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More a social issue than a political one, but here goes...
Several of my friends, and other fine people who would like to be my friends, are much more involved than I in the disability rights movement. They often invite me to events and information days that I could benefit from, but I rarely go because I'm not, as the young people say, feelin' it. Is it bad to want to spend my time and energy being me rather than a perpetually outraged spokesman for a 'community' (whatever that means) that I respect, but have very little passion to be a part of?
I can't find it in me to get upset or angry about issues that stoke the fire in my fellows' bellies and turn them into fighters. I tend either to shrug these things off and get on with what I want to do or look for a quiet alternative. Yes that's selfish, but I think it's better to opt out altogether than pay lip service to something I'm not really committed to. I am no parade marcher, placard waver or crusader. Just a would-be humanities academic who'd rather hide away from the world than make a big ol' noise about changing it.
Culturally, I like to think disability is the last great social invisibility. Now we're super aware of things like racism, sexism and LGBT issues, and many are being taken to task for their attitudes and behaviour, people living with disabilities deserve a slice of the equality pie too. At times I feel I should do more to ensure we get one, then I worry about going through the motions and hinder the cause more than helping it.
Just yesterday I was invited to speak with a group about my life and experiences. As a last minute replacement for someone who had to drop out for family reasons, I had no time to prepare and couldn't tell you a thing I said. It seemed to go over well (give me a spotlight and I'll strut, darlings) and I got a lot of favourable comments from people there who took the whole thing more seriously than I did, but I'm sure they would have done better.
I'm gratified that people I should consider 'my tribe' are so keen to welcome me as one of their own, but I tend to hover around the edges (as I do with every group I've been involved with) because I don't feel I have much to offer. I can't tell if I'm letting the side down or doing them a favour.
Totally cool.
My daughter is disabled and made the decision to "be herself" - even to the point of not corresponding with others that have the condition.
She is doing her part by showing others her strengths (even raising a child) and having a happy marriage and she is also doing some clinical trials (and did some before)....
You can only do what you can do. Be yourself. Get pleasure out of life while you can. The best love is love of life.
We may feel passionate about something that we want to advocate strongly or even more than one thing. But our needs and our passions change. You cannot force yourself to become passionate about something. Sometimes, we just need a rest. My suggestion is to give yourself a break for a while. Withdraw from the group for 6 months or a year, or whatever feels right. Tell your friends you need to regroup around that topic and see what is right for your life. And don't let people beg you to do something that isn't right for you. If you give this topic a rest, you may come back to it or you may move on to something else. There are plenty of good causes in the world to work on. Make sure you are doing something that is meaningful for you, and at a level of involvement that doesn't burn you out.
Totally cool.
My daughter is disabled and made the decision to "be herself" - even to the point of not corresponding with others that have the condition.
She is doing her part by showing others her strengths (even raising a child) and having a happy marriage and she is also doing some clinical trials (and did some before)....
You can only do what you can do. Be yourself. Get pleasure out of life while you can. The best love is love of life.
i agree, OP you have to be who YOU are, not what others want you to be. when you try to force yourself to be something you are not, you tend to become miserable, and that has a negative affect on the people around you. do what you can to help others in ways you feel comfortable doing, maybe even push your limits from time to time. but ALWAYS be who YOU are.
craigiri and i for instance disagree on a lot of things politically, and that is cool as i hold no animosity towards her. we are just two different kinds of people.
My wife is severely disabled, and my life's work is with the disabled. I live it and breathe it every single day, and what I have to say to you is - don't worry about it for a minute. If (as you say) you ain't feelin' it, then you just ain't feelin' it. If you were our friend, neither of us would for so much as a second look down on you or think you were some sort of traitor to some sort of cause. In fact, we'd probably find being around you a refreshing break.
Be who you are and follow your own heart, not someone else's.
In a way you could say I'm representin' (yo!) by researching and writing about horror fiction and film from a disabled perspective, once I figure out what that means. I've loved this genre ever since I can remember because I see myself arm in claw with the monsters, the outsiders, the others and the freaks. Rather than beg for acceptance and cry if I don't get it, those labels and others like them are what distinguish and define me. They're badges of honour I'll wear until the day I die.
You want to be recognised and treated like everyone else? God love you. I'm too busy being me, and hopefully challenging people's assumptions and thinking while I do so. Whatever form my work takes, creative, academic or both, it will live on long after me and hopefully encourage people down a similar path.
The one time I get an attack of the guilts is when I remember that the efforts of groups like the one I met yesterday have made it possible for me to do my thing and I feel I should give something back. After my little speech I got talking to someone who asked if I was involved with a local disability-focused party. Her face visibly fell when I told her I'm not a political animal, but better to be honest with her than tell her what she wanted to hear.
If ever the day comes when stem cell treatments for cerebral palsy need volunteers, best believe I'll be all over that like white on rice. Especially if they cause mutations and give me awesome super powers .
You want to be recognised and treated like everyone else?
my advice is to try and treat everyone like you want to be treated. you are going to run into people that treat everyone like crap because they can, so try to ignore those people.
I don't give a rats *** about the problems of some other group.
Hopefully the feeling is reciprocated by people when it comes to whatever group you consider yourself a part of.
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