Sunday, April 27, 2008

Being Disabled is Not a Character Flaw

The thing I've been mulling over lately has to do with talking about health issues and disability. There's usually someone in any group who takes a certain pejorative view of the disabled. They often think that a person who says they're disabled, if it isn't by something traditional or obvious like being blind or missing a limb, isn't really disabled, but out to *get something.* They may think that about a blind person, too, of course. Often, these are people blessed with great health and an uncanny ability to eat whatever they want and never gain weight.

Maybe it seems reasonable to them that being chronically ill isn't due to a failure of health, but to a lack of character. After all, they've never personally experienced anything remotely like it. They frequently have no doubt that if they did, they'd be a shining example of Courage and Acceptance and Stoicism and Pride, of Suffering in Noble Silence and Never Taking Medicines (since meds, you see, are just a cop-out). And no matter what happened, or what others said or did to them, they'd never ever ever feel the tiniest bit of anger or bitterness. No, they would always Rise Above It. Always, without fail.

I've found that an amazing number of people think the disabled have a huge responsibility to stay both happy and noble. Display one jot of the downside, and you get this solemn look of deep disapproval...

There's a great blog out there for people like me. It has to do with living your ordinary everyday life with chronic illness. A woman with lupus started the blog, and this essay was the seed it sprouted from: the Spoon Theory. Lupus is one of those chronic illnesses that doesn't always *show,* which adds a whole another dimension to dealing with it.

Trying to describe to the uninitiated what that life is like is difficult. The author of the blog was trying to explain it to her close friend one day as they sat in a diner together. She finally grabbed a big handful of the diner's spoons, and used them to demonstrate this: everything you do from the minute you awaken has to be carefully thought out, planned, and *budgeted.* The handful of spoons represented the day's total amount of ability. You start off with, say, a dozen *spoons,* and you'll be using a spoon for every small task you perform. If you run out of spoons before the day is over, you're out of *life* for the rest of that day.

It's beautifully written. It hit home for me, big time. That post gives me great comfort. I just read it again.

*--But you don't LOOK sick!* I used to hear that all the time. Not so much, any more. I *show,* now. What an awful thing to be grateful for.

When I try to explain to people that I can walk some, but it's not good for me so I shouldn't, too often I get that look of disbelief. The look is almost immediately masked by some; by others, it's deliberately, openly, disdainfully displayed. They've just now written me off. I watch their eyes as their expression subtly changes, I can see myself reflected now as a non-person, a human of no value, no worth. No credibility. A liar or a lunatic, and who really cares which one it is? Don't waste a minute of time thinking about a non-person. They have no worth. That's the whole point.

Sometimes I say, *Excuse me - Here, see this?* and flex the left foot so the scarring and deformity shows. *The more I walk on it, the sooner they amputate it. They already tried it once.* I don't care, frankly, if it upsets them. They deserve it. It's an entirely fair payback for what they just did to me. The punishment fits the crime.

I recently sat with a little group who spent a good 15 minutes talking to each other about an elderly woman we all know who has terrible health issues, and whose husband is in the same boat. I've met this woman and instantly liked her, but haven't had the opportunity to get to know her yet.

I sat there as these folks discussed, over my head, how she never complained, and her husband never complained, and how they could both *milk it for all it's worth,* but don't.

To talk like that in front of me was not diplomatic, to say the least.

You see, I decided early on that it was best both for me and for anyone around if I talked openly about what's wrong. If a person spends any time at all with me, I have to make sure they know about the allergies, for example. Often - very often - people wear perfumes, or clothes washed in Tide, or other things that can make me very ill very fast. If I just try to keep moving away from them as they talk to me, they follow. If I try to get upwind, the wind changes. If they sense I'm trying to get some distance between us and don't know why, they can get offended. So communication matters, to both of us.

