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To quickly bring everyone up to date: I needed a new cushion for my chair, and had been having really noticeable issues with my balance & posture since the fall. When I contacted my guy at Custom Mobility (the wheelchair retailer), he recommended that I go for a consult with a physical therapist who specializes in wheelchair evaluations/fittings/etc. I was terrified (physical therapists ranking pretty high amongst my childhood bogeymen), but shouldn’t have worried — Lauren turned out to be awesome and totally on the same wavelength as me. So anyway, she recommended a full new system from Ride Designs. It is entirely different from anything I’ve ever had. With the addition of power tilt and a headrest, I’ll be sitting more or less upright — better posture than I’ve had in about 18 years. I was hesitant, but we did a “practice” molding in December and I decided to go ahead with it, as the benefits will outweigh the discomfort and fear of the adjustment period.
So the first step was to get the funding in place, as this is not a cheap proposition. I got a denial from Medicaid — they said it would be less expensive to get a whole new chair than to just change the seating on this one. (Which isn’t true in the real world, but whatever, if they want to replace a four-year-old chair that’s their call.) To resolve that, and a similar issue with my primary insurance, I’m getting an all new chair(!). It’ll either be a Quickie 636, which is virtually identical to what I have now (a 646) or a Permobile 350, which I’m going to go test drive later today.
Yesterday I had my official molding with Gary (co-owner of Custom Mobility, who’s known me since I was 4), Lauren (awesomest PT ever), and Joe (the actual inventor of the seating system, who was in town from Denver).
I won’t gloss over it: the molding was really difficult, and I feel like I’ve been run over by a truck today. But it was successful. The goal was to get a seat mold with my hips as level as possible (believe it or not, they can get within about half an inch of neutral), and to get a really accurate cast of my back. We eventually wound up doing the back piece with me laying down; the same forces that make my posture so poor in the current chair (ie, gravity and muscle spasm) were getting in the way of us getting a good mold. But a little ingenuity, a lot of communication, and a hell of a lot of general manhandling of my body, and we got it done!
The final product will be a seat that will give me support and hold me in place (my left hip will be blocked to keep me from sliding) without causing pressure sores; and a relatively small backpiece that will support the right spots and that will be mounted on a fully articulating arm to move me into the right spot. It’s difficult to explain, but in reality it’s brilliant and, I anticipate, will help my pain issues significantly.
Yvonne says it’ll be “life-changing” — she’s not exaggerating.
Oh, the other cool thing: regardless of which chair I get, I’m getting an ass-kicking electronics system. It’ll have a bluetooth mouse driver, so I’ll be able to control my Mac with my joystick. For a few bucks extra, I can even get an interface that controls a PS2 with the joystick, too. That’s right, bitches: I’m gonna own you on Guitar Hero.
So the next step is for me to pick which chair I want and get the paperwork re-submitted to Medicaid, et al. We’ll get authorization fairly quickly since the case is already open. It’ll take about 4 weeks for the seating system to be made, and less than that for delivery of the chair itself. So I could conceivably have everything by late March-early April. It won’t be an overnight transition — this is radically different in just about every way — and for awhile I might use both chairs. (I’ll have to do some OT to figure out how to do everything sitting up, using my left hand, etc.) But Lauren said I should be totally comfy and functional by my birthday (30! eep!) at the beginning of June.
So that’s it for now — I’ll continue to keep you updated as the process unfolds. Thanks for all the prayers and good vibes… they’re much appreciated.
“After a while you learn the subtle difference between holding a hand and chaining a soul and you learn that love doesn’t mean leaning and company doesn’t always mean security. And you begin to learn that kisses aren’t contracts and presents aren’t promises and you begin to accept your defeats with your head up and your eyes ahead with the grace of woman, not the grief of a child and you learn to build all your roads on today because tomorrow’s ground is too uncertain for plans and futures have a way of falling down in mid-flight. After a while you learn that even sunshine burns if you get too much so you plant your own garden and decorate your own soul instead of waiting for someone to bring you flowers. And you learn that you really can endure you really are strong you really do have worth and you learn and you learn with every goodbye, you learn…” — © 1971 Veronica A. Shoffstall
For most of my life I’ve given far too much weight to what the people in my life say about me. Because my own self-image was so uniformly negative, I accepted negative feedback/criticism (which resonated with my internal beliefs) as “truth” much more easily than the positive stuff. But any positive feelings I had about myself necessarily came from external sources, too.
I’ve been aware of this for years, and the psychological roots of it have been uncovered in therapy over the past two years. I didn’t do much to change it, though; I mean, it’s hardly uncommon amongst women in my cohort to be insecure! But I’ve recently found the motivation/desire to change.
For most of 2009, there was someone in my life who, frankly, flattered me incessantly. It was lovely and made me feel pretty and special and important. If I’d taken some kind of self-esteem survey around Thanksgiving, I would’ve topped the charts. I thought I was really feeling good about myself, but I was actually feeling good about this person doting on me. (Again, nothing unusual.) But when that relationship hit a rough patch, I realized that I hadn’t internalized any of those positive messages, and when they weren’t there anymore, I felt like crap.
