Tuesday, April 27, 2010

First Person Singular and Blogging against Disablism

Blogging Against Disablism Day, May 1st 2010

Note: I apologize that these words aren't as smoothed out as they should be; I keep coming back to make corrections. Pain creates cognitive difficulties for me.

To what extent are Frida Kahlo's paintings self portrait and to what extent are they a mirror? I invite others to view her work for a moment as a mirror, whether or not you are female or Mexican or disabled. Her eyes reflect yours, challenge yours. Do you typically see her as entirely separate or do you connect her with parts of yourself? A purely objective, nonmirrored standpoint positions her as Other; an entirely subjective viewpoint can either obliterate her uniqueness, her life story, or it can obliterate our own so that we do not connect with her. Ideally we balance or oscillate between the two, seeing her and ourselves both.

"God created man because He loves stories," Elie Wiesel once wrote. And for most of us, stories make us tick, connect us, move us to action, speak to our hearts, make us feel less alone or more bold. Stories change our deep-seated opinions, educate us, perhaps most importantly teach us empathy for other viewpoints or experiences we have not had. They make us better people. They humanize us. Frida's life story, for example, teaches me and makes me feel less alone.

I believe in the power of life stories, of autobiography, of poetry, and nonfiction narrative to change lives. To me, stories connect to stories connect to stories. It's why the best writers craft strongly intertextual work, integrating other stories with their own--William Shakespeare, T. S. Eliot, Virginia Woolf, William Faulkner, Toni Morrison, Lucy Brock-Broido are all masters of literary allusion. They knew (or know) their stories are strongest when they are connected with other stories. After all, "no man is an island, entire of itself; every man is a piece of the continent, a part of the main" (John Donne). (And "no woman."). Often the complaint among writing teachers is that many creative writing students don't want to be readers. They want to be poets or novelists. But they don't want to read others' stories, they don't want to understand their genre or literary history or their place among other voices that have come before them or who write contemporaneous to them. They just want to be a poet, to be famous, out of context, alone, without a sense of others. This is what's missing in some published disability narratives--a lack of connectedness to other disabled people, in its place a traditional Western American frontier sense of conquering the enemy (in this case, an illness or disability) alone and rising above it. The overcoming myth isn't unique to disability at all. It's almost a given in American literature. And historically this myth excludes voices--voices that don't overcome or can't overcome.

If we can overcome, or better, succeed with rather than in spite of a disability, we don't "rise above" by ourselves, though certainly self-motivation is an important part of reaching one's full potential. Success, where disability is concerned, hinges upon ramps and accessible buildings and laws first--all put in place by or with others, disabled or not. Just as, for others, exercising one's rights was predicated on the Voting Rights Act and Topeka v. Brown Board of Education. And, for others, the 19th Amendment, Title vii and Title ix. The Western myth of a hero overcoming hardship is a white male, heterosexual, economically privileged myth.

But what softens hardened hearts that discriminate, sways them from not seeing "the other"? Knowing others and hearing their stories, told formally or informally, whether real or constructed fictionally to represent a collective voice. History and literature and autobiography may have more influence to convince and change than political science.

And what makes the heart survive during the most difficult times of discrimination and hardship? Here, too, others' stories, told formally or informally, real or constructed fictionally. Many women wrote to Betty Friedan after she published The Feminine Mystique, letting her know that they had no idea they were not alone--and to Ladies' Home Journal for an article that I believed spurred the book.

Women, ethnic minorities, disabled people are often told to cut the "I" out, cautioned against writing autobiographically. It's a choice between career suicide and metaphysical suicide, this cutting the "I" out. Charlotte Perkins Gilman once wrote an autobiographical story about her experience with the rest cure and being forbidden to write--"The Yellow Wallpaper"--about a woman trapped in a room by her physician husband. It's a compelling story that makes one rethink mental illness (it can be caused by constraints put on one, or one can be called mentally ill for not fitting proper womanly or disabled roles). And apparently the story changed the mind of S. Weir Mitchell, the inventor of the rest cure, as well, about the appropriateness of such torment. And for those of us who sit in our yellow (yes!) room day after day, imprisoned by physical disability, we can connect with Gilman as well as blogger friends in the same situation. Reading others' writing can help us survive. Yes, survive. How should we react to those who ask us to eliminate our "I" or to communicate in superficial ways rather than discuss the gritty reality of our lives?

