Wednesday, April 30, 2008

Invisible People. Or, Compare and Contrast: WiMPS and GIMPS

When Ralph Ellison wrote Invisible Man, he created an unnamed narrator who continually finds himself caught in situations beyond his control. Unfortunately, the prevailing metaphor that organizes the novel is one of blindness. Ellison obviously wanted to work with motifs of light and darkness and race as well as with Homerian concepts (the blind poet as well as the Cyclops myth), but he ties people’s mistaken attitudes and lack of personal insight or awareness to a physical disability, allowing disability to serve as a shorthand for all the racial problems his experiences embody. The narrator’s repulsion is turned more immediately toward another man's glass eye, which lands in a glass of water, than to the man's behaviors, and the glass eye becomes symbolic of all that the narrator hates. Repeatedly the narrator chastises people for failing to see; over and over he refers to their blindness. Because of the constraints that thwart his ambitions and his work, because of the contradictory social or even activist forces that cancel out his work or threaten him, the narrator ultimately decides to make himself invisible, to live underground and apart.

As people with disabilities, we are still Invisible People, sometimes by choice, sometimes as imposed by others, in spite of the attention we often unwillingly garner. Within Ellison's own construct, we are invisible; the disability is itself obscured and becomes a vehicle for measuring social problems. Reduced to good or bad in fairy tales, films, books, people with disabilities serve as shortcuts for complex thought. With my primary physical disability, characters are always evil or broken, representative of chaos. I remember watching Unbreakable with horror; someone had recommended it to me and I guess saw it differently. The primary character chooses to visit accidents upon other people because of his own disability and the supposed supernatural powers it gives him. Isn't that what society would like to believe, that we are actually more powerful beneath it all, that we're hiding something? People with disabilities are very rarely full characters but instead serve as inspiration or examples of curmudgeonliness or isolation. From The Hunchback of Notre Dame to Beth in Little Women to Rain Man to the diabetic woman in Chocolat, disability is used as a substitute for character. Disability becomes character, is the character. There are never characters who just happen to have a disability. Real people with disabilities are invisible, not represented. But 1 out of 7 people have at least one disability, nonmetaphoric disability. This number shocks because many disabilities are hidden. Often they are called "silent." Sometimes it's true that we're not as socially visible. We can't travel as much, be out as much. Transportation is an issue. Stamina is an issue. Nevertheless, we are. Invisible.

Ellison's disablism cannot be ignored. But here's where his analysis is useful. In the original short story on which Ellison based the book, the narrator talks about inner vision, the perception of others that comes not from senses alone but from willingness to connect. When people fail to notice accessibility issues, when they fail to notice that their actions in a particular moment create an accessibility issue, when they fail to make accommodations because they have no proof that something's wrong with you, when they say nothing looks wrong with you, when they make fun of you because they see lazy instead of disabled, when they mock you because they see you as quirky or clumsy or stiff, when they conflate physical and learning and mental disability, when they think learning or mental disability is a failing or a choice, when they privilege one disability over another, when they enthuse about euthanasia for people on ventilators, when they believe reasonable accommodation is an unfair advantage, they make you and your disability invisible, they render you an invisible person. They deny needs that can be met, they deny your humanity, they resist understanding. They in fact don't want to understand.

I never knew one woman was dyslexic until I said something about how smart dyslexics are (they are smart; they just process information differently). She had made herself invisible because she was accustomed to judgment. Others have confessed their disabilities to me now that mine is more obvious; most often their disabilities are invisible. Most often they don't do this to imply that their situation is the same, but to ask for advice--a doctor's name for a medical issue you have in common, how to deal with an ergonomics issue. And I'm glad to give information to relieve others' pain or help them find an answer. Sometimes they seem to feel guilty for sharing this information since by their comparisons, I win. But it's not a contest and there's not a way to compare. Some issues I've become accustomed to or adapted to, most of the time, so that it doesn't take much thought. For them, they may be learning about a problem for the first time. Pain and angst are invisible.

As Ellison said, "all dreamers and sleepwalkers must pay the price." Is sleepwalking a disability? Nevertheless, we must wake ourselves, even as disabled people, to the concerns of others. Not all disabilities are readily apparent, and those for which you have no proof can hurt as much. Proof is sometimes still not enough. The woman who oversaw the installation of our lift said that her son, who had muscular dystrophy, was asked to prove that he could not walk. Stand him up, and he flops down? Faking it. Another young boy was recently prohibited from playing in Little League because he uses oxygen. To the umpire and officials, his needs, which include playing sports, are invisible. And yet they sought to make him more invisible, to remove him from baseball completely. He paid the price for such discrimination. We will pay the price of such discrimination if we don't act similarly. This boy, Jacob Garcia, said: “I feel like I'm making way for people like me who wear oxygen, too. I feel like I'm making a path for them so they don't have to go through the stuff I've gone through,” he said.

We must also wake ourselves to our own problems, recognizing that some problems are systematic and not mere personal problems. We must awaken health care providers who do not see us as disabled because they see treat single components of complex and interactive systems. We must awaken others' conscience and allow them to feel guilt. As limited as our physical resources are, as difficult as it is to manage basic daily tasks, we have to make the efforts we can (without harming ourselves through overtaxing ourselves) because no one will make them for us, though sometimes they'll make them without us, misguided.

Myth has it that babies born with cauls, the deflated amniotic sac, over their faces are blessed with extraordinary perceptions and abilities. Of course disability cannot imbue us with such special strengths, as some would have it. But it can, if we let it, give us the experiences necessary to cultivate sensitivity and to encourage others' sensitivity, not just to disability issues, but to injustice in general. Disability is too complex for us to reduce to blessing or curse. It is neither. But just as race, gender, class positions can be catalysts for new recognitions and advocacy, so can disability. It's a starting point.

The first person I saw at work this morning was White Male, Privileged (WiMP), who went up to his coworker, casted down one side of her body (full arm and full leg with apparent surgical involvement), and pretended to kick/trip her, forcing her to stop and almost causing her to really trip. WiMP also thus forced his coworker to slow down even more, though she was obviously having trouble standing and walking and seemed to be in pain. Then he laughed and joked about throwing her under a bus. What WiMP didn't see was me, GiMP (got mobility power), behind him, in my scooter. A simple but quite sarcastic "Disability jokes, always hilarious" from me, GiMP, turned his head. And then WiMP saw me and looked surprised, in fact did a double take. His eyes actually widened. Yes, all WiMPs should immediately be surrounded by angry GiMPS, GiMPS taking up for each other. Then WiMP scurried off, rapidly.

