bunnymay

rage, I haz it

bunnymay — Thu, 21 Aug 2008 22:03:00 GMT

One of the more fucked up things, well, really just one of the many, of my life post-injury has been the loss of certain friends. I've lost a helluva lot of people, mostly because my life took a different turn and we no longer have much in common. Being in chronic pain, figuring out what I need and how to live, surgeries, moving, etc etc., has made it even more difficult to both stay in touch and relate to people living "normal" lives not based on recovery.

Then there have been those who simply stopped calling or returning my calls. One person in particular, a friend of mine since college, was crueler to me than I could have ever imagined.

Lou is about 15 years older than me, and we became friends when we worked at the same restaurant when I was in college. We became particularly close when the shit hit the fan within my family, chiefly because he was one of the few people I felt comfortable telling about all of the craziness that was happening. He was older, unconventional, and had the life experience that allowed me to feel unashamed in telling him all the insanity that was too much for my peers to understand.

We stayed in touch after I left for NYC, and he was there in the ICU the week after I was hurt. When I finally moved back to my hometown, about 4 months after I was hurt, he called wanting to stop by and see me. And then, he disappeared from my life, refusing to return any of my calls. It was especially hurtful because we still had mutual friends, and this being such a small town, you can't stay hidden for long.

I had so much hurt and rage towards him for a really long time because it just made no sense, and I couldn't figure out why the sudden change. The big obvious reason was that he couldn't handle my disability, but I always felt that was only part of it, because it was such a cruel thing to dump a friendship over a wheelchair.

About a year ago, I figured out why: I was no longer fuckable. Him being the confirmed bachelor slut all those years, we had never slept together. Mostly because I wasn't interested in being a part of a long line of 20-somethings he banged to make himself feel young, but also because I wasn't attracted to him. But I was too insecure back then to believe that part of why we were friends was that it gave him hope that he might one day bang me. Seriously, I was beyond insufferable back then, a total headcase and unable to cope for a very long time. But that gave him a chance to play hero to an attractive young girl and stroke his ego in the process.

Today I saw him for the first time since I've been home. I knew it was bound to happen, there is no escape in a town like this. We were at a red light together, when I looked over and saw the long once salt n pepper ponytail which is now nearing white. So I pulled up closer, beeped the horn, and flipped him the bird. Then I drove away and started crying, because it still hurts to be rejected for something beyond your control. I was just being the only me I could be anymore, and he rejected years of friendship because he didn't find me fuckable anymore, and so there was no longer anything in it for him except unending dreck and difficulty. Some may think I'm taking this too far or whatever, but I know the guy plenty well and I've had ample time to think about it. He's not the only one either. But men don't act the same way they used to around me, and now that I've been on both sides of the objectification coin, I can see things a lot clearer than I ever did.

New Best Friend: our film debut

bunnymay — Sat, 16 Aug 2008 22:00:00 GMT

Ever since I played Holly's Wii, I've been saving up my pennies to get one of my own, and I even signed up to get text alerts from amazon.com when they came in stock. But then I saw "the Manners Minder", made by the same people who created the tug-a-jug. Also known as the "Treat and Train", it is a remote feeder that enables you to do operant conditioning (clicker training) from afar. Once I saw that it had a remote, I was sold - I'm a gadget freak.

Remotes are the quintessential tool for gimps, along with wireless anything. With the Manners Minder and a target stick, I've got all the tools I need (at least for now, who am I kidding?). So I shot some video thinking it would be this educational type thing. And then I discovered that I could add music and titles, and that went out the window.

With the Manners Minder, I am able to train Coco as I type this, and she is in another room. One of the most difficult things for us is her separation anxiety, and with the Manners Minder, she's got a reason to stay right where she is. Right now we're working on the down-stay, and eventually my hope is that she will be good enough that I can put her in one when guests come to the house, and treat her while she stays down instead of having her jump up in excitement as she does now. There are other applications as well, but that's the start for now.

Please enjoy Team Coco's film debut of "New Best Friend": (and please, flick your bic all you want) p.s. if anyone does want an instructional video w/o all the hoopla, lemme know.

farleybear

bunnymay — Fri, 15 Aug 2008 19:16:00 GMT

We had a guest here at TCHQ last week, a border collie named Farley. Farley was a stray who got picked up by the pound, and rescued from death row by D. Coco & I took him for a week as a foster.

We met Farley a few weeks ago at D's house, and boy was he a smitten kitten for Coconutter, she being the only blonde in a pack of 6 other border collies (D's dogs). Since she loves to play so much, I thought it would be good for her to have a friend for a week, which also gives mama a break from the constant haranguing. Farleybear stole both our hearts, and it was not easy taking him back to D's house yesterday.

Farley still needs to find a permanent home, so if anyone out there is looking, please contact me sarah.scott (at) gmail.com. I would guess him to be at least 3 years old, and he is an absolute gentleman. Like Coco, he didn't bark once the entire time he was here. He's not your typical border collie, he's more like a golden retriever in temperament - he is very laid back and affectionate.

Farley was very apprehensive about being near my chair at first, and preferred being in the back yard or garage away from us. He would always come when called to be petted, but when it was done, he would slink back to his lair. To make myself and my chair less scary, I put peanut butter on the rims of my chair and allowed him to lick it off. Next I attached his leash to Coco since she refuses to leave my side, and suddenly Farley was able to be around us and see that it wasn't so bad. He really did phenomenally well for a rescue dog n a short amount of time.