Certainly we should not devalue others' stories by implying that our own situation is so much worse than another's. It's not a competition. But we can (should?) share. Like Wheelie Catholic, who wrote yesterday that she must read others' blogs before writing her own, I too cannot write my own story without reading others'. Even when I don't refer to others' stories, your stories are in my head, in my heart, and underlie what I write. And not just my disabled friends'--my other friends', too. I want to know if someone else has experienced something similar when someone tells me how to "cure" myself, yells at me in public, implies that I am lesser. Let me know that I'm not alone. I believe in conversation, in friendships that aren't one way. I don't mind when Elizabeth or my friend with back pain and scoliosis share what they're going through that's similar; while there may be a difference of degrees among us, I don't want to listen to my own voice echoing into silence. There's a commonality in dealing with pain and going to doctors, in writing by ourselves for long hours alone. We're not writing first-person singular in the sense that singular means exceptional or weird; we're singular in the sense that we are individual voices coming together, meeting one another.

That's my perspective, at least. I hope that I am not writing in a vacuum, my experiences unconnected to anyone else's, but that's the danger I worry about when writing autobiographically, informally. The power of writing lies primarily in its ability to connect--again to impart empathy or to make us less alone in stories we do share--to teach and delight (Horace) or to create epiphanies (James Joyce). But each story, each voice, has to be connected to other stories.

How do we change disablism? Read. Write. Speak. Or sign. Learn stories and tell them. Teach others how to tell them. Edit them. Publish them. Retell others' stories.

The power is yours. The power is through words.

The past two years of blogging I feel most connected to others' stories on Blogging against Disablism Day--this year it will also take place on March 1 over at Diary of a Goldfish. For days I revel in the richness of so many voices describing what so many of us experience or witness in so many forms: disablism. You do not have to be disabled to post, but please spread the word--our stories and ideas also need to be heard beyond the disabled community, to mesh with other minority and mainstream writing.

Thursday, April 22, 2010

Spring Has Sprung

The changes in my breasts are benign--good news!

The wheelchair van--that's another story. It works, but Chrysler made 2008 and later models so that the sliding door does not open all the way--the door partially blocks the opening. That means that not only will Roll-a-Ramp not work, but not even a manual ramp will work with side doors on this van--or the Dodge minivans either. There could easily still be a 30-35 inch opening but there is not--well, there is a 35 inch opening--it's just blocked by the door that won't slide open all the way. While a hinge/special piece can be added to gain an extra inch, you can't get two inches and wiring would have to be cut into and other very significant changes would have to be made, putting you much of the way into a conversion. For no other reason than aesthetics have they done this. Spread the word--people using manual ramps may be unaware that a newer vehicle won't work for them. While you can still do a $20,000 conversion to these minivans, a simpler solution will no longer work.

There are spring-loaded manual ramps that will fit permanently in a van and require little physical effort--so my kids or relatives could help me with it. We could in that case remove the rear lift and raise the bench seat for our kids. But, again, 30-inch manual ramps won't fit in that van door, not on the newer vehicles. Maybe people with smaller manuals can use them, but my chair is 26-inches wide standard--a 26-inch ramp won't work.

This is poor design since Chrysler knows that Town and Country and the Dodge van are used for wheelchairs--they're probably the most used vehicles for power chairs, large scooters, and manual wheelchairs whose owners need a minivan.

I'm not sure to whom to complain since Chrysler (Dodge is a part of it) is in all kinds of change. I'm not sure anyone would care.

So this means I can't take the power chair out, not without my husband. I can't go on Paratransit with the kids since you can only take one person with you (and I can't get to regular transit lines without Paratransit). My husband travels, meaning I must do some errands now, and works too far away to help otherwise. We're in a bit of a bind. We'll hope the lift holds out as long as possible so I can take the scooter out some, though my time in it is pretty limited. Though we could put a manual ramp in the back, I couldn't then put the scooter in and out by myself; most people who could help me wouldn't be able to get the power chair up that big of a ramp.

We've been through worse; we'll make it through this too. It took me a year from the time I realized I needed different seating to get a wheelchair. I'm no worse off and am often better now that I can enjoy time out on weekends with the family without being in unendurable pain. I also use the wheelchair extensively at home. But a long-term solution or time out during the week may have to wait--I have my eyes and hopes on the next year ahead.

