From Where I'm Sitting

Encouragement for the Lame

2010-08-06T14:05:00.001-05:00

Rom 8:18 For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us. 19 For the creation waits with eager longing for the revealing of the sons of God. 20 For the creation was subjected to futility, not willingly, but because of him who subjected it, in hope 21 that the creation itself will be set free from its bondage to corruption and obtain the freedom of the glory of the children of God. 22 For we know that the whole creation has been groaning together in the pains of childbirth until now. 23 And not only the creation, but we ourselves, who have the firstfruits of the Spirit, groan inwardly as we wait eagerly for adoption as sons, the redemption of our bodies. 24 For in this hope we were saved. Now hope that is seen is not hope. For who hopes for what he sees? 25 But if we hope for what we do not see, we wait for it with patience.

1Cor 15:36 What you sow does not come to life unless it dies. 37 And what you sow is not the body that is to be, but a bare kernel, perhaps of wheat or of some other grain. 38 But God gives it a body as he has chosen, and to each kind of seed its own body. 39 For not all flesh is the same, but there is one kind for humans, another for animals, another for birds, and another for fish. 40 There are heavenly bodies and earthly bodies, but the glory of the heavenly is of one kind, and the glory of the earthly is of another. 41 There is one glory of the sun, and another glory of the moon, and another glory of the stars; for star differs from star in glory. 42 So is it with the resurrection of the dead. What is sown is perishable; what is raised is imperishable. 43 It is sown in dishonor; it is raised in glory. It is sown in weakness; it is raised in power. 44 It is sown a natural body; it is raised a spiritual body.

2 Cor 4:16 So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. 17 For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, 18 as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal. 5:1 For we know that if the tent that is our earthly home is destroyed, we have a building from God, a house not made with hands, eternal in the heavens. 2 For in this tent we groan, longing to put on our heavenly dwelling, 3 if indeed by putting it on we may not be found naked. 4 For while we are still in this tent, we groan, being burdened—not that we would be unclothed, but that we would be further clothed, so that what is mortal may be swallowed up by life. 5 He who has prepared us for this very thing is God, who has given us the Spirit as a guarantee. 6 So we are always of good courage. We know that while we are at home in the body we are away from the Lord, 7 for we walk by faith, not by sight. 8 Yes, we are of good courage, and we would rather be away from the body and at home with the Lord. 9 So whether we are at home or away, we make it our aim to please him.

Inspired by God, these words were all penned by Paul, a man who's physical suffering was almost supernatural, he was thought dead and thrown in the morgue a few times. So both you and I can take him seriously when he talks. He was a varsity sufferer, I am merely JV.

These bodies we are in, they aren't the final product. They are just acorns. Acorns are small, plentiful, and worthless to everyone but the squirrels. In the right season, we walk over hundreds of them a week, crushing them beneath our feet. But a few acorns grow into the final product, the tree. And some of those trees grow to be hundreds of feet tall. And those trees are large, prominent, and of great value. No mere human could squash them, they are majestic and towering. But an acorn doesn't just become a tree by magic. It gets cracked, starts to break, sinks into the ground, and the outer shell rots and is torn apart by the life growing inside it. By the time the first shoots of leaves are growing, the acorn is gone, used up, destroyed. But the life that was hidden inside of it is growing exponentially, processing light and CO2 into oxygen, and making the planet a place where humans can breathe.

Our bodies are like that, just acorns. We too have the capacity to grow into something so much larger, but the acorn has to be broken, rot, and ultimately be destroyed. It is no more unnatural than a mother screaming during childbirth. That knowledge doesn't make the pain less, but it gives us hope. If we love and trust in Jesus, the image of the invisible God, then our sin is being killed and our spirits given new life. That new life will quickly expand past the walls of our acorn, and that hurts, but it isn't the end. It is only the beginning.

So be a good steward of your health, surely, but remember that it is temporary. Losing it isn't the end of the world, it is just a part of the process. After you have satisfied the bounds of being responsible, if you aren't healthy, it is time to learn to follow Jesus in this new stage of the process. And oh, how good the end of that process is!

Micah 4:6 In that day, declares the Lord,
I will assemble the lame
and gather those who have been driven away
and those whom I have afflicted;
7 and the lame I will make the remnant,
and those who were cast off, a strong nation;
and the Lord will reign over them in Mount Zion
from this time forth and forevermore.

Zeph 3:17 The Lord your God is in your midst,
a mighty one who will save;
he will rejoice over you with gladness;
he will quiet you by his love;
he will exult over you with loud singing.
18 I will gather those of you who mourn for the festival,
so that you will no longer suffer reproach.
19 Behold, at that time I will deal
with all your oppressors.
And I will save the lame
and gather the outcast,
and I will change their shame into praise
and renown in all the earth.

What is your cage doing to you?

2010-07-19T22:23:00.002-05:00

http://www.eurekalert.org/pub_releases/2010-07/uocd-rfm071610.php

The person who posted this to the Motor Neuron Disease boards followed the link with this quote:

"It doesn't only affect us."

I am generally a very "social model" of disability kind of person, but sometimes it fails us. It fails us when we can't do things a different way anymore, when we simply can't do them at all. What the poster was referring to ultimately is being "locked in”, the point that all connection to the outside world ends.

90% of locked in people experience brain death in short order. I am working with a man a little older than me at a local nursing home, and he has been in that state for 4 years. He isn't quite locked in by medical standards, but lack of any kind of occupational therapy has denied him the use of his remaining movement - some level of blinking and a right finger twitch, a small ability to move his head to the right. He is still in there, and I am in awe of his mental stamina. He makes his high effort, small head movement when a pretty lady walks by or one teases him that she has lost weight. He opens his eye widely when dad asks him if he wants to try our newest contraption. We are making progress, and we may have real yes\no\maybe communication this very week! It is a great mystery, what he wants, what he likes, what kind of person he has become. I look forward to really meeting him.

I know that having my communication limited has changed how I think, not just how I express my thought. I think of things to say that didn't come to mind before, things pre-structured to get a positive response with few words. Conversely, I have inner monologues that are new to my thought life, unfiltered for sharing with others. They are the thoughts of a solitary person, even though I live in a bustling house. That is what my cage is doing to me.

10 years

2010-06-19T12:05:00.000-05:00

Ten years ago, I recovered from a dissociative fugue. It was not a perfectly classical one, but an MD felt that was the best label so I'll stick with that. Having read about them, it seems mine was less acute but more drawn out than usual, and I wonder if I would have stayed where I was if I hadn't been having an exascerbation that paralyzed me at the same time. To this day I don't really understand it all very well, but what I do know is that it was my ticket to a second shot at life. I don't remember what happened before it well, nor do I have a great handle on what happened during it. In a very serious way, I started this life just ten years ago on a foundation built with scraps of a former life, the personality of the life before the fugue, a relationship with God that existed in all three states of being, and the social life I woke up in. I am now ten years old, and what a decade it has been!

There were first a lot of complications to handle. I woke up 9 months after I "left". Those first days are a haze of trying to integrate old memories and personality with current reality. I can't say that it went perfectly smoothly. From what everyone said at the time I was shy, pliable, and reticent during the fugue, and my natural personality is quite the opposite. Some of the friends I woke up to having took that very well, but for some it was hard to take. I had begun dating during the fugue, my first boyfriend, and the relationship didn't survive my recovery. I certainly don't blame him, and I can happily report that after getting to know me for real we got back together and after years of on and off dating we married in 2007. My gaming group was my main social outlet, and they were a tremendous help. They gave me a new nickname to go by and straightened out a lot of my confusion. I adopted many of their mannerisms and was strongly influenced by their attitudes. They were like elder siblings to me in a time of great need. Our D&D game was the most stable thing in my life at the time, and it gave me a life long love of the tabletop RPG. To this day we game a day or two a week.

During my downtime I had flunked a semester of college, pure 0.0 gpa. School was something I was very good at in the old days, but it never figured prominently in my new life. I had also taken and done well on a civil service test, and a few weeks after my recovery started I began a job at the IRS. I tried one more semester the next year, but it didn't go well for a number of reasons. These days I am highly self-educated and world events aware, and I am happier I spent those years working instead of at college. I got a lot out of those life experiences, and progressive disability was quickly destroying those opportunities for me.

I worked until I couldn't, then did it some more and caused permanent damage. I did the same thing with walking. After a long, dark summer I got smart about living with disability. I became a wheelchair user, got good at it, and had a great time while the physical ability to do so lasted. I also dug deep into the art of cooking, got married, good times.

Now I am still making the most of every day, but I am doing it from a powerchair and often with a speech device. It is still a good life and I am enjoying it. It is hard to describe what all I do with my days, but they are pretty full and very unusual. Banal days are rare, I find myself talking to or helping the oddest of folk. There is a lot of adventure to my life. God has been very good to me, and I know him better and deeper than I ever have. I know I was a christian before the fugue, but just barely, and a true understanding of the gospel I seriously lacked. That has been filled in now, and it colors every aspect of my life.

Most people don't get the kind of second chance I did. I deeply appreciate it, and take it as a gift from heaven. I was hopeless and empty beforehand, and my current life is abundant indeed.

Distilling the Cry of my Heart

2010-06-05T19:54:00.000-05:00

As my disease progression has gone bulbar, I am losing my ability to speak. It started with my ability to sing, and now if I talk too much or too loudly I wear out my voice very quickly. It is a philosophically interesting journey. The cliche is "talk is cheap“, and it certainly used to be. I am downright garrulous, and I have yakked late into the night about the most trivial of topics. I shudder to think how many hours I have spent comparing Star Trek series, D&D classes, or debating the best theoretical voting system.

Talk is no longer cheap, but instead priced fairly high. I have to think about how worthwhile a comment is, and like internet posting, it results in a lot of self-censorship. In the meantime, I am setting up a speech device and working on voice banking. Voice banking is the process of recording yourself saying things so that you can incorporate it into electronic speech. It seems simple enough at first glance, but then you realize you are going to be stuck with this collection for the rest of your life! What will you desperately want to say in your own voice in 5 years? 10 years? Does a recorded "I love you" convey more genuine emotion than spontaneously synthesized speech or will it just be repetitious?

Setting up a speech device also makes you divide your life into categories of prewritten phrases. Some serve two functions: "Faith!" could be exclaimed as an answer to a sunday school question or to alert my sister of something. Most things, however, are situation specific. How much work you put in ahead of time to each one is a very serious priority decision. Talkers are impatient and will often change the topic before you are able to type an in depth response. What should you be prepared to say well?

What I once took for granted...

2010-05-10T15:27:00.000-05:00

It feels like a dream now, but there was once a time when I was able to eat a wide range of foods. Eating was pleasurable, and I felt better at the completion than I did at the start. Never did I imagine the day when eating would become an uncomfortable, dispiriting chore. I wish now that I had taken the time to appreciate it then.

Xena, Warrior Princess

2010-03-09T17:10:00.001-05:00

I just finished watching the full show in order, thanks to Netflix and still being stuck in bed until I get a powerchair. It was surprisingly gratifying on a number of levels. There is an underlying consistency to its alternative myths, though its cosmology is full of holes. There was even a consistent, tragic, ultimately hopeless theology if you ignore the scattered eschatology. It confronted real questions of absolute morality, even when its world had no answers. Silly episodes aside, there was character growth that included greater humility. Humiliity having been kicked out of the virtue list in favor of self-esteem, that is cheeringly old fashioned! Many geek favorites have a tendency to forget previous solutions to problems, ala Star Trek's hastily abandoned transporter ressurection technique, but the Xena team either kept using them where appropriate or explaining why they wouldn't work. I think especially of the "Pinch". It shows up in many other instances, too. They took care to bring a cleanly defined ending for the many repeat side characters, even addressing the fate of future reincarnations.