Did I also mention how gorgeous this guy is??? How anyone could give up this dog is beyond me. To be continued...

respect service dogs

bunnymay — Thu, 14 Aug 2008 23:08:00 GMT

My dear friend Holly recently dined out with her family and took her service dog along, as she always does. Unfortunately, the employees of the restaurant were ignorant as to the laws regarding service dog access, and what should have been an enjoyable meal with her family ended up being a decidedly unpleasant experience. Being the ever graceful person she is, she took this opportunity to educate the restaurant and the public at large about service dogs and persons with disabilities.

Below is the letter she wrote to her local newspaper "The Daily Item":

Respect Service Dogs

People with disabilities should be treated as valued customers, just like everyone else, and they should have their rights respected, as well.

Dining out should be fun and relaxing, but my most recent experience was frustrating and disheartening instead. I have been going to a restaurant in Lewisburg for 25 years. Our family has enjoyed the atmosphere and shopping. On this particular day, when we went for lunch, I had my service dog with me as I have had many times before at this establishment.

However, this time I was stopped by a dining room manager saying I am not allowed to bring my "pet" into the restaurant. I explained that my dog is a service dog as indicated by the jacket she wears. She looked at me as if I were a child who could not understand English, and repeated, "no dogs allowed." My mom, who was standing beside me, also told the manager that my dog is a service dog and she is covered under the Americans with Disability Act.

To better tell my story, I need to tell you a little bit about myself. I am a person with a disability. I have been in a wheelchair for eight years. While living with a disability, I had trained, with a trainer, my dachshund to be a service dog. The training took about a year. Because of two hip surgeries previous to paralysis, I cannot bend over and my dog helps me with things that I cannot pick up for myself. I take my service dog everywhere, such as work, doctor's appointments, hospital stays, restaurants, when I travel for work and shopping.

Usually, restaurants are most gracious and offer the dog water. After we were done with our meal, my sister and my nephews and I went over to a gift shop area, and I was stopped again, this time by the general manager. He apparently had been looking for me and wanted some sort of identification that my service dog is truly a working dog. I told him as I had told the lady in the dining room that she is a "service dog" and, under the law, I do not have to provide evidence. He still insisted upon having something, and I gave him the phone number for the Department of Justice regarding service dogs. His tone and manner were unfriendly, and I had to justify my disability to him. I felt very embarrassed since he was saying all of this in front of other customers who, by that time, had started to stare.

Restaurants and other owners of businesses should be familiar with the Americans with Disabilities Act -- it isn't just having a ramp at the front door. Restaurant managers should also treat those who have disabilities with respect, as if they, too, are valued customers who they would want to welcome again to their establishment.

If it can happen at a restaurant, which has a reputation as a family-oriented business that goes out of its way to make people feel comfortable, it can happen anywhere. This is not only discrimination against the disabled, but is also against the law.

Holly Hurlbert is a Williamsport resident.

more at Team Coco

the status quo

bunnymay — Thu, 14 Aug 2008 20:13:00 GMT

There's a lot of scuttlebutt going on in the disability community over the "Tropic Thunder" movie with regard to the mentally impaired character, and a boycott of the movie has been called for. What is most offensive is the use of the word "retarded" as comedic fodder, a decidedly negative term used for a population of people who let's face it, don't need it and don't deserve it. I for one am going to stop using it, because cruelty isn't really funny no matter what the context.

I've had some response from the dog training club, and sadly, it follows this same sort of logic, accepting the status quo because people with disabilities don't matter. Truly, there is a lot of hatred out there of people with disabilities, especially people in wheelchairs, because we represent one giant pain in the ass to most people. I Hate Stairs pointed out a discussion on the deviantART forum which starts out with "I hate disabled people, am I going to hell?":

They are just so slow and i think how much of a burden they are to their care-ers. just think how much money and emotional strain and stress that their parents must get. and to add to that, the parents would loose friends, possibly loose their jobs to pay for and look after their "child". I have made up my mind that if I, well, my wife, gave birth to a disabled child I will refuse it.

And it just gets worse from there, 34 pages worth. Now, I don't believe that all people think this way, but it's out there, and prolly in the back of more people's minds than I'll ever want to know. The most pathetic part of all of this to me, is that these people seem to have no idea that disability isn't an exclusive club. It can happen to anyone, at any time, and one day these people will age into it whether they like it or not. I've learned over the past three years that trying to change the minds of people that already have a poor attitude about disability is usually a losing proposition. Last night the woman from the dog training club, the lessons scheduler, called me back. She wasn't calling about my concerns with access, she called to convince me to take a different class, one that was more suited to our skill set. She ignored my previous statement that I was not going to sign up and spend money until I could be assured an accessible location, so naturally I brought this up with her. Her response was one of resigned annoyance, which is one I'm quite familiar with. I got from the club president that this is a new building they are using, and they are planning to mat it once it is built, and have no idea if it will be wheelchair accessible. Judy reiterated this, and added that they don't typically have wheelchair users in their classes or club (go fucking figure), and they are largely run by volunteers which limits their ability to comply with the ADA, whatever that means since they are collecting money for these classes. The conversation was a big slap to my face for being so uniquely difficult to deal with, though I kept my cool and simply responded by reiterating what the ADA defines as equal. Here's what the club president had to say about my issue with their K9 Karnival not being accessible this spring (which is why I'm pressing them now):