Yes, using a wheelchair, really easy...

Thursday, April 15, 2010

Get Your Boobies Squished Again, Roll-a-Ramp, and Wheelchairs Are Easier?

The Callback
I received a mammogram callback (or two or three--I didn't have the money up front for a follow-up) and letter and, is it horrible that my *first* thought (and second and third), was "oh, no, I can't afford this?" I have microcalcifications; when a baseline mammogram is done and these show up in some patterns, the radiologist has to make sure they're benign--lots of women have them and they're benign, like 80% of them. These are bilateral, which in my mind says more likely to be normal for me rather than cancer developing in both. So, more detailed imaging tomorrow now that we finally have the medical reimbursement account card, a biopsy if the shapes of the microcalcifications are irregular. Even if they're not normal, that's a stage zero breast cancer (ductal carcinoma in situ) and often requires only removal of the local spots. Yay, early detection. I started my career in healthcare and am worried about much more than how much a potential biopsy that would likely be normal would cost me out-of-pocket.

But umm, yeah, could I have something come back normal, ever? Seriously?

(My fear: at some point, I'm going to lose all credibility with everyone with the health issues. I haven't until now told anyone but a few people.)

Recent Wheelchair Van Issues
The wheelchair is lovely and reduces pain--I can go out for a long time on weekends and be up and around the house a lot more. It does not work well with the platform lift and exceeds the weight capacity slightly. While my husband can pull up on the lift so it's not doing so much work (he's strong), it takes an extreme and exhausting effort on my part to get the wheelchair in and this is not good for the lift. Procedures just to position it on ramp:
-open hatch with remote
-lower platform with control
-raise footrests so they don't scrape the bumpers on the lift
-take chair out of tilt and recline
-drive wheelchair onto ramp (repeatedly--the first bumper that holds it in place causes the casters to go out of alignment and often, the back casters to go off the side lip of the ramp; since this is a small space, they don't line up easily on it to go over the second bump)
-drive wheelchair far enough forward on lift so it can go in car (to exact spot)
-lower footrests and flip them up
-start reclining seat back some
-remove left armrest from holder and flip front armrest support forward so it will support the joystick against the frame
-stand up and remove headrest from wheelchair
-raise lift and wheelchair to knee high with power control
-attach webbed straps/hooks to secure wheelchair to platform (if it shifts off the platform, all 386 lbs. it actually is, holy cow!, it will shift some). (wrestle/fight, with arthritic hands, to loosen and tighten straps)
-remove attendant control from near headrest
-recline wheelchair back to exact angle to fit
-use control to guide wheelchair/lift into van until gears start grinding
-push like hell on the lift/wheelchair while using the control, pushing underneath wheelchair with shoulder, to get lift to push it into the van
-if wheelchair is placed slightly wrong on lift, start whole process over; all steps except headrest must be redone since wheelchair won't drive in extreme recline
-if third time you've tried to place wheelchair on lift, cry (cursing comes on round 2)
-nestle attendant control where it can be reached/won't get squished
-stow headrest so it's not a potential projectile
-use car remote to close van door
-scream if van door doesn't close; plus 50 points if it was just a strap sticking out

You can probably tell this isn't good for me or very possible--while I can make it through an appointment without pain (yay!), the pain from putting the wheelchair on the lift afterwards, well--it's like I ripped my right shoulder from my socket like Grendel seized by Beowulf. For now: scooter when I must do errands by myself. The wheelchair does help with ADLs and is completely worth it--this is a temporary hurdle that can be solved, even if I need extended family or friends to help with a manual ramp when I go places during the week. Now I can get out and do more--the wheelchair makes it possible for my body to cooperate. And we've had some good weekends because of it.

I'm also worried about safety while spending this much time at the back of a car, especially at the end of parking rows. It worried me on the scooter too, but this is way more extreme!

Putting the scooter on the lift goes like this:
-open back hatch with remote while zooming up on scooter
-grab platform remote and lower lift
-zoom up on lift
-raise lift, usually don't umm, bother with straps since it's not going to go anywhere (the lift arm blocks it from being thrown in an accident)
-close van door
I don't have to stand long or walk far, though getting in and out of the car several times (short errands) is very difficult because of multiple transitions/transfers.

