Thursday, February 23, 2012

Wheels & Witches

I am finally recovering from the madness and intensity of last weekend's PantheaCon, a Pagan convention held every year in San Jose over President's Day weekend. I spent the vast majority of the weekend using my brand new wheelchair, which truly was an amazing help. I often spend a great deal of time at events like this dragging myself along with my cane wishing I could just go home (even if I really do want to be there). With wheels, I was able to get around quickly, zoom down the ramp towards the hotel's elevators, park myself in inconvenient locations that caused people to interact with me AND get myself and a friend or two to the front of many long lines. I had so much fun, too. It really was such a huge difference from past PantheaCons where the day would wipe me out and leave me with no energy for the late night parties.

Something that I had to face and initially had a very bad reaction to was the amount of what I've heard called "ableism" that I faced over the weekend. On Thursday, while staff and a few attendees were arriving, I was milling about the hotel looking for something to do with myself before I eventually opted for a glass of red wine in the lobby bar and some knitting and journal writing to pass the time. While I was milling about, I faced the uphill battle (literally) of the ramp from the elevators towards the hotel lobby. Nearly every time I faced this ramp through the weekend, one or two people would ask if I needed help and all were courteous towards my response of "No thanks, I've got it" except for one person. He ignored me and grabbed my chair, pushing me up the ramp and through the hotel lobby. I had no idea who he was and so turned around in my chair, thrust out my hand and introduced myself. He stuttered at first and then introduced himself as well, still pushing my chair. I tried to remain polite, engage him in conversation and not totally freak out and scream at him for being such an insensitive moron. Turns out he was there for a chemistry convention, not PantheaCon. I was glad to be rid of him. Thankfully noone else did this to me and only people I knew pushed my chair, and only with my consent, after this. In fact, some had fun pushing my chair very fast while I held my arms out straight ahead. My chair pusher clearly needed a cape to complete my fantasy scenario here.

The weirdness of being treated differently didn't stop there. A few conversations were steered in the direction of my personal medical issues and treatments. I was ok discussing this with people I consider close friends, and knew they were concerned about me, but felt uncomfortable when it came up with people who only knew me through Stone City and not very personally. I tried my best to be polite through all of it, reminding myself that people are being well-intentioned, for the most part. Then one morning I was hanging out with my 10-year-old son while he helped my dear friend pass out the Con newsletter to people who passed him by in the hallway. At two separate points during this, someone took a newsletter from him and brought it to me, saying something like "here you go" and then fumbling with apologies when I told them I was helping him pass them out, not waiting for him to give me one. (Even if I was, I think I can get it myself, thanks.) My friend solved the problem by keeping a stack of the newsletters on my lap so that it was clear I didn't need to be handed one. A silly solution for a silly (and annoying) problem.

Whenever this crap got to me deeply, I returned to the registration table where I knew that my fellow reg faeries were loving and accepting and, thankfully, sitting down where I could see them face to face better. Where I found love and support was among my true friends, old and new. Among my fellow registration staff, I made some amazing new friends who I found to be incredibly supportive in empowering ways. I felt loved and cared for as an equal and never once did any of them make me feel like a burden because of my disability. My old friends also joined in this acceptance and support. I don't think I could have made it through the weekend without this love.

I gave quite a bit of thought to how people treat me differently when I am in a wheelchair and I wanted to point towards a few resources for non-wheelchair-users and able bodied people to learn how to politely and respectfully deal with people who use wheelchairs and/or are disabled. I will warn you that these resources vary in attitude and not all of them are polite. There is a certain amount of frustration among disabled people about impolite behavior towards us that can cause people to not be able to approach this subject with a great deal of niceties. They do, however, still have some excellent points to make and I am including them for that reason. Not every lesson in life can be delivered with a sugar coating.

Etiquette for non wheelchair users
WheelchairNet: Wheelchair Etiquette
PatientC: The Smartass Guide to Wheelchair Etiquette
Disability Etiquette: Beyond Wheelchairs

To address my personal needs that you may not be aware of (since it's mostly friends and acquaintances reading this blog rather than complete strangers), I will answer a few questions I know were at least thought, if not spoken aloud, recently. What I know about my condition is that it is degenerative and began about 8 years ago. It may or may not be connected to the car accident that occurred when I was 19-years-old where I was hit by a car in a hit and run accident while riding my bike. My MRI shows spinal stenosis in my entire lumbar region along with spinal arthritis as well as a protuding cervical disk which makes it very painful to look up. (Think about this when you're talking to me when I am in my wheelchair or otherwise seated.) My right leg often drags and has other assorted issues that have no currently known cause. I can get up and walk around but my gait & muscle strength vary constantly. I may suddenly fall or not be able to get myself up out of a seated position. The amount of frustration I am constantly processing may occasionally cause me to tear up or tense up. I won't put myself into a situation that I don't feel ready to deal with the potential consequences of, so please don't feel the need to overly mother me. When I need you I will speak up. (But I am incredibly stubborn.)

One last thing... Going to a party in a wheelchair is very interesting. First of all, my view is of a sea of butts, tummies and other things you hold at the midrange of your body. I notice things you keep on your person that I may not have noticed from a standing position. That was interesting. I made the best of the crowded room as much as I was able to. Having someone who is willing to be your fetcher of things such as drinks is awesome (thank you Chance!). But, once people start to get drunk in a way that causes staggering, it's time to blow that pop stand as soon as possible. I am pretty selective as to who I'd like to have falling into my lap.

Oh yeah, those links mention not leaning on the wheelchair, one exception I found is with a group of friends who are naturally touchy. If you'd lean over onto my shoulder were I not in a wheelchair, it is acceptable for you to lean up against the back of my chair too look over my shoulder. Added bonus for chiming in with "Is this ok?"