"As to the K9 Karnival, the entrances to the Special Events Building (headquarters) do have small lips. So whoever told you that it is wheelchair accessible acted in good faith, not knowing that you require an absolutely flush entrance."

about the new building:

"The area in front of the large front door (facing the road) has been paved with bricks. We have not yet moved into this building. We have to wait until the Ag Progress Days Exhibition is finished. Our plan is to completely mat the building. I assume that once the building is matted, there will be no lip at the entrance, but I cannot say for sure because I don't know. No one knows for sure. But in the off chance that the entrance is not flush, there will be plenty of people willing to help you."

It's certainly kind of him to offer the help, but it's not really a solution. Everyone gives me shit about not enjoying being lifted up like a "sack of potatoes", so I'll lay out my main reasons why I feel this way:

1) it's humiliating, takes away my dignity.

2) when I have agreed to this b/c I didn't want to look like a jerk, on several occasions I've been dropped, either damaging the chair (tires popped) or I fell out and was injured in the process.

3) I've got to stop justifying my disability and giving excuses for this.

So here's the thing: I've decided I will not be taking their classes or joining their club. Most likely this means I will not be competing in obedience as I had hoped. If I have scream this much just to get into the building, I can't imagine that further interactions are going to be any better. I wouldn't be able to expect these people to have any knowledge or belief of accommodations for disabled handlers in competition, and likely I would end up not being able to fully participate in the class. It's going to cause me stress, and I will likely not always be able to handle it gracefully and will lash out, not good. Since I live in a small town, I don't really have the luxury of having too many options, and after all this bullshit, I'm not in the mood to go through this again if I could find another club.

It's sad, or rather I'm sad, because I've found so much joy in training Coco, which has been a completely new activity for me post injury. It has also been a way for me to recapture my mobility vicariously through Coco, and I have been really excited at the idea of competing again. At heart I am a competitor, and I've always loved the process of setting and achieving goals. But maybe this isn't going to be it for me, and I'll have to find something else, and that is certainly nothing new for me in the post-injury paradigm. But it sucks.

This is why I got into advocacy, because this stuff happens all the time to me and other persons with disabilities, and I needed a way to contribute to changing society, instead of just bitching at the people who made my life harder. Such a huge part is the status quo attitude that persons with disabilities exist to make life harder for everyone else, and that we don't deserve equality because it requires too many resources which makes us a constant burden. Denying me an accessible entrance is allowed for the very same reasons that Jim Crow laws existed: society was allowed to believe that certain people didn't matter. In my particular case, I am being segregated from participating because of architecture, even though the ADA was passed to protect against this.

But in this case, I just have to say "oh well" and throw in the towel. So I have, and Coco and I will continue on with our status quo. Which happens to be going quite well lately, and I'll be posting a video soon featuring our latest and greatest training tool, the Manners Minder. Bonus to whoever guesses what trick this picture is working towards...

wah wah wah

bunnymay — Tue, 12 Aug 2008 00:03:00 GMT

I want to say something positive today, so here's this: I started taking methadone about a week ago - for the pain, not my smack habit. it's super cheap, and so far does decent job of taking the edge off. I wish I could say that it has turned things around, but that's not exactly the case, at least not yet. my pain is at a tolerable level, but I'm still adjusting and I've been in a total fog, more so than my usual. If you've emailed or called me and I haven't gotten back to you, blame the methadone before you blame me. I'm a hot mess.

it's the little things that set me off, as I have very little tolerance for frustration with the chronic pain. I tried to sign up for a dog training class today with a local club, and it was more complicated than I was in the mood for. I called the number listed for the class, and called to get more information - chiefly, accessibility information. To an able-bodied person, access isn't much but an afterthought and an assumption. "Well, it should be accessible" isn't really an answer to a person with a disability, because it doesn't take much, maybe a few inches, to make an entrance inaccessible to me. So I was pressing this woman to really and truly find out if the entrances were in fact flush with the ground. I asked her to find out, and let me know, but for whatever reason (read laziness) she went from "it should be" to "positive it is accessible" in a matter of minutes.

At this point in my life, I've learned not to trust these sort of assurances, so I asked her to tell me where the building was so I could see for myself. It's in the ag progress grounds, which is where I take Coco to run, and wouldn't be a big deal for me to check out. But yet again, this woman couldn't give me a straight answer. She was rambling off directions that were anything but coherent, so again I asked if she could find out and let me know, but again it was obvious that wasn't going to happen, both by her tone and the fact that she didn't take my phone number. I realize this may not be information she has at her fingertips, but I'm always willing to wait, but she apparently didn't want the hassle.

For the record, I attended an event the club put on this spring, in the same area but in a different building from what I can ascertain. I was assured first by email, then by phone, that the building was accessible. It was not. I luckily had someone with me to assist me, but I don't always have that luxury, and likely will not for this class.