I tell people about the reasons I do what I do. Some of my coping mechanisms seem strange otherwise. Sometimes those who don't know the reasons behind them make comments or poke fun at those coping mechanisms, and later when they find out what's up, they can feel pretty embarrassed. I'd rather spare us both by explaining myself as I go. I also try to make sure they know I don't let this stuff hold me back whenever I can help it.

Those are just a few small examples of why I talk about my health. I have very good reasons to do so, and truly believe it's for the best. I do not accept the maxim that talking about your health problems is the same thing as whining about them. To people who believe the only honorable way to handle disability is to accept it in total stoic silence, I may look like a weak whiner or a fool. I know better. But they don't.

To sit at a table with people expressing those opinions with some force was not easy. I contributed nothing to the conversation. I sat there silently. I wondered if some of it was being directed at me in a nasty catty sort of way. Because one of those people has seemed, over the years, to believe that there's nothing really wrong with me.

We all get that, disabled people do. We get it from people who should know better. All the understanding and forgiveness in the world can't make the painful backstab of that attitude go away. Not completely. It doesn't seem to matter how very well we know our conditions are real, that we're not trying to *get* something out of it, and have nothing to feel guilty about. We're only human, and it hurts.

If I'd been quicker on my feet, I'd have asked this question: --Just out of curiosity, because I really do want to know, can you tell me precisely what those people would be trying to *get?* What sort of payoff would they be trying to *milk* from their disabilities?--

Knowing that even one person in that group probably has that belief about me makes me a little paranoid to talk about the health stuff. I know, and know absolutely, that I'm truly ill, and that I do NOT try to *get* anything out of my condition. I can't see that I've gained a single material thing from it. Quite the opposite. The losses it's caused in my life are huge, they're almost unimaginable. When I got sick I lost everything: the job, career, profession I'd worked so hard for and enjoyed so much; the use of the college degree I'd worked so hard for; all my possessions including my car; my health insurance, my income, my sense of safety, the respect of the working community, my stellar credit rating, the ability to travel or even leave my house or my bed at times, the ability to wear makeup or perfume, or to see a movie in a theater; the use of my left foot, the ability to walk at will, or to experience for just a few minutes what it's like not to feel unremitting intense pain; oh I could go on and on...

Prejudice is not rational. All the medical proof in the world would not change that person's opinion. They hold that belief not because they arrived at it after a careful quest for truth, but because they have some sick psychological need to believe it even in the face of overwhelming evidence to the contrary. Sure there are people who fake it, and also those who try to make some profit out of a genuine disability. However, the vast majority of us aren't in either of those groups.

It's incumbent on us all to understand the characters of the individuals we meet up with in life. The person in question has a responsibility to view each disabled person she meets with an open mind, and determine for herself if that person is on the level or not. Just as we all must do with the disabled and the healthy, both.

When I was growing up, the quality of compassion was greatly valued in many of the people around me. Not all of them; of course not. But very many. Liberals and church-goers. Upon crossing paths with a sick or elderly or disabled person, they'd jump right in, ask what was up, listen with interest and kindness, say *hey you're doing great, good for you!* and can they help with this or that? They took pride in treating the disabled with respect and dignity, with the same basic acceptance they'd show anyone else. It used to matter to a lot of people, to be compassionate to the folks they met up with day to day. One on one. Not just by sending some money off to a relief organization - then a year later, talking about how those people Should Be Over It By Now.

I distinctly remember how and when the tide turned, when it suddenly became fashionable to be critical instead of compassionate. I remember when it happened. I remember worrying for all of us.

That's part of what I've been mulling over lately. Naturally, it's the one thing that could make me a little reticent to post about the health problems on my plate at this moment. But from its inception, dealing with those health issues has been a large part of my goal in blogging. Not to mention: My house, my rules. I will.

Just as soon as I'm awake and functioning again.


SeaPhoenix said...

Always interesting, K. Good to hear from you.

Jean said...

The number of ignorant people in the world is frightening.
I so much admire your strength and your determination, k.

Nancy said...

Yep, they do judge and usually come up with a negative judgement.

