Saturday, January 31, 2009

Let's Pull Out All the Stops

Let's start with the beliefs.
-People with disabilities or severe illness did something bad, and God is punishing them.
-Parents are punished for their bad deeds through their child's illness or disability.
-People can cure themselves through positivity and prayer.
-People who have not healed themselves demonstrate a lack of faith or adequate religious/spiritual commitment.
-People with disabilities harmed others in previous lifetimes (or in this one) and must both learn and repay their spiritual debts through the process of karma.
-We all determine what happens to us through our thoughts--their positivity or negativity--and are responsible for all outcomes. Anything we can dream we can be. We are also responsible for the bad things that happen to us and any patterns of ill health that emerge in our lives.
-Everyone needs a church family and regular church attendance to cultivate spirituality and to support us during crisis (even if we're too ill to attend).
-God is "testing" us by making us ill.

I have drawn here from Christianity, Buddhism, and new age spirituality, and there is considerable overlap among them. These particular expressions are based in superstition and prejudice, not in faith or in science. Such notions not only persist, but they become more prevalent. Books and television shows (Oprah) promise our salvation if only we set our thinking straight and find the secret prayer. And people will keep searching, reading more books and attending more workshops, not for contemplation, not for spirit, but to find the "answers." Like Gatsby chasing after the green light, the walking well search for that elusive key that will grant them happiness, wealth, and the perfect job. And in accordance with the stroke of luck that makes them different, superior, even chosen to spread the word, they take to the streets and preach to the unconverted.

How do we recognize the unconverted? Who are they? We. We who are marked by illness or disability. While other people may have terrible misfortunes bundled up inside, physical disability in particular marks us as unfortunates in need, or in the case of karma, sinners or criminals. In other religions, we are untouchables. Regardless of where we go, we are often judged.

How do we respect others' religious beliefs while not compromising our own spiritual integrity or participating in our own oppression? Or do we need to? Ten years ago the rite of "female circumcision" attracted the attention of the press. Female circumcision was considered by some cultures and tribes to be a way to preserve female purity and virginity. Both Muslims and Christians participated, which should have undercut the notion that the practice was a religious mandate. But religious mandate it appeared to be, with women asked to harm their own children or let them be harmed. One midwife later admitted that she faked the rituals in her own tribe. The question for many was how to stop a practice that harmed women and girls for the long term, injuring them psychologically and physically, resulting in fistulas that left them incontinent, too scarred to release menstrual blood, or injured enough to cause severe complications or death during childbirth. Their labia removed or sewed shut, their clitorises cut or excised, their vaginas sewed tight, these women's enjoyment of sex was out of the question. Disability, sometimes severe from urogenital and even bowel dysfunction, was imposed.

The World Health Organization, women's rights groups, western physicians, and victims or would-be victims condemned female genital mutilation (FGM), and under pressure, many groups abandoned the practice. Just as a western physician should not be asked to participate in or condone a ritual act of female genital mutilation, we cannot be asked to uphold beliefs and practices that oppress people on the basis of disability.

Religion has too often been used to support oppression on the basis of race, gender, and sexual preference, as well as disability. Religion is no excuse for immorality. Fear and social conditioning are no excuse for crime. Failure to think is no excuse for prejudice.

What do I believe? I believe Jesus was a liberal, a radical, a hippie. Jesus ignored rules that were in their spirit wrong, teaching us by example. He plucked grains gleefully on the Sabbath. He dumped over tables in the temple. He practiced civil disobedience. Christians who believe that God punishes us with illness or disability forget what he said as a matter of convenience. To those who insisted a blind man or his parents must have sinned, Jesus said, "Neither this man nor his parents sinned; he was born blind so that God's works might be revealed in him" (John 9.3). I've never heard that preached.

The syncretic new agers who believe the Bible promises us riches and that a re-alignment of spirit will restore health forget that Jesus said, "for to those who have, more will be given, and they will have an abundance; but for those who have nothing, even what they have will be taken away" (Matthew 13.12). We lose more in health, but we gain in spiritual growth--this is our abundance. There's an inverse relationship that some miss. I've tried to explain this idea to some people, the ones who think and maybe do wish themselves into material abundance and have good health, and they miss the point, congratulating themselves and judging those who, in their opinion, "lose out." In their minds, Jesus rewards the wealthy because they're virtuous, punishes the poor because they're poor. How 19th century. How colonialist.

Negative thinking, in this bestselling world view, creates our problems; we're at fault for our oppression. "Blessed are the poor in spirit, for theirs is the kingdom of heaven. . . .Blessed are the meek, for they will inherit the earth" (Matthew 5)--what book are these people reading? What the bleep do we know?