It's not like I don't go through this constantly, but sometimes it just digs a bit deeper than I can deal with. I don't want to assume that the rest of the club assumes the same attitude, but I don't have much else to go on at this point, and I'm feeling soured about joining. I wrote the club president and explained the situation, pleaded for him to get me the necessary information, but who knows what will happen.

This is the reality of being disabled, and why people in chairs are at times bitter and caustic. I'm not held back by my own ambitions, I'm held back by societal attitudes that constantly tell me I'm not wanted and my needs aren't important. It's not maliciousness, it's ignorance.

What to do? Right now I have to fight back the tears and anger so I can do what's necessary to attend this class, but sometimes it hardly feels worth it to fight so hard for such small victories.

[http://www.mndtc.org/public/classes.htm]

paws up

bunnymay — Mon, 04 Aug 2008 19:46:00 GMT

from Team Coco

netiquette

bunnymay — Sat, 02 Aug 2008 03:09:00 GMT

after reading tim's excellent post re: community, I feel compelled to post this:

3 things -

1) flaming is almost always a bad idea. oh wait, NEVER. people say stupid, ignorant shit to me all the time, and I don't decide to burn down their house for it, I MOVE ON.

Flaming is the act of sending someone an outrageously insulting message, whether by private email or in a public Usenet posting, usually because you disagree with something they have said. A good flame mixes a razor sharp wit with a devastating put-down so that the other person will only make themself look silly if they dare disagree -- "The absurdity of your ideas is exceeded only by the incoherence of your remarks, beginning with..."

Some people support the use of flaming to enforce good netiquette on mailing lists and the Usenet. A flame can sometimes be funny, and may feel good to the sender, but should be resisted whenever possible. A flame can give the impression that you are unable to respond with more reasonable language, and can genuinely hurt the other person. In general, you should take a disagreement with another user off of a mailing list or news group, and into a civil and personal exchange by email between the two of you, letting others carry on with the discussion. Also, keep in mind the considerable limitations on accurate communication of emotion in a text medium.

flaming it's not typically done in a well thought out, coheasive way. it's usually reactionary and filled with invective that would never be aired face to face. so the lesson here is DON'T DO IT. I've caught myself doing it from time to time, and straight up written apologies, because the "punishment" does not fit the "crime". I'm not perfect, I may say things that will offend people, and for that I apologize. But I'm not a bad person, and it wasn't my intention to hurt your feelings. Sometimes I'm just a moron. So are a lot of people. that's what you get in a community of people who never actually meet, and as such, cannot effectively communicate.

2) r-e-s-p-e-c-t my lack of emotions

"Remember that subtle emotions and meanings do not transmit very well over email. Satire and humour is particularly hard to transmit, and sometimes comes across as rude and contemptuous. Particularly avoid sarcasm, which rarely communicates well. Similarly, don't over-react to email or postings you receive. What looks to you like an insulting or mean message may only be an absent minded and poor choice of phrasing, and not meant the way you perceived it.

Be particularly polite when disagreeing with others. Wherever possible, acknowledge good points made, and then respectfully describe the areas where you disagree to produce the most productive conversation."

electronic media isn't the same as face to face communications, it's in fact inferior. most of us don't sit around consulting the chicago manual of style, we just let it fly and don't think about how it may come across. something I think it hilarious may in fact be insulting to you for reasons I can't possibly know or understand. I would so much rather you educated me than disciplined me, really. when reporters use terms like "wheelchair-bound" and my blood starts to boil, I can either flame away in the comments, or I can send them an email in which I explain the concept of person first terminology. so if someone posts something that pisses you off, you can either get offended and strike back, even though chances are good that it wasn't at all intended to do that, OR you can write them a PRIVATE email with well-thought out points to change their mind or see the error of their ways. the latter takes a lot more effort, but the payout can be potentially a lot bigger because you've hopefully just made the world, and by extension disaboom, a better place for everyone.

3) don't blame disaboom employees for the idiocy of others - this site is FREE and is run on limited resources. referring is not likely in anyone's job title, and personally, I'd rather spend their time improving functionality or securing further sponsorship so we can keep our wonderful haven on the web. so be grateful that we have this, and keep the people that make it happen happy, cause we need them. policing your flaming war is not going to do that, I'd personally rather chew glass than be involved with petty battles over perceived insult. maybe say thank you instead or how dare you. really.

for a full primer on netiquette basics, click HERE.

end of rant.

meh meh meh

bunnymay — Thu, 31 Jul 2008 22:09:00 GMT

things haven't been so great here at team coco HQ for awhile now. for reasons both known and unknown, I've been in a lot of pain that refuses to relent. it's nothing short of miserable to live this way, and it makes writing & photography subjectively impossible.

it was also 3 years on tuesday since my accident, and I can't say I had a whole lot of important insight to share about that. the insight I've had lately isn't really post-worthy, mostly because it wouldn't be me saying it, it's this xenu-like thing that has hijacked my brain. I wrote a couple posts about it that went nowhere, because my mind is 90% occupied with pain and opiates, and if I force myself to ponder my life trajectory, all I can think is that I'm going nowhere fast. which isn't really an accurate representation, nor one I care to dwell on for any length of time.