What most amazed me, given the campy nature of the show, was the ability of the character's struggles to reach my heart strings. The circumstances surrounding their internal morality conflicts were often arbitrary, but explained well enough to put you in the character's shoes to confront their choices. Those choices, whatever the enforcing macguffin, were generally timeless. Where do your rights end and another's begin? How do you confront someone who you have wronged unhypocritically if they need to be confronted for the sake of others? If you don't believe in a mediator, how do you adress a crushing load of sin? If you recognize nothing greater than yourself, how can you be transformed? What weight does the law carry when it fails to bring justice? When is meekness more effective than brute strength? How can you decide which group or individual's needs outweigh the other's?

I really appreciated the chance to watch it all. Watching in order took my enjoyment and respect for the show to a completely different level. I would love to see more long running shows that tackle a good and evil deeper than environmentalism and cultural relativism. I don't have to agree with the answer, but I am grateful when they pose the question.

Lawlessness

2010-02-11T09:44:00.003-05:00

"Come see: this is what happens when money and market, alone, guide the way we live." Timothy Egan on forclosure ridden slum suburbs (http://opinionator.blogs.nytimes.com/2010/02/10/slumburbia/)

Also in today's news: why more people die of neglect in long term care hospitals, and the perverse financial incentives that created them. (http://www.nytimes.com/2010/02/10/health/policy/10care.html?ref=health)

We can't forget the coverage of Wall Street bonuses based on the most short term of profit margins.

On a more personal note, I am reminded of a married friend that was shaken to discover he had thoughtlessly started dancing in a sexually charged manner with a lady friend, but could not see all of the quiet lines of propriety he had crossed to come to that place of trouble.

Why do I bring all this together? All of these stories are the result of letting wealth or pleasure be our barometer of progress. When all law is external to us, when our inward code is morally bankrupt or utilitarian we push through loopholes and test the borders of whatever external law to the harm of ourselves and others. This is classical Biblical lawlessness.

"For just as you once presented your members as slaves to impurity and to lawlessness leading to more lawlessness, so now present your members as slaves to righteousness leading to sanctification." Rom 6:19

Titus 2:11 For the grace of God has appeared, bringing salvation for all people, 12 training us to renounce ungodliness and worldly passions, and to live self-controlled, upright, and godly lives in the present age, 13 waiting for our blessed hope, the appearing of the glory of our great God and Savior Jesus Christ, 14 who gave himself for us to redeem us from all lawlessness and to purify for himself a people for his own possession who are zealous for good works.

"Everyone who makes a practice of sinning also practices lawlessness; sin is lawlessness." 1 John 3:4

The more I learn about the world the more wise I realize God is! When we blindly follow base desires, our iniquity (moral twistedness) destroys our perceptions of our actions so we can't even perceive the damage we do. David understood this and it inspired him to write love songs to the Law. In a society that is increasingly individualistic it is becoming clear to me that humans desperately need an outside yardstick to measure our choices by, even if it is a flawed one. (Jesus's explanation of the Torah's divorce law illustrates this well). Moral relativism crashes and breaks on the rocks of action's consequence. Civil law is external, at it's best written and administered it can only build a wall between the citizen and lawlessness. Citizens ultimately follow their personal code, whether that takes them over, under, or through that wall and the wall only can impede so well.

So where does that lead us? To me it means we must be alert to what our motivations are, what the long term effects of our choices are, and the differences between our claimed and realistic internal code.

Broken

2010-01-18T13:21:00.002-05:00

I was watching a video on the NY Times about worship services in Haiti yesterday. Many of the churches and cathedrals are piles, and most all of those that aren't are damaged enough no one is risking bringing a crowd in there yet. Instead, all around Port-au-Prince there are open air worship services, with or without seating, I guess depending on how the pews and chairs made it.

There was one particular image that really stuck out at me. It was a catholic priest leading his parishioners in a praiseful hymn. Behind him, there is a huge pile of rock with rebars sticking out of it, and before him stood two one legged men leaning on crutches. There was also a picture of a woman at a different service who's leg had been mangled in the earthquake, sitting in a wheelbarrow in her sunday best, singing.

Sometimes, oftentimes even, I forget the true state of the world. I forget that we are living in a world hit hard by the disaster of sin. Our institutions are shaky, crumbling, fragile. Our shelters are not safe, and we are living in the spiritual equivalent to sheets strung over ropes to keep the scorching sun away. We are groaning, longing for an unfallen world, yet we praise Him in hope for the day when we see it.

A Long, Cold Winter

2010-01-16T11:06:00.002-05:00

We often picture life in seasons, and rightly so. Just as nature has its spring and summer, fall and winter, each preparing for the next and leading organically into them, so do we. There are seasons where our social scene is growing, and others when even our daily bread is vanishing. Our marriages come with times of great joy and unity, and harsh storms of strife and discontent.

I am roughly in February right now. Its still hard, the cold biting wind hasn't really let up, but I can see the possibility of spring in my future. Perhaps soon even green shoots and early bloomers will appear to bolster my spirits, then I'll know I made it into March.

I have struggled with depression on and off throughout this winter, as my eyes wandered from the goodness of God's character and love for me, and to the darkness and difficulty of my circumstances. By God's grace, I'm mostly winning. Indeed, I'm surprised to find there really can be winning in this place in life.

1 Pet 4:19 Therefore let those who suffer according to God's will entrust their souls to a faithful Creator while doing good.

Entrusting is not a passive act, it is a very active thing. It is a daily, nay, hourly choice to depend on God to work things to good, to cling to him and the hope he gives, to his promises, and praise him. It is the struggle of Job, of David while running from Saul, of Nehemiah as he desperately tried to get his wall built with small armies amassing against his labor force. When we trust, bless his name in our hearts and with our lips, there is victory. Others might not see it, but Peter warrants it something of worth:

^{1 Pet 5:9} But resist him, firm in your faith, knowing that the same experiences of suffering are being accomplished by your brethren who are in the world.

Suffering well, fruitfully, faithfully is an accomplishment. It is something to strive for in the darkest and coldest winter.

Waving Across the River

2009-08-18T19:41:00.002-05:00

I find it odd that I don't remember how Irene and I became friends. On the surface, we don't have much in common. She was more than fifty years older than me, truly a Senior Saint. I am overloud, a bit rambunctious, and a little bit of a trouble maker. What started us talking? It's been years. (I'm not sure how many - 6? 4? something in that range.)

Ah, that's it! My ride to church used to sit behind her, and one week she missed the service for some reason. It feels decidedly out of place to sit next to an empty pew spot when you sit in the aisle, so I scooted up one row. We hadn't talked till then, past silly small talk and her consistent and rather undeserved praise of my singing. My attendance was spotty for a few years, than I was out of state for nearly another year, but whenever I made it back she was my anchor in the congregation. She had sitten in the same place for decades, and whenever I wandered back I would sit with her again and we would catch up. (It wasn't just me, seeing Irene's bag is how everyone in that little region knew where the were "supposed to" sit!)

When I came home, our friendship became deeper. We lived through, commiserated through, and vented through many medical hoops. She had cancer, among other things. We'd share our family victories and defeats, and she inducted me as an honorary old lady. She continued to make too much of my singing, telling people they just had to sit by us and hear. I truly don't sing that well, but it makes my heart glad that she enjoyed it so much.

She had outlived four "pew buddies" and warned me the seat was cursed. I cheekily told her that no one had ever sat where I sat, that was the advantage of the wheelchair. We sat together, talked together, worshipped God together, and hurt together almost every sunday for the last year. I missed a few, and she missed a few for the same reason. Every week she missed, another of our old lady club would let us know where she was and how she was doing. This past Sunday, for the first time in a year, she didn't know. I resolved to call Irene and check up on her, but we have a trip scheduled for Weds morning, and a million things to do and I forgot.

I got a call this evening, that she passed away this afternoon.

Irene, thank you for everything. Thank you for enthusiastically welcoming me on every church visit while I was wandering the wilderness. Thank you for taking me seriously as a young crip, most folk your age don't. Thank you for enveloping me in christian friendship, heedless of our differences in culture, background, age, and experience. This is me, waving across the Jordan. I'm immensely enriched for having been able to sit and learn from you, and I wish I had made more of the opportunity. Have a good rest, you have more than earned it. When it comes time for the resurrection, I'll be looking for you. Peace.

Diagnosis!

2009-07-13T15:05:00.002-05:00

After 15+ years, I finally have a diagnosis: Hereditary Spastic Paraplegia. It's been such a long road and it is a huge relief to finally know!

Wain!

2009-05-07T17:47:00.002-05:00

Ceelie had an encounter with rain today. We've hustled through it before, and gone out with her dad under the awning, but this was a little different. She just sat in my lap, no shoes on, with a light drizzle showering on the two of us. Her arm was snuggled around my neck as she pointed repeatedly at the sky and said inquiringly, "Wain?" The large, cold drops slowly descended on us in what must have only been a minute or two but felt like forever.

It was one of those perfect, indelible moments that you could never plan but will hopefully never forget either.

Resurrection Sunday

2009-04-13T13:55:00.002-05:00

The Lord is Risen!

My current area of daily reading is through Luke, and it has spawned more thoughts and reflections than I have wrist function. After a long time in the Torah and epistles, getting back to a gospel is amazing. While it is joyous to read about the big setup for Jesus and the "how to's" after him, it is unique to just sit and ponder his words and actions directly.

I found these words in Luke 21 to stand out today.

13-14 And it shall turn to you for a testimony. Settle [it] therefore in your hearts, not to meditate before what ye shall answer:

19 In your patience possess ye your souls.

34 And take heed to yourselves, lest at any time your hearts be overcharged with surfeiting, and drunkenness, and cares of this life...

36 Watch ye therefore, and pray always....

Jesus spoke them after his triumphant donkey ride into Jerusalem, during the days when he was preaching to huge crowds at the temple there, and in light of the persecution that would follow his death, the fall of Jerusalem to the Romans, and his return after the age of the Gentiles.

They are a really peculiar call, when you take the chapter all together. Bad stuff is coming, for the Jewish people, you personally, and lots of people who will be born in the far future. But be patient and enduring, keep seeking God in prayer. Be sober, ready, avoid escapism, but don't get too caught up with life's details either. Even if you get dragged out to testify about your faith, don't fret, I'll be there and tell you what to say and give you the boldness to say it.

There is a rest that seems to be the subtext of this entire chapter, a deeply appealing rest even in the middle of big trouble. Under it, I can hear Matt 11:28-30 "Come unto me, all that labour and are heavy laden, and I will give you rest. Take my yoke upon you, and learn of me; for I am meek and lowly in heart: and ye shall find rest unto your souls. For my yoke is easy, and my burden is light."

Paul's assurances at the end of Rom 8 could almost be from essay written on the chapter: "Who shall separate us from the love of Christ? tribulation, or distress, or persecution, or famine, or nakedness, or peril, or sword? As it is written, For thy sake we are killed all the day long; we are accounted as sheep for the slaughter. Nay, in all these things we are more than conquerors through him that loved us. For I am persuaded, that neither death, nor life, nor angels, nor principalities, nor powers, nor things present, nor things to come, Nor height, nor depth, nor any other creature, shall be able to separate us from the love of God, which is in Christ Jesus our Lord."

When the occasional worry looms over how quickly my condition is progressing, when I become so weary of just trying to manage life with rapidly encroaching disability, it is this rest that pulls me through the day.

