Most of my friends now live in apartments in the city. This is a pretty boring observation given that many of us are now in our mid-20's and we're "at that age" where apartment living is an assumed norm. But I should add that most of my friends also do not use wheelchairs so apartments have a tendency to be less than wheelchair-friendly. Recently I was invited to two Halloween parties, both of which take place in living arrangements that are up at least a few flights of stairs and as one of my friend's put it "it's not the most Sandy-friendly set-up.."
Immediately there are always several questions that come to mind: How do I get around this? Or should I say, how do I get up there? What do I do once I'm in the apartment? How do I get to the bathroom? Where do I sit? How will I get back down? Where do I leave the wheelchair?
Long-time readers of the blog know that there are few things that I will not try at least once. Taking risks is something that I not only willingly do, but they are things that I seek out (much to the dismay of my family, doctors, and teachers..) So when I was in college I never thought twice about having friends carry me up the stairs to inaccessible dorms; I also found it a blast to trek through full blizzards & piles of snow that easily towered over me; I muted the silent screams of horror in my head when my friend told me that I should just climb up the 3 flights of stairs to his dorm room (and then slide back down again); and I certainly thought little to nothing of letting friends carry me up and down front steps of their apartments after parties... in the dead of night... after having had a few drinks. In college my friends and I also found out how convenient those office roll-y desk chairs are when I needed to leave my power wheelchair outside, or stashed away behind some bushes behind an apartment. Though the chances of someone stealing my power wheelchair are slim (first they need to learn how to turn it on, and then afterwards they need to learn how to not run over themselves while steering the joystick...then they need to try to squeeze their ass into the small seat..), most of the time my power wheelchair has been locked with a simple bike chain to the front stairs - in the event of snow or rain a towel or some other such covering has been thrown over the seat.
Having gone through enough 'training sessions' for aides and other school administrators to learn how to carry me, I have become my own advocate and expert on "the best ways to carry me." There are three general categories of questions that I ask myself before taking the plunge. First: Assessing the Carrier. Second: Infrastructure & Environment. Lastly: The Event Itself.
Assessing the Carrier: The qualifications are fairly basic, surprisingly. The bottom line is if YOU are comfortable carrying me, then I will be comfortable being carried by you. If you are nervous and uncertain, I will probably also lose confidence and get freaked out by your own self-doubts. Trust yourself as much as you can but don't lie to me or fake it! YOU should not feel bad if you don't think you will be able to carry me; I promise I won't hate you forever (or at all), and I definitely will not think any different of you. I understand that it's not something everyone feels like they 'innately' can do or are comfortable doing. Seriously, I don't mind. I promise.
Infrastructure & Environment: Here I mean that I usually quickly assess the actual infrastructure of what I will be going up/down. These are a few questions that run through my head while I am checking things out - Are the stairs crazy steep? Are they rickety? Is it more than 2 or 3 flights up? Are there landings? Is it a well-lit area? Will there be children running up and down at the same time? Can I see myself dying here? (That question is only semi-serious).
The Event Itself: In other words, what will we be doing? Is it a crazy game of laser tag? Will it be necessary that I have access to my wheelchair or some other form of mobility? Will we be watching movies? Will we be eating and drinking? Drinking games? Crazy dance parties? Or maybe it's a game of let's have the enormous pet cat/dog chase Sandy? Whatever it is, I need to know what we'll be doing for my own comfort levels. If I need access to my wheelchair then I will plan to bring my fold-able wheelchair. If we will be eating/drinking I will need to know about access to the bathroom. If we will be drinking, will the stairs be okay for a somewhat tipsy person to be carrying me? Or maybe I can just crash on the couch for the night?
One last note about 'the event itself.' Many times people assume that because I'm in a wheelchair I need to have special medical accommodations or need specially adaptive medical equipment. While it is true in my own home that I use some of these things, I never expect others to have access to these materials. In fact, most of the time when I was a kid my parents simply put two chairs together facing forward... and that would be my bed for the night at a hotel/motel. I have slept on the floor plenty of times, couches, one time even crawling into a closet - the point is.. if I'm tired enough I will be able to sleep anywhere. And as far as my personality goes, if I am not hurt or bleeding you will rarely hear any complaints from me. I have had enough experience with the 'real world' to know what the bestest accessibility accommodations are like, and have also seen what the worst accessible accommodations are like. 99% of the time everything else just falls somewhere in between and that is just fine with me. My priorities are such that I will do everything possible to be able to hang out with my friends and in my experience everything else will just fall into place.
One of the best explanation of how I deal with my social life. Most of the new parent out their won't let an aid carry their child I'm like get real people, prepare your OI child for the real world and dont sweat the small stuff.
ReplyDeleteI acess every invatation I get the same as you have discribed and I don't expect my friends to have special equipment either. I think you should post this whole blog on OIF I would do a world of good for a lot of OI familys. I dare to think the next generation of the oiers are going to be afraid to try anything, the way they are being brought up.
Thank you! But I should admit that my parents were incredibly over protective of me and I didn't really do any of these more 'risky' things until after I gained my independence. It was probably BECAUSE my parents were so over protective of me that I wanted to do everything I could the second they weren't watching! :-P And even still I would never tell them half the things that I do now! ;-) With that said though, they definitely encouraged my full participation in as much as possible! Thanks for the comment!
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