The Singing Patient said...

well said!
i have labels for a couple things you describe here.
one of them is "compassion fatigue." folks who are willing to help at first, then they realize they will never be rewarded by getting to see you"all better" again, like helping someone with a broken foot or a cold (something finite, as opposed ot a chornic illness that never goes away.)

the earlier part of your post reminds me of "blame the victim," which i experienced in my case from the very folks in the church. it's like the folks who blame a rape victim by saying she was "asking for it" because of how she was dressed. why do they do this? think it's self-centered fear. if they can convince themselves that you brought it on yourself, then they can fool themselves into thinking it will never happen to them.

i joined a yahoo e mail group called "lupies"
between that and my blog, and other blogs like yours, i feel much less alone/ insane, because someone has always been through what I have.

thanks for sharing your thoughts.

Jan said...

If I'd been quicker on my feet, I'd have asked this question: --Just out of curiosity, because I really do want to know, can you tell me precisely what those people would be trying to *get?* What sort of payoff would they be trying to *milk* from their disabilities?-- thoughts, exactly, as I was reading what you said about those insensitive people.

How in the world, anyone, could think that a person could be after 'what they can get' out of a terrible, dibilitating, affliction is beyond me.

It's enough to make you sick..but don't allow it to make you feel worse than you do, now, if you can possibley help it.

There are plenty of us out here, who really do care, and admire you, so talk about everything as much as you want or need to.

I'm so sorry you had to be hurt like that.

k said...

Thank you all, so very much. You have moved me to tears.

Pretty Lady said...

Do you think the shift from compassion to judgment had something to do with the New Age 'you make yourself sick with your mind' sort of thinking? Because that's the source of a lot of abuse I've seen and read about.

It's a horrible and tragic mistake, because although it's true that the mind plays a part in illness, it's not a thing you control with your will. You don't 'think happy thoughts' and get better; it's much subtler and broader than that. It has much more to do with the sort of courage and grace that YOU show, k, on a daily basis. In your own very deep way, k, you ARE healed--they're just too ignorant to see it.

Also, physical illness is an incredibly dense thing, which does not respond quickly to changes in consciousness. It takes a long time for negative psychic energy to 'dense down' into a physical illness, and thus a change in that energy will take a long time to show a physical result. Also, there's a feedback loop going the other way--pain and disability have a terribly dragging-down effect on your mind. Thus there's definitely a mind-body connection, but one does not rule the other.

And finally, the primary rule of all this is that you cannot EVER know what's going on with someone else; you cannot EVER get into their heads and know all that has gone on to contribute to their illness. Thus judgment is not EVER appropriate.

Grrr. This is basic.

Pretty Lady said...

Also, a huge amount of what causes people to get sick in the first place is by absorbing abuse over decades from PEOPLE LIKE THEM. Grrrrrr.

k said...

Please excuse me, any lingering readers. I'm going to step on some toes here, which I'd always rather not. I like you and your toes too, and don't wish to cause you any hurt.

Many of you have great respect for former President Reagan. I do not.

Of course, I believe I have extremely good reasons for this. I request you do me the courtesy of simply taking that as given, okay? I worked for his administration as a federal banking officer, and personally saw things you could not be aware of.

OTOH: I have little respect for most any politician, ever. So it may not be as personal to Reagan as it sounds.

Pretty Lady - IMO? Yes, it did, but that's only part of the story. It started way before the New Agers gathered force. It began, vaguely, in the late 1970's. It took off hugely in the Reagan administration.

I found this interesting, so I paid attention as it unfolded. I was born in 1958, and Reagan's first presidency was in 1980, when I was 22 and a real estate broker in Chicago. Interest rates were around 22% at the time, and Carter had recently appointed Paul Volker to head the Fed, where he promptly instituted monetary policy in order to control rampant inflation. In 1983 I went to college; in 1985 I graduated with my magna c. l. degree in Finance and in Real Estate. Later I worked for FSLIC and the FDIC, among others, during Reagan and Bush I, liquidating failed banks, primarily in the commercial loan workout area.