2008

2008-12-31T13:36:00.002-05:00

Personal life:

Jan 1, 2008 was the first day Balkar was officially unemployed. (He was receiving pay although not allowed to go to work up until Dec 31, 2007.) He started his job hunt several days later, once business resumed after the holidays. In the end, it didn't matter that it turned out to be fruitless. During Easter week I was hospitalized with the worst exascerbation I've ever had, and we realized we didn't have enoughs support in Indiana to live through two of those. Three days after I was out of the hospital, we were back in NY. (Our stuff took a bit longer.)

That was the low point of the year. Balk got a job with the company that took over his old company. It took a little while to start, but Fa and Dan kept us fed while we waited. It has been a big blessing to us: it has great health benefits and decent pay.

The second half of 2008 has been good to us. We are financially back to where we were before Balk's unemployment, our household is very functional, and we are pretty happy. My health has been poor, but that is hardly unexpected or a big deal.

The World Outside:

The great illusion that everyone who does the right thing can have it all has been pierced. Health and wealthism has taken a blow, and he who has eyes can see what our world has become. Will they see? Will they care? I don't expect them too, but I do hope so.

I think this point is a chance for earthlings to see what the excesses of industry, debt, and greed have wrought us and change. I pray that in the face of these realities we will repent of our societal evils and forge a new path.

Those Days When Your Ramp Becomes a Boat

2008-05-21T12:10:00.003-05:00

This beautiful piece of art was made for me by my sister. It is the first part of a series portraying the innocence of the interactions between children and disability.

[Description: A child squats on a wheelchair ramp leading up to a patio, grasping the side, gazing perpendicular to the camera. The yard around her is replete with backyard paraphenalia. In a thought bubble on the top right, is the following poem:

I found this raft tethered
Unwanted along the shore
Its wobbly and weathered
But will sail a few times more
I followed a little fishy
Swimming, fast and free
We'll sail into the sunset
'Till Mommy comes for me

by Faith K Friedman]

Impairment and Spirituality

2008-05-20T10:30:00.005-05:00

Disclaimer: Normally I'm not much of a preacher, unless someone asks. Ryn asked :P I also apologize if it is excessively rambling.

Before I am anything else, I am a disciple of Christ. When I lost my memories and personality and my brain blew up for almost a year, I was a different person in almost every way. I forgot my friends, barely remembered my family, changed from outgoing to shy, lost my pride, lost myself. The one thing I did not lose, one of the few constants in my life at that time was his presence in my life, and my faith in him. I was not as mature a christian, I was more prickly and easier offended about my faith, but that faith never left me.

My belief in God is the lense I see the world through, it is the deepest and most immovable part of me. One of the few things that is understood about my disabilities from a medical perspective is that there is a lot of congenital involvement. Thus, to be consistent in my beliefs, I cannot come to any conclusion other than this:

God created me knowing I would be a crip.

That conclusion, which looks so simple written down, took me a decade to work through. The implications were huge, and accepting it was difficult. I tried to forget it, ignore it, deny it, but I cannot. If I believe that God is the omniscient creator of every human being, that we are fearfully and wonderfully and individually made, then God made me. He made me knowing what he was making, what would happen, and with a purpose in mind. He knew what my life would be like, and saw worth and value in it.

Some folks who have claimed to share my faith have claimed that disability is the result of sin, using sin as a word for individual misbehavior and tradition breaking. I vehemently disagree with both their conclusions and definition of sin. People aren't born disabled because of a sinful last life. We aren't bearing the misdeeds of mom or dad, nor are we being punished for what we might have done otherwise. Living a virtous life cannot save you or your children from impairment. We are simply affected, as all creatures are in one way or another, by the darkness that has taken root in both the physical and spiritual manifestations of the world.

I am not any more broken than the world I was born into. Sin is real, and its effects are evident everywhere in the corruption and entropy of our world. Huge regions of the world with no potable water are a sign of it, just as surely as the lack of caring for the people who live there by those who don't. As a people, we try to distract ourselves from the suffering around us, we blame the victims for being "lazy", we selfishly try to hold on to however much we can get, we discount the value of others. We try our best to prosper, heedless to the cost of other human's lives. Dehumanization is rampant, because without it the masses can't feel good about their lifestyle. All the while, the news anchors treat stories about thousands of Iraqis dying under occupation with the same brevity as stories about the local prom queen being arrested for scanty clothing. The world is broken.

People are born as parts of this broken world. We are born seperated from God, mired in this world, in darkness. No one makes a big deal about this congenital spiritual impairment, just as no one rants about humanity's lack of ability to fly: it is the norm. Physical and mental impairments are to be fought, resisted, driven out, but spiritual impairments are "best dealt with privately". Christ had different priorities. In fact, when he was walking this earth he healed physical and mental impairments as mere lead up miracles, to show the concept. The real work was giving a way for people to be healed of their spiritual impairment.

So where does that leave me? I've devoted myself to God, and he thinks spiritual healing is more important than physical healing. I have accepted that, and more than accepted that: I am beginning to understand. The love for my fellows (even when accompanied by grief and sorrow), empathy, patience, grace, faithfulness, and joy that he has filled me with over the years are better than hearing and walking. Society says I am the broken one, the sufferer, survivor of tragedy. I think it's the other way around. Society fears and others us because we visibly show how broken it's world really is, and force it to deal with the problems it would rather ignore.

Woot!

2008-05-20T10:20:00.001-05:00

http://news.yahoo.com/s/ap/20080520/ap_on_bi_ge/blind_money

And Now, For Something Completely Different...

2008-05-13T16:26:00.002-05:00

Speaking of a video game the other night, my sister said, "The background music is beautiful if you can hear it through the violence." That sentence has rolled around my brain for almost a full day now, for it rings so true on so many levels.

Terrible things are happening all over the world, large scale atrocities mixing with personal tradgedies and disappointments. The strong get stronger, the weak are oppressed, the global economy frantically seeks to stop drowning. And yet... just sitting with my niece on my knee, reading BADD posts out loud to her so she'll settle down and stop poking my monitor, I can hear that beautiful background music that is the little goodnesses of life. Eating a really tasty meal, enjoying a good movie, resting in my husband's embrace: all of these things may not be greater than a horrific earthquake in China, but they are beautiful, and they are important. They are both what make life livable and wonderful, despite all the flak in the air.

Life with disability is just the same. There's a lot of pain, a decent dose of humiliation, isolation, and frustration. I'm not happy I was stuck in bed yesterday morning, uncrossable feet from the medicine I needed, but if I had missed it, I would also have missed perhaps the cuddliest time I have ever had with my dog. Without my regular mobility impairment, I would not have the fun of screeching around at top speed in my 'chair. There is background music, and it is very pretty.

There are small joys everywhere, just waiting to be noticed and acknowledged. I resolve to do my best to deal with the violence as I can, and listen to the music always.

(Ironically, in the original context of my sister's quote, I could not hear the music. In fact, I couldn't hear the violence either, unless I really tried at it. I'm just trusting her that there were sounds of violence and music to be heard. Go go gadget audio processing disorder!)

BADD 2008: My Super Happy Fun Hospital Time

2008-05-01T11:45:00.005-05:00

I meant to write a post about this earlier, but it seems more appropriate to be writing this on Blogging Against Disablism Day.

I don't very often post about disablism. I encounter it in everyday life, just as we all do, but very rarely is it severe enough to merit sitting down to write about it. Most of the times it is patronizing and "positive"... "my gosh, look at her push that grocery cart!" and certainly nothing special as experiences go.

This was different.

I don't believe I've ever written online before about my subtlest and usually least impairing disability. Its complicated, so far undiagnosable, and can't be explained easily or quickly. It also doesn't affect my daily life the way my hearing or mobility problems do. It never came up in any important story or example, and complaining about being unable to drive because of it seemed needless. So I've left it out of my writings... until now.

When I was 13, I went on a volunteer trip to Fayetville, NC. Our youth group participated in the trip, the aim of which was to help poor or elderly people clean up their property, paint their houses, repair things, tear old sheds and things down. I was having a great time for the majority of the trip, but just a day or two before we went home I experienced a convulsive attack during which I was concious, completely aware, and terrified. My limbs moved without any direction by me, spasming for at least a half hour. Unaffected limbs and muscles worked normally.

The problem intensified when I went home, landing me in the hospital for about a week. The episodes were up to 3 hours long, tired out my body significantly, and aggravated a back injury from a car accident several months earlier. The pain intensified as time went on (I tore a lot of things), but the fear faded. One doctor said I was crazy, another said it might hit my heart and kill me, but the general consensus was a lack of ability to tell me anything substantive about it.

Life went on without diagnosis or treatment. I got nutrional advice on messing with my diet, and with a little research, trial, and error managed to get the episode frequency down slowly. In the meantime, I got kicked out of school for part of my freshman year. I learned to live with the problem, how to use my nonspasming muscles to toss me to the ground if I was near stairs, and went on to excel in highschool.

At 18, just before my last exam at school, I woke up paralyzed one day, head to toe. Eventually I regained the ability to speak. Again, I was brought to the hospital. Again, they had no explanation. After I fully "thawed out" they sent me home. In the following days, we discovered I was lacking chunks of memory and personality. Followup with neurologists was not fruitful. My memory came back 9 months later.

Years passed, my diet seemed to be working, and I was down to two seizure-things a year. My diapragm once spasmed and I experienced oyxgen deprivation and possibly some brain damage, but that was as life threatening as it got. My mounting mobility problems took center stage, and I chose not to worry about what I and a hundred different docs couldn't fix. Life continued this way until March of 2008.

Last month, I started having convulsive attacks every day for several days in a row. My head felt fuzzy, I wasn't thinking well, and I was having serious trouble even grocery shopping. The attacks got worse, more often, and then a few days later a new phenomenom occurred. I was taking a nap when I started to seize... except that I couldn't control unaffected limbs. After a long time, I realized that I actually had no control over my body at all really. I could lie still, but any motion I tried to make made a random twitch or kick or tic happen instead. If I tried to open my mouth, my teeth bit down. If I tried to move my arm up a little, it punched forward. I could grunt, but I couldn't get my mouth open. I wasn't scared, precisely. My fear nodes have been pretty well burned out of me. I hoped it would go away, but after an hour it hadn't. I grunted furiously until my husband woke up and called the ambulance for me.

I continued to be unable to move anything but my eyes and my head intermittently for six hours. They shot me full of drugs... they didn't help. A nurse came very occasionally to try and converse with me, and when she realized I couldn't communicate, just left. They checked on me about every two hours, and never changed my position. After a while, I figured out they didn't know I couldn't move. This was confirmed when they tried to discharge me, still unable to actually use any part of my body under the neck at all or speak. My husband and best friends had to fight them, and it took an hour and me regaining speech (still not other movement) for them to understand what was actually going on.

This hospital care was probably the worst disablism I have ever experienced. Because I was nonverbal, I wasn't given any kind of care or attention to the problems I was experiencing. I had heard of this behavior from reading the blogs of some of our autistic brethren, but it was the first time I ever had occasion to experience it first hand.

They furthermore didn't see why they had to admit a wheelchair user for being effectively paralyzed. They didn't see the difference between functionally going from being a para to a quad in a day. I had a hot little manual wheelchair, surely I was all set up for being paralyzed from the neck down at home.

When they finally came to the conclusion they had to admit me, they sent a nurse's aide. She left a little stick with a red button by the side of the gurney, and as she walked out of the room said over her shoulder, "Push that if you need help!" I was stunned... how precisely was I supposed to hit a button little button with no ability to use even my neck muscles reliably? Think at it very hard?

The first night was very hard, but I won't go on about it. I'm sure anyone who's experienced neck-down paralysis can vouch for the common feelings it inspired. I wasn't used to needing to ask for help with lots of stuff, but that's not special. The only thing worth mentioning is I that while I wasn't afraid of the paralysis-thing, I was terribly frightened I wouldn't remember my loved ones the next morning. I'm happy to say I lost no recognizable mental ability or memories from this event.