Contrast this moment to later situations today: when I got on the elevator this afternoon, I realized the other person there was continuing to hold the doors and was trying to give me room to turn to face the front of the elevator. Very sweet, I don't think anyone else has done this for me--I really don't like riding backwards. I explained I couldn't turn around, though I'd like to (I get stuck or it gets called to a different floor while I'm trying to turn it). He mentioned that he has degenerative arthritis and has noticed how really inaccessible our workplace is for others. I would have talked to him longer but absolutely couldn't pause--I wish that I could have asked him if he had any particular issues with accessibility that were of concern. To people like this, I am not an Invisible Person, and though my needs are different, they are perceived, even when they can't be met. I had so forgotten what it's like to face the front of the elevator that I didn't at first recognize his action or its import.

Similarly to this man, someone who was with me today observed how I loaded my scooter on the lift, and seeing that the straps on the lift were difficult to reach, affixed them for me later. This was really helpful, though it's not something I would have felt comfortable asking at all; what she didn't know (or maybe she did) is that this is the most difficult part of scooter usage for me--getting them off can be maddening for me since I don't have a lot of upper body strength and the hooks stick. If I don't use them, the scooter sometimes shifts off the lift too much on bumps. Regardless, she stayed behind the car with me each time even though I mentioned I unlocked the front seat--that was nice since I worry about getting run down by vehicles (especially in the busy shopping center).

Although I run across disablism continually, I love that people ally themselves to us, perceive needs and act are allies to people with disabilities, that even while some seek to make us Invisible People, others work on our behalf, against disablism.

Tuesday, April 29, 2008

Ouch

Pain switch: flipped to On. I took a slow walk around the neighborhood yesterday since I want to be stronger physically and cardiovascularly before and after surgery. And I am reminded why I use the scooter to be out a long time. Bone pain, SI joints, bad. I could trace out the outline exactly, no anatomy book needed. Why is it on skeletons that area seems basically nonmoveable? It's ironic. The one thing that shouldn't hurt does. I am reminded that even if I didn't have my neck fused, it would probably eventually fuse itself. Of course, that wouldn't eliminate the disc pressing on the spine.

Some of the people on some of the spine message boards are willing to have their disability increased so that they can fuse faster (self fusion, not surgical) and eliminate the pain. Some of the immunosuppressants shorten lifespan (this I think is more culpable than rheumatologic illness itself), so I'm not really willing to go that route.

When my pain is this bad, I'm so clingy. My poor spouse can barely get out of the house for a bit or go upstairs.

Monday, April 28, 2008

Say what you need to say

...so goes the new John Mayer song, over and over. And over. I have a (put on your disbelief suspenders) friend (no, that's not the disbelief part) who periodically feels compelled to give me Cassandra like warnings which turn out to be right. So the day my son came home with a 103 degree fever and the school lost him, I was prepared. When my sister had a cancer scare and they had to crack her ribcage open to get the tumor, I was prepared. When a wolf came in sheep's clothing, when I needed to make specific home repairs, when a family member made a major confession, I was prepared. I've learned to listen to him, and I've not known him to be wrong, though sometimes the timing is slightly off. So he warned me in November that I would get sick. Although he didn't say how sick, he said to be prepared to clear my schedule. Sure enough, though I didn't think he meant for so long. A few days, maybe. He made a few other strong predictions about life changes. Who knows. He moved across the country a few months ago. I'm missing talking to him and just thinking about what he said today. (It's platonic, he's gay, for those thinking, uh oh.) There are a lot of friends I miss talking to and don't see much anymore.

Continuing to think about the song, or the phrase rather, since it's more of a phase than a song that circles round the head on infinite loop, I'm not one of those people who can say what I need to say, or at least not enough or not anymore. And I find myself shutting down more and more, a shadow self that cannot say what I need because of the open warfare on people with disabilities. If only disability were a flower right for all zones. I need a climate where you will not put your newly crawling baby behind my scooter on the floor when I'm blocked in on three sides and can't turn my head to see her. I need you not to park against the only curb cut. I need you not to be openly hostile when I make a request for reasonable accommodation. I need you to understand when I can't show up that I am not being lazy, but hurt because I cannot be there. There's too much that wants to choke us out.

In contrast, my friend trusts himself. He knows when he's right. He still says what needs to be said, even when people tell him he shouldn't, even when he's right.

People think we the disabled are the same, only with wheels, but it's not true. I'm not the same as you, only with wheels. It doesn't compensate for what I can't do, for who I can't be, for what I might have been, for the three other career paths I'd have chosen first. It doesn't allow me to help family members enough, to babysit, to lend a hand. That's what's most difficult sometimes. My wheels won't help me hike a mountain, and damn it, that's what I want to do. A different John Mayer song, "Your Body Is a Wonderland," always made me squirm since my body is a wonderland for all the wrong reasons, but I'm learning to appreciate it. I mean appreciate the song, for all the wrong reasons, not my body, to which I feel less and less attached. I only know it by its pain. By its pain, by its wrongness, by its interference, not by its movement, that's how I recognize myself, what makes me embodied. No longer defined by what I do, but what I am. In not doing, I lose myself except in those short moments when touch steadies me, reminds me that there is more than this thin cutting wire of pain, of no breath. Your hand on my back, it steadies me. Your voice, it brings me back. To this body, to this. To a climate that gives me permission to live.

But how often do we leave ourselves in situations we should not because we don't want to speak up, where people harm us rather than help us, kill us rather than cultivate us? In a volunteer job where a friend and I were disrespected and devalued, spoken to rudely, it took us almost a year to decide we'd have to quit or be more demanding about change. My friend reminded me that if the job were paid, we'd never have put up with it and definitely shouldn't subject ourselves to such stress in a volunteer capacity. So we did what we needed to do. Similarly, I once went to a physical rehab specialist about five years ago. He recommended some of the same procedures I've recently had, but I recoiled at the idea because of his demeanor toward me, his insistence that I move in a way that could have given me a fracture (in a way that his own PT and the endocrinologist cautioned me never to do), and unnecessarily causing pain. On one visit, he brought a med student with him whose techniques were the same, but who didn't hurt me, and an epiphany occurred. I didn't say what I needed to say, but I did what I needed to do and didn't go back.

I wish I could leave behind what needs to be left behind more often. I am getting practiced at leaving, but not practiced enough. There is so much that we can leave behind, but we fear the change more than anticipate the good. Too often I wait, too long I wait. I wish I weren't so sensitive about disability, I'm so damn tired of it all. Old friend, there are a few things I hope you're right about.

Thursday, April 24, 2008

Updates

My correspondence and a number of related electronic files from the last year vanished without a trace. Yes, everything's protected as it should be and I don't open random attachments. Who knows? Not much blogging here until that gets restored, if it can be.

In other news, I have opted for surgery after talking more with the surgeon and will do that in several weeks, working around the doctor's limited schedule and husband's travel schedule. I feel fine about it. I believe will work.