Times like these, I'm grateful to have the world's most affection-crazed dog on the planet. It has at times made training very trying - getting her to stop jumping up continues to be an issue because she's JUST SO DAMN FRIENDLY. Coco is like the Glengarry Glen Ross of affection real estate, she's "alway's closing" when it comes to being petted - stalking, watching, waiting, seizing. If she's feeling especially desperate, she'll bring me something, anything, just to hear the magic words "paws up" which means it's time to climb up on my lap. Where I would be without her right now, I don't want to even think about. It's more than nice to feel so loved when I'm feeling so unlovable, it's keeping me from completely losing my mind. I hope anyway.

car pacing

bunnymay — Thu, 31 Jul 2008 16:22:00 GMT

One of the more difficult things about being in a chair and owing a collie is getting ma bitch enough exercise. A tired dog, after all, is a good dog (thanks D). A walk is not enough in the case of a collie, NOT ENOUGH. They were bred to run hundreds of miles a day herding livestock, so a jaunt or two around the block isn't going to cut it.

I've got a huge backyard fenced in for Nut, about half an acre actually. We play fetch at least once a day, and she's free to roam all she wants, but the problem is that she'd rather play tug and refuses to leave my side. Going to the dog park has helped, but there's really only one dog that will play hard enough and long enough to tire her out, and we rarely see Dakota. It's been a real predicament, and Coco's rambunctiousness can sometimes drive me over the edge of insanity. I can completely understand why D. advised me against having one, they are not for everyone.

But since Coco clearly is the collie for me, I thought and thought until I came up with a solution: car pacing. About a mile from my house is the Ag Progress fields, where they hold the annual agriculture exposition. It's got acres and acres of fields connected by winding dirt roads, and is the perfect place to run Coco. Basically, I toss her out of the car and then drive around, stopping periodically to give her water breaks or let her sniff for a bit. I'm careful to always have an eye on her at all times when the car is moving, and only going when it's relatively cool out.

Generally we don't see anyone or any other dogs out there, but yesterday we suddenly started hearing a bunch of frantic barking, which we found was a flyball group practicing. So when we were done, we drove over and watched for awhile. Amazingly, Coco did not whine, bark, or pull to get at the other dogs, which is unheard of for my little town greeter. A tired dog is indeed a very, very good dog.

bang bang

bunnymay — Wed, 30 Jul 2008 02:35:00 GMT

the blue place

bunnymay — Thu, 24 Jul 2008 16:46:00 GMT

I read Nicola Griffith's amazing "The Blue Place" about a year before I was injured, and loved it. About a year after, I read it again and felt like I was reading it for the very first time.

Before it was a detective story with one of the baddest-assed broads ever penned, Aud (rhymes with shroud).

After? It's the story of a woman, the author, who has lost her physicality and has reclaimed it by writing a story about the hopes and dreams of her former self. Not that you'd pick that up, I just happen to find out that Nicola Griffith had MS and had lost her own physicality much the way I have. Two tough chicks forced to go soft by no choice of their own.

Back when I was playing college field hockey, I used to spend time visualizing myself playing, going over a particular move. I always found as I became more skilled that visualizing became easier, I suppose because I had finally figured out what muscles had to go where at precisely when. These days my visualizing seems to happen most in dreams, and the weird thing is that I'm forever forgetting how to walk. When I walk in dreams now, it feels like I'm underwater, lost and limping against the current. It's as if I no longer even know how to put one foot in front of the other, even though I did it for 29 years. That part of me is becoming a stranger to me, which really isn't as awful or bad as it sounds, as it is turning out.

"Who are you when you have nothing left but your inner resources?"

tbi

bunnymay — Tue, 22 Jul 2008 04:51:00 GMT

Something I've mentioned here a few times without really explaining is that I have a Traumatic Brain Injury. I haven't wrote much about it, mainly because I didn't find out until this fall, and didn't really understand the full effect it had on my life until the spring. I guess I needed time to wrap my brain around it, and sort out what was the TBI and what was a "normal" reaction to extraordinary circumstances. I also felt a lot of shame about it, because I behaved for a very long time, and continue to do so at times if I'm not careful, in a fashion that isn't all that flattering and wasn't who I pictured myself to be. But lately I've come to accept these things as what they are at face value instead of character flaws, and that makes my TBI a lot easier to talk about here.

So I was injured in July '05, but didn't find out about the TBI until this past fall (I think, my memory is practically worthless now). A lot of people, who are generally the ones that don't believe me, don't find this believable. So I'll explain it here for all the doubters, though I've got to stop doing that, but I will since to most ppl it is inconceivable that the medical system could fail in such a profound way. Which is lafable to me, because it fails me on a near constant basis for things way less profound than the health of my brain. But whatevs, I'll bite...

First off, you have to understand that I've been treated by a lot of doctors and several hospitals, and I've moved since I was injured three times, so there have been a lot of cooks in a lot of kitchens. But it seems to me that the ones I had while in inpatient rehab (the first time) should have educated me about the possibility that I might have one, or at least I wish they had. In their defense, and to help you to understand, I was really, really fucked-up physically during that time, and far from stable during my stay and well into my first year. Most of my concern early on was establishing a baseline of health (which didn't happen, hasn't happened yet) and gaining independence. In short, I wanted the hell out of the hospital and then the hell out of my parents homes.