I was admitted for a full week. The first half of the week was full of slow recovery and many tests related the the problems I was experiencing. The second half of the week was more surreal. Completely confounded by my attack, the neurologists put all their effort into trying to get me able to walk. Now, I understand it must be frustrating to have a patient with a thusfar undiagnosable mobility impairment. I do, and if they were looking for connections between the two I would have been fine with it, but...

They weren't. They seemed to forget entirely that I had this lifestopping event just days earlier, and were doing pelvic MRIs and bullying the PT's about making me walk. (The PTs, for their part, were great. They asked me lots of questions, did a bunch of stretching, and declared attempting to force me to walk was as bad an idea as I knew it to be.) I was kept in the hospital for a extra day and a half so they could do tests unrelated to the reason for my admission. I left the hospital with no idea of why this new kind of attack happened, or what I could do to stop it from happening again.

Not everyone who worked at that hospital was a disablist. Some of the nurses and the nurse's aides were wonderful, just woefully undereducated in the matter of PWDs. I appreciated the chance to open their eyes up to the possibilities. But enough important people were to make an already bad experience a sore memory for a long time to come.

At the end of March, I moved back to my home state to be with my family for support. I have had another short attack since then which my family was able to handle caring for me. I'm honestly not sure what to do at this point, but between attacks things are going well. I may always wonder what would have happened, what could have been found out if I had been treated as a person instead of as a noisome problem.

Through the Mountains and the Valleys

2008-05-01T09:04:00.006-05:00

Who defines my identity? I've realized the answer is very simple: only I can. It took a while to get there, unfortunately.

The world would have you believe I'm a woman with unrealized potential, cut off from the world of success that everyone must aspire to by a tragic set of disabilities. The world would have it that my gifts are squandered on life as a home maker, and that if only my body were whole I would have "made something" of myself. For a while, I believed all of that, too. I bought into it, made it part of my identity.

The first challenge came when I realized I was not much of a woman. In fact, even before becoming comfortable with my own genderqueerness, I still never identified as a woman. I tried, but I could never feel like I was part of that world. I poked fun at both genders with wild abandon, feeling above that fray and certainly not included in the group being insulted in either case. I understood on an instinctive level testosterone wars, made friends in a way more traditionally male, and my wedding party had more guys than gals in it. (My friends largely refer to me as "a Tokah" and feel no need to define it past there, bless them.)

After that, my progressive disabilities began... progressing (go figure!) and the whole identity knot started to unravel. At the same time, I felt I was very much growing internally and that my life was becoming richer. This clashed with my former identity complex, the society imposed one, and since then its been a rocky but worthwhile trip to define myself.

A very common way to define oneself is through paid employment and education. While I am capable of short stints of it, my body hasn't cooperated for years in letting me keep a long term job or get anywhere in the academic system. I've gotten to try a lot of things, meet a lot of cool people, and get all sorts of different perspectives, but I haven't been able to keep up an out-of-the-house gig long enough to define myself by it since 2002.

For a few years, I tried the "chippy martyr" identity. The problem is, after a few years it gets stale: not just for your friends, but you as well. Its hard to get on with growing and enjoying your life when you focus on the pain, the suffering, the challenges of living with a disability all the time. (This is especially true when you have not yet admitted you have a disability!)

So, there I was, on the road to shrugging off society's definitions and finding my own. I had figured out and become comfortable with myself as a not-quite-woman, as a gamer, as a Christian, and I had finally given up on my martyr complex. This was a pretty rough time in my life, as I was slowly giving myself malnutruition by my inability to make it to my kitchen coupled with my inability to admit I needed help. I had been using crutches daily for some time, but at this point those were no longer enough. I grit my teeth, ordered a hospital-style wheelchair, and promised myself it was just for "long trips". At this point, I somehow still didn't believe I had a disability.

The day I accepted that I was disabled was the day I realized I hadn't showered in three weeks. I had been waiting for that good day where I'd feel good enough to make the step into the shower, and it hadn't come. That day, I came to understand that good day might never come again, and that I stunk. I admitted to myself, and to my family, that I in fact needed something far more stigmatized than a wheelchair in my mind: a shower chair. My pop got me one, and I had the first nice shower in a decade. That was the turnaround point, and the beginning of my assumption of disability into my identity.

To this day, it amazes me that it took so long. I have been hard of hearing all my life, and its impacted everything I do as I struggled to learn to interface with a world that speaks only in mumbles. I did identify with other people with hearing difficulties, took offense to "What did you say?" jokes, but never thought of myself as a PWD. Truly, I still mostly think of myself as the norm, and those hearing people as the weird ones. I understand intellectually that's not really true, but I can't get past that perception.

No, it was the day I ordered a shower chair that I realized I had a disability. Being a know it all and a self educator, I dove into the internet's trove of disability info. Years later, I haven't made my way out of that deep pool, but it has changed me to the core. I found that I was disabled, that it was ok... not only just ok, but something many people were proud of. I found out that I wasn't alone, that my particular disability story was all over the 'net and the globe, repeated in dozens of lives. I learned about the importance of independence and function over mimicking the AB world's way of doing things. I was infused with the knowledge I could do lots of things most people (including myself) though I coudn't, with thought, appropriate bits of equipment, and an open mind.

I found the freedom to be a crip, and with it came the freedom to be myself without embarassment. I don't have to conform to other people's views of what I should be trying to accomplish or how I should be trying to accomplish it. My friends and family have the freedom to expect help and contribution from me, as long as they're willing to work with me on enablement and open their minds a little bit. This freedom took me out of the prison of my bedroom, allowing me to care for my niece, help my buddies paint their house, go camping, and experience a wide world of activities I had once thought dead to me.

Subsuming "crip" into my identity also allowed me to see what I can contribute instead of what I can't. I will probably never be the bread earner for my family, but I put delicious meals on the table for them, write campaigns and adventures that entertain us cheaply every weekend, nourish their emotional lives, and serve as our social group's activities coordinator. I bring people together, help people through their hard times, and I can only do these things because I have perspective, empathy, and time.

When I was a teenager, I thought that at this age I would be in residency at a hospital as a doctor, a respected professional. If I were to go back and show that teenage me a bit of my current life, that teenage me would probably be incredibly disappointed in her future self. Identity is a journey, and there are no shortcuts to be had. The only way to get there is by living it.

To me, to indentify as disabled is more than just being part of a minority, more than just advocacy or even pride. (I don't dismiss advocacy, it is also incredibly important, from the smallest nudge in casual conversation to protests in the capital.) It is about a different perspective on life, a willingness to step up and learn a different way of living, traveling off of the beaten path, realize the grind, the "standard" life isn't for you and that there's nothing wrong with that.

6 Things

2008-03-17T22:58:00.002-05:00

"I would like to suggest that all of us with blogs (those that are in some way connected to disability) post 6 things about ourselves (or our disabled child or student) that are unrelated to disability." Rickismom

That sounds immensely reasonable.

1. I am both a disciple of Christ, and a member of the Disciples of Christ.
2. I am a jock.
3. I am blessed with an abundance of truly excellent friends.
4. I enjoy keeping a fairly rigid routine, and when away from home create a new comfortable routine within two days.
5. Cooking is my preferred art form.
6. I have no fashion sense.

Link

2008-02-06T10:53:00.000-05:00

http://www.denverpost.com/search/ci_5351362

There's the typical bad language use, and the article is a little old, but the story itself is very disturbing and far from unique.

Response to "Necessities"

2008-01-24T15:58:00.000-05:00

http://ballastexistenz.autistics.org/?p=477

Once again, Amanda has managed to capture so many of my past thoughts and write them down in a convincing, comprehensive way.

Over the years, I have been accused of exaggerating my symptoms, malingering, making excuses, etc. (As it turned out in the end, it was rather the obvious. I understated my symptoms, worked harder than was healthy, and made excuses for why I just had to destroy myself. ) I believe one of the reasons this is true is my generally cheerful disposition. People don't expect a chronically ill person to look happy or content. Instead, we're supposed to be dour and depressing to be around. Those who don't summarily decide a happy chronically ill person is faking are just as bad, because they decide that "brave smile" is "inspirational".

Happiness is no crime. Enjoying zooming around in my wheelchair isn't unnatural, a sign of faking, or inspirational. Its natural to feel good about traveling quickly and smoothly. Enjoying life is nothing but a good thing, and its a sad thing so many people have to step in and try and dampen that.

People are people first

2008-01-16T17:58:00.000-05:00

Ryn asks, "What should professionals know about disability?" (In my answer, I am discussing mostly medical professionals and others who have PWDs as a major part of their work load.)

They should know that disability is just a facet of a person, and makes the person who has it no less of a person. They see so many of us, you think this would become obvious that we are each an individual. It seems a given they would notice that we have a range of other characteristics and experiences that, combined with our impairments, make up our life as a whole.

And yet, in my experience this isn't generally the case. I've gotten to meet a number of new acquaintances and spend time with old friends in these last three years. The wheelchair throws them off their game, with few exceptions, but most pull through to be normal by the end of the conversation. They minority still can't look at me straight at the end, struggles with what to say, feels akward, projects akward, patronizes, remarks on everything I do as a miracle, or ignores my participation in the conversation entirely. Sadly, most of the latter group is comprised of doctors, nurses, "disability advocates" and others that should be the ones to know better.

Instead, they've been taught in their professional lives to think of us as patients, service users, or worse, people they have authority over in some way. Sometimes they get stuck thinking of us as something to be fixed, and not someone to become acquainted with. Too many times, they can't break the mold outside work, and to talk to most of them at work is an exercise in frustration.

What about other professionals?

Too many assume us to be incompetent, and too few take no time to find out what we can do and how we want to do it. If they only knew that communication is the best customer service, I think we'd do fine.

I would like to take the time to praise on profession: flight attendants. Flight attendants are some of the best trained professionals I've ever dealt with as a disabled person. They're attentive, but they stay out of your way. When you do ask for help, most immediately ask back "How can I best help you?"

Adjustments

2008-01-07T11:02:00.000-05:00

It never ceases to astonish me how eager I am to procrastinate, and how long I can put off doing something that will fundamentally make my life better on a daily basis.

This weekend, I finally settled down on the floor with a few buckets of tools and added an inch of dump to my chair. Then I fixed a half inch of toe in on my back wheels, the angle of my casters, and my backrest angle. I even resurfaced my footplate so my shoes will stop slipping off of it. It took a decent chunk of time, a lot of sweat, and a few skinned knuckles. Camel is more comfortable than ever before, and I don't have to wear my sneakers any more or risk a lot of hip pain. You'd think I would have done this ages ago, but instead it stayed in the realm of "sure, I should get around to that."

Looking back, this typifies the way I have made other adjustments over the course of my life. I draw out whatever my current situation is for a long time, just content enough not to think about it much. Then, I finally get that motivation to make changes, and in seemingly a blink of an eye my whole lifestyle can be different. I went from housebound crutcher to adventurous wheeler in three months. In the course of our move across the country (and I came by plane!), I went from eating crap to eating well and glorying in my veggies. When I settled my mind to do it, I cut my caffeine addiction in half in a month and a half.

The question is: why do I wait?

Crips: Heroic? Inspiring? Posturing?

2007-09-17T10:34:00.000-05:00

This post is not exactly written in response to, but was definetely sparked by, this one.

"Heroic" and "inspirational" are words that are often misused in the direction of those of us who are disabled, so often that many do start to think of them as dirty words. They conjure up mental images of simpering TV hosts running telethons, patronizing talk hosts, rude busybodies in the mall, etc. In terms of popular discussions of disability, they are functionally the opposite of "tragic" and "sad", and there is not too much in between. The Ouch! Podcast had a moment that parodied this quite well.

