I wanted to thank all the commenters who have left me encouraging notes, and everyone who chimed in to the discussions over the past couple days. You can really tell when you struck that tuning fork just right, because everybody comes out to talk about it :)
There were also more than a couple people who expressed surprise/relief to find people who are facing the same issues they face every day. I wanted to encourage you all to keep talking about these things.
I started my blog mainly because our experiences are kept in the dark like this so often. It is considered inappropriate to discuss certain experiences, and pretty much anything involving disability falls into that column. It is a “private” matter. And even where it isn’t necessarily considered inappropriate, sometimes it seems out of place, talking openly about such personal things when most of the conversation focuses on the abstract, the theoretical.
Remember: the personal is political.
The more we speak up about our experiences, the more people we find who have gone through the same thing, and the more we can learn from each other, and discover exactly how common some of those experiences are — and thus, understand that those experiences are not our own personal failures, but the result of a society-wide approach to the issues we face.
And the more we speak up, the more other people, who don’t share those experiences, hear. The more information they have, straight from the people affected, rather than the (very limited) mainstream conversation that tends to exclude those people de facto. And thus the better understanding we can all form about these issues.
You are not obligated to speak. You can share exactly as much as you are comfortable sharing. But to those people who feel relief upon meeting another person who understands all of those “private” things that weren’t “relevant” to the conversation before: Speak up. I want to hear you. Start a blog. Comment on other people’s blogs. Make no secret of your day to day, minute-to-minute experiences, even when speaking with people in “real life.”
Don’t consider your condition a secret, or a severely personal matter, which doesn’t affect anyone else, and therefore interests no one else. Because a lot of us are interested. And their issues affect you. Don’t let that street stay one-way.
There are understandable circumstances where one would not want to be so open. I am trying to keep my disabilities as hidden as possible while searching and interviewing for jobs. Maybe a family member has a thing about the subject and you don’t want to rehash things over and over again. Maybe another person reacts negatively, or you sense that they would, and you don’t feel like dealing with that. That is all perfectly fine. But the oath of secrecy we are all made to take seems to extend to situations far, far beyond these. And I want to break down those barriers.
I don’t think I’ve ever felt so satisfied in my life as when people step of the Google bus, or a link from another site, or whatever, to read my writing, and write to say that they have gone through the same thing and they had never heard anyone talk about it openly before. It gives me hope.
There are people out there right now who are going through the same things you face, every single day. And a lot of those people have no idea that there are other people out there going through those same things. Because we’re taught not to talk about it.
But maybe, if you talk about it, one of them will hear you. And their life will be a little bit easier, knowing that they aren’t the only ones.
Start talking.
hello,
I used to be a daily reader of this blog during the school year. But as summer came around I wasn’t around computers as much and lost the habit of reading blogs daily. So i’m a bit out of touch of what comments were made by your readers and what your disability may be.
anyway this was just an inspiring blog that made it clear to me why the world of blogging is so powerful. I just discovered this world this past year, and a friend and I decided to start our own (http://robotdoves.blogspot.com– but we have no readers haha) and I quickly became addicted to blogs, not sure why I was so engaged to this world of online journals. Than I realized how how I was going through many of my internal struggles, (healing from child sexual abuse) I struggled to find a safe space in my own environment (on my college campus) where I felt there were others that matched my struggle or outlook on life, and that it is comforting to know that when I think I’m the only one that has uncontrollable anger everytime I hear a song being mainstreamed on the radio, or see a disgusting music video, it’s not because I’m overly sensitive and crazy, (I know my reactions aren’t constructive) but it’s just comforting to know that there are others out there who feel the same, and blogging has brought that to me! anyway this is an extremely long comment. sorry about that! but I just wanted to say that when you know something brings something positive to your life, but you don’t know why, it’s not as good as knowing why. and after reading this, now i know why!=)
best of luck!,
<3olives
Thank you, Amandaw.
I try very hard to continually tell stories of Don’s life, and how my life is affected by his disability. I’ve had a lot of people who read me for various reasons have those lightbulb moments when I’ve talked about how difficult it was to find a flat, how my workplace doesn’t have an evac plan for people with disabilities, how just trying to afford his meds some month is out of our reach. They’ve started looking around and wondering if their homes are accessible (usually not), if their workplaces have evac plans (some do).
Don also talks about having found the Disability Blogosphere and suddenly it’s okay for him to be “sick” – he can talk about his pain without feeling like he’s a burden, he cal talk about good days and bad days and is willing to call me on my ablist priviledge when I’m being thoughtless. It’s such a difference, for both of us.
Some days I just want to scream. But I can take a break. I can go to work today and not have to deal with his pain. He can’t.
I think blogging has been very good for both of us. Neither of us feels alone anymore.
Not only is it good for the person dealing with the disability or the illness it informs those that are not. Since becoming ill and having to walk with a cane the way people interact with me is completely different. Sometimes it is beyond offensive and I often wonder if they just don’t know any better because they are misinformed and no one ever told them.
Just want to thank you for your series of posts here, amandaw. It’s clear that there is a long, long, long way to go combatting ableism both within feminism and without, and people like you are doing great work pushing the awareness.
i echo the thank you, and i add a plea to the blog mistresses to try to get you to stay on long term. it would make me “squeee” with joy.
I have not one, but five blogs. One of them I talk about my disability issues and the poverty that goes with it. You can see it at The View from the Bottom of the Shaft.