BADD -- Disability and Disablism
It's blogging against disablism day, and I thought I would mention what the fallout was from the epic walk on Sunday.
Nothing is free with my disability. I managed the seven-odd miles to, around and back from the Center, and a lot of people couldn't have done that. Most lymphedemics who have had my condition as long as I have are in wheelchairs. I have a walker.
This has nothing to do with strength or agility. It has to do with inborn flexibility--the doctors don't know why I have this, as lymphedema tends to cost patients flexibility, rather than allow it to exist--and honest-to-God terror of going back to a convalescent home...and worse, suffering the kind of pain that I used to experience.
I'm not talking aches and pains. I'm talking about a condition which, if untreated, means that the pressure of pantyhose is unbearable, that wearing shoes can feel like you're one of Cinderella's stepsisters and you're going to have to cut off your toes or your heel to make the shoe fit, that your legs swell until they're purplish-black, hard and plastic-feeling because of all the dammed-up lymphatic fluid in them. Lymphedema, in the state I was in 2005 when I was hospitalized, means pain that gets into your bones and makes it impossible for you to sleep...because lying down means that you're putting pressure on the underside of your legs, and the pain is making you sob with frustration and exhaustion. In those days, lymphedema meant having to sleep sitting up because that was the only way that I could breathe. Lying down flat was not only painful...it was suffocating.
It was a horrible, nightmarish time, and I never ever want to go through that again.
And if it did happen again, the odds are that lymphedema, or one of the complications from it, would kill me. For I am not strong. My immune system, thanks to lymphedema, is shot; I have very little to resistance to disease, and it's hard for my system to fight them off. Colds can last from three to four months. Staph infections are an enduring problem; I have MRSA in my system, and it breaks out every once in a while. There isn't much that the doctors can do, either; MRSA is antibiotic-resistant as it is, and no one wants to give it exposure to too much medicine lest it become immune to the few things than can fight it.
So I keep the legs bandaged. I elevate them when I sleep, so that the lymphatic fluid will flow down to my kidneys rather than build up in the legs. I use the pump every night, which forces the fluid toward the kidneys as well. I try to eat meals that will cleanse my system of the proteins that would otherwise build up in my legs. I stay scrupulously clean and wash clothes daily and keep the house as clean as I can, in order to minimize infection. I climb stairs and walk and do yoga to keep the leg muscles working. I lost a hundred pounds between last year and this. For a lymphedema patient (and one who went undiagnosed for about twenty years, thanks to most medical schools in America not teaching about the disease until the 1980s), I'm in good shape.
But being in good shape for someone with my illness isn't the same as being normal. I'm not. I can walk for short distances without a walker, sure. But I can't walk for more than a block without one; I need something to lean on. I can't use a cane because that puts too much pressure on one hip. It's painful, both at the time and the next few days--like having ground glass inside your bones. And I have a limited amount of stamina.
I used up a week's worth of stamina with that walk to and from the Center.
I don't regret the trip. It was fun. I enjoyed it. But it cost me two days of pain (Monday and Tuesday) and five days and nights of exhaustion (Sunday night through Thursday night), naps and early nights. I've been sleeping a LOT, as my fellow roleplayers can attest. If you're familiar with the spoon theory, I haven't had any spoons to spare.**
Which is annoying and regrettable and not at all the way I want to be. But there is a limit to what I can do about it.
It probably says something that I expected there would be pain and exhaustion--though not as much as occurred in either case--and then I went ahead and did it anyway. Because I hungered to go out on a summery spring day and have fun where I wanted, when I wanted, for as long as I wanted, without having to stop a half hour before the van was due and wait until a half hour after it was due to see if it would show up. I didn't want to wear myself out with worry over whether Dial-a-Ride would appear, or spend so much time worrying that I would be drained of strength when I found out that the van would not be showing up, after all.
None of which is about disabilism. But it is about disability and the fierce, unquenchable desire to do things that are normal without having to be dependent on others or make appointments for things that other people can do spontaneously.
Yet there were moments when I was reminded of my disability on that day. Plenty of them:
1) The doors to restaurants and stores in the town center.
In order for me to open these doors, which weigh a ton, I must stand in front of them, brace myself against the walker with one hand while I pull with all my might with the other, and, when I have the door open a crack, I must jam the walker and myself into that crack and force the door open.