SHELLEY: Yeah, I know I was injured when I was 11 in an accident…
MAT: [cries] That's so sad.
LIZ: She's just won the Marathon.
MAT: [cries] Oh that's brilliant. That's so inspiring!

In popular discussions of disability, the middle ground is all too often skipped. I did not understand why this was for a long time, outside of the general Othering of disabled people, but then I remembered a conversation I had with a housemate a few years ago. He came home one day from one of his two jobs (he held one full time and one part time), plunked down on the couch, and told me about a fellow he often saw on the bus who made him feel like a slacker. The fellow held three or four jobs (I don't remember which at this point, honestly) and had the distinction of being armless. Upon remembering that conversation, I also remembered my fellow church goers favorite label for me: "convicting".

The problem lies in the fact that in the middle ground of discussing disability, the able bodied and neurotypical are challenged, sometimes shamed. The middle ground revolves around those disabled folks who are just living a normal life, not doing particularly better or worse then the average joe, just using a wheelchair, flexible schedules, meds, screen readers, or technique as necessary to make their lives continue to work. The challenge we present them is not a virtue of us, who they do not know personally. When your typical AB or NT admits thinks of a disabled person in that middle ground, they have to confront their own years of complaints about the state of their life and the shallowness of some of them. They have to admit that they probably could be doing more with their life, given the motivation, drive, or necessity. It just is not the... safe thing to do.

The safe thing to do is to put is in one of the extreme categories. If our stories are sad or tragic, then they are tales safely put away as "won't happen to me!". If our stories are on the pedestal of the heroic and inspiring, well, who can be expected to measure up to that? No, a pedestal is something one simply gazes at and then returns to their normally scheduled life.

Lets go to the dictionary, Merriam-Webster in this case:

Heroic
1 : of, relating to, resembling, or suggesting heroes especially of antiquity
2 a : exhibiting or marked by courage and daring b : supremely noble or self-sacrificing
3 a : of impressive size, power, extent, or effect b (1) : of great intensity : (2) : of a kind that is likely only to be undertaken to save a life
4 : of, relating to, or constituting drama written during the Restoration in heroic couplets and concerned with a conflict between love and honor

Inspire
1 a : to influence, move, or guide by divine or supernatural inspiration b : to exert an animating, enlivening, or exalting influence on c : to spur on : IMPEL, MOTIVATE inspire people to work> d : AFFECT
5 a : BRING ABOUT, OCCASION b : INCITE

I have never particularly met a fellow crip who reminded me of the heroes of antiquity. I think we can also throw out Restoration age dramas, and life saving doesn't happen all that frequently. That leaves us with exhibiting courage and daring, and being impressive. Inspiration has many interesting and archaic uses I cut out, leaving us with what you see there.

Courage
: mental or moral strength to venture, persevere, and withstand danger, fear, or difficulty
synonyms COURAGE, METTLE, SPIRIT, RESOLUTION, TENACITY mean mental or moral strength to resist opposition, danger, or hardship. COURAGE implies firmness of mind and will in the face of danger or extreme difficulty courage to support unpopular causes. METTLE suggests an ingrained capacity for meeting strain or difficulty with fortitude and resilience mettle. SPIRIT also suggests a quality of temperament enabling one to hold one's own or keep up one's morale when opposed or threatened spirit was unbroken by failure. RESOLUTION stresses firm determination to achieve one's ends resolution of pioneer women. TENACITY adds to RESOLUTION implications of stubborn persistence and unwillingness to admit defeat tenacity.

I am privileged to see impressive displays of perseverance, mettle, and tenacity every day. Seeing their victories and defeats has certainly influenced me by spurring me on and giving me motivation to work harder.

the preschool teacher with chronic fatigue who makes it to work every day, comes home, takes care of her baby, collapses into bed, and manages not only to do it again the next day, but also to be a pleasant person much of the time
a security guard with the worst adult adhd I've ever seen and a good deal of short term memory loss who in four weeks will celebrate the first time he has held a job for a full year
a retail clerk with depression that has no pressing financial need to work, but for the first time in years drags himself out of bed everyday to go work anyway, and takes the time to help other when he can

Too few people, even those who know them well, label these fine people heroes or sources of inspiration. The worst popular twisting of the word "hero" in regards to disability is only granting it to people who have visible disabilities. Worse yet, to me personally, I have gotten called inspirational by some of the same people who deny it to them!

And so I move on to...

Posture
1 : to assume a posture; especially : to strike a pose for effect

Exhibitionism
2 : the act or practice of behaving so as to attract attention to oneself

I am the kind of person who has a weakness for showing off. It is an ingrained vice of mine that I constantly struggle with. Much less so now, but in my college years, I wanted people to be impressed by what I'd "gone through", by my mettle through adversity, by what an outstanding person I was. Back then, when people would tell me I was inspirational, I felt triumphant. I don't think this is an uncommon reaction for the newly disabled.

So now, when I hear one of the "dirtified" disability words, I respond poorly. I respond poorly because of how they're used in the media, because it reminds me of my glory hound days, and because I know those words will rarely be spoken about those who truly deserve it. Its not a simple problem.

I don't know how we reclaim those words for our own. I know it is possible, as I see us reclaim words like crip and cripple and gimp, but I think it will take a long time and a degree of cultural change. Even then, for those words not to just change to new "bad disability" words (ie, cripple -> lame -> handicapped -> disabled), it will take a degree of social enlightenment. Crips will have to admit we're part of the masses of the human norm, no better or worse than most. ABs and NTs will have to face up to the way many of them squander their bodily and mental resources.

A Yet Untitled Poem

2007-09-02T10:02:00.000-05:00

Too many people, even people I like, speak of birth defects casually
They speak of screening followed by "prevention" without thought or remorse
They consider less births with deformities positive progress
Some even know that number is propped up by doctor-urged abortions
They think of birth defects as a number on paper to be reduced
They would do better to think of them as "Becky" or "Joe"
They would speak less hurtfully if they thought of us as people

Q65.9 Congenital deformity of hip, bilateral...
Q97.3 Female with 46,XY karyotype...
Congenital sensorineural hearing impairment...
I am not my birth defects, but I was born defective
To deny it is to deny the forces that shaped my life
To ignore it is to dishonor my people with my silence

If I was born today, docs knowing all I do now,
they would have told my parents many true things:
"She will never run as fast as a normal child."
"She will experience terrible pain."
"She will have quality of life issues."
"She will require a wheelchair."
"She will never hear as we hear."
"Her life will be hard."

If I was born today, docs knowing all I do now,
they would fail to tell my parents many true things:
"She will be happily married."
"She will have wonderful friends."
"She will often be employed."
"She will not let her start dictate her finish."
"She will contribute to her friends, family, and the world."
"Her life will be worthwhile."

I don't care what others think of my life's quality
I am glad to have it, I choose to continue it every day
I am a natural part of the world, not a number
I am strong, vibrant, and unique
I am content to be me

The New Place

2007-08-29T16:54:00.000-05:00

The Good:

The kitchen is amazing well set up. Its has plenty of low storage, and can with a little creativity have everything I use regularly for cooking at my height. It has exactly enough room for me to completely spin my 'chair, and if I'm in a standing mood I can reach everything without trying to walk.
The flatness is great.
Small staircases and steps make visiting other people's apartments easy.
All light switches are easily reached, even the closet light's pull cords are no trouble.
The master bedroom has a roll in closet.
The thermostat and door buzzing controls are within reach.
No hard turns
Easy going landlords
Dishwasher is very usable

The Bad:

Carpet! Lots of thick carpet!
Nearest curbcut is a block away, and involves a wheelie hop
No useful way for me take the garbage out to the dumpster, I'd have to throw it from the patio into the parking spaces and go around
Kitchen switches and dials require a reacher to use safely seated

Overall, I'm very happy here. It is a big adjustment, but I'm confident with a slow working up to being outside the house and moderation I can get my upper body to where it needs to be.

He's depressed. I married him.

2007-08-29T15:21:00.000-05:00

This post is in response to Connie's old one here: http://kuusisto.typepad.com/planet_of_the_blind/2007/01/hes_blind_i_mar.html

I read it when she first posted it, and it resonated for me, but I then I forgot about it. Running into it in the last blog carnival and resilience being the topic for this one inspired me to write this perhaps overly long post about my relationship with my husband. Before I start, yes, we are still technically newlyweds. That isn't because we don't have the time put in, but rather because it was almost a decade long journey from the first time we dated until the day we got engaged. We are a double-disability marriage, with a spread including mobility, sensory, and mental impairments.

When my husband and I met, neither of us considered ourselves disabled. We each viciously shoved out of sight and notice hose prodding signs of disability, especially in public but also within our own perspective. I had a "bad back and lousy hearing" (don't ask me why needing a cane sometimes wasn't a clue) and he was "tempermental and intense". Unfortunately, trying to pretend you're not disabled and quickly becoming more so doesn't work. Doing so derailed both of our lives, starting with messing up college pretty badly. The inherent dishonesty also made our relationship unworkable, no matter how much we loved each other.

The next few years were a trial by fire for both of us. His undiagnosed depression worsened, driving all his friends away except me and one other (who didn't live in the area), and finally culminating in an incident that ended in police custody and mandatory pysch ward time. My hearing remained steady, but my pain levels ratcheted up and my functionality ratcheted down. My minute-to-minute pain level was so high that I developed tendonitis in my achilles heel which I never noticed, then walked on it (and I didn't own a car, I walked everywhere) for months. By the time a housemate dragged me to the hospital, afraid I'd broken my foot, I had won myself a lifetime injury and a minimum 6 months on crutches. One would think I would learn from this incident, something about moderation perhaps, but truly what I learned was that I crutch pretty darn well and that when I hurt to much to walk I could crutch.

And so, we moved into phase two. I visited him in the ward a bunch, and eventually they let him come home with meds and a diagnosis of major depression. I didn't stop using the crutches after six months, since at this point my pelvic issues had degenerated past walking without them, outside the house. At this point, we both knew there was something wrong, and we had trappings of disability, but still no self honesty. Mostly we dodged around the issue and tried to pretend we were both normal whenever that was possible.

Life didn't go well, for either of us, for a long time. His isolation got worse, my mobility steadily lowered. They kept switching his drugs around, trying to find more bearable ones, while the docs and I were finally taking my legs seriously and testing like crazy. Neither of us was living independently, self supporting, and both of us had come that part of grief that involved hating the disability and ourselves (in my case, my body, in his, his mind). We weren't getting anywhere. We loved each other, wanted to get engaged, but it couldn't work out until we'd gotten things settled inside our own heads. I didn't know how to deal with his episodes, he didn't know how to deal with a girlfriend who was in pain all of the time, no matter how careful he was. We desperately wanted to fix each other and couldn't.

Things got better after that, although it took a lot of work. I made the transition from forearm crutches to my first wheelchair. I think it was equally challenging for both of us. I had to accept myself as disabled for the first time, but I had the added mobility as a reward. He had to accept he was crazily in love with a disabled woman, and it took a much longer time for him to experience the added mobility that came with me being a wheelie. After a while, though, when I wasn't in constant pain so high that I couldn't see color anymore, he realized I was going to be ok. I was going to be different, probably forever, but ok.