I don't write much about my son's autism, even though he doesn't read my blog at all. I guess I'm in the habit of being closed about it since he doesn't like me to discuss it around him or even with him (I have to handle issues more indirectly); right now I'm not sure he'd notice. He's shut down again, and I can't tell why. We notice it and his teachers notice it, and it's been getting worse. His voice has become a small chirp we can barely hear rather than loud and shouting with his sister. I honest to God don't know why he's withdrawing like this. As far as my health and my grandparents go, he is basically unaware except for the information I give him directly and gently because he's not hearing any part of extended conversations. He doesn't notice the people around him at all--when the teenagers came in to the ice cream place with an assistance dog, he never noticed or saw them at all, even when they were the only others in the store, even though he was across from them. I don't know how he gets his school work done. His teachers don't either. One said he misses the directions and can't answer questions about lessons anymore. His grades are dropping but passing.

I didn't know people with autism could regress like this. I thought once we passed each milestone and kept seeing him progress, we wouldn't have setbacks like this. We cannot get him to answer questions or converse with us. He answers with yes or no, and if we try to engage him, ask him further questions that require a more complex response, he says, "Hi" over and over and gets giggly and won't talk.

It's his story, his life, so I'm not sure I feel right writing about it. Because he can pass his academic classes, he doesn't qualify for assistance from the school in terms of tutoring or speech or occupational therapy, though he qualifies for needed accommodations.

Monday, April 21, 2008

Disability Secrets, Revealed

What I didn't know about before using the scooter is that there is often a covert, secret acknowledgement that often happens among wheels users--eye contact, an almost imperceptible smile and nod that happens as you know you share the same challenges in getting around a particular space with unaware people. And I've shared it with non-wheels people, both when I've been walking and when I roll along. I couldn't figure out why the teenagers in front of me in the Target line were so unphased by me and my kids once when adults sighed because I was "in the way" in a few places (I was making selections too) or seemed not to know what to do with themselves. Then I realized the young man was missing an arm. Our smiles were mutual.

I have noticed that often this doesn't happen with temporarily disabled people--people who use scooters/wheelchairs while casted or who don't consider themselves disabled enough, so that they still don't engage with the rest of us. They often avoid eye contact, perhaps feeling uncomfortable or that someone will call them out on it. Sometimes people more severely disabled will avoid any eye contact or be blunt--I'm not sure if they're reacting to the perceived/observed differences in ability or if it's just distraction/concentration. Sometimes I can just focus on navigating my immediate path myself, though I am aware through peripheral vision of others with disabilities.

Besides the covert head-nod, there's also the secret neurology handshake, a bizarre ritual that the newly initiated learns by heart through experience. Arms up--press out, press back, arms up-hands curled up-resist, hands curled down-resist, hands out-palms down, palms up-hands curled, etc.

Sunday, April 20, 2008

We are family

My grandmother's in the hospital following a nosebleed heavy enough to require ER treatment. No leukemia or anything like that. The doctor had her on Coumadin since he feared a clotting stroke--for no particular reason. Grandma's own mother died from a bleeding stroke, ironically, not the clotting kind. You get someone's blood thin enough and they're going to have the other kind of stroke.

I talked to my grandfather on the phone this afternoon. She had very heavy nosebleeds several years ago, so I asked if her Coumadin dose had been lowered then. I thought surely it had since several of us warned her then. He said no, and he had nagged her about it, but the doctor had put such fear into her about remotely possible strokes that she wouldn't argue for a change, and he didn't want to make the change. That's clear malpractice. Her blood levels of Coumadin were 3 times what they should have been. Not only that, but she's had vascular/microbleeds in the skin in her legs recently as well.

Don't we have better science than to treat patients according to a doctor's phobias? She's had to have a couple of transfusions and will be in the hospital for several days. Family members are pitching in to do more caregiving for my grandfather, who's extraordinarily physically disabled, and my uncle, who's cognitively disabled, as well as spend time with my grandmother.

It may be a busy for a while. My grandfather doesn't like being alone because of his very severe breathing problems, so spending some time there will help, and I can do things like make the coffee, clear the table, help get things close to hand, other basic tasks. My husband can add to his grocery list and cooking as needed, and we can transport my uncle to work as needed (1 1/2 hours round trip). Splitting duties among family members is going to be important since all of us (hubby excluded, but not related of course) have chronic health problems.

Put it in your pantry with your cupcakes

I hate gravel. That I learned today for sure. And I hate bad manners around PWDs. I also hate my own bad manners in response sometimes. Or is it that I feel guilty just for asserting myself? I don't snap at people and yell at them or anything. What I have found is that people don't like a firm "No" with eye contact, which I have found necessary sometimes for self protection. I guess my main reaction where I perceive myself as being rude is when I say, "What?" with raised eyebrows at someone who doesn't just look a little longer than you would at most people, but who keeps staring for an extended period of time. At times I feel I should be more sweet and patient with rudeness but just don't feel like shoving it in the pantry with the cupcakes, letting people harm me. Someone today literally pushed in front of me with a large board and physically stopped me from going forward: "You can't go that way." Hello, a scooter can't go sideways across a hill (or a ramp)--you can tip yourself so easily if you don't hit it straight on. I had to go up. But asserting myself to get the access needed versus being nice? Like the Simon and Garfunkel song, "Every way you look at it you lose."

If I really am catching someone off guard, like popping in during the middle of a consultant's product demonstration, I do worry about interfering with someone's concentration, especially if I accidentally lean on my scooter horn or crash into a table (both of which have happened). Or if they offer to shake hands and haven't had time to think maybe that's not such a good idea.

What I don't mind is surprising people in other situations, not telling someone I am disabled before I pick them up from the airport or meet them at the kids' school. Then my attitude is "deal with it," or rather, watch them deal with it. Some people can do this with grace, others struggle mightily for a bit.

What was nice today? When we were stopped for a while, my husband came behind my chair and pulled my shoulders back toward him so I had additional support for a while. Great pain relief. He also rubbed my hair at the same time, maybe too intimate for onlookers but nice after that much fatigue. It's difficult for me to sit in a low backed chair for long with all the neck pain. Difficult terrain makes that worse.

What I concluded today? I seem to be more disabled than many other scooter users, at least by pain if not in function, because I had difficulty going on at all at points and couldn't charge ahead full speed. The pain from jostling my spine was too high. Others seemed not bothered at all.

Friday, April 18, 2008

Access=ability

This Kindle will work! It's half the weight of any book. I might make a cloth cover for it since the book-y cover makes it a little more cumbersome--it's meant to protect the screen. No more gigantic 500 to 1000-page hardbound heavy references and books I've been needing, at least when I can get them through Amazon. Those books hurt me! Not just carrying them, but attempting to read them, hold them, turn pages. Although I have mixed feelings about Amazon since I would like more independent bookstores, I definitely appreciate this technology.