No one bothered to open the doors for me. And there were plenty of people around. I was not offended; I did not expect such courtesy, so I was not disappointed by its lack. Frustrated, perhaps, but neither disappointed nor surprised.
You would think that the town, which just finished renovating the town center in January to attract new businesses, could have installed some automatic doors while they were at it, or insisted that the businesses be handicapped-accessible. For there is no way that anyone in a wheelchair could have opened any of those doors. I suspect, though, that automatic doors weren't installed because no one thought of it.
2) The sidewalks.
Most of the new sidewalks in the town center are either studded with raised circular pegs--why, I have no idea; they're hell to walk on, and they HURT--or are faux cobblestones. Neither surface is ideal for walkers or wheelchairs; the uneven-ness makes my walker tip to one side, and as for wheelchairs...I've seen people steer their wheelchairs into the street rather than deal with either the cobblestones or the pegs. The cobblestones look nice, but for my money, a nice smooth surface that would let me keep my balance would be even nicer.
3) Aisles in restaurants.
I have this bizarre conviction that the aisles in restaurants should be wide enough to accommodate a person in a walker or wheelchair and still have room to spare, and that this should be the norm. The norm should not be the current-anorexic-celebrity-of-your-choice. Oh, and when I enter the hall leading to the restrooms, my walker should NOT touch both sides of the hallway simultaneously.
(Though I must admit that Barnes & Noble, unlike the restaurant, had wonderful aisles with plenty of room on either side, and I loved that.)
None of these were major things, and yet they were irksome. People who had gone to a great deal of trouble to make an area beautiful, modern, desirable and, yes, accessible to the public, forgot completely about the disabled when planning this little shopping district.
As far as health goes, I'm not normal. But...I'd like to feel normal. I'd like to go out for a day and feel that my bad legs and my lack of strength and stamina aren't major issues. That I can walk as confidently and smoothly as someone who doesn't have a walker. That I can get into places without having jam myself into a partially open door like a salesman in a sitcom, or without throwing my whole weight against the door to open it enough so that I can get out.
I'd like to go out and see people and have fun because I want to.
Why do there have to be so many invisible signs up saying, "The disabled aren't welcome"?
**If you want to know what the spoon theory is, go here: http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf. Christine Miserandino can explain it far better than I can.
***
Nothing is free with my disability. I managed the seven-odd miles to, around and back from the Center, and a lot of people couldn't have done that. Most lymphedemics who have had my condition as long as I have are in wheelchairs. I have a walker.
This has nothing to do with strength or agility. It has to do with inborn flexibility--the doctors don't know why I have this, as lymphedema tends to cost patients flexibility, rather than allow it to exist--and honest-to-God terror of going back to a convalescent home...and worse, suffering the kind of pain that I used to experience.
I'm not talking aches and pains. I'm talking about a condition which, if untreated, means that the pressure of pantyhose is unbearable, that wearing shoes can feel like you're one of Cinderella's stepsisters and you're going to have to cut off your toes or your heel to make the shoe fit, that your legs swell until they're purplish-black, hard and plastic-feeling because of all the dammed-up lymphatic fluid in them. Lymphedema, in the state I was in 2005 when I was hospitalized, means pain that gets into your bones and makes it impossible for you to sleep...because lying down means that you're putting pressure on the underside of your legs, and the pain is making you sob with frustration and exhaustion. In those days, lymphedema meant having to sleep sitting up because that was the only way that I could breathe. Lying down flat was not only painful...it was suffocating.
It was a horrible, nightmarish time, and I never ever want to go through that again.
And if it did happen again, the odds are that lymphedema, or one of the complications from it, would kill me. For I am not strong. My immune system, thanks to lymphedema, is shot; I have very little to resistance to disease, and it's hard for my system to fight them off. Colds can last from three to four months. Staph infections are an enduring problem; I have MRSA in my system, and it breaks out every once in a while. There isn't much that the doctors can do, either; MRSA is antibiotic-resistant as it is, and no one wants to give it exposure to too much medicine lest it become immune to the few things than can fight it.
So I keep the legs bandaged. I elevate them when I sleep, so that the lymphatic fluid will flow down to my kidneys rather than build up in the legs. I use the pump every night, which forces the fluid toward the kidneys as well. I try to eat meals that will cleanse my system of the proteins that would otherwise build up in my legs. I stay scrupulously clean and wash clothes daily and keep the house as clean as I can, in order to minimize infection. I climb stairs and walk and do yoga to keep the leg muscles working. I lost a hundred pounds between last year and this. For a lymphedema patient (and one who went undiagnosed for about twenty years, thanks to most medical schools in America not teaching about the disease until the 1980s), I'm in good shape.