On my end, I went from generally accepting "Balkar as Balkar" and trying to just be tolerant to seeing his mental illness as much a disability as my twisted pelvis. The online disability community played a huge role in that, letting me accept disability in myself and then in him. I've been able to share this perspective with him, and as a couple we've come to a place where we can examine a situation, catalogue our strengths, and decide best how we two should handle it. In general, he handles physical issues arising from or complicated by my disability and I handle mental stuff, especially if its detail orientated or time pressured, except when our perks and quirks make it better to switch. (For instance, when we loaded up to move I took the heaviest stuff to the truck, using my 'chair as dolly, and he's the one that makes complaining phone calls to companies and such.)

His disability not exactly a secret, but it is a quiet sort of thing. I don't get to talk about it much. The many well meaning "oh, having a wife in a wheelchair, that must be so hard for him" comments I could so easily respond to... but I bite my tongue. That's part of my half of the deal. I don't randomly embarass him by bringing it up for no reason but my own pride, just as he swallows his and acts cool and collected when I need help in non-accessible bathrooms.

These days, we're a fully functional married couple, rather happy even. Not everything goes perfectly, but we're both solidly grounded in the knowledge that the other has stood by us through our toughest times, and those toughest times rate pretty well up there on the charts. (You know, were there charts.) We are confident in our joint strength, in the bond tested very strongly in the last decade.

The old african proverb says, "Smooth seas do not make skilled sailors." Our joint disability experience has given me a strong respect for Balkar. Being married to a man with major depression has its definite day to day downsides, but I'd imagine he'd say the same about living with a wheelchair user. Our marriage has the advantage that neither of us can think of ourselves simply as the "carer" or the "cared for", they both cut both ways. The way here was pretty torturous at times, and there is no doubt that our impairments have changed what kind of people we are. They have made us less functional in some small ways, but also much stronger, more capable, people. They certainly made each of us individually and us as a couple more resilient.

Growing up, I never thought that I was/would be disabled or that I'd date, forget marry, a disabled man. It was the best decision I've ever made in my life.

Top Ten Day

2007-08-13T17:26:00.000-05:00

As a contribution to Blog Carnival, I present the top ten places to go if you want to have fun by cheerfully appearing to participate in non-wheelchair friendly activities and scare the crud out of the cashier/attendant, in no particular order:

Laser Parks
Go Karts
Waterparks
Antique sailing ships
Miniature golf courses
Beach volleyball
Mountain climbing walls
Poorly planned church activities
Enclosed arcade games
Haunted houses

Not to sound mean, but...

2007-08-02T20:44:00.000-05:00

On a wheelchair forum I frequent, I encountered a post, of which this is an excerpt. The poster was asking for advice, obviously loves her mother very much and wants to keep her out in the world with available technology rather than consigning her to a nursing home, and I applaud her determination in being properly prepared to care for her. I only post this to discuss the language of disability.

"My mother has severe osteoporosis and arthritis. Although she can manage to get around in a walker, it's only a matter of time before she will be 100% wheelchair dependent. Her feet turn in so badly that she basically walks on her ankles, she can no longer lift her arms, and of course, her back is severely slumped over. The doctors say her bones are nothing short of sawdust, so there isn't anything surgical that can be done. My husband and I don't have a lot of money, but we are trying to prepare ourselves for the day that she will be permanently disabled."

The last sentence floored me. I realize many people see a wheelchair as the universal symbol of disability, but how is a lady who can't raise her arms or do more than toddle with a walker not disabled already? What does it say abour our society that a paraplegic jock is disabled, but the arthritic-barely-functional are not?

And yet, I can remember when I had the same attitude. I had gotten to a point when going to the next room was a feat of tactical planning and hard faced grit, not to be done lightly, where once an item was on the floor it might as well have been gone forever, and I didn't eat every day because some days the kitchen was just too far. But at that point, I still didn't consider myself disabled. It was "surrenduring" to wheel chair use (part time) that caused me to feel disabled.

Two years later, I have a much nicer wheelchair, a much nicer life, but most importantly a much nicer outlook. It could never have happened if I hadn't let the need for mobility conqer my idiotic levels of pride and social conditioning.

I, like many other crips in the community, have tried to go out and educate based on my experiences. Oddly, the biggest wall I've faced in education isn't resistance to the ideas, but rather the "inspirational" barrier. I've especially noticed this at church. My presence did kick them out of their reverie and into pushing the accessibility budget, putting a real ramp into the building, two stair climbers, and I'm glad of that. A number of the "elder saints" can go to sunday school and such now. But the message I would like to be spreading, that using a 'chair isn't a tragedy, gets absorbed and dissipated in a shower of "You're so impressive/inspirational/amazing/convicting/etc, you really show the joy of the Lord/mercy/etc. You're such a blessing." The more I protest that I'm not unhappy, living with an incredible burden, or even such a great example, the more incredible they think I am, poor girl in a wheelchair, such spirit!

Its my belief that well meaning disaphobia is the worst perpetrator of our society's anti-disability conditioning. In its worst facet, it turns what should be a community based pride into praise of a million individual achievements, many which are not in fact very impressive. I take pride in being a crip, not because I have heroically "triumphed over" my hearing and mobility impairments, but because it is a good community, worth being proud of.

I will post on the stupidity of the wheelchair sign being used for disability so liberally at another time.

Wedded in a Wheelchair

2007-07-18T11:34:00.001-05:00

I wrote more generally about my and my sis's double wedding in my other blog, link at the bottom right.

That said, lets dig into the wheelie bits!

In planning the wedding, it was important to me that my dignity be respected. Balk's major request in early planning was that I wear white. Mine was that he, and preferably our whole wedding party, be sitting down. It worked out pretty well, I think:

http://www.fangclan.net/pics/unitypan.jpg

On the dignity line, the thing that most worried me about the whole wedding was our first dance. Balk is an unenthusiastic dancer, and was not excited about practicing. I like to dance, and have studied from videos on the net, but my chair has a really big honkin' front angle. We only got 10 minutes of practice before the big day. I was nervous, and it was really rough at first. (He ran me into a chair, heh!) Afterwards, though, things smoothed out and we got better. http://www.youtube.com/watch?v=OxK4KSd9cMI I've been trying to solicit opinions from people who aren't my best friends, for lack-of-bias sake. Feel free to leave a comment!

Ultimately, I think much of the triumph of that night was education. Many of the guests hadn't had any opportunity to see a wheeler outside a hospital tank. When you're a radiant bride, smiles from ear to ear, and looking great, no one asks "are you okay?". They just treated me normally, sat back and watched the show. It went as well as it did because our friends had taken the time to learn what my and Balk's needs and limits were. They tapped me on the shoulder when someone was trying to talk to me from behind, put just enough space for Camel to squeeze anywhere, etc.

In contrast, I have never felt so much an alien as when negotiating for our apartment. I had to answer the same dumb questions to three different ladies. I'm not exactly modifying the place! I'm just plopping an aluminum ramp perpendicular to the back entrance and a smaller one inside that can be shoved under the stairs. Its the same thing I've done when I stayed with friends there, so I hadn't expected to receive a third degree interrogation Gah! Finally, they agreed. Now I actually have to go out there in three weeks, and when I get a chance to post about the actual moving in process, I will.

I don't think I'll make it back to the crip blogging world again till at least September. See you then!

Reflections on a Weekend

2007-05-09T15:09:00.000-05:00

I'd like to state at the beginning, I'm not sure where this post is going. I feel a need to write it though, so I guess I'll find out. You're welcome to come along for the ride with me.

I had a pretty eventful weekend. I'm now married legally, though we haven't had our huge family affair yet. We had a party afterwards that was fun, but completely overstimulating for both of us. I fear that on our actual wedding night we're going to sleep through the good part!

Yesterday, my sister and I went on a tour of various government offices to get our new-last-name paperwork done. The trip was an absolute adventure in disablism, but I'm sure I don't have to tell anyone who reads this blog that! Government buildings are built very accessible, but the government employees are experts at making them less so. By the time I left the SSA building, I was frustrated enough to come very close to letting it all out on this poor lady who rushed to hold the door open for me, giggle inanely, and say "You're pretty good in that thing." I just managed to hold my temper in check, which is a good thing. Its hardly her fault I had been glared at impatiently by state and federal government employees for trying to negotiate the physical obstacles they had placed all over the joint.

Later that day, I fell into a long pondering about my pain levels and functionality. I spent twelve and a half years in serious pain 24/7, and came to accept the constant pain hazing as a condition of my life. I accepted that I would always be in full tactical planning mode for the simplest of home activities, that I would always be a burden, and that I would never have a good quality of life. (But hey, during this time I also just denied that I was disabled!)

The last two years have completely turned this view on its ear. Over the last two years of wheelchair use, my pain levels of ratcheted down immensely. These days, two aleve a day means I experience only intermittent pain.
It is a strange feeling, one I'm still getting used to. I feel more healthy, able, and strong than ever, even though I now mentally categorize myself as a disabled person. I'm in the process of getting married, setting up a new life in another state, and helping raise my niece. I'm active, happy, and have an undeniably good quality of life.

In fact, I was feeling so well I began wondering if I still needed to use the wheelchair at all! So after much pondering, I spent about three and a half minutes hobbling around the house, pushing the 'chair in front of me so that if I fell I wouldn't be stuck on the floor waiting for someone to rescue me. In that short time, my hips completely inflamed and starting shooting strong pains down into my toes. I had to accede that yes, in fact, I had not been miraculously cured when I wasn't looking. Unfortunately, my hips haven't forgotten the slight and are still yelling at me, but it was good to know. It was good to push my limits. It was important today, when the baby and I got stuck in the livingroom due to an oversight (which is down a hard ramp) to know that it was safer for me to shuffle the 20' to her crib and exert all my self control to keep my leg from collapsing than it was to try and balance her on my lap while attempting the ramp.

It fascinates me how much pain can become part of your self identity. "I am Tokah" quickly becomes "I am Tokah, that person who is in pain all the time." But I'm not. I'm just Tokah, and what I'm functional to do at my lowest doesn't define me anymore than how well I do at my best. I might currently be dextrous, mediocre at writing, and not conventionally attractive, but none of those things can define who I am. They color my life, cause me to have experiences that shape who I am, but becoming suddenly clumsy, a brilliant author, and beautiful wouldn't make me any less Tokah.

Oops?

2007-05-02T10:44:00.000-05:00

Last night, I made a serious faux pass: I forgot to consider audience I was talking to, and in doing so pretty much ended the whole conversation. I had gotten so comfortable talking online to other members of the crip community, I goofed.

I was in an IM conversation with one of my friends who went away for school. The conversation meandered, from why my wheelchair was named Camel, to how he would want a 'chair with some kind of villain fighting acid spitting device, to how I was so anti-attachment I was trying to take the wheel locks off, to how I needed to learn how get off the floor and into the chair first before I could take that leap. He commented, "See, I wouldn't have thought of learning that in advance."

"That's kind of funny," I replied, "because I didn't think of it until..." and then I proceeded to casually tell him this story:

I was going to work one day. The mortgage company I worked for had a second floor suite. The elevator was a little jerky, and on my way up somehow I fell over backwards. I honestly don't know what precipitated the fall, as I hit my head in succession on the elevator door and then the floor and briefly lost conciousness. I woke up a minute or two later with my knees on my head, a pounding headache, and a realization I didn't know what to do. I had never learned to do a floor-to-chair transfer. I somehow hit the "open door" button and pushed Camel out into the hallway, then crawled out after him. The hallway down to the suite loomed, looking longer than ever before. I grit my teeth and started crawling it, pushing Camel alongside. A few people came out of their offices along the hallway, looked at me, looked away, and then rushed for the stairs. I finally made it to the suite, and my coworkers got me off the floor and back into Camel.

His only two replies were, "Wait, no one helped you get to your suite?" and after my affirmative reply, "That's terrible." And so a very pleasant 45 minute conversation was brought to a screeching halt. He sent me a funny link later, but we couldn't really get the chat going again.