I believe that Taoism can accommodate disability. I believe that Buddhism can allow for spiritual growth through reincarnation without implying that visible disability indicates past wrongs, wrongs so dire that people must sometimes punish us in a paradoxical neverending cycle of deed-misdeed that requires too many to do wrong. In a cycle that blames the victim for rape, segregation, genocide, illness, accident. I am told by someone living in a Buddhist country that easterners do not take the idea of illness and karma in the same way, so seriously, as western converts do, and yet I read only recently that Cambodian mothers are ostracized for disability. Somehow I still think that religions can accommodate and better support people with disability.

What do I believe? In science, in genetics, in accidents or coincidence. In considering spirit. In doing away with superstitions and antiquated laws that harm or limit our potential for growth. If, beyond that, I sound confused, sometimes I am. But I'd rather be confused than be certain, so certain.

Friday, January 30, 2009

Heroes and Anitheroes: Minna's Getting Healthcare and School Access in the U.S.

Today Elizabeth writes about heroes (Screw Bronze!: A type of hero: a brush with greatness.). We've all needed heroes at times, someone who would at least try to speak up on our behalf or do what's right despite the personal cost. We need to remind ourselves to be heroes too, not to be complacent, not to let someone else do the important work of the world, the important work of the spirit.

I was very happy to read this evening at Media-dis-n-Dat, Minna Mettinen-Kekalainen will be getting home health care, thanks to the lengthy phone negotiations of a woman named France Gelinas. France is one of my heroes. Minna had been turned down not only by her own home health agency, but by two others, setting a bad precedent for the care of other people in difficult circumstances. We need more women and men like France Gelinas, people who will push until others do what is right.

According to another story at Media-dis-n-Dat, people in a Connecticut school district also need more France Gelinases. A local school has received a report that it needs to be brought into compliance with ADA. School officials balk at making any but the most basic changes, such as painting the disability parking spots, saying they can't afford even the initial $10,000 to $15,000 fee to bring in an architect. So I did some research. Fermi High School, the school in question, is in Enfield, Connecticut, a town of 45,000. The average household income in Enfield is $52,000. So on average, homeowners might have to pay about $1.00 or $1.50 for a family, or $.25 to $.30 per person for this architect. Given the size of the town, the high school auditorium and classrooms are likely to serve multiple functions and as a center of the community. Giving access to people with disabilities is imperative. In education above almost all else, we need access. Education. It's where we receive our life opportunities and can unlearn our prejudices, even parents and administrators and school board members.

While the administrators and board state the needed changes may cost millions of dollars, I think this is most likely a knee-jerk reaction based on no evidence for actual cost. In addition, the school does not have to make every restroom and every classroom accessible, according to the ADA. The administrators may misunderstand what needs to be done to bring the school into compliance. Nevertheless, it must be, whether or not the school has to raise taxes slightly or ask for state assistance. I have no question, however, that an architect can be hired and a plan developed. It's almost 20 years after ADA and it's a shame that the school is not accessible. A shame. The district officials should be ashamed, not angry. They've had 20 years to figure this out and make a plan. That's $500 a year for an architect and plan.

And if the school is so strapped for money, could some of the modifications be made through volunteer assistance, as with Habitat for Humanity? My husband and other volunteers installed our school's new playground equipment last year to save vital construction/installation funds after our 40-year old elementary school (the same age as Fermi) added a new wing (with more accessible restrooms).

What concerns me most with cases like this is the kind of hostility that accumulates against people with disabilities. It's a reminder of school segregation in the 1960s, with angry white men ignorant of how their belligerence affects young students or their parents. They're creating a hostile environment, not a welcoming one. They're balking, not worrying on behalf of students who need access. It's a matter of tone, and the tone is still hateful rather than welcoming to people with disabilities.

How would the heart change if one of these administrators had a child, a relative, a close friend with a significant disability? What does it take to soften the heart? None of us wants to be Moses trying to snake charm Pharaoh's best men.

Let us not forget that Moses had a disability.

Good News and Other News

The good news is that I can drive now and get out as I like (as long as I skip the pain med, of course). The gallbladder was inflamed, so it was necessary to have it removed. This is always good to know, that the surgery was necessary. The other news is that the liver is also inflamed, but of course we can't have it removed. Since apparently it is a duty of mine to overcome or at least struggle mightily with medical phobias, I still have to see the GI specialist, who does specialize in liver issues. I'm not overly concerned yet since the antimitochondrial antibodies test was negative, but I am surprised that the pathology report wasn't more specific.

I need a little more courage. To me, courage is like energy; expending some helps build your reserves. Challenge yourself too much and you may set yourself back, but the idea is exercising the spirit. Lynette Jennings, a home decorator, says it takes courage to paint a room red, but I've already done that, and I think painting another room red would maybe not make our home more marketable.

