advocate. I'm hoping that there can be better tomorrows, and that maybe I can have a small part in them.

I've heard the theory that hope and fear are somewhat of oposites of each other, but can exist in a person at the same time. I think that's true here, as well. The fear of doing the wrong thing, and messing up things for others must be balanced out with the hope that things can get better and that good communication and respect between people can make a difference. The fear that I will fail must be overcome by the hope of success. It's just my theory, but I hope I'm onto something.


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Oct. 29th, 2006 01:21 am (UTC)
thoughts on advocacy

First, don't try to change the world. It won't be possible. It's quite enough to do what you can--and that's something you really can't fail at.

Now the important stuff... I've learned (sometimes the hard way) that the important thing is to remember and communicate that the way I do and need things is not necessarily the way that someone else does and needs things. So when I advocate, I advocate for my needs because that's what I know; and I tack on something in addition: a note that the next person coming along may need something completely different so please ask about his/her needs at that time.

Finally, don't make yourself responsible for teaching the world about RSD. It's enough to teach the people you come in contact about your experience with it. There is a vast difference, and it takes a huge amount of stress off of you to give yourself permission to not have to be the RSD poster child. *smile* One of the best things I have done over the years has actually been dropping some of my efforts at creating the all-inclusive reservoir of info on this and that condition and learning how to communicate well instead. This has enabled me to see what it is people are saying when they're talking to me and what I want to say back, and if I don't have an answer to a question I'm very willing/able to look it up. With my university, which has relatively little in the way of disability resources, I can say that the best policy is not trying to be prepared for every circumstance but having some basics in place and being open to additional requests for accommodations and creating an environment that is hospitable for self-disclosure. Use your experiences as examples to open their eyes and encourage them to learn and think outside the box. People with other health conditions probably need some accommodations, too. You're not in a position to know that; but if you're open about your experiences, you may find yourself in dialogue with other students who can help you with advocacy (e.g. students with arthritis, migraines, fibromyalgia, and other chronic pain syndromes).

Hope this helps. Don't try to do this alone. [hugs]
Oct. 30th, 2006 08:29 pm (UTC)
Re: thoughts on advocacy
You make some great points. I've wondered about other students on campus with other chronic pain syndromes, and right now I'm trying to get either formal or informal groups of students together to share tips and tricks and lend support.

I really appreciate your feedback, and when I'm feeling less foggy, I'll try to remember to respond more thorroughly to your comments. They are excellent!
Oct. 31st, 2006 05:31 am (UTC)
You know, I think too many times we look at this whole accomidation (never can spell that without spellcheck) thing wrong. I think we need to adopt this attitude:

I have a problem, and I need you to help me solve it...and here's how we can work on it together.

Now, what you need to solve the problem may be different than what I need, but that's OK because you are a unique individual, and your disability is different from mine. I think approaching every situation on a case-by-case basis and trying to calmly and politely work through things is the best approach.

Unfortunately, the world isn't a nice place, and there are people who will be difficult--even if all you ask is that they let you take their class or identify themselves in a room. In some respects, I'm oversimplifing, but my point is that you can't worry about what will happen later--you have to fight to get what you need, hopefully it's a matter of politely asking, accepting, compromising, and working it out. You will impact the world, although it's very possible you'll never know how.

Case in point: I made a smart remark to a friend 10-15 years ago--we were at a lake and talking about knee-boarding. I longed to be one of the group and do it, too. My friend was goofing around and talking and acting like it was no big deal--he needed a challenge: so I challenged him. I told him, "You do it with your eyes closed, then tell me how." We were just doing our usual banter back and forth with each other--and I wasn't even really thinking about it--in fact, I'd totally forgotten I'd made that comment--until a couple of weeks ago, when a man at a church where I was visiting asked me if I was the little girl that made the comment. Apparently that impressed him because I had courage to get out there and do stuff. Normally, I cringe at comments like that, but it reminded me that people are always watching, and we're the only Jesus some people see--so it's important to do what we feel is right, work hard to upold our own convictions, and help others where we can. The final thing I want to say is that no matter how hard you try, the truth is that some people don't want to be helped--they want it handed to them...so you have to bare in mind that somewhere, somehow, no matter what you do, somebody will have a problem with it. Please yourself, second, God first, and the rest is no big deal.
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