Putting the wheelchair on the Roll-a-Ramp should go like this:
-open side door with remote
-lower ramp with button
-use attendant control to drive wheelchair up lift (and turn it?)
-use straps on wheelchair (ouch, spine--reachers/grabbers?)
-raise ramp
-close side door

Strangers do stop and ask to help and insist on helping, and I let them--this beast is enough to tackle gladiators. Even elderly people will stop and ask (though I don't let them). Except once, where I finally had to ask someone else.

The advantage of the platform lift is that I can see out the back window much better than with the scooter since the wheelchair is reclined. My only concern with the Roll-a-Ramp is whether it will be too steep for me to get it in or whether the wheelchair will turn easily inside (would give us more room for the kids on the back row of seats, which will be back up when the platform lift is removed). Oh, yeah, and reaching any straps. (Q-straint versus EZ lock?; there is a cost difference). Straps are a necessity here--the kids don't need a wheelchair in their faces if there were an accident.

So we are looking at a powered Roll-a-Ramp instead as a temporary measure and trying to plan ahead for a used conversion van in the long term (we can't do this now). Let's pray this Roll-a-Ramp works for our needs!

Why the hell didn't we buy a 2- or 3-year old used conversion two years ago? The monthly payment wouldn't have cost us more than adding a lift to a newer leased van, if you divide the cost of the lift over several years, and it would have made it much easier and safer for me--and we'd own it. Both naive and overly optimistic, I guess. We may still consider moving to an area with good public transport at some point.

I've been dealing with a lot of paperwork and phone calls recently, insurance and finances and taxes, and well, it's good to have an income and be in our house. And it's good to be out and about on weekends and up in the house doing more.

Using a Wheelchair Is Easier?
I'd love to whap anyone with a wheelchair manual who says that using a wheelchair is easier than walking. I'd love to show them the far greater efforts just to boil Ramen noodles and how much more work that requires, what an extreme effort it is to make a meal from a wheelchair. How difficult it is to get a wheelchair or transportation or to transfer.

One of my doctors (not my rheumatologist) said last year it's just easier to use a wheelchair than to walk, that people become lazy and use them the same way they do with TV remotes rather than getting up to change the channel. Now that I'm up and around more, I am continually noticing (as I knew from scooter use) that it's not easier than walking at all--if I were to be lazy, I'd walk rather than use the wheelchair, though that would cost me in extreme pain and in ability to get around for long.

No, nothing about using a wheelchair is easy, from navigating around corners in the house to reaching anything. When I can, I still do stand--while it may not be for long, it's good for my bones and heart and muscles. In terms of physics, it is far easier for me to stand to do something than to use a wheelchair to do it--but I most often can't do so and am almost completely bedridden or couchbound without one. I cannot understand why anyone would ever use a wheelchair who does not need it--from access issues to social issues, employment issues, bullying/harassment, being accused of "giving in," jolting over rough terrain or cracks, trying to carry objects, the extreme costs involved, the difficulties of transportation (often as difficult as getting a chair), difficulties with reaching everyday objects and injuring to reach beyond what one should, home modifications or doing without, using a wheelchair is a big step. It's one more people should avail themselves of rather than confining themselves to home, but nothing about it is easy.

Maybe AB's should try this: sweeping the floor in a wheelchair--it's not easier! A wheelchair is not like putting on a pair of glasses to see; it's not the near-100% corrective that eyeglasses are for most people. Navigating a wheelchair while holding and wielding a broom is extremely difficult, getting all areas and not running over the pile you just made, trying to move or get around chairs or objects. Your feet have a much smaller size to pivot on than the base of a wheelchair. And you have both arms free if you're able-bodied. While it's possible that your body might let you sweep if you could stand, it might not let you do so from a wheelchair, especially if you have shoulder or spine pain--or you may feel a lot of pain from it later. And that's just one task--that takes four or five times longer to do, with more effort expended. So even if you can do that, you might not be able to do other tasks, because of time or pain, depending on your body. And with scooters or some wheelchairs, you might not be able to sweep at all; one or two arms are needed to propel.

A wheelchair only makes things possible that would not otherwise be possible. When pain or level of function keep someone from living, though, a wheelchair is a solution. But nothing about it is easy.