You know, there are people in the world who completely "get it." There are too few of them, but I am grateful for each of them. Today I had a chance to talk to someone who works in a disability field, and at every moment he was aware--and this awareness seemed to come automatically, without consciousness of it. When he mentioned summer events in which I might be interested, he immediately worried the timing (evenings) might create transportation issues. For those taking public transport it would indeed do so. Later, I saw him ready to push the elevator button if I needed him to, which is very helpful, because sometimes I do. And no weird dance getting off the elevator--he was aware of how I had to back up and turn to get off, which most people have difficulty with, blocking me. These are minor issues, but it's nice to have someone who isn't using a mobility device himself or herself completely get it. I don't expect perfection from people--I fumble around, trip, step in people's paths accidentally when I am walking. Being around people like this (those who get it, not those who blunder along like me) is lovely. I can almost forget my disability because barriers are removed and people are being thoughtful as people should be to one another. The biggest barriers are social--people's attitudes. When someone's already so conscious, it makes that time joyful rather than draining.

I am also very appreciative of the people who are helping with substantially needed and substantial changes at work, which will help quite a number of people. Whether or not they succeed, they are still making a difference through their show of support, demonstrating that people with disabilities have allies and that others will stand up to lack of accessiblity, continued discrimination, and policies with an inequitable impact. They are in some ways even more enthusiastic/driven than I. I'm worn down! A couple of people in particular have handled everything by phone and email, taking on more work themselves in order to help. Recognizing my current physical limitations, they've moved forward when I could not, when I would not have been able to. Their efforts are similar to what I've told my kids to do when a fellow student is mocked or made fun of--someone else needs to tell the bullies that they're wrong. And some of the responses I had received were very close to bullying, excessively harsh in tone; I have no doubt they wouldn't want their responses to be made public or even known to their supervisors. A direct, short, and objective request for cost free accommodation is not an invitation for meanness. Abusing one's presumed power is not okay. As the disability field person says, people will sometimes control themselves when they're being watched; many of the people who are very sensitive/aware about race and gender issues are in a fog when it comes to disability.

These things can be learned, people! The reasonable accommodation model is not that tricky, and treating people with disabilities with genuine respect is not much more difficult than treating any other group with respect. I don't have a lot of patience for those who dismiss etiquette or the law as difficult, because they're both fairly simple. Real awareness takes more than that, though, a recognition of the numerous daily challenges, again, many of which are social or societally imposed.

Blogging Against Disablism

Blogging Against Disablism will be on May 1. See Goldfish's site for more information on participaton and to see the posts on May 1.

Thursday, April 17, 2008

Disability, Computing, and the Law

Speaking of computers and security, did you know your computer or hard drive can be subpoenaed/mirrored if you have a medical or disability case? If, to take two examples that don't apply to me, you file workers' compensation or have been in a car accident and request a settlement, your computer can be searched for anything you've said about your health, about your insurance, and about the case as part of the "discovery" process. The defendant will search for any contradictory information or evidence that you are sometimes able/well enough to leave the house, for websites you've visited and health information you've googled. They will drag you through the mud like a rape victim blamed for wearing a short dress. Just a warning, in case you ever consider pursuing such a case. In an insurance case, disagreeing with/not following your physician's recommendations can be used against you, as can having to miss a doctor's appointment. So be careful what you write or type if you're in such a situation, because it can be used against you. On the other hand, a good amount of consistency and a lot of documentation may put the defendant in a very bad light.

Honestly, I can't see how anyone can put themselves through such any medical/disability litigation or civil action except through absolute desperation and need and as a last resort after trying every other avenue over an extended period of time. The process can be exhausting, tiresome, time consuming, and draining. And people with disabilities are particularly short on time and energy, plus dealing with bullying and retaliation could be difficult.

Note: my husband served on a jury for an insurance/medical litigation case, and a relative had a settlement after a car accident almost killed him and left him with apparently permanent limitations. Jurors are not familiar at all with invisible disabilities, the idea that someone may be severely impaired but may not be in a wheelchair. I'm surprised my husband was selected for the case.

Candle, Ken Doll, Kindle

My husband gave me a box of candles I had already purchased today...then he handed me a Ken doll, and I was thinking, what on earth?...then he said we're getting a Kindle (it will arrive tomorrow). That should be a huge relief on my back as more and more books become available on it! Because of the arm and neck pain, it's difficult for me to hold books/magazines for long or keep turning pages, especially since I have to lie down to read and to do most work. Holding a book up doesn't work so well. A friend with similar problems has had to stop reading except online. I haven't read the last 2 Harry Potters because of the weight, and help with book rests and lap desks only works for a short time. I have to say the Kindle makes me a little reluctant to give away any books at all, though we recently ebayed a number of outgrown children's books and are giving others away.

The Stasi at work (joking, sort of) want me to hand over my $3000 personal home computer for a while since my work email was hijacked for a couple of spam emails (as happened to many others accounts). I don't think so! But I said, "sure," and umm, forgot. Plus since the basket on my scooter falls off sometimes, it's not a good idea. I'm glad to run/continue to run any scans or make any repairs necessary or to give up remote access. I need my computer on a daily basis, and this particular computer is necessary for my disability needs.

Wednesday, April 16, 2008

More on the FLDS Case

What concerns me for the children in the FLDS case is that the state government is probably further traumatizing them in their handling of the cases. The mothers referred to children being horrified by physical exams, which concerns me that people are committing sexual assault or trauma in their pursuit of evidence (the collection of rape evidence or medical exams can be in itself traumatic). It also seems that these children are being warehoused rather than provided with foster care or nurturing care. Mothers of babies complained that they were denied water. These children need to be nurtured and provided a loving environment that is as stable as possible. It is traumatic for children to be taken from their parents, even when it's in their best interest.

I don't have much sympathy for anyone who voluntarily put their children into this situation and who allowed their daughters to become child brides without fighting to get out. Many parents apparently allowed their young girls to be taken to the compound without becoming members themselves. And FLDS has a record of kicking out boys, young men, and sometimes adult men for minor offenses. They have to in order to maintain a high ratio of women (or girls) to men. My guess is that they don't do the same to girls, kicking them out for minor offenses. Instead they apparently beat the hell out of them.

How could you people do this to your children?

The state of Texas did act appropriately in allowing the mothers to go to a women's shelter if they wished, but only a few chose to do so. I wonder if those women will have a better chance of getting their children back.

What happened to the young girl who called? That's what I want to know.

Better Results

Stomach virus or something--that's not the better part. Fortunately got through the MRI with that okay. And the needed transverse images absolutely look much clearer. And you know what? I'm not crazy. There is central cord compression, and both my husband and I can see it.

I sat outside the small hospital for about 5 minutes trying to figure out whether or not to take the scooter in, how far distances were. I didn't, and it was fine.

This hospital is set into an Edward Scissorhands-like new small town, everything brand new, from schools to banks to major employers to major shopping centers. It was beautiful but disconcerting. Everyone has a Lexus or a Hummer or a sports car. Even if I had the means, I really doubt I would spend it in such a frivolous way. The gigantic minivan is only because of my accessibility needs. I would much rather drive a smaller, inexpensive vehicle. My sister-in-law lives there, and I asked what there was to do. She still drives downtown. There's nothing cultural in Edward Scissorhands land--it's all about shopping, money, acquisition. No nature, and far from culture.

