We are not all created equal; some of us need more help than others
Been thinking a lot--well, more than usual--about discrimination and bigotry and other such things lately. Most of this has to do with the controversy around the HBO show "Girls" which is pretty much self-deprecation porn for pampered, white urban hipsters. (See my quasi-legit blog for more babble on that.)
Have also been thinking about my own stuff on this. I tend to focus mostly on the three big things--size, orientation, gender--I get the most crap for, but there's really quite a lot of other stuff, too.
In particular, I've been thinking more about my various health crap, and reconsidering whether I need to think of myself as someone with disabilities. I've avoided that concept for a long time, because I've always thought it was presumptuous to think of my "minor" issues that way when others suffer so much more, but ... dang. I really do have one hell of a laundry list of stuff that gets in the way of having a normal life. I've managed quite a lot of it, and am considerably more capable now than I was 10 years ago, but I still do have some very real limitations. Now that I'm wearing hearing aids (as of yesterday's fitting for them) there's one more to add.
After a day of wearing these things, I realized exactly how bad my hearing really is--how much I was missing before. Without them now, it honestly is like having cotton in my ears. Everything's muffled and I can't get details at all at higher pitches. And that's just one thing. I also need help seeing, breathing, thinking, sleeping, digesting food ... not to mention the anemia and vitamin D stuff, the hormone stuff, my physical mobility issues, constant sinus headaches, the ADD and depression ... all that fuckery that I have to work around, every single day. That I've managed to do so well enough to get two college degrees, hold down a full-time job and write two novels, much less all the other stuff I've done, is actually kind of amazing. I think I don't give myself enough credit for that, because I don't take my health issues as seriously as maybe I should.
Taken on their own, each one of those things isn't a signficiant limitation--certainly not as much as what most folks usually think of with the word "disability,"--but in that kind of combination? Yeah. Maybe it's time to rethink. Changing my own perspective on this might not make my life easier, nor make other people have more consideration for my limitations, but I might at least stop being upset at myself for not being more physically capable than I am.
Something else to think about is that because those various things aren't what people normally think of as disabilities, there isn't nearly the same level of public support. I may not need accomodations as elaborate or often as others, but I do need some things, and most of the time, they're just not there. I most certainly don't grudge the help that people with more serious afflictions need and get. I just wish it were easier to get the help I need, too. Knowing you have a net there to catch you if you fall makes walking the tightrope a heck of a lot easier. When you don't have that net, or aren't sure if it'll be there? You're far less likely to even take those steps. It took me years, for instance, to be able to go back to school and work full-time again because I didn't have the kinds of treatment and support I needed to allow me to do that. I'd also have become a parent sooner had I had more treatment options for some things, so I felt confident in my ability to manage it.
Some of my issues simply can't be worked around at all, and that's just how things have to be. But there are other things that I'd be a lot more likely to do--or do more often--if I knew I'd be able to. Something as simple as being able to get more than a 30-day supply of my ADD meds at one time would open up a lot of travel options for me. Likewise with knowing I had affordable options for airplane seats that fit me. I don't give a crap about first-class ass-kissing service. I just need a bigger seat so I don't lose circulation in my legs on long flights. Having to pay four times the cost of a coach seat just for that is ridiculous.
And there are a ton of other little things, too. Convenient places to sit and rest in large spaces. Flexible work hours and locations so I can take an afternoon off when I need to when my head's exploding, or have a quiet workspace without a chatty officemate distracting me from my work. But I just can't ask for that, because my problems, individually, aren't serious enough that people understand them, and understand what kind of accomodations I need.
Perfect example:
A UK friend on FB today mentioned how she was angry that people have to show visible disability to qualify for a particular accomodation. It reminded me of the hell I had to go through when I was in school, and had issues with parking and getting properly sized classroom seating.