But being in good shape for someone with my illness isn't the same as being normal. I'm not. I can walk for short distances without a walker, sure. But I can't walk for more than a block without one; I need something to lean on. I can't use a cane because that puts too much pressure on one hip. It's painful, both at the time and the next few days--like having ground glass inside your bones. And I have a limited amount of stamina.
I used up a week's worth of stamina with that walk to and from the Center.
I don't regret the trip. It was fun. I enjoyed it. But it cost me two days of pain (Monday and Tuesday) and five days and nights of exhaustion (Sunday night through Thursday night), naps and early nights. I've been sleeping a LOT, as my fellow roleplayers can attest. If you're familiar with the spoon theory, I haven't had any spoons to spare.**
Which is annoying and regrettable and not at all the way I want to be. But there is a limit to what I can do about it.
It probably says something that I expected there would be pain and exhaustion--though not as much as occurred in either case--and then I went ahead and did it anyway. Because I hungered to go out on a summery spring day and have fun where I wanted, when I wanted, for as long as I wanted, without having to stop a half hour before the van was due and wait until a half hour after it was due to see if it would show up. I didn't want to wear myself out with worry over whether Dial-a-Ride would appear, or spend so much time worrying that I would be drained of strength when I found out that the van would not be showing up, after all.
None of which is about disabilism. But it is about disability and the fierce, unquenchable desire to do things that are normal without having to be dependent on others or make appointments for things that other people can do spontaneously.
Yet there were moments when I was reminded of my disability on that day. Plenty of them:
1) The doors to restaurants and stores in the town center.
In order for me to open these doors, which weigh a ton, I must stand in front of them, brace myself against the walker with one hand while I pull with all my might with the other, and, when I have the door open a crack, I must jam the walker and myself into that crack and force the door open.
No one bothered to open the doors for me. And there were plenty of people around. I was not offended; I did not expect such courtesy, so I was not disappointed by its lack. Frustrated, perhaps, but neither disappointed nor surprised.
You would think that the town, which just finished renovating the town center in January to attract new businesses, could have installed some automatic doors while they were at it, or insisted that the businesses be handicapped-accessible. For there is no way that anyone in a wheelchair could have opened any of those doors. I suspect, though, that automatic doors weren't installed because no one thought of it.
2) The sidewalks.
Most of the new sidewalks in the town center are either studded with raised circular pegs--why, I have no idea; they're hell to walk on, and they HURT--or are faux cobblestones. Neither surface is ideal for walkers or wheelchairs; the uneven-ness makes my walker tip to one side, and as for wheelchairs...I've seen people steer their wheelchairs into the street rather than deal with either the cobblestones or the pegs. The cobblestones look nice, but for my money, a nice smooth surface that would let me keep my balance would be even nicer.
3) Aisles in restaurants.
I have this bizarre conviction that the aisles in restaurants should be wide enough to accommodate a person in a walker or wheelchair and still have room to spare, and that this should be the norm. The norm should not be the current-anorexic-celebrity-of-your-choice. Oh, and when I enter the hall leading to the restrooms, my walker should NOT touch both sides of the hallway simultaneously.
(Though I must admit that Barnes & Noble, unlike the restaurant, had wonderful aisles with plenty of room on either side, and I loved that.)
None of these were major things, and yet they were irksome. People who had gone to a great deal of trouble to make an area beautiful, modern, desirable and, yes, accessible to the public, forgot completely about the disabled when planning this little shopping district.
As far as health goes, I'm not normal. But...I'd like to feel normal. I'd like to go out for a day and feel that my bad legs and my lack of strength and stamina aren't major issues. That I can walk as confidently and smoothly as someone who doesn't have a walker. That I can get into places without having jam myself into a partially open door like a salesman in a sitcom, or without throwing my whole weight against the door to open it enough so that I can get out.
I'd like to go out and see people and have fun because I want to.
Why do there have to be so many invisible signs up saying, "The disabled aren't welcome"?
**If you want to know what the spoon theory is, go here: http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf. Christine Miserandino can explain it far better than I can.
***