Edward Scissorhands--now there's a disability film.

Tuesday, April 15, 2008

Odd reversals

One of my friends approached me today with a bit of angst about his hair. He was wondering whether he should pull it back at work since someone implied he should. That's the first time I've had that happen, hearing a man worry about his appearance in that way, and this is from someone who is a wonderful nonconformist. It looked fine, really, and I understood his concern, but it was amusing to have the traditional situation reversed.

Another reversal: my friend commented on how I looked better this week, and I do feel better. We talked about my concern that my medical problems are all in my head/hypochondriacal, and he immediately and absolutely disagreed, and then we talked about how denial is the opposite of hypochondria.

On one hand, I have several doctors and a nurse from a range of specialities telling me I can have anything from continuing pain to lasting nerve damage to permanent bladder damage if I don't have surgery. Then I have two doctors saying I should get second opinions, one of them saying I don't need surgery. So what do I have, hypochondria or denial? I've been told to trust myself by one person, but why? My consciousness is as subjective as everyone else's.

Monday, April 14, 2008

MRI # What? I Don't Even Know

The MRI, not myelo, was approved and approve-able because of the newer post-epidural symptoms. So another week of the medical whirly-go-round. I just want off this ride. I'm not into roller coasters.

I really hope I don't have to go back to this neurologist for anything. Nonconsensual mindf***s are not my cup of tea.

Sunday, April 13, 2008

Nowhere to go

Why isn't there anything to do on Sunday evenings, and why does my desperation to get out for a while peak at 5:00 on Sundays? You'd think people would be living it up, trying not to think about the work week ahead, but I suppose most people need rest and regeneration. The problem is I'm feeling rested by Sunday evenings (I can't do anything Friday nights). Of course, chanting, "I'm bored I'm bored I'm bored" tends to drag everyone else down with me. There's always Delilah to accompany a drive out on weirdly abandoned roads, but I'm ashamed to admit the program annoys me despite the music. I don't know if it's the psychoanalysis or the sweetness of her voice, but I had much more fun in a small town in which people dedicated "Save a Horse, Ride a Cowboy" to one another than Bette Midler tunes. What is it exactly that happens Sunday nights? It's like the aftermath of a natural disaster. Sports, some television show? I don't watch either. At least when we were in the mountains we could go for a scenic drive, weather depending. Or on long summer days, take the kids down to play in the river. I was content to sit among the trees while they played.

There's a diner further in the mountains with great pies. We once visited two days in a row, ordering slices of chocolate pie for my son's birthday. I loved it out there, even though we saw bears cross trails where we had gone earlier in the day, even though I lost my wallet horseback riding (verboten for me, yes), even though my son fell into freezing and fast but fortunately low water. That's the kind of place I'd like to visit tonight--a short trail, deer standing at the bridge, time to contemplate. Time for discussion over veggies and hummus made with peanut butter (tahini in the mountains? forget it). No one has to lose their wallet or fall in the water.

I want to plan a 2-3 week camping trip in the mountains this summer. We have a good air mattress. It's the car travel that would kill me more than anything. The last time we drove for a couple of days of 7 to 14 hours, I would hardly let my husband stop. Prolonging the ordeal to stretch was just making things worse. I don't know what I'm thinking, but I just miss going out the door and up the mountain for the morning if I liked, with my only responsibility to pick the kids up from school at 3. My pain level was so high when I did hike, though, that I couldn't do so as regularly as I would have liked. I want to be back in nature, really in nature. I like to wake to stars so countless my heart can't take them all in. How all this would work I don't know. I can't even figure out how I can manage a day at an art festival or similar outings soon. And I can't think if I have surgery this is a particularly good idea. But sometimes the best ideas are the worst ideas, or the ones that would most lighten the heart.

My daughter's teary tonight because her frog has a large tumor on the side of its face and probably isn't going to do well. I hate to see it have a prolonged illness.

Hypochondria or no?

Part of what I heard the neurologist say, even before reflecting on her words later, is that my symptoms aren't real or real enough. I felt reassured for a minute, everything would be fine. I just needed a second opinion. And later when everything wasn't fine? I felt guilty, that I'm bringing medical problems on myself because of a lack of character, a lack of psychological willpower, a moral failing. Other people do well and don't have bladder problems or neurological lesions, why can't I? I hear myself, even if this was not her intention, being called a faker, the same way I was called a faker when I was 12 and using crutches after using a wheelchair and walker. I could use the crutches quickly, swinging my body wide in front of them, but move without them I could not. I still feel guilty for not conforming to what other people's perceptions of my disability should be and have to recognize that when I don't, sometimes I'm going to be called a faker...because I get better, because I don't get better, because I do too much or too little about it.

Since the neck pain was better for a few days and the bladder issues better, I started wondering if I was a hypochondriac or if everything was all my fault. These questions were of course compounded by the neurologist's insistence that I did not need surgery. It's amazing when the pain diminishes how difficult it is to remember how everything is at its worst. So Google led me into the seamy underworld of hypochondria, and from there I slid down the slippery slope of neuroticism, learning about conversion disorder and histrionics (the equivalent of 19th century hysteria, I guess), Munchausen's, in which people do themselves harm or make up symptoms for attention, etc. And I started wondering if I had brought illness or pain upon myself since apparently people with histrionics can exhibit physical symptoms without consciously trying to do so, etc. Does thinking you have hypochondria if you don't make you a hypochondriac?

A reality check as I read through symptoms reminded me that I can't fake an outrageous bladder pressure of 200, intense pain under anesthesia, or odd neurological reflexes. Similarly, I can't fake infections that won't go away, nor would I wish to. I absolutely hate being sick and am demanding and whiny when acutely ill. I don't want attention. I just want whatever it is to go away. I routinely cancel medical appointments because I don't want to deal with them if the immediate issue is resolved. I have a phobia of doctors and medical procedures such that I had to switch from a physician to a midwife during my first pregnancy and used to take my husband to every doctor appointment, even routine, out of fear. I try to weasel my way out of suggested medical procedures and often manage to do so, taking the least invasive route, the least pharmaceutical route. I understate my symptoms so I don't get overtreated. Nevertheless, I always wonder whether I will be believed.

Saturday, April 12, 2008

From the mouths of babes

My daughter, last night: "So LSD is a drug, but LDS is a church? They sound very similar." As a reader of Ms. and New Moon, she was interested in the Eldorado, Texas, story in the news, but I first had to explain Mormonism and the difference between mainstream and fundamentalist sects and told her who that we know is Mormon or jack Mormon. Of course all distinctions got lost somewhere when we ran across instructions for sugar cube temples (see instructions: tinfoil optional, http://lds.about.com/od/crafts/a/craft_sc_temple.htm) on About's webpage. My question: what do Mormons use sugar cubes for? Clandestine coffee?? Don't they know these things were designed for devilish pursuits?