In order to qualify for any sort of assistance in terms of better parking or classroom accomodation, I first had to qualify as disabled by the state criteria used to grant parking permits. Those criteria, however, were drawn up with a very narrow set of conditions in mind: people who need the extra space in a parking lot to maneuver a wheelchair, or who are otherwise unable to walk very far to get into a building. The base criteria, for instance, was that one needed a doctor's note stating that one couldn't walk more than 200 feet without stopping to rest. I can do that! What I couldn't do was walk 200 YARDS, uphill and over rough terrain, to get from the student parking lots to my building. On rare occasion, when I have a good day, I can manage that sort of thing. But most of the time, I simply can't do it. So, since I didn't qualify for any other sort of parking accomodation, I instead just usually parked in the staff lots, and ate the cost of the tickets I got (which ended up being well over $1,000, and also included a nasty letter from the parking office, by the time it was all done.)
It sucks that there are so many areas in which people can fall through the cracks. If you're able to help yourself even a little, people assume you don't need any help at all, and that's just not right. You shouldn't have to be completely fucked in life in order for people to want to help you. Of course the people who are completely fucked need help, but so do people whose fuckedness isn't entirely complete. Someone earning minimum wage still needs help to get by even though they have a job. Just being able to stand and move your legs doesn't mean you can climb eight flights of stairs to get to a workplace.
I realize that if I start thinking of myself as a person with disabilities, there may be people with more serious ones who think I'm being obnoxious about it. But I suspect the reason they'd think that is that they've come to believe that justice and aid are limited commodities, and therefore only the people who need them the most ought to be helped.
But I don't think that's the case. In terms of how we manage social services budgets, for instance, yes, we need that kind of triage. But the reason that's so fucked is because the people holding the purse strings have for decades tried to convince us that unless you're entirely incapable of caring for yourself, you can do your own bootstrapping. Our concept of charity is completely bass-ackwards. We give handouts to the people who are in desperate need, and then don't actually do the hand-UP aid necessary to help people help themselves. Somehow, the teaching a man to fish principle has been completely lost, and our culture only supports those who have their own fishing fleets and those who can't even hold a rod. That's so incredibly broken.
It unnerves me that I'm so conflicted about thinking about myself this way. I've obviously been pickled by the same poisoned brine as the people who would deny me help. But I can't exactly expect them to change their minds about me if I don't change my mind about myself. Maybe if I stop expecting myself to do things at the same level as people who don't have my limitations, I'll become more confident about asking others not to have the same expectations of me.
Have also been thinking about my own stuff on this. I tend to focus mostly on the three big things--size, orientation, gender--I get the most crap for, but there's really quite a lot of other stuff, too.
In particular, I've been thinking more about my various health crap, and reconsidering whether I need to think of myself as someone with disabilities. I've avoided that concept for a long time, because I've always thought it was presumptuous to think of my "minor" issues that way when others suffer so much more, but ... dang. I really do have one hell of a laundry list of stuff that gets in the way of having a normal life. I've managed quite a lot of it, and am considerably more capable now than I was 10 years ago, but I still do have some very real limitations. Now that I'm wearing hearing aids (as of yesterday's fitting for them) there's one more to add.
After a day of wearing these things, I realized exactly how bad my hearing really is--how much I was missing before. Without them now, it honestly is like having cotton in my ears. Everything's muffled and I can't get details at all at higher pitches. And that's just one thing. I also need help seeing, breathing, thinking, sleeping, digesting food ... not to mention the anemia and vitamin D stuff, the hormone stuff, my physical mobility issues, constant sinus headaches, the ADD and depression ... all that fuckery that I have to work around, every single day. That I've managed to do so well enough to get two college degrees, hold down a full-time job and write two novels, much less all the other stuff I've done, is actually kind of amazing. I think I don't give myself enough credit for that, because I don't take my health issues as seriously as maybe I should.
Taken on their own, each one of those things isn't a signficiant limitation--certainly not as much as what most folks usually think of with the word "disability,"--but in that kind of combination? Yeah. Maybe it's time to rethink. Changing my own perspective on this might not make my life easier, nor make other people have more consideration for my limitations, but I might at least stop being upset at myself for not being more physically capable than I am.