Just a little background to explain my own perspective on this. (It really does have to do with health in the end!)

As part of the great De-Federalizing of the Federal Government, Reagan helped make it extremely fashionable to blame the sick for their sicknesses, the poor for their poverty, and the mentally ill for their insanity. He dumped the crazies out on the street where we see them today, talking to themselves, eating out of garbage cans, and sometimes verbally or physically accosting us.

Of course, blaming those groups for their own ills assisted greatly in cutting off federal funds for their aid. First, dehumanize, right? A tried and true practice.

Do you remember *compassionate conservatism?* Reagan originated that spin; Bush II copied it. It didn't survive either of their presidencies. Reagan's own party, as a sort of running joke, rephrased it as the *cruel to be kind* approach. I found little in his actions that demonstrated true compassion, and found many things that demonstrated the opposite, and I was certainly not alone.

His attitude found fertile ground, and part of that ground was the New Agers. You'd think they'd be on opposite sides, but often they were not. Nancy, for example, ran Reagan's schedule - with an iron fist - by first consulting with her horoscope advisers.

*Magical thinking* - where if you believe something hard enough, it will therefore make it come true - began to be accepted as a *normal,* if non-mainstream, viewpoint. Rational discourse was not credited as much as in the past; a set of feelings could stand in for facts as an alternative but valid *belief.*

Example: Riding on some conservatives' fears of Satan and of sex, false allegations of mass, organized child abuse at the hands of *Satanists* went rampant for a while. Some innocents are still in jail, even after incontrovertible evidence clearing all others has come forth in their particular cases. Interestingly enough, years later this trend became blamed on the *liberals* rather than the conservatives (usually DA's) who rode into office on these cases. Now THAT's a great political coup, huh? If I had any respect for politicians, I'd almost admire that one.

There's a great difference between holding someone responsible for their actions, and judging their characters. During the Reagan administration, that difference was ignored at the presidential level.

Before that, it was perfectly common among the populace, but a long history of its distinction in civil and criminal law kept it out of higher politics. Most politicians, of course, are either lawyers or studied law; politics has everything to do with law, with legislation, so that's their training ground. Reagan was not an attorney, but simply a slightly self-educated person who *acted presidential,* in a phrase of the day. So he didn't have that legal background honing the distinction between responsibility and judgmentalism in his political mind.

For a wide variety of reasons, this change in attitude flowed through all aspects of governmental control. So while it may make no logical sense to you or I, standing here in 2008, what happened during that time was a great shift in the perception of human validity.

If you were sick, it was probably your fault for having the wrong attitude or beliefs. Same as calling ketchup a vegetable for school lunches. Not logical - but there you have it. There were many, many times when physical illness was blamed on a lack of Christianity, especially of fundamentalist Christianity. It's happened to me personally, to others I know, and was sometimes in the news as pertaining to policy at the time.

Throughout history, it's been very comforting to many people to be able to blame their discomforts on the underdogs of society: on the sick, the poor, the insane. However, that doesn't work very well unless those sick, poor and insane people can be held at fault. If they're innocent, you just look like a jackass. (That's where the hungry school kids bit gets tricky.)

A strange twist, there: holding others responsible for absolutely everything negative in their own lives, but not holding one's self responsible for anything negative in one's own life.

Strange fruit.

What people younger than myself can't recall from those times is this: President Reagan set records for being the president who was most approved of personally while his policies were least approved of. In other words, people adored him as a man, while often simultaneously disagreeing with many of the things he did. History taking its usual course, people now mistakenly believe that his policies were highly regarded by the majority in those times. They were not.

*The singing patient* up there nailed one very important impetus behind this change from compassion to judgment: It's also a part of *blame the victim.* If that rape victim got raped because her skirt was too short, then we can prevent bad things from happening to US by not wearing a short skirt. *They can fool themselves into thinking it will never happen to them.* How very well put.