And that is crap. I am pretty and special and important, and I want to feel that way on my own, without needing to hear it from someone else. I want to make myself happy. So I’m going to reverse-engineer the problem. To counter the negative messages seemingly hard-wired into my brain, I’m going to do what my previously-mentioned friend did: remind myself often and persistently of the good things that everyone in my life values in me. I’m also going to start a happiness journal here on tumblr. I’ll post there whenever something positive and worth remembering happens, and will also record (to reinforce) positive feedback I’ve received.
I’m taking my happiness — myself! — back from all the people who have tried for nearly 30 years to define me, to tell my story without my input, to idealize me or to denigrate me. Positive or negative, what people see when they look at me says more about them than about me, and therefore isn’t a reliable source to build my self-image from. I’m the only one who can really know me, and I’m determined to strip away all the layers of self-hatred and self-doubt. I’m determined to make myself happy.
I generally like to make my yearly intentions at my birthday, but I rarely make those public. Here, then, are the intentions I have for the next calendar year that I don’t mind sharing. Most of these are already in progress.
So here’s the scene: wanting to get away from the computer and out of the house, I had agreed to accompany my father on a midday trip to International Plaza (Tampa’s luxury mall) to help him pick out gifts for my mom. I was cold, in pain, stressed out by the crowds, and above all, feeling sadly nostalgic (for reasons that are neither important or relevant). To put it mildly, I was not a happy bunny, and I was making myself unhappier by the minute (I’d nearly teared up in the food court a few minutes earlier).
Then, in a split second, the crowd parted a bit and an older man I can only describe as jolly-looking, with truly sparkling eyes, caught my eye and winked — not in a creepy old-man-winking-at-younger-woman way, but in a I-know-you’re-unhappy-but-hang-in-there kind of way. In the same moment, Sydney (my service dog), who’s actually very well-bahaved in those sorts of crowds, jerked her head up, looked straight at the man, started wagging her tail energetically, and tried to pull over to him, as if she’d known him her whole life. All of this literally happened in 2 seconds, max. And the first thought that popped into my head? “I think I just saw Santa Claus!”
Of course, whether or not it was Santa, we’ll never know. But I do know that a single moment completely moved me from a place of anxiety and nostalgic sadness to joy (I think I actually laughed) and gratitude… which is the best gift I could’ve asked for. It was also a lovely reminder that on days like these, I don’t have to get out of the house to find peace; I just have to get out of my own head.
Open Salon post: How not to educate children about disabilities - Becky Blitch -
In which I rant about Gimp For A Day “awareness” activities.
[UPDATE] The comments and reactions on this post got weirdly screwed up and separated by Disqus into two threads. The original comments can be viewed using this link. I’ve closed that thread to avoid further confusion; please add any additional thoughts to the bottom of the page found at http://tumblr.com/xkb3pejv1. Sorry for the confusion!
Earlier today, @msjennylin posted a tweet that has inspired a lively discussion amongst myself, @musingvirtual, and @whereslulu:
I wish women with disabilities would band against devotee issue. Tired of fighting them off on Facebook only to see 40 contacts added them.
The issue of disability devotees — and let’s call a spade a spade here: they’re fetishists — divides the disability community at every level, from academia to, well, Facebook. It’s something women with visible disabilities encounter regularly. And I believe that, while the extremists are relatively rare, the growing acceptance of “devotees” online will trickle down into the broader social constructs around disability.
It’s widely believed that people with disabilities are viewed (in contemporary Western culture, at least) as “asexual.” The truth is more complex. We certainly do not fit the airbrushed-cover-of-Vogue ideal of beauty that is shoved down our throats. But then again, neither do all but a few supermodels on the planet; we don’t consider 99.99% of women as asexual, though. So here’s a key point: differentiating beauty (or physical attractiveness) from sexuality. To be sure, sex can be different and require a bit of creativity and patience, but most women with physical disabilities (at least, the ones I know!) have pretty normal sex lives. Nevertheless, because we can fall so far outside the norm of what is considered attractive, we (like all women) tend to conflate general beauty with sexual attractiveness, making us easy targets for people calling themselves “disability devotees” — sexual fetishists who objectify women with disabilities and reduce them to the sum of their (disabled) parts. Many women with disabilities entertain such advances, or even encourage them; when you’ve lived in a society rife with ableism it can be easy to believe that your disability defines you (and as a woman, that your sexuality defines you), and fetishists play right into that mindset.
This is an area that can (and should) be researched and discussed much more. For now, here are a few of my thoughts and experiences to help facilitate conversation.
These thoughts are disjointed and incomplete, but let them, and today’s serendipitous exchange, provoke more dialogue and solidarity. Join the conversation on Twitter by following the #antidev hashtag.
As I asked @msjennylin: What can we do?
Happy National Coming Out Day! These infamous gay cupcakes were from 2001, celebrating NCOD at Eckerd College Pride.
Watching Masterpiece Theater on a quiet Sunday night with Jack (a gift from my best friend).