The experience I described certainly was a negative one, overall. It was pretty humiliating and made me question my ability to work outside my home for a little while there. However, it was a fairly typical type of experience for an american PWD. Many like it are described in this thread. These things aren't shocking to us, they're common and shared experiences. I could list more like it, if I had reason to. It happens, its the kind of shared experience that binds disability culture together. The circumstances might be different, especially for someone who's impairment is mental instead of physical, but the feeling of being less than a person in that moment is the same.

Previous to joining the online crip community, I didn't feel comfortable in any context talking about it, though. I talked to my friends about matters of love, about shared hobbies and social drama. But I never talked to them about what it felt like to have one's chronic illness disbelieved, to be accused by family of faking needing a wheelchair, or anything of the sort.

This was a first for me. It was the first time I mentioned a seriously negative disability-related experience to an AB friend who isn't family for all intents and purposes. I feel a little guilty about it, about making things awkward between us. But on the other hand, I wonder if that doesn't need to happen more often. Do ABs really think that this stuff doesn't happen all the time? Are they that sheltered from it? Would education help? I don't have the answers, but now at least I have the questions.

Universal Design... not!

2007-05-01T10:04:00.000-05:00

Its 2007, and there is still disablism, in case anyone was confused on that point. ;) This is my entry for the second annual Blogging Against Disablism Day. The first one was my main vehicle into disability blogging, so I'm very happy to get to take part in it this year. I will apologize in advance, its not as grammatical or smooth as I might like. This is a topic I'm pretty upset about, and it shows.

As it says in my little bio blurb up there, I am among other things the third parent to a darling little girl who just turned six months last week. When she was first born, I was very worried about my ability to take care of her, but as I got a chance to try it out, my worries turned to a different tune. I was perfectly able to take care of an infant, what I was unable to do in many cases was make any use of any of the care devices. There is a notable dearth of child care equipment with room under it for my feet to go, or an arms level access.

So here we are, six months later. I can't use any of the highchairs we've seen, so I feed the baby on my lap with a towel to protect my clothes. I affectionately call her bouncer chair the "demon chair", as its terribly low to the ground and I hate being off balance when I put her in it. It makes me feel like I'm going to drop her. The changing table is an exercise in back pain, and the walker barely passes muster. And mind you, we knew in advance that I'd be taking care of her, and many of these things were bought with that in mind!

Cribs and playpens get a special mention. In the early days, we used a bassinet when I had the baby, and all was well. It had room underneath it for my feet, it had casters on the bottom, it worked great. But bassinets are a phase, and soon she was too heavy and mobile for her bassinet. The crib came out. Cribs, by their general construction, are useless for me. If the side is up, I can't reach over it. If its down, it blocks me from getting close enough to reach into the crib. Playpens have similar problems, even if I pull up along side, I can't get two arms into them. We're adaptable people, we looked at our other options. For a long time, she spent her days surrounded by many pillows on my bed. She loved it, it was easy for me to use, and we put off worrying about it. But this phase has also just come to an end. She is now capable of pushing herself over obstacles and off the bed about as fast as I can disengage my wheel locks.

There are some internet sites dedicated to disabled parenting, but mostly they show you how to build or adapt existing equipment, there's nothing you can just purchase and use.

On an interesting point, I have not actually had any problems with my hearing impairment in this way. The only sound based device, our baby montior, has a little light display to tell you what volume the baby is at.

I'm frustrated. I'm not a fanatic, not every piece of baby gear needs to be usable by 100% of the population to satisfy me. (Though of course, I'd be a huge fan.) I, for instance, will not appreciate a stroller who's catches are labeled in Braille. There should be one to buy, though, for those who do. And there should be strollers that hook into manual wheelchairs for propelling, and a high chair or two that has room under it for a wheelchair. There should be equipment that has bigger, easier catches for use by people with limited hand motion or strength. They sell utensils, desks, and even shoe aids for PWDs, but not child care gear??

Though society would like to think so, we are not sexless, infertile, spinsters who weave baskets all day. We are mothers and fathers, godparents and babysitters. We need adapted gear to take care of kids with just as much as we need aids for other daily living activities.

Carnival #12

2007-04-12T01:53:00.001-05:00

I'd like to welcome you to the 12th edition of the Disability Blog Carnival. Thank you for coming! I hope that the many excellent submissions we have in this edition inspire as much thought in our readers as they did in me. The topic for this edition was "Disability and Culture".

Crip Culture

What is disability culture? Steve Kuusisto explores this question in Porcupines. This older post of Marmite Boy's also discusses Crip Culture. I highly recommend reading through the comments for a lively discussion of the topic.

Mark parodies the illogical splits in disability culture in Its Capital is Cripoplis. Steve Kuusisto takes a more serious look at them in School Controversy In Columbus.

NTs are Weird details six common fallacies in Disability Community Annoyances.

Assistive Technology in Cultural Context

Andrea explores the cultural differences between luxuries and necessities in "Cyborg Cool" Versus "Crip Pity".

Robert draws a vivid picture of children's easy acceptance of speech technology in Coffee Talk, while Ballastexistenz explains how "adult" cultural disapproval of speech devices hampers many people with autism in their attempts to communicate efficiently in The Real Barrier to Communication.

Lisa turns popular thinking about wheelchairs and what is embarrassing upside down in, Sometimes, I Wonder How Walkies Survive.

Joseph Shapiro wrote a brief history of Quickie and its political fallout in How a Woman Re-invented the Wheelchair.

Accessibility, Customer Service, and Plain Old Politeness

Sandy Clark posts about the heart of accessibility in LA Wake Up Call.

DarrenH debates historical and cultural value vs accessibility in London's routemasters -- icon or inaccessible dinosaurs?

Brokenclay shares her experiences with poor customer service in So demanding, or, what I want in a hotel.

Dave Hingsburger laments the modern day's diminished courtesy in Miss Manners.

Ranter expounds on Disability Dos and Don'ts.

Jules shares his experiences with discourtesy in Disability Soapbox. Ruth offers her own experiences in Do You Really Want to Hurt Me?

Zephyr presents her perspective on access to religous ritual and the joy of courteous able bodied friends in The Maiden Goddess and Me.

Disability On Screen & Stage

Jocelyn ruminates on disability and television in The Painless help the Painful.

Karen presents Through Deaf Eyes, And Through My Own, on the perspective a good documentary can grant.

For those tired of being cast as the inspirational do gooder, The Goldfish offers a different path in Nobody does it better, makes me feel sad for the rest.

Simi Linton recounts and comments on her experiences with Lazy Comics.

David is pleasantly surprised to find seamless inclusiveness on the stage in Hope on the Carousel.

Assumptions on Quality & Value of Life With Disability

Anne C takes on both assumptions at The Future Is For Everyone (Or At Least, It Should Be).

In Please don't speak for me and Is a disabled life worth living?, Jacqui and Ryn confront head on the assumption that parents of children with disabilities must be unhappy.

At "NTs are Weird", the author writes about Murder & Caring For Someone and combats the idea of "mercy" killing someone on the basis of their presumed low quality of life.

Dave Hingsburger wrote these two great posts about quality of life and disability, each from a different perspective: Normal and The Thing.

Josh Winheld presents a view looking back on life with Duchenne's in Genetically Speaking, both the ups and downs to a group of medical students.

Who to Blame?

Marymurtz writes a deeply moving post on homelessness, mental illness, and the urge to blame the victim for his troubles in Part 3.

NTE presents #uck "Suck it up", an excellent post on how mainstream culture's health views have shifted the blame onto the impaired and off of the impairment.

Mom-NOS presents A light in the darkness, a piece on the tendency of those with impairments to assume the fault when things go wrong.

Disability and Politics

Peter Tan contributes this eye opening look at the Convention on the Rights of Persons with Disabilities from the Malaysian perspective. Stephen Concklin contributes the American perspective.

No accord for disability rights in Himachal is a well documented essay on the poor state of disability rights in Ajai Srivastava's area despite theoretical legal protections.

Stephen Pate exposes PEI's interest in sex lives of disabled.

Midlife and Treachery presents A new "spin" on supercripdom, a view into how political figures with impairment impact society's perspective on disability.

Eeka discusses a Globe editorial makes a great case for changing the name of DMR.

Miscellaneous

Wheelchair Diffusion reports on Dream Toilet For Boeing 787 Dreamliner, complete with with questions as to how the wheelchair user would get to such a toilet without their wheels.

The Assertive Cancer Patient passes on De-Pink.

Disability Blog Carnival on April 12th

2007-03-22T14:17:00.000-05:00

I am hosting the April 12th edition of the disability blog carnival.

The topic is "Disability and Culture".

Self Image

2007-03-13T00:23:00.000-05:00

"Being in pain and seeing my functionality change alters my sense of who I am as a person. My sense of myself changes. I change. My capacity to be changes. My capacity to think, feel, and respond changes." Wheelchair Dancer

This is so true, and I never realized it until I wasn't in dangerously high amounts of pain anymore. (I classify dangerous amounts of pain as approaching my collapse/pass out limit.)

I used to frame my life's dreams, decisions, and speculations on things like who exactly I should be a burden to. I used to ponder when the right time to kill myself while I could, so I wouldn't be a burden when I coudn't would be. My thoughts were never on what I as a person could and did accomplish, but rather what I could not and did not. My self definition was not just negative, but also very passive, helpless, etc. I was shamed by the amount of help I needed.

Since getting a good 'chair, learning how to use it, and getting back into some kind of shape again thus, my pain has been largely relieved. I still feel pain in my hips, and on bad days it radiates down into my feet, but that isn't every day and night anymore. I can stand for a few minutes at a time safely, and my posture is much more friendly to my back. There are even days here and there that I feel almost free of pain, as long as I behave and take a minimal dose of pain meds.

My self definition has changed radically. I think of myself as a impious, fun, person, a strong partner to Balkar who brings my own gifts to our relationship, competent (perhaps even skilled!), and useful. I dream of my future house, of the life I will create with Balk, the fun we'll have with our friends, and the kids I will be instrumental in the raising of, both ours and our "nieces and nephews". I go to family events expecting to be welcomed and accomodated reasonably, and don't feel shame when we have to do something in an alternative way.

This day, I am making a resolution. Pain won't ever lead me down that path again. I will see myself as a person, and not as it's object. Pain will always be a factor in how I live my life, but it won't stop me from living it if I have anything to do with it.

Dealing with Family, Old and New

2007-03-01T02:16:00.000-05:00

Access means getting to a place where everybody else gets to, so you don't have to make special calls to warn them of your arrival.
-Itzhak Perlman

This past sunday, I had two family events to attend. The first was a brunch at a fancy restaurant to meet Balk's godparents. The second was a birthday party at my uncle's. I wasn't sure how long the first one was going to take, and told my uncle I probably wouldn't be able to attend the party.

Balk's family has had a tough time adjusting to the concept that they are acquiring a disabled daughter-in-law. They didn't have any visible physical disability in their family prior to my arrival, and I often get the feeling they would prefer it had stayed that way. Nonetheless, they called the restaurant before settling on it and interrogated them about their accessibility, not only in their entrances but also in their buffet. As it happens, the people at the place told them things that were less than true, but I really appreciated the gesture of thoughfulness.

I was genuinely sad I wouldn't be able to make it to my uncle's, because his house is the only one besides my own and I can get into and out of myself and actually socialize. Thankfully, Balk's thing ended just in time to head over, so we went unannounced. I braced myself for the usual drama and problems that generally are heralds of my arrival at a family member's doorstep.