Just before the FLDS (FLSD?) story broke, my son decided for no reason other than that he liked the sound of the name and that it was close to but not the same as the state my daughter chose two years ago that he wants to do his major state project on Utah. I cannot be as objective about this as I should. If only he could just report extensively on the Rockies or other natural features or the Olympics and I didn't have to explain Temple Square, handcarts, and massacres by the Mormons. I can't even eat my mother-in-law's funeral potatoes (always for a holiday) because I just can't stomach the concept. My son's too young to know about blood atonement, molesting kids under rain ponchos, or the vows and gestures about slitting your throat and disemboweling yourself (all mainstream LDS), but my daughter's mature enough and now been warned (I stated everything more gently than I do here).

I favor freedom of religious expression when it doesn't harm others, which excludes most religious practices. The FLDS groups are indeed harming women, girls, and boys. And with the excommunications and level of social control and patriarchy practiced by the mainstream church, is it really freedom?

Friday, April 11, 2008

Oh, the irony

The insurance company wants to replace the ceiling of one room and repair two walls and repaint before fixing the massive leak in the roof (no!). Actually, I think the leak's not that big. There's just been a lot of water.
The phone company called about the phone line being down (which apparently is no longer the case).
The car company thinks we haven't paid up because the dealership won't send them the checks, even though we had to pay the dealership to get the keys and they have the tracking numbers on the checks.

Thursday, April 10, 2008

Awake

Last night we received a call at 4 a.m. I had gone to bed just before 1:00 and just wanted the noise of the phone to stop. I told my husband, "prank call," but fortunately he ignored me--we have older relatives in very fragile health and get jumpy when certain people call--and picked up the phone. And then I went upstairs to get my children, then picked up the phone and made a call too. All is well, but I paid for going upstairs and couldn't sleep after from pain. I was not lucid today and it was difficult to work. I guess I'm getting old--I need more than 3 hours of sleep and even the occasional night like this doesn't sit well. At 7 I kept trying to get up but flopping back down. I took a 4-hour nap this evening, and am now ready to work or write not for a few hours but for a long time, which will leave me sleepy tomorrow.

Wednesday, April 9, 2008

Long Dark Highway

Too bad I'm not a Buddhist, given all the circuitousness of my medical journeys. I might stay more centered, and I could spend my time in the MRI machine meditating myself toward nirvana. And then a myelogram would just be another chance for spiritual mastery. I did approach my second childbirth with Zen techniques, and sometimes I have to approach pain that way. I don't think that medical procedures are typically chosen as meditative practices, however. Most of the Buddhists I know take up sitting zazen, writing, dancing, running, driving, hiking, even yoga, though that's from a different tradition. Detachment from pain, both emotional and physical, is key, and that is what I have to practice during many medical procedures. But it's not the kind of detachment that reflects the typical Cartesian mind-body split. That's Western. It's the kind of detachment that can observe pain, where you can either be swept under the waters or float on the waves. Sometimes you can't float on top of the waves, the pain's too much, but when you're swept under it's a surrender without fighting. Either way, you don't drown. You are, the pain is. You're not sure if it will end, but you're there, not floundering but being. Am. I am. Each breath. Each painful breath. Each moment.

Childbirth isn't in the same category as spine pain, by the way. It ends. It has a relatively finite start followed by a relatively finite stop, with short breaks between each contraction. Epidural? Laughter. Not to belittle birth pain. It is intense, painful, exhausting, overwhelming. Spine pain can be as severe, with no baby at the end. Or it can be lower-level but by no means low, chronic, the hands of the clock beating you down, sleep coming in the same fits and starts as in labor. You labor, but for what end?

Once I was asked to demonstrate typical labor behavior during a training for birth professionals. I sat there, quietly, holding myself, making small noises under my breath. I was dismissed as inauthentic, and someone was asked to take my place. Yet this was exactly my behavior during birth, even the first. The center can be found.

I once asked a Buddhist why, if pain leads to enlightenment, I had not yet reached it. His answer was that you can't know when you're enlightened, that one who is enlightened does not know he is enlightened, but I reject that for many reasons. I know spiritual teachers who have claimed to reach a specific stage (which I would agree with, knowing the individual character well). One of them has formed a spiritual study group in which I haven't had time to participate in a year. And though I think she has reached enlightenment, right now I also don't have the spiritual energy for spiritual teaching. So here I sit in the middle of the dark highway, unsure if I care whether I have a destination or the light of spiritual communion. We are all lonely.

I do know that I am changing. For good, for bad, I don't know. I just am. I feel that I can't process the changes quickly enough. I do know that I question myself less, trust my own judgment more, though I suppose that can lead me awry. The surgery issue right now is the exception, though much of the time I'm now staying centered about it (ironically, centered in indecision, but not particularly emotional). Otherwise the "what ifs" would paralyze me, if nothing else. Pushed to a point, I just want to be, so that I can move in any direction or in all directions.

I've taken up Kerouac's On the Road, which I've been meaning to read for years and years, especially since one of my friends is such a fan of the beats. He even looks like a beat, wild-haired, sometimes wild-eyed, a friend of all. A poet, a free thinker, a world traveler. Of course I can't really identify with the "characters" in the book, but I can identify with the wanderlust, having spent some substantial time traveling and hiking in the West. I also had someone recommend a great lesbian novel today which should be lightweight enough to read while I am neckbraced, if that happens. No heavy tomes for me.

On the medical end, the radiologist at the imaging center disagrees with Wunderkind (though WK showed us exactly which images were a problem and how the signal intensity was different and too grainy). The office staff may be able to precert the MRI elsewhere since everything has been so much worse after the epidural (a good reason for reordering). Otherwise it may be the myelo.

Monday, April 7, 2008

Wunderkind Redux

If I have to have a myelogram because of you, crazy neurologist lady, I'm not going to be happy! Forget the myelogram; I'd rather have surgery. I know that's not rational, but since people have scared the bejeezus out of me about the myelogram based on their own experiences, I'd rather not. Plus I have a needle-spine phobia inspired by a story in Good Housekeeping that I read as a child in which a woman's daughter died after a lumbar puncture. That article is where I first learned what "code blue" meant. The mother was so grief-stricken she couldn't even remember her daughter's funeral, and she learned that it wasn't the meningitis or whatever it was that killed her daughter. It was the lumbar puncture, and if she had not had it, she would have lived.

To take a step back, I mentioned what the neurologist said about most doctors not doing surgery for that level of herniation; my husband's perception as well as mine is that Wunderkind took this concern seriously. He went back to square one, reevaluating the MRIs. Wunderkind said he wanted to run one more test, and I said, "Sure...as long as it's not a myelogram," at which point he smiled and raised his eyes in a that-was-what-I-was-going-to-do way and I started sweating. To make a long story short, one view of the C5-C6 disc on the MRI is very grainy and he wants a better view pre-surgery, so for now I'm having to redo that portion of the MRI at the imaging center's expense since it was their error (two whole sheets, so it wasn't that I moved or something was wrong with all of that particular kind of image).