So how did I find out about the TBI? I was studying for the GMAT, aspiring at the time to make everyone happy by going to bidness school, about 9 months after the accident. This was right after my revision surgery for my failed instrumentation in my back - a 12 hours surgery with at least a dozen doctors, and a two week stay in the ICU afterwards. It nearly killed me, physically, emotionally, and mentally, and I was in uncontrolled and severe pain for many weeks after. Which maybe wasn't the best time to study for the GMAT, but I felt desperate to move my life forward or at least prove to others that I was, so I would study for hours and get absolutely nowhere. I couldn't retain anything, and even more troubling, I wasn't able to process anything fast enough to get through the test in the time allotted. Since I was taking a shit-ton of oxycontin, I decided to call the game on account of chemical insanity and postpone until a later date.

A year later, I was at it again. Once again, I was unable to get through the test fast enough, no matter how hard I tried (not to mention my sudden inability to do math, which had been the crux of my career up until this point). I was taking opiates for pain in a very small amount, and I figured that must be to blame. When I asked my doc to sign a paper allowing me more time because of the pain medication, he started asking me some rather pointed questions. Among them was whether I had lost conscious during during the accident, which I did. That alone is apparently enough to cause and indicate a brain injury, which he explained that I had in a mild form. At that point, I chucked the idea of bidness school for good since I didn't really want to go anyway. Beyond the processing, memory, and attention deficits, I still wasn't really sure what this new diagnoses meant and how it affected my life.

A few months later, I was at a CLAC meeting where the brain injury society did a presentation which among other things, sought better screening and treatment for those with mild TBI who generally go untreated. It was all I could do to hide my tears during that presentation, because everything they were talking about had happened to me, and I felt a deep sense of shame and embarrassment. It was during this meeting that I realized that a lot of what had been going on emotionally since the accident had a lot to do with the TBI, and it hadn't been because I had turned into this demonic creature because of the chair. I had dealt with things the best I could, and as it turned out, I didn't have the same capacity to deal with stress I once did, or the way other people w/o TBI are able. The shame comes from the fact that I can't explain, and frankly most ppl don't buy it anyway, that a lot of my "bad behavior" isn't entirely my fault, so I still feel responsible for acting in irrational ways. A part of me feels like I would have be able to control it better, if only I had known about it sooner.

I assumed I had become unfit for society because of the isolation of being disabled and having to rebuild my life. I had trouble with repeating myself, telling the same stories over and over, or having any concept of what day or time it was. I had stopped reading books, because I couldn't comprehend anything after and found myself constantly having to reread each paragraph but still not grasping much of anything for very long. I figured I was just too depressed to read books anymore, even though reading books has been my lifeline my entire life, a precious escape I employed often. I assumed that my inability to handle frustration and a temper that would make bobby knight blush was because of the chair. But I was wrong, I have a mild brain injury that causes symptoms that have anything but a mild effect on my psyche and life.

So how have I learned to cope? For one thing, I sorta stopped telling people things about myself unless they asked a direct question because I got tired of being humiliated for repeating myself. If it is some sort of news that is of consequence, I'll circle around the topic and try to get a feel for what they know until I figure out if the coast is clear. Because I get overwhelmed quickly by stress, I try and only deal with one bureaucrat per day - social workers, medical staff, call centers, whatever. If I'm upset or angry, I shut the world out until I can distance myself from the situation enough to figure out if that anger or frustration is warranted. (Which pisses a lot of people off, some who have written me off unfortunately, for not answering the phone.) I write down EVERYTHING and constantly refine my various systems for retrieving information - which is the hardest part, figuring out where you put the things you meant to remember.

I also apologize a lot. I write heartfelt letters, cards, emails to people I lose it with, and explain that I was wrong for doing so. It doesn't matter most of the time who was wrong or right, it just matters that I responded in a way that didn't fit the situation. I also have to remember not to overshare or otherwise be inappropriate in relationships, because I don't always read them correctly anymore, though I'm not sure I really ever have. So maybe the TBI in some ways has made me a better person than I was before, if you asked me to name a silver lining.

I think that if I hadn't been forced to deal with my disability on my own, I might not have learned to cope so quickly. If I had someone else serving as my proxy and holding my hand throughout it all, maybe I'd still be back where I was when it first happened. I'll be honest here, I really, really wish I did have that kind of shield and didn't have to go through every single battle alone. It's a brutal, harsh way to go through life, and I wouldn't mind not having life be so consistently difficult for a change. Not that my life is so bad, because it's not, but the shit has been harsher than maybe it had to be, and I've long grown tired of that being my MO.

Lest you think the TBI is all bad, it's actually quite great in some ways. I never in a million years would have described myself as a creative person prior to the accident, not at all. My first clue that I had the TBI was actually when I started playing piano in my dad's basement, and although I had played a bit before, it was nothing like this. I suddenly "got" the music in these very profound ways. I took up quilting, and soon after that I tried out just about every craft under the sun. Most importantly, I took up photography and then writing, which is why I'm blogging here today, which is what I've found to be (hopefully!!!! so much hopefully!!!) my calling. Sure, I could write the hell out of a technical paper on the effects of fluoxetine (prozac) on weightloss (works in the short term, not so much in the long term), and I wrote just about everyone's resume who asked and that list continues to grow, but ask me to write one creative paragraph and I was at a total loss. Now, I have learned to restrain my creative impulses, at least some of the time, which yes, is another way I've learned to cope with not always knowing what is a good idea and what isn't.

