Tomorrow we leave for Chicago. A bunch of us from Vita Community Living Services will be on our way to the Disability Pride parade - we've booked to be in the parade and march proudly both those with disabilities and those who support people with disabilities. A few weeks ago we all met, the eight of us going, and talked about the trip and the arrangements.
During that discussion we talked about what pride meant. We talked about why it was important to feel pride in oneself and pride in one's membership in a community as diverse and as vibrant as the disability community. We talked about how others might see people with disabilities as less and how we don't need to let other's diminish who we are. We talked about our rights to be treated with respect for who we are, not in spite of who we are.
This represented the first real, without question, no holds barred, discussion I have ever had with people with intellectual disabilities about pride and membership, about identity and about belonging. I've lectured on this to large groups of people with disabilities but never had the opportunity for a face to face talk about what it means to finally 'be' who you 'are' and to 'be who you are' with 'pride.'
As always people with intellectual disabilities, when given an opportunity think about selfhood and belonging, were very, very astute in their observations. They recognized prejudice for what it was. And as they did so the excitement began to build. We are going to march. We are going to declare our pride and our membership in the disability community.
We are going to let the world know that though disability may define our community and our membership in it doesn't confine us to stereotype or leave us bound to failure.
So, at 7:30 tomorrow, we head out.
Chicago, here we come!!
You're coming to my city! I wish I could go to the parade, but unfortunately I have a commitment on Saturday morning. I hope my fellow Chicagoans are welcoming and awesome to you.
I am disabled - more than one - one visible and two invisible to most folks. I use aids and need assistance from time to time. I have No pride nor do I wish membership in the disability community.
I mourn the loss of my abilities every day because they affect me and those I love everyday. I can't make a living from it. My world grows smaller and smaller and dimmer and dimmer. There are no awards on my bookshelf.
Sorry - the price of membership has been way too high for me.
In the spirit and joy of Pride I send you all great wishes for safe travel and indeed, "Make a mark on the parade!!!" Disability Pride in full effect..Chicago style!!!
Be sure to eat some Chicago pizza....unique and yummy...
I was going to say something positive about the march and involvement in it but, then I read anonymous comment. It makes me sad and distressed that this person is alone. Now I don't know what to say.
Dear Anonymous above:
I wish I knew what to say. I'm sorry this struggle has been so difficult and lonely for you.
I am making the guess that at least one of your disabilities is either relatively new (less than five years), or is progressive over time, or else involves tremendous amounts of pain and/or fatigue. Any of these can make a disability more difficult to cope with. From what you say about your world getting smaller and dimmer, I'm guessing at least #2 applies.
Many people newer to disability (or to a new stage of an older, evolving condition) do eventually find their attitude changes over time as they discover new ways to do old things, or learn to be content with discarding older activities because they have been able to develop an interest in other activities that now occupy their time. The way family/friends respond over time may also change, e.g. people in denial (who can make it harder to cope by refusing to accept you need certain accommodations) may learn to be more supportive. Support systems for you and family not available in earlier stages may kick in, or be discovered, at later stages (though I realize sometimes support systems can be taken away for fiscal or other reasons). It also helps for some to build stronger networks of contacts, friends, allies, "listening ears" etc. within the disability community among people who know what you're going through--and what can be done to cope. I am hoping that one or more of these will eventually help you deal better with your circumstances.
But whatever your situation: from my own view "disability pride" is not really meant to be about saying, "Yay, I'm in pain and always tired and can't do X Y and Z and I'm proud!" If that's how it comes across, I can see how this does not appeal. But I don't see "disability pride" from that perspective. It's really meant to be a counter to the way that the rest of society tries to shame us for having disabilities: Some people in society think that if we have bodies, neurology, psychologies etc. DIFFERENT from theirs that these are inherently inferior and shameful. And I see disability pride as a way to counter that, to say, "Yes, it's true that my body (or neurology or both) does not do X Y or Z, but it can still do A B and C. And even it if didn't do A B or C either, *I* as a person would still have VALUE. *I* still matter, my happiness and care still MATTER. Being disabled may still limit some of the things I *do* but does not limit my worth as a person"
It can also be a way of recognizing "gifts" that can sometimes come with disability. For example, for me as a Deaf person, I value being a member of a larger Deaf community that has our own language. As a person with attention deficit disorder, I do find it frustrating and difficult to deal with many of the associated symptoms (difficulty concentrating, difficulty managing tasks such as paying bills in a timely manner, etc.) but I also value my ability to be abundantly creative--which is partly a consequence of the attention deficit disorder. There are many ADD symptoms I would LOVE to give up, but I would hate the lose the creativity with them. Some people whose disabilities has caused them to have quieter lives find they eventually come to value having more "quiet" time to focus on certain things at a slower pace and may see it as liberating to give up being as busy and overwhelmed as they might have been before. (Though others, of course, may respond quite differently). For people who find that disability has brought positive things AS WELL AS the negative, "disability pride" can be a way of embracing these--this does not have to mean erasing the not so great side of disability, but rather to ensure that the positive does not get lost in the big picture either.
I don't know if any of this helps, though I hope it does.
Just want to add to what the second Anon poster said. Disability in and of it self sucks!!! There is nothing nice about having to move slower or to loose abilities. I think it's important to acknowledge that it's different for a lot of born into this community versus those thrust into it suddenly. I don't mourn abilities I have never had( except the driving thing... that I mourn tho I've never driven) I will say this though it is very easy to get bogged down in the well gee I can't do this that or this other thing... the way others do it. Therefore why bother to do anything at all. Some days it is all I can do to get up take a shower and keep moving... some days who wants to go out into the world and educate others or fight for access or just deal with people.
To not acknowledge that depression on some days feels dishonest. BUT and it's a big but it's important I think to remember that our attitudes about ourselves and our differing abilities play a huge role in how others see us. No one is paying a price in my opinion to belong because the community should be about helping each other get what we each need. Even if on a given day what we need is someone to say I'm sorry that sucks and I'm here for you if you need a hug or a shoulder or just someone to listen! Why see the community as a negative when support which is what we all need no matter who we are can be such a positive. No disrespect to poster #2 because I know that really is how you feel. I think we all have those moments or months or years. I just hate to see anyone feeling so alone. Cause you are not alone. People here will listen and support you if you want us to, and if you just want us to let you vent we can do that too
Ill be with you in spirit.
Thank you to all who responded to my posting (#2). I could explain further - but this blog is not about me. I do rejoice in those who rise above. (I appreciate your support.)
Disability pride is about celebrating the advances and successes in the civil liberties movement for people with disabilities. As a community, as disparate as we are diverse, we have much to be proud of. The advances we have made are huge, the obstacles placed in our way enormous. Taking a moment in the course of a year to acknowledge the battles won and fuel up for the battles yet to come is important. I, like Anon 1, have dark times and dark days where frustrations mire me in anger. In those days I see my disability as a curse. Who doesn't? However I am very aware of the fact that if it hadn't been for the disability community I'd be living in an institution, I'd have lost my freedom and the idea of others loving me would be a fantasy. There were those who fought for my freedom. I owe them thanks, I am proud to be part of a community that has made it possible for me to live in my own home and pee in my own loo. I can never go to Chicago. I will never be in that parade. But Dave, take some of me with you.
Helen, I wrote today's blog before reading your comment. We were on the same wavelength. I will take you with me, I promise, that at least once, I will mention your name at the parade to someone there. How's that.
Anonymous 1, you say in your second comment that this is not your blog so you choose not to say more. I welcome you to tell your story here, this is a terrific and supportive community, though we may not be able to do much, we may be able to provide a forum where you can feel less alone.
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