When talking about my disability, I like to emphasize that while my life is in many ways different than the abled, it\u2019s by no means worse or lessened in any way because of it. I want to re-emphasize that disclaimer for today\u2019s post.<\/p>\n
I\u2019ve talked a lot about the ways my disability has affected my body image, my sexuality, my confidence, my social interactions, etc., and all of those things are important to consider when writing a disabled character. But today I want to focus on the ways my disability affects the logistics of my life. I obviously do not speak for all wheelchair-users (as with all disabilities, there is a LOT of variation from person to person), but hopefully this will serve as a good starting point for anyone writing a wheelchair-using character.<\/p>\n
Getting ready for the day tends to be when my actions vary most from the typical. Growing up, my parents helped me with these things; in college, when I lived on my own, it was my personal care attendant. For ease, I\u2019m just going to say \u201ccarer\u201d here, because the routine stays the same.<\/p>\n
Getting out of bed<\/em>: The first step in any morning is to get out of bed. Simple for most people, but a tiny bit more involved for me. My carer wakes me (one of the benefits of my disability is that I have a human alarm clock, which is much more pleasant than a BEEP BEEP BEEP<\/em>), and pulls the covers down. I sleep on my right side, mainly because any other position is painful, so my carer rolls me onto my back and onto the sling they\u2019ve placed behind me. I tell them how and where to move me so I\u2019m comfortably centered in the sling. Then they push the medical hoyer lift we use so that its legs are under the bed and the coat-hanger-like part hangs over me. They hook the sling to the lift, then pump me up into the air.<\/p>\n Bathroom<\/em>: I always go straight from my bed to the bathroom. They push the whole lift, with me still swinging in the sling mid-air, to the toilet. Lower me onto it, and you can probably guess the rest. Then back up into the air I go.<\/p>\n Showering<\/em>: Assuming I take a shower that morning (sometimes I do it at night, and other times I say screw it all together), they\u2019ll then push the lift over to my custom shower chair. They\u2019ll lower me into it, remove the sling, and buckle me in. This is another perk: I never shower myself. I don\u2019t have the strength or the range of motion to do so, so it\u2019s like being pampered at the spa every time. They wash and condition my hair, wash my body, and dry me off. Showers for me are mostly really relaxing. Sometimes, though, if I\u2019m feeling particularly weak, they\u2019re difficult because it takes slightly more strength for me to hold myself upright in the shower chair than in my wheelchair.<\/p>\n Now, clean and dry, they put the sling back on me, pump me back up, and we go to the wheelchair. (Note: any time they lower me it takes some maneuvering. It\u2019s not a simple push of a button. They have to angle me and find the right speed and usually push against my knees so I don\u2019t land on the edge of the seat. It depends, though. Lowering me into in the wheelchair is easier than the shower chair, for instance.)<\/p>\n Dressing:<\/em> I wear only dresses. That\u2019s it, that\u2019s all I own. While I like dresses, it\u2019s not exactly a fashion statement; dresses are logistically a whole lot easier to get on and off me than pants or even skirts. This is a particularly idiosyncratic thing as none of the other girls in chairs I know do this, but it\u2019s what works for me. So, each morning, I tell my carer which dress I\u2019d like to wear, and they put it on me.<\/p>\n Getting comfortable<\/em>: After I\u2019m dressed comes perhaps the most important step: positioning. I always sit with my legs crossed \u201cIndian-style\u201d (I wish I knew of a better name for it). It\u2019s the most comfortable position for me, but I usually need my carer to adjust me to find the perfect spot: move my legs, lift my knees, push me back, etc. I tell them precisely what I need until I\u2019m comfortable. This might mean moving one leg a half an inch, or lifting one knee five times. Even the smallest movements can improve or worsen my positioning. And if I don\u2019t get comfortable, it can annoy and\/or hurt me all day, or at least until I go to the bathroom again.<\/p>\n Personal hygiene<\/em>: I can do most of the rest myself, to an extent. For instance, I brush my teeth on my own, but my carer puts the toothpaste on the toothbrush and turns on the water. I can brush my own hair, but I can\u2019t pull it into a ponytail if I want it up. I can drape a shawl over me (most times, though it can take a few minutes), but I can\u2019t put on a jacket.<\/p>\n I know that sounds like a LOT, but my carers and I have been doing this for so long that we\u2019ve got it down to a science. All of the above from start to finish usually takes only 30-40 minutes. (Longer if I choose to put on make-up, but that\u2019s due entirely to my lack of make-up skillz and not to my disability.)<\/p>\n Most of the rest of the day, I don\u2019t need much help. In high school, the most help I needed would be asking a classmate to retrieve or put away a textbook from the backpack that hung off my chair. I almost never<\/em> went to the bathroom during school hours, because it was an annoyance and meant I had to miss some of a class period.<\/p>\n In college, I lived on-campus, and campus was small enough that I didn\u2019t have to drive to class. Assuming I didn\u2019t need to go off-campus, the most help I\u2019d need would be running home to go to the bathroom, and help with the occasional door from a passerby.<\/p>\n Now, if I had to go off-campus, things could get tricky. I can\u2019t drive, because while I\u2019d be capable of driving with some training, the modifications I\u2019d need are HELLA expensive. So if I go anywhere, someone else has to drive me in my van. In high school, that meant my parents. In college, my friends or carer. It\u2019s usually not an issue, but it is a consideration.<\/p>\n The biggest difference for me with leaving the house, though, is that I constantly have to be aware of how much I\u2019m drinking. Because I use a hoyer lift to transfer on and off the toilet, I can\u2019t go to the bathroom anywhere outside my own home. Mostly that means two things:<\/p>\n That means I can pretty much never go on day-trips or to events that I know will last a long time, unless I\u2019ve already planned a way to go back home in the middle.<\/p>\n Those are obviously not all the differences in my day-to-day life, but barring sadly common access issues, they\u2019re the ones that impact me most and are things abled people may not have considered before. I sincerely hope this is helpful, and if you\u2019re writing a wheelchair-using character and have any more questions, let me know!<\/p>\n","protected":false},"excerpt":{"rendered":" I\u2019ve talked a lot about the ways my disability has affected my body image, my sexuality, my confidence, and my social interactions, and all of those things are important to consider when writing a disabled character. Today, however, I want to focus on the ways my disability affects the logistics of my life.<\/p>\n","protected":false},"author":19,"featured_media":1458,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_generate-full-width-content":"","kt_blocks_editor_width":""},"categories":[57],"tags":[74],"genre":[],"age_category":[],"disability":[60],"_links":{"self":[{"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/posts\/490"}],"collection":[{"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/users\/19"}],"replies":[{"embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/comments?post=490"}],"version-history":[{"count":0,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/posts\/490\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/media\/1458"}],"wp:attachment":[{"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/media?parent=490"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/categories?post=490"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/tags?post=490"},{"taxonomy":"genre","embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/genre?post=490"},{"taxonomy":"age_category","embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/age_category?post=490"},{"taxonomy":"disability","embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/disability?post=490"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}\n