It's not a coincidence that *singing patient* found this experience in the church. Judgment. Character. Beliefs vs. fact. Christian fundamentalism was a driving force in Reagan's election and in his politics.

As questions of human conduct so often do, it comes back to control. We want to be in control of our lives, our destinies; this is one of the very unhealthy ways that's expressed.

Your take on the mind and the body fascinates me. About ten years ago I began to see, in this clear unbroken stream, how certain forms of misuse and/or abuse from babyhood on up has influenced my physical health. Those things certainly become entrenched, don't they?! And in essence, what began it all was a lack of compassion in parenting - broadly, meaning also in the school system, etc. When I was a child, displaying much compassion for your kids was widely considered to be very bad parenting indeed.

And since we all want and need and strive to be loved by our parents, what do we tend to do? Turn stuff like that inward.

You know some of the worst results of that in my own history. I look back and understand how things happened, and see the effects even today.

But there's been a fundamental shift inside me. I believe that's why I'm still alive and more or less whole. I should be an amputee and I'm not. I should be dead and I'm not. Why?

Death was so close to me in 2004, it was hovering over me like this huge black entity. My mother and father actually came to Florida to be with me. A first in recorded history for our family, who generally holds it as Bad to Visit People When They're Sick. (It supposedly prevents them from getting better! Yeah, I've Spoken to them about that. Very, very gently. *Did you know that studies show...How interesting, huh?!* They've gotten much better.)

My mother, I think, had a sense of that black thing over me when I got home from the hospital. It was sitting in the air above my bed at home. Thick and huge and oppressive. It wanted me. I think maybe that's why my dad came too. It was was almost palpable, you know? That thing. So much so that even a woman like her, that would normally laugh at the very concept of something like that, felt its presence. I felt her fear. It, too, was almost palpable.

I wanted to explain to her that it was okay, it would NOT get me, I never doubted that or had any real fear of it, just a watchful eye; but I couldn't at that point, still too sick to talk. They sent me home from the hospital a bit too early, my veins were all blown and I was a high-maintenance patient so they sort of figured --Why not?...

Mom learned how to soak my foot, then pack it with Iodoform. So did Walter, the usually squeamish. So did my dad. (Well, he already knew, of course.) Mom's *reason* for coming was that Walter was having shoulder surgery right when I was released, so he needed help for both of us.

Our friend Burke, whom we all loved and loved us back, was in another hospital with MRSA pneumonia and an abdominal MRSA abscess at the time. Poor Walter was going back and forth, sneaking us Cuban pastries in our hospitals...Burke was released and supposedly got better, but he died not long after that, perhaps from a PE. He probably gave the MRSA to me as I ferried him around to hospitals at various times.

I'd do it again, too. In a heartbeat. Oh God, how much I miss him. Why did he die, and I did not?

Both Mom and Dad went with me to Dr. M when the infection resurged and I had to get it debrided a second time, no morphine...Dad was assisting Dr. M, and my mother let me squeeze her hand and I almost broke it, I'm too strong, and my dad said impatiently, --No no no, just hold out two fingers, they can't break your bones that way-- and Dr. M laughed as he scraped. Dad sounded exactly like he was scolding a surgical nurse. In our way, we all had a very good time that day.

For them to do all that played another big part in my healing. I can feel it reverberating still, healing me with that very slow process through the density.

They had become, you see, compassionate.

Pretty Lady said...

Wow, thanks for this. I was indeed too young to have any direct perception of how Reagan's ideas and policies were affecting people. I was wholly sheltered from them. My parents have always been the kind of people who are judgmental in theory but compassionate in practice; my mother makes disparaging comments about 'those people,' but when one of 'those people' runs across her lawn in tears, she brings them indoors, installs them in the guest room and takes care of them until they feel better. Dad too.

I suppose that's why I'm so inclined to give right-wing blowhards the benefit of the doubt.