All I can do is take what I've got left and try and make the best of it, and hopefully good things will result. I may not be the hottest broad in the room anymore, my brain may be addled, and my legs no longer work, but I'm not a bad person or a loser because of it. I'm just fine, just like this, today.

stuff white gimps like first edition

bunnymay — Thu, 17 Jul 2008 16:28:00 GMT

Stuff White People Like is a hilarious take on a very specific demographic. Hands down, my favorite entry is about their musical tastes when it comes to rap, and it's partner piece. Since it was a guest column, it got me thinking that maybe I should weigh in on white people and disability as a humorous attempt at disability awareness. The editor and now published author of SWPL, Christian Lander, agreed. Then his site/content got bought by target.com, went big time, and forgot all about it. I was unable to wow him suffienciently with my first draft, and I understand why, but I was bummed all the same to be rejected. So below is part one, my initial request and his response, my draft to follow shortly:

hello white sir,

I am a white girl (ok, 32) with a visible disability (wheelchair) and am writing to urge you to write a post/column/chapter on white people and their interactions with persons who have disabilities. becoming disabled later in life, it was a HUGE shock to see it myself, since as a white person, I had always considered myself to be giving equal opportunities to all. I was also convinced that I was not a racist, but when you become a minority, you realize quickly that the world is actually quite skewed.

I've often compared it to being black in this country of ours, though that is a woefully shorthand way to explain it to a rich white man like yourself. you'll say "but I'm not rich!" and I'll say "exactly!!!".

but back to the issue at hand, which is that I think you should use your far and often read blog to do some good, like being a champion for disability awareness. added bonus, white privileged white ppl are often the worst when it comes to 'assuming' things about me and then pimping me out as their 'good deed friendship'. double score if you befriend a black man from the ghetto who became reliant on a wheelchair because he was involved in gang violence and has since worked to rid the world of his prior ilk.

what are some of the comical aspects of being in a wheelchair and dealing with the whiteman? oh my, I could go on and on about this, really. for one, many will refer to their friend as 'sarah in a wheelchair', but worse is the "she's an inspiration!" when I and the rest of the minority folk know that I'm just doing what it takes, like everyone else, to get by. white ppl by and large are the ones that accost me in public and demand to help me, despite my not wanting it or needing it. most privileged white ppl have not dealt with a wheelchair user, so its a big chance to DO GOOD and acquire karma.

so yes, I could go on, and I do think there is enough comic relief in this topic that could also show you have a responsible side, if you care.

attached is a pic of me and my anthropomorphic dog, coco. also a service dog, but that's not really the point here...

best, sarah scott

response:

HA! Ok, Sarah I'm going to need to collaborate with you on this one. I think we could definitely do a post on "having disabled friends" and then figure out how to go from there or something. I think there is a great thing in here about white guilt and their absolute confusion and fear about what to call someone who is disabled.

You think you can help me out?

-Christian

Stuff White People Like, Special Edition

bunnymay — Wed, 16 Jul 2008 22:25:00 GMT

the phrase "curry favor" holds a special place in my heart, harking me back to a very specific era of my years in nyc. It was during the fall after 9/11, during the time where we all felt the party had ended permanently, and it was no longer ok to laugh anymore. anthrax was all up in our shit at this time as well, it even infiltrated (false alarm) where I was working at the time, Martha Stewart Omnimedia. it was a time where everything felt too sacred, too serious, and too tragic, for there to be room to laugh.

During this time, I went to see a comedic film festival that featured, among many talented others, Janeane Garofalo (though it was absolutely Patrice who brought the house DOWN with his brooklyn-anthrax shtick). Janeane's routine included a riff on broads who think thongs belong outside their pants, to "curry favor" from the male sex. sometimes these things stay with me, and I think it has more to do with the sudden surprise of laughter that night than the actual joke.

with this black and rainy cloud hanging over my head this week, I still manage to smile and laugh, because I have to if I want to survive. and so I write things that maybe make me laugh, but not always my intended audience.

as follows is my first and only draft for Stuff White People Like which I've decided will never be edited. it's time to let go of that particular dream, so I'm posting it for the world to mock, so I may finally be free of the failure. Clearly, I had a hard time with making things that are funny to ppl in wheelchairs funny to ppl who are not, which was prolly a big indication of where I was at in my recovery -- the place where it feels just so obvious and normal that you forget that you're in a very exclusive minority that most people cannot in any way relate to. so gimps out there will likely enjoy this, and the able-bodied will scratch their heads and wonder if it's okay to laugh. and the answer is yes. always.

stuff white peeps like: special edition a guide to using white guilt to curry favors