We went to our local Borders (yes, I got out!) to browse for a bit after the appointment. I came across a new book called Brain Storms: Surviving Catastrophic Illness, by Les Duncan. It includes some of the medical humor I've been looking for, including a chart to translate doctor speak into plain language. Examples, from memory:
"You'll need to follow up with a specialist" = "I have no idea what's wrong with you."
"Please schedule a follow-up appointment" = "I want a 5-disc CD player added."
"I've got good news and bad news" = "I've got bad news."

I do say "other news" rather than "bad news" here since I don't know the whole story yet and I'm probably okay. What I do know is I'm so tired of the medical merry-go-round. I'm still thinking it may be from gallbladder or pain meds. I've been tested for all kinds of potential causes for liver issues and nothing so far.

Wednesday, January 28, 2009

Bitterness Is a Bad Pill

So I am not allowed to drive yet and have thus only been out of the house only once, briefly, in the past two weeks. My husband just went out with the kids. Did he think to take me? No.

They went to the craft store. No, nothing I would like there, definitely not...grrrr...

Friday, January 23, 2009

Activist Kick: More on Cheney's Wheelchair Use

Justice for All has an action alert on its website, complete with contact information, to protest MSNBC journalist Chris Matthew's description of Cheney's wheelchair as a negative metaphor.

See http://jfactivist.typepad.com/jfactivist/2009/01/action-alert-let-msnbcs-matthews-know-people-in-wheelchairs-are-not-pathetic-or-lowly.html

One year ago I started using my mobility scooter. Although I encountered physical barriers and attitudinal barriers immediately, the scooter allowed me to do quite a lot that was completely off limits to me in the previous 5 months. I was no longer housebound. It brought me joy. How could it be negative?

That the jokes and jabs about Cheney's wheelchair spilled out of people so quickly and automatically indicates how deeply ingrained such prejudices are. While people claim not to mean harm, their prejudice slides on out, to which we have the right to say, "excuse me, your prejudice is showing."

Little wonder that so many with disabilities refuse to self identify and that we see people who can't walk any distance at all who refuse to use wheelchairs. They'd rather be imprisoned than have mobility. It's their internalized prejudice that keeps them from using a wheelchair or identifying as disabled.

Why We Can't Be Complacent II

If you haven't heard about Minna, a Canadian woman with ALS who has been denied basic care, please read her story as told by a journalist.

For ways you can help, see http://reunifygally.wordpress.com/2009/01/21/save-minna/.

As I know from reading Elizabeth's blog, there seem to be few checks on abuses in home health care in Canada.

Let's take a few minutes and help rectify the situation for everyone.

Why is she not receiving care? She made a complaint that the nurses were not following physician orders. So the agency is denying her care and sending a cautionary message to people with disabilities that they don't have a right to free speech or protest. Want to speak up? Think again, the Canadian health care system seems to say.

Why We Can't Be Complacent

Visual description: a black seclusion box with a lock. The box is covered with chalkboard material and children's scribbles in colored chalk: the words "summer time," a picture of a sun, a butterfly, and a colored flower. The front of the box has a small glass window. Image from the Disability Law and Advocacy Center of Tennessee.

From Patricia E. Bauer:
A new Tennessee state law enacted this month establishes stricter rules for the use of restraint or isolation as discipline methods in special education classrooms. A report released last week by the National Disability Rights Network highlighted the use of plywood “seclusion boxes” in a Tennessee county.

In Sumner County, children were being isolated in 4-by-3½-foot plywood boxes that were placed in 12 schools. The boxes were dismantled after a parent notified the state’s Disability Law and Advocacy Center.

Click here for further information from the Disability Law and Advocacy Center and from Media Dis-n-Dat.

These children must have indeed dreamed of summer, as revealed in their chalk drawings. While the schools claimed to use these standing boxes for storage, why were they all empty and why were the walls carpeted and the floors tiled? Apparently investigation determined otherwise.

Were there even airholes?

Thursday, January 22, 2009

Inauguration

My hope with Dick Cheney's use of a wheelchair was that it would draw attention to the lack of access, that someone who's been in a position of power, if not the media, would recognize and comment upon such issues. Not a chance. In fact, many people missed the point.

Those who denigrate Cheney for using a wheelchair also miss the fact that Obama's father-in-law used a wheelchair because of MS. Enjoy, for example, this lovely cartoon, depicting Cheney moving down an escalator or ramp and Obama moving up, while stating that the wheelchair is a metaphor: http://www.taylormarsh.com/archives_view.php?id=28992

The generalizations made equating the use of a wheelchair to his mistakes and evils are wrong in spirit. What if we used someone's gender or skin color as a metaphor for wrongdoing? Think about it. People have done so in the past--is this the level of prejudice you wish to reflect to the world?