Something else to think about is that because those various things aren't what people normally think of as disabilities, there isn't nearly the same level of public support. I may not need accomodations as elaborate or often as others, but I do need some things, and most of the time, they're just not there. I most certainly don't grudge the help that people with more serious afflictions need and get. I just wish it were easier to get the help I need, too. Knowing you have a net there to catch you if you fall makes walking the tightrope a heck of a lot easier. When you don't have that net, or aren't sure if it'll be there? You're far less likely to even take those steps. It took me years, for instance, to be able to go back to school and work full-time again because I didn't have the kinds of treatment and support I needed to allow me to do that. I'd also have become a parent sooner had I had more treatment options for some things, so I felt confident in my ability to manage it.
Some of my issues simply can't be worked around at all, and that's just how things have to be. But there are other things that I'd be a lot more likely to do--or do more often--if I knew I'd be able to. Something as simple as being able to get more than a 30-day supply of my ADD meds at one time would open up a lot of travel options for me. Likewise with knowing I had affordable options for airplane seats that fit me. I don't give a crap about first-class ass-kissing service. I just need a bigger seat so I don't lose circulation in my legs on long flights. Having to pay four times the cost of a coach seat just for that is ridiculous.
And there are a ton of other little things, too. Convenient places to sit and rest in large spaces. Flexible work hours and locations so I can take an afternoon off when I need to when my head's exploding, or have a quiet workspace without a chatty officemate distracting me from my work. But I just can't ask for that, because my problems, individually, aren't serious enough that people understand them, and understand what kind of accomodations I need.
Perfect example:
A UK friend on FB today mentioned how she was angry that people have to show visible disability to qualify for a particular accomodation. It reminded me of the hell I had to go through when I was in school, and had issues with parking and getting properly sized classroom seating.
In order to qualify for any sort of assistance in terms of better parking or classroom accomodation, I first had to qualify as disabled by the state criteria used to grant parking permits. Those criteria, however, were drawn up with a very narrow set of conditions in mind: people who need the extra space in a parking lot to maneuver a wheelchair, or who are otherwise unable to walk very far to get into a building. The base criteria, for instance, was that one needed a doctor's note stating that one couldn't walk more than 200 feet without stopping to rest. I can do that! What I couldn't do was walk 200 YARDS, uphill and over rough terrain, to get from the student parking lots to my building. On rare occasion, when I have a good day, I can manage that sort of thing. But most of the time, I simply can't do it. So, since I didn't qualify for any other sort of parking accomodation, I instead just usually parked in the staff lots, and ate the cost of the tickets I got (which ended up being well over $1,000, and also included a nasty letter from the parking office, by the time it was all done.)
It sucks that there are so many areas in which people can fall through the cracks. If you're able to help yourself even a little, people assume you don't need any help at all, and that's just not right. You shouldn't have to be completely fucked in life in order for people to want to help you. Of course the people who are completely fucked need help, but so do people whose fuckedness isn't entirely complete. Someone earning minimum wage still needs help to get by even though they have a job. Just being able to stand and move your legs doesn't mean you can climb eight flights of stairs to get to a workplace.
I realize that if I start thinking of myself as a person with disabilities, there may be people with more serious ones who think I'm being obnoxious about it. But I suspect the reason they'd think that is that they've come to believe that justice and aid are limited commodities, and therefore only the people who need them the most ought to be helped.
But I don't think that's the case. In terms of how we manage social services budgets, for instance, yes, we need that kind of triage. But the reason that's so fucked is because the people holding the purse strings have for decades tried to convince us that unless you're entirely incapable of caring for yourself, you can do your own bootstrapping. Our concept of charity is completely bass-ackwards. We give handouts to the people who are in desperate need, and then don't actually do the hand-UP aid necessary to help people help themselves. Somehow, the teaching a man to fish principle has been completely lost, and our culture only supports those who have their own fishing fleets and those who can't even hold a rod. That's so incredibly broken.
It unnerves me that I'm so conflicted about thinking about myself this way. I've obviously been pickled by the same poisoned brine as the people who would deny me help. But I can't exactly expect them to change their minds about me if I don't change my mind about myself. Maybe if I stop expecting myself to do things at the same level as people who don't have my limitations, I'll become more confident about asking others not to have the same expectations of me.