I can't have the Prestige disc because it's contraindicated for the osteoporosis and the giant screws probably wouldn't hold. Insurance also won't pay for it ($30,000-$40,000), which stinks for the people who could use it. The insurance companies want 10 years of data rather than 2 to 3, which is difficult to get once the clinical trials are over and insurance won't pay for it. Wunderkind doesn't have a lot of repeat surgeries for discs above and below the fusion, but the discs may continue to degenerate some over time, whether or not I have surgery, because of the degenerative disc disease issue. Wunderkind talked at length about the importance of keeping the natural spinal curve during fusion surgery so as to prevent more stress on the other vertebrae. My husband asked about the donor bone versus my own bone--donor bone is somewhat less likely to fuse and thus cause some pain, but I'm not sure I want to further weaken my hips since I've had a fracture. The donor bone would likely be much stronger than my bone, but I don't know if that would create a fusion issue. So those questions are all answered.

Now I'm worrying if Wunderkind will even do the surgery anyway since doctors have to be concerned about litigation, and the neurologist said most doctors wouldn't do the surgery. That doesn't mean she's right. This isn't her area of expertise, and she may think I'm rushing into surgery. And I am going into this fully informed. I don't think it would do me significant harm to have it fused regardless, though I recognize complications can occur, and it is actually likely to make the bladder symptoms, the hand and arm and shoulder symptoms, etc. much improved and allow me to sit up longer. If only medicine were more objective and less subjective.

I don't think this is something Wunderkind anticipated or that he thought it was an iffy situation whether to do the surgery, since he wouldn't have sent me to a neurologist that he thought would question his opinion. I think it is good for him to know about this since he's probably sending other patients to her. I don't like this metamorphosis from completely confident to completely confused.

I was working on my computer in the office, and I closed it quickly, worrying the radiology technician that I hadn't saved the open document. He said Wunderkind was once on a 7-hour flight with a lot of turbulence, so he kept having to shut the computer. Wunderkind said the following Monday that he wished there was a way to save what you were working on when you get interrupted so that you didn't lose your document--the radiology technician said, "Oh, you mean the save feature?" I guess a certain amount of absent-mindedness accompanies brilliance.

So MRI #7 Friday night and back to Wunderkind on Monday. And I may get the second opinion just to satisfy all of us. In my spare time.

Sigh...

Miss Observant

I couldn't figure out what my daughter was grumbling about yesterday in the bookstore; she was several steps ahead of me and I had stopped for just a moment. Then I saw she was trying to clear obstacles from my path and was clearly ticked that they were there. Each time I turned, she moved footstools or chairs out of the way so they'd already be clear when I wanted to move ahead. Sometimes I forget whether I am wheeling or walking (except from the different pain produced by each) until barriers remind me that I can't get where I need to go or someone reacts to me. It usually doesn't take long for someone to remind me how I move, whether I am directly accused of being drunk for walking slowly and stiffly or whether a mother pulls her toddler tighter in her lap and purses her lips as if I'm contagious, but with my kids opening doors and clearing paths, sometimes I forget a little longer.

Last week when I went into a building someone came up to me and asked if I needed help with a door. Though I didn't need help there, the offer was appreciated and in contrast to those who ignore me. One of my friends says she asks people if they need help reaching something in stores, but feels uncomfortable doing so, isn't sure if that's the right thing. I told her that's exactly the right course of action, and it would be rude for someone to respond negatively. It would be different if she was insistent about it.

My son wants to know if surgery will mean I won't have to use the scooter as much or at all. I don't know. I have read about people having reduced low back issues after C5-C6 decompression, though that wasn't the expected result. The rheumatologic/genetic issues can't be addressed with this surgery. I have my lists of questions, my fears, my what-ifs. I hold in memory the story about a man who didn't have surgery and who sneezed and became a quad and died from the trauma, the stories of people for whom risks were more than just an unlikely statistic, the stories of those for whom surgery went well, with outcomes as good or better than predicted. My symptoms aren't as severe right now--does this mean I can wait a few more years, or will they be back next week? The cognitive dissonance is kicking me down.

My mom called yesterday wanting to know if I'd scheduled surgery. No...they're closed on weekends. I haven't got the second opinion yet, though I will talk to Wunderkind again this afternoon (I really hope I don't call him that by accident). I just hope my list doesn't feel like the Spanish Inquisition to him.

Friday, April 4, 2008

Rant

What is wrong with people that they park ON THE ACCESS AISLE next to cars so far onto the ramp a wheelchair, scooter, walker can't get by? It's always done by people who can walk and who have a disability tag, though that's no excuse since I have always parked carefully for that reason, and because people may need more room to get into their vehicles. And what's the deal with motorcycles and mopeds parking on them, sometimes the only accessible route into a store or building? What about the striped lines beckons them and says, hey, park here, screw disabled people?

Cars were parked on every access ramp in one location today, too far over for me to get onto the sidewalk. And my daughter's Girl Scout leader does this every single week, making it impossible for me to get into the building.

Medical privacy

When I have googled for information on particular spine issues, the search results generally include litigation for worker's compensation cases or car accident cases, giving the victim's name directly, as well as detailed medical and personal information and information about the victim's psychological state (since having all your vertebrae crushed is apparently a sign you're insane rather than in pain). If that doesn't make the victim, or even their spouses in some cases where they have been named, unhireable for any future jobs, I don't know what would. I am horrified when I see people named in these cases. They deserve better. A pseudonym or initials can be used, as they are for other kinds of legal cases. People still have a right to medical privacy.

New computer technologies bring up other issues with medical records and privacy. While something like the MedicTag flash drive can save lives in an emergency, digitizing all medical records so that patients carry them to new physicians presents a problem: patients are no longer in control of their medical records, while physicians have more control over what is recorded and how it is interpreted. Currently, patients have the option of handing over labwork and radiology and letting a new physician draw his or her own conclusions. People who have a number of health problems and who hand over all their files on CD are going to be labeled as problem patients when they come into a new office. I find it better when I control the rate of information with a new specialist; my disorders, even the heart rate issue, are quantifiable, documented, and reproducible, but when I let everything be known early on, I am disbelieved. It's better to have each physician see on his or her own, bit by bit. They also learn over time that I am resistant to medical procedures and interventions and will delay seeking care long past when others would.

Further, digitizing records will make it easier for insurance companies to micromanage physicians. If the information is readily accessible on disc, an insurance company can more easily argue against using a particular treatment for a particular illness, even when discussion between the physician and patient indicated that another choice would not work. People are not machines. The body is not a machine, and different bodies respond to various drugs and courses of therapy in completely different ways.

Thursday, April 3, 2008

Second thoughts

Well, that was melodramatic (yesterday's post). I may go back and edit later.