Instead, something really wonderful happened. We got there, and it was just like any other couple in the family had arrived, with one major difference. Once I pulled myself up into the house and headed into the livingroom, I found my uncle folding up chairs and making me room to get around in. This might sound mundane, but this is the first time such a thing has EVER happened. He didn't even say anything about it, just treated me like a guest who wasn't some kind of crazy special burden, just treated me like family.

I don't think there is any way to convey properly to my uncle what his actions meant to me, or to Balk's mother. For the first time this weekend, I experienced access to family in Perlman's sense. I experienced consideration without forewarning and haggling, without prior arrangements between me and a family member. I just went to social things and the details were personally seen to without a fuss and without me having to be involved. I was treated like it was normal I was coming, normal that I was there. It was a good feeling, a feeling that can lead to healing and better interactions between me and my families, old and new.

Book Review: The Speed of Dark

2007-01-31T14:04:00.000-05:00

While moseying through the SciFi/Fantasy section of the local Border's recently, one particular book caught my eye. It was "The Speed of Dark" by Elizabeth Moon. I was delighted to discover an unfamiliar novel by her, as she is one of my favorite authors. I flipped it over to read the back, wondering whether this was connected to either her fantasy or space opera series. To my amazement, it was neither. Instead, it turned out to be a piece of disability fiction, told from the perspective of an autistic man, set in the near future. Naturally, I picked it up and brought it home.

The majority of the story is told from the perspective of Lou Arrendale. In every event he is actually present for, we see the world from his point of view. When we meet him, he is an employee of a mega-corporation working in a specialized unit with other auties. He is content with his life and with being himself. He enjoys his job, has a comfortable routine, a crush on a girl, and is part of a fencing club. Then a new factor comes into his life: a new boss, who thinks he and his coworkers need to be cured. It starts out as an intellectual discussion, but the tension grows as his megacorp actually buys the cure and attempts to force them to take it. Now Lou must consider whether he is willing to lose his job and independent lifestyle, or whether he is willing to lose his identity.

Like any decently thought provoking book, this novel doesn't just answer the question it poses. It provides a lot of good cure vs anticure debate, explores the issue fearlessly, and allows the reader to come to his own conclusion of where right and wrong lies. It also takes on many side issues related to autism, including interpersonal relationships, religion, and the bias of the medical professions.

I loved this book... no, I fell into this book, occasionally surfacing for air and food. It was very hard to put down, and caused me a few sleepless nights. Whether you're aware of the debate over a cure or already have an opinion, this book provides much food for thought.

9.5/10

The Beauty of Mush

2007-01-20T13:01:00.000-05:00

I love music.

This may seem a simplistic and obvious statement, but in my life it is not. I am not deaf/Deaf. I can hear at almost normal volumes - 80% in one ear, 85% in the other. However, once that input comes in, it isn't automatically translated into information for me to act on. Its just a mush, sitting there, demanding manual processing. A simple fan can reduce me to purely lip reading. As a joke, college friends once switched the audio language on a movie from english to french for ten minutes. I didn't notice, I just thought I was hearing more poorly than usual.

Interaction with the world in an audio way is a terribly stressful procedure. At any one time, I may be devoting as much as 60% of my mind to translating sound. It is very draining.

And yet, despite that, I love music. I can't begin to understand the lyrics the first few times I listen to a song, but I love music. Music makes sense, it fits into its context. It is still mush, but it is beautiful mush. When hearing the world becomes too much work, when I want to wince whenever the next person talks, I put on headphones and relax into the music, not having to process it, just enjoying the ride. It is the most relaxing thing I can think of.

And yet, not all music is created equal. Much of what other's call music feels like nothing but noise to me. This most often occurs when a song is written to do nothing but enhance a vocalist. To me, the vocalist is just another instrument, who conveys the message of the song a tad bit more directly than the music itself. The truly good music, the stuff worth listening to, delivers its message via the entire sound. The first time I heard the Yes song "Gates of Delirium" was purely instrumental, and not even the whole thing, yet I knew exactly what it was about. As the first sounds of the slide guitar sidle into your ears, you can feel the longing for peace, the sadness and loss the narrator has experienced. By the end of the song, you stand alongside him in the hope for a less war-torn world. "The Storm" by Blackmore's Night is so well composed that listening to it conjures the feeling of raindrops hitting your head, even if you can't understand the lyrics.

So, having said that, I would like to discuss Ludvwig van Beethoven. I can sink into much of Beethoven's work for hours, given the chance. Yet, some of his pieces fail to move me. With some research, I found that these most of those pieces were written before 1794, when his hearing began to flounder.

He wrote to a friend from the old country, Karl Amenda, in 1801 "Your Beethoven is most wretched. The noblest part of my existence, my sense of hearing, is very weak." In 1802, he wrote in the Heiligenstadt Testament, "O how harshly was I repulsed by the doubly sad experience of my bad hearing, and yet it was impossible for me to say to men speak louder, shout, for I am deaf. Ah how could I possibly admit such an infirmity in the one sense which should have been more perfect in me than in others, a sense which I once possessed in highest perfection, a perfection such as few surely in my profession enjoy or have enjoyed." He later went on, "what a humiliation when one stood beside me and heard a flute in the distance and I heard nothing, or someone heard the shepherd singing and again I heard nothing, such incidents brought me to the verge of despair, but little more and I would have put an end to my life".

He mourned his continuing hearing loss in a way I cannot truly understand, having been born with mine. He tried many different treatments, constantly seeking to be "fixed". He was finally considered deaf in 1806, yet between 1805 and 1815 he wrote many of his best and best known pieces, despite losing the "noblest part of his existence".

Beethoven's work in those years and years following are very whole music, not requiring the listener to be able to pick out separate parts. It is a music that resounds in the soul without any need to be processed. It is no surprise to me that he wrote it while he was losing his hearing. While he thought only of loss, he did not seem to consider the perspective on sound he gained, a valuable perspective, that it must also be beautiful in a mush.

I fear that today, at least in the developed world, so many of our Beethovens are caught for "early intervention", pushed into vocational training for things "they are more suited for" than they are interested in. I am also made sad by the modern commentary which still asserts that Beethoven fell into a joyless world of silence. With all of our society's supposed enlightenment, the masses still agree that impairment must be joyless, disability must cause despair, and that Beethoven is an inspiration for dealing well with his disability, rather than a bad example of doing so.

Mush and silence can be beautiful, too.

Book Review: The Time Traveler's Wife

2007-01-18T01:24:00.000-05:00

I picked up "The Time Traveler's Wife" by Audrey Niffenegger on a whim, having read the book jacket a few weeks earlier. The description sounded vaguely interesting at the time, and the author's last name was very memorable. Now that may be nice and all, but why did I decide to do a review of it on my disability orientated blog?

It is a moving and thought provoking piece of disability literature. I would recommend this book as a good read.

The protagonist, Henry, has great difficulty remaining in his current place and time, especially under stress. Worse yet, although he can and does go backwards in time, he cannot change the timeline. The novel tells the story of Henry's life with this disability and the life of his wife and caregiver, Clare.

Henry is everything I could ask for in a disabled protagonist. He is depicted as a real person, not an angelic figure, not as a villainous one. He is a man who does his best to get by in a world that isn't fit to him, doing whatever is required to survive. His personality, habits, and outlook are logical and well integrated with his life experience. Similarly, Clare is not a caricature or embodied stereotype.

Niffenegger does not shy away from the painful parts of their life together. She portrays the frustrations, the obstacles, the loneliness, the little victories, and the magical moments each in their time. I was particularly impressed by both her treatment of their consideration of and attempts at having a child, and her look into how disability can so easily drive someone into overuse of drugs and embrace experimental treatments.

Now, having put that out there, I will make my confession. There is a section in the back of the book that I am still unsure of how I feel about. It deals with the acquiring of a second disability and the interaction between the two. The deep understanding of life with a disability the author shows in the first eighty percent of the book seems to vanish, and suddenly a much more negative and stereotypical view of disability is revealed. It makes sense in context, but it did diminish my enjoyment of the book. I would like to expound on this part, but do not want to spoil the surprises for anyone.

With that said, my assessment is that this book rates a 7.5/10

Disability Questions

2007-01-17T02:59:00.000-05:00

I got these from Emma, who answered them very well. They seemed like an excellent place to start this blog.

1) If you could re-live your life without having your disability, would you?

This one is simple: no. My experiences throughout my life have been shaped by my various disabilities, and in so doing they shaped who I am today. They taught me patience, empathy, pragmatism, even cleanliness. Before my disabilities became more apparent to me, I was a very heartless and cruel child. They have shown me that my friends are truly my friends, and people who will never sweat the small stuff, or even the medium sized stuff. I would not trade my identity to suddenly be living the life of a person who could always hear, who had always been healthy and athletic and mobile. I have struggled, many a time, but my struggles have value.

2) Do you want people to show interest by asking personal questions about your disability?

As long as not all of their questions are such, certainly. Its natural for peole to be curious, and I'm glad they would rather ask than make silly assumptions. I believe the more people learn about how disabled life is, the more they will realize that we aren't all that different from them.

However, I very much dislike when people ask questions they would prefer not to have answered honestly and fully. If I am asked such a question, I had better have time to answer it properly, and you had better not act offended at my answer.

3) What is the hardest thing in life for you to do?

My biggest challenge is asking for and accepting help with tasks that I technically can do, but shouldn't be doing.

4) What is the hardest obstacle that you have to overcome often?

My pride, and other's assumptions of my capabilities

5) Do you resent people that try to help you?

I will glady accept help, even misguided help, from someone who is genuinely a kind person obviously looking out for my interests. Not only do they take "no" for an answer graciously, but they realize when they're getting in my way instead of helping me. (This often happens with would-be door openers.) I will accept that my friends are really trying to help me when they force food on me thinking I'm hypoglycemnic, even if I'm actually not.

I do resent people who help me in a patronizing manner, projecting an assumption of my incompetency. I resent people who help the poor wheelie to make themselves feel better, but ignore those who use crutches. I resent people who can't take no for an answer, or endanger me in the course of "helping". I resent those who insist on helping because I have to take something slowly, or think through the mechanics of a task. I resent those who help me to make themselves look better, or because they feel they have to. (Church people often fall astray of this one.)

6) Would you rather do things on your own?

If I can, without a lot of extra pain, without being a huge bother, absolutely.

7) Do you feel any anger towards God because of your disability?

I used to, but I don't anymore. Back then, I couldn't see any of the good results that could come of it. I wanted to be a missionary, I promised to do my best to become a missionary, and I couldn't understand why he took away my ability to serve him. I didn't understand what I had done so wrong that I would be cursed like this.

I have learned a lot since then. I am more of a missionary than I ever could have been traipsing around Lapland for two weeks. I have full faith that God has a plan for my life, and for my pain and trouble, and that it is worthwhile and will bear good fruit. I don't know what those fruit will look like, I suspect I won't know until I finish this journey. I have gotten to see small flowerings, though, and that will have to be enough for now.

8) What do you dislike the most of other people around you (ex- people staring, pointing, etc)?

I really hate it when people look away from me, but are talking to me. I can't lipread them, and the people who are doing it aren't familiar enough to me to hear decently otherwise. Other than that, I'd prefer they didn't throw rocks at me or anything like that. Pointing, staring, all of that is annoying but I can deal with it.

9) What is the best way for us to help you?

Step 1: Ask if I need help
Step 2: Assume I know what I'm doing
Step 3: Follow my directions, its better for both of us

10) Do you feel awkward when you are around people that are different than you?

I feel awkward around openly mean people. That is a difference I don't deal with well, finally being good natured myself. I don't do well among people who grew up with lots of money and the attendant luxuries. Other than that... I know and like people of many nationalities, levels of mental and physical ability, heights, interests, etc.

People are more alike than they are different.