The wheelchair user holds a special place in white people culture. It is one that is generally grossly misunderstood and open to all sorts of etiquette blunders that mean opportunities to curry favor if you happen to be a wheelchair user yourself. Having a friend who uses a wheelchair is important to white people because it shows they are not only sensitive to the needs of the disabled, but it enables them to feel like they are doing a good deed each time they interact with you. White people generally center their view of the disabled based upon the Tiny Tim model, the myth that all people in wheelchairs are heroic for doing the most mundane things. So you ask, how can I use this to my advantage? It won't take long to get the hang of it: White people like to use humor in situations where they are unsure of the proscribed way to act. Since most white people watch "Curb Your Enthusiasm", you can expect comments like "don't you need a license for that thing?!" or "hey! that thing really gets the lead out!" or "watch for the speed trap!" or sometimes will even make vroom-vroom noises as you wheel by on your way to picking up a quart of milk. Do not take the bait here and react with anger. Instead, stop whatever you are doing, and ask them in a befuddled quizzical manner "um, were you speaking to me?" and look around like it must have been meant for someone else. This will cause your white person to turn red and start to stammer, because they will have no idea what to say to you and may even have difficulty looking at you.

let the uncomfortable stammering continue for just long enough that they start trying to shuffle away, and at that moment, ask them to help you reach something, and then proceed to make them carry your groceries and assist you for the duration of the trip. they may even ask to pay for said groceries, as they will assume you are unemployed, indigent, and live in a nursing home.

there are some caveats to white people society that you should be aware of before embarking on a relationship. typically you will be invited to a dinner party where the host will quickly realize that you will be 'in the way'. likely you will be tucked away at the table while everyone stands and mingles. the key here is selective eye contact: because they are standing and you are marooned in the corner somewhere, white people will innately feel bad for you and wonder about how sad and difficult your life is since you are unable to fully participate in their conversations about vintage t-shirts and why analog is so much better than digital. once they realize this, they will feel guilty and stare in your direction. KEEP YOUR EYES FORWARD unless you are certain this is a person you can either stand talking to or will be able to curry favor from. only make eye contact for the following reasons: you are out of either wine or hors d' oeuvres. otherwise the white person will be overcome with guilt for having stared at you that they will feel compelled to talk to you at length about how inspirational you are to be there.

Conversation with white people is very tricky, and you will not want to attempt this without knowing the type of logic you will encounter. At a dinner party, there will likely be conversation that revolves around their attempts to save/better the world by the following: shopping at whole foods, owning a hybrid car, and watching socially conscious films. Once the topic of "murderball' has been covered (note: the whiteperson who has seen this movie is highly evolved, proceed with caution as they will have gleaned their knowledge from the film and will feel very strongly that those portrayals are accurate. an outright declaration that they are biased will cause the white person great embarrassment and they will not be apt to do favors for you if this happens.), they will next bring up 'million dollar baby' and look to you to provide insight. this is a very dicey situation, as clint eastwood holds a very special status in white culture, and you will also be countering their interpretation of the 'film' from being a metaphor to go out fighting, to being a film about death being preferable to disability. I do not recommend you argue this point, as you will embarrass white people in the process by pointing out their ignorance, which will lead them to mark you as bitter instead of inspirational. This is social suicide in white culture people, so talk about how wise morgan freeman is or how great hilary swank was as a man. Very few crips have battled back successfully into white culture after losing their inspirational status. Rosie O'Donnell lost the heart of the midwest when she went "angry gay" instead of "fun gay", and look what those bitches on the View did to her! social suicide people!!!

there are aspects to your interactions with white people that can be downright fun with a small amount of improvisation or advanced preparation. white people will often be curious about why you are using a wheelchair and will rudely ask you "what happened to you?" with very wide, worried eyes. if you get angry and say something to the effect that it is none of their business, or counter with "what happened to all your hair baldy?", you will be reinforcing that all people in wheelchairs are bitter and nasty. they will not understand that the wheelchair functions the way glasses do: a sometimes annoying but nevertheless essential tool you use to do the things you wish and live your life. instead, use this opportunity to educate white people that wheelchair users aren't sickly invalids, but are in fact ardent risk takers who have found ways to do the seemingly impossible. Even if what happened to you could have happened to anyone, like say a car accident, use this as an opportunity to show your superiority which will secure future favors and worship. Bonus points for incorporating topics white people status symbols. for instance, you were backpacking through europe after graduating from *ivy league university or boarding school* and you were robbed and shot by a band of gypsies. or you were in the peace corp creating third world irrigation systems when the tsunami hit. attacked by a herd of water buffalo while on african safari. white people are too worried that this could happen to them, and will be nervous to be talking to you, and as such will believe anything you say. if you have previously been labeled bitter, you're going to need to drop a bomb of stuff white people like if you've got a chance at becoming inspirational again and be able to curry favors.

Most white people will also assume that the disabled are indigent and unable to work, unless it involves something like transcription, radio, or dispatcher. some will assume that you are filthy rich because you had a good lawyer, but most will assume you are either unemployed or work from home as an accountant. again, this is a great opportunity to gain favors for being inspirational, but only if you assure them that your employer was forced to accommodate you in huge and expensive ways that you had to fight for alongside your attorney. white people will be disappointed if this is not the case, or if you're not using your wheelchair to fight for social injustices, presumably with the help of lawyers. this is a very tricky situation, because if your work is at all mundane or doesn't require heroic accommodations and lawsuits, they will assume you got the job because of your disability or you are not being truthful with yourself as to what your capabilities are. my advice is to go with an answer than will confound and awe the white person, such as whitewater canoe guide, or everest sherpa. trust me, you will not be questioned.