I'm still feeling lots of doubts about spine surgery *even though I can't sit up.* I was flagging by 1:30 today. I truly don't want to go get a second opinion, and yet I keep thinking I'm not going to feel secure unless I get one. The odd situation is that if another surgeon or two disagree, who's to say the alternate opinion would be more correct? I'd still have to make a decision, or make a decision about whose way of doing the procedure is best. Even for the artificial disc, two doctors follow completely different guidelines for recovery. One encourages some slow activity even early on, though bracing is required, while the other requires complete rest for a month or more to allow fusion to take place. I may be in the latter category anyway because the fragility of my bone makes getting the fusion to take place much more challenging. I don't see an alternative at a certain point--but what do they do when the fusion or replacement disc doesn't hold? Do your bones just inevitably collapse onto themselves, with nothing to be done about it? I can't see any alternative.

This whole issue is making me neurotic. I don't like that when I felt settled about it.

The neurologist saw me bright and early in the morning, when I could walk into the building on my own. The spine doctor last saw me late afternoon, when I have to lie down to wait. The neurologist also questioned my genetic diagnoses, asking who had diagnosed them and why they would suspect that. No one else has done that, though I recognize that doctors often do disagree on diagnoses. I think maybe checking off so much on my medical history was a bad thing to do. And she didn't get that I was worse after the epidural. Despite her nice demeanor, I'm feeling more and more negative about her.

In other news, my seven-year-old signed himself up for a gmail account, so apparently we're not quite as vigilant as we thought we were, and he broke some rules, though it looks like he's not emailed anyone. I am not sure how he even knows about gmail.

Wednesday, April 2, 2008

The hardest part: guilt and activism

Despite my often strident tone in my blog, I feel guilty for making appeals and requests for change, even for what's fair and legally required. I realized that this is part of the system, that the tone of some people's responses to me is rude in order to produce guilt for questioning what's unfair. As a friend says, as soon as a woman complains, that makes her a bitch, deemphasizing the problem that's pointed out and emphasizing the person bringing the complaint. Thus when I complain I can't get into a building or that certain policies or nonaccommodation can destroy my scooter or harm me, people get angry with me. They really get hostile. They claim they don't have to follow ADA.

Part of my discomfort with activism is that I haven't found my true center. I asked myself recently whether I am a follower of Malcolm X, who advocated change by any means necessary, or a follower of Martin Luther King, who advocated direct action. I realized that in my perceptions that others won't be supportive, my fears that I'd be arrested for holding up a real protest sign or protesting even where policies say it's allowed, my fears that no one would join me, I am not even a follower of King yet. At work, I am stuck at the negotiation and legalities stage. People refuse to negotiate or go back on what they said, in fact lying about what the policies have been for the past ten years and immediately changing them at whim to something even more unfair, I can only assume as retaliation. Pain and physical limitation, as well as humiliation, keep me from doing as much as I should. The problem is that I keep asking myself whether I should advocate. Or whether I should just take the unfairness or, alternatively, quit.

These days people aren't advocates or protesters. Am I willing to be arrested to protest a more major example of discrimination? Honestly, not really, especially without the help and support of others protesting with me. What about my children, what about future job chances? There is still a part of me that remains hopeful about improvement of my health. I think I would protest for other causes, but not for my own.

I stand corrected about my workplace in general being hostile; I have to temper that with recognition for those who do help. Yesterday when I went into a particular space it had been rearranged in a way that had to take substantial planning, effort, and physical labor for something that's a minor inconvenience. Though nothing was said about the reason for the change, I know why, and it's nice that others saw the difficulty without me mentioning it. And it will help others too. This isn't something I asked for, so besides gratitude I also felt embarrassment, worrying that others think I've asked for an additional change for something that is inconvenient daily but in the scheme of things small. This is what's also difficult for me: accepting that kind of gift without feeling guilty and embarrassed, especially if I don't stay.

And others are going to bat for me and other people with disabilities through pressing a policy change and publicizing the issue. A writer present at a committee meeting last night showed more interest in this situation than in the primary goals for the meeting and may contact me. I'm not sure about all the attention and feel uncomfortable with it, but whether or not I am able to continue to work over time or work where I do, I hope that a change is made for other employees with disabilities to make their lives easier.

My employer claims it follows the law in upholding a policy that unfairly impacts people with disabilities. Segregationists followed the law. Hitler followed the law, as Martin Luther King pointed out. This is the same pattern that's held through history, using the law and narrow readings of it to defend what's not defensible. But my employer follows only some of the disability laws; it ignores others. They know they're not in compliance. They know it. But they state that they are so they can feign ignorance. They believe that following some of the ADA regulations means that they don't have to meet requests for reasonable, and in this case, cost-free accommodation that harms no one, even as they ignore other ADA regulations, even for additions and reconstruction.

The past few days show me that there are invisible others who support me. I also heard someone asked,"What about people with disabilities?" at a meeting in regards to a new policy that will adversely affect us more than other groups. Though the response to her was hostile, it's nice that she and others are thinking and advocating.

Nevertheless, I noticed today that I don't even sing anymore. Even caged birds should sing. I tried today and noticed it didn't even feel like my voice. I hear others' voices resonate; you can tell who sings, who's a musician, even amateurly. I'm not sure how much of this is from physical pain--probably most of it--and how much from life circumstances, but something's got to change. I've been told by others always to take the more difficult path when there's a choice, that I should confront my fears. Again, I'm not so sure I should in the future or that I should have in the past. I feel like quitting. That feels like the least painful option. And remembering the pain versus the ease of heart and spirit that would follow, being able to sing again, might overcome regret.

Tuesday, April 1, 2008

What keeps me awake at night

11:45 p.m., in a darkened bedroom.
Me: Did you take the snake out?
Him: Ummm...
Me: Because I don't want it loose.
Him: I don't know.
Me: Is the snake in the house?
Him: Yes. It's fine.
Me: Those things can get through small spaces. I don't want to find out that the airholes are too big.
Him: It's fine.
Me: Take the snake outside! At least put it in the garage.

Periodically my husband rescues critters while he's mowing, putting them in a container for the kids to see, and frees them later, after the yardwork is done. There have been frogs, toads, and chameleons that turn brown at the tips of their noses and the tips of their tails first, while their bodies are still green.

We weren't sure about this particular snake, whether it was poisonous or not, so we saved it to let it loose near a pond (away from others) the next day.

The three of you still left reading may find it funny that my kids bought the new Google Books scratch and sniff prank wholesale, with my son actually claiming to smell the chocolate through the computer screen. My daughter said, "smells minty," as I smacked my spearmint gum loudly behind her head. This after going through the Google Mars expedition application. Oh what fun it is to have children around. I almost convinced my son once that the world was once in black and white, just like in old movies.

While the rest of the world discovered 12 hours ago that youtube's featured videos for the day all include Rick Astley, what they didn't discover is that Rick Astley was my teenage crush (at which my daughter scoffed and said he looked silly, and I pretended I wasn't defensive). I am guessing that the remaining three readers can no longer respect me, but anyway...he's still making albums.