I'm also tired of people saying he can't possibly have hurt his back enough by moving a box of books. I've been left bedridden by pulling a very small wheeling suitcase through an airport and then sitting in an airplane seat for a few hours, though I had help lifting the suitcase at all points. My pain was so severe then that I would have required a wheelchair to walk further than the bed to the bathroom. It took me quite a long time to get there.

But really, again, people miss the point. What business is it of ours how he hurt himself? Why do people think they have a right to know? Everyone has a right to medical privacy.

People let their politics override other ethics. Wheelchairs are not punishment. People who use them are not angels, as some stereotypes and media depictions would have it, nor demons. We are people.

Saturday, January 17, 2009

Updates

I am recovering well at home. The surgeon is most compassionate and a good choice. Some of the nurses didn't get some of the disability/pain issues, but that's over with and I'm home. There was a lot of pain the day of the surgery but that's diminished and I can cope with this pretty well (with extra pain meds, of course). Much easier than the spine surgery!

Tuesday, January 13, 2009

Good News

The antimitochondrial antibodies test came back negative, meaning it's highly unlikely I have primary biliary cirrhosis. I still have to get a biopsy but I think the liver issues came from NSAIDs and pain medicine at normal doses, plus the gallbladder issue. I look forward to feeling better soon. I need no further health issues!

Thursday, January 8, 2009

Why I Haven't Been Blogging

Just updates here.

It turns out that people with disabilities can have gallbladder problems too. No surprise to us, but to some doctors... I'll be having my gallbladder out next Thursday and a liver biopsy at the same time. So my abdominal pain is about to end. Tell me, why is it women (the urgent care doc and the surgeon) listen and do the right tests and a lot of men (internist and ER doc) just think we are just inventing issues?

I ended up at the urgent care clinic on December 19 with continuing abdominal pain and fever, was able to get a HIDA scan on Christmas Eve, then have had the usual delays in getting results and appointments because of the holidays. The urgent care doctor was excellent--very sharp--and I wish did primary care. One piece of not so good news is that she thinks primary biliary cirrhosis, an autoimmune disorder, is a possibility for me, and she said that's serious and not really treatable (not quite true). She impressed on me the need to see a GI specialist, but the earliest appointment was a month out from that day, with any biopsy to be done later. With the gallbladder issues concurrent, the surgeon can take care of the biopsy so I don't have to do it separately and much later (that appointment will be moved back because of surgery recovery). The rheumatologist knows about all this (he had been urging me to see a liver or GI specialist) and has ordered the antimitochondrial antibodies test.

The cardiologist agreed that my blood pressure issue is not from a general cardiac problem but rather from gallbladder or from the steroid injections the week before. It measured low in his office (vindicated). We can try something to bring it up if we need, but neither of us wants to add anything new to the mix. A small amount of atenolol's still necessary for the heart rate.

I haven't really wanted to deal with discussing the liver issue so have just kind of shut down for a bit in terms of blogging and talking to others. Although this could account for all the other autoimmune issues I've been having as well, I remain hopeful that removing the gallbladder will drop my liver enzymes to normal and that maybe everything else is fine or an anomaly. I have gone off all drugs that metabolize through liver except 1 to 1 1/2 doses of hydrocodone a day (at 10/325, that's about one tylenol for the liver) and have gone back to half an atenolol most of the time. I even went off Zyrtec-D, which in the past I would have fought tooth and claw for if I were in some survivor-like apocalyptic situation. I'd still like it, but...my liver counts are high. In an unfriendly way. And Nexium and arthritis drugs. Frankly, I'm feeling a little desperate when I consider lack of pain control options for the long term. As long as things don't get worse and I can take something, use the scooter, and get adequate help, I can do okay.

I also had a rhizotomy on December 23, which the pain management doctor agreed to do in an attempt to reduce my pain and my need for pain medicines, given the liver problem. It doesn't have a high success rate, but he gave it a try. I apparently had more L5 pain than I thought, but the SI joints still hurt a lot sometimes.

My dad was in the hospital with heart problems and a close call but is now home and doing better than before. I was getting concerned--he didn't look good and was having problems that would send most people to urgent care or something rather than waiting it out for a few weeks until a regular doctor's appointment--and an immediate admit to the hospital.

I have been able to enjoy a lot of time with the kids and extended family during the holidays and wish everyone were home again more.

I talked to my counselor about applying for disability (rather she suggested it). I just don't want to admit that I can't work. That I can't work today is fine, that I can't work next month or the next or the next is difficult. I know I can go back off disability but it's a big mental step to take, even though we need the extra income. We also had to talk about some of my doctors, because I can feel upset about the experience of dealing with some of them.

Three doctors' appointments next week, then surgery. Surely I can ride this through the next few weeks and feel better after that. It will be pleasant once I don't feel so queasy every night.