My mother has been hauling 40 gallons of water per day for 7 sheep, 2 horses and 12 chickens from the creek across the street for a ywar and half because my parents can’t afford to fix a busted pipe on the property. Drinking water for people is purchased or gotten from my grandma’s house. My parents ate the type to give a homeless person food and crash space . They were parents yo most of my friends parents were often less than present. Both my folks are vets and are used to makibg due. A few yeaars ago my mom had surgery fo remove breast cancer and my dad had a heart attack that same week. It’s been an uphill climb for them since. Today mom started a gofundme page to raise money for repairs. As of right now we have raised $1,030 and the goal is $2,000. Most people who will see this don’t know my family and times are rough for lots of people but even five bucks would help. I can offer proofreading or creative writing services to anybody who donates and leaves a comment letting me know. Thank you from the bottom of my heart.https://www.gofundme.com/vknbmen8
The last few weeks of 2015 were not quite what I expected. I have never been one to believe in a vast overarching destiny. I believe in the small, quiet nudges that you can almost miss if you’re not listening that whisper, “go here,” “do this,” “don’t do that,” “this is important.” I got several of those in the past few weeks. Mom had been watching clips of an Australian comedian named Adam Hills and something told me to look up his longer pieces. Turns out the guy has an artificial foot because he was born without one. That definitely piqued my curiosity and so I sat and watched everything of his I can find. He doesn’t tell jokes so much as humorous stories and he was telling how he metthe Dalai Lama and made him laugh by refusing to tell him a joke. The Dalai Lama then took the microphone and said that people who have microphones should use them to say things. I was totally stunned. So many people who have been blessed with the opportunity to have a microphone whether it be a literal one or not say absolutely nothing, reality TV is all the proof I need of that one. A blog is also a microphone, amplifying our voices to be heard almost anywhere. Makes those words count, talk about the hard uncomfortable stuff that you’d rather shove in a drawer or walk past and pretend you didn’t see.
The second thing that happened to me at the end of last year is that I started talking to a friend who I had believed I would never hear from again. By all rights I should have slammed the metaphorical door in his face but there was that whisper again,don’t do that, this is important. So we’re talking again this was one important caveat that should help us avoid situations like the one that caused us to quit talking to each other. We always speak truth, even if it is hard, painful, or unpleasant for the other person to hear . Speak Up. Speak Out. Speak Truth. Those three things are the only way we can ever hope to change anything for the better.
adjective: reluctant unwilling and hesitant; disinclined.
ant is a word that describes me well. I think the only time I have ever really jumped the gun may have been my premature birth and look what that got me. As a kid I don’t think I was ever first in my neighborhood to do anything except maybe read. I talked late. I couldn’t sit up unsupported until at least eight years without a whole lot oo conscious effort. After third grade when we moved back to Tennessee from North Carolina I became reluctant to go to school because I felt out of place there in a way I never had at Fort Bragg. I had a wonderful teacher who made moving bearable and it wasn’t until fifth-grade that things got awful but that’s another post.I’m a reluctant public speaker although that one you probably wouldn’t guess if you saw me at it. As a kid and teenager I have t stood in front of many a United Way funding committee and persuaded them to continue funding my theraputic riding program another year until the next year when I did it all over again. I have never written a speech or even used notes unless it was for a graded assignment that required them. I am very good at public speaking and even better at writing.
In spite of all that I still term myself a reluctant speaker and writer. My reluctance does not stem from a lack of talent. I think it comes from feeling like I am boxed in by circumstances I had no choice over. Many things I had a drive to be growing up were just impossible. For instance I once told a firefighter giving a demonstration to my second grade class that I wanted to grow up and save people. I think he cried while leaving. With the mercurial nature of elementary school career choices at some point I decided that I wanted to be a soldier. Mom did cry when she told me that that wasn’t a possibility.
When I began to show skill at crafting picture book stories for class projects (my first one was a murder mystery at the circus in which the murder weapon was a poison dart from a blow gun, we were supposed to draw the pictures ourselves but I told my teacher that if I drew the pictures they would end up looking like awful stick figures and I wasn’t writing a story just to have it ruined with stick figures, she agreed that my mom could draw for me as long as I came up with the story. As a result I had the best illustrated book in the class) mom said I should write. When I started doing the public speaking everybody who heard encouraged me just as much. Sometimes things are too easy though.Writing and public speaking fall into that category for me.
I am not sure I would call either writing or public speaking a passion, I don’t think I found mine yet. I write regularly now to keep myself in the habit and to make the inside of my head a more ordered place to live. I have a manuscript that I’m writing that I enjoy but I don’t eat, sleep, and breathe it which totally flabbergasts people I know.
They can’t see why I am so dismissive of my writing. My talent will always be there it’s not going anywhere it’s a part of me and short of something like Alzheimer’s it will be there for a good long time. I am not so much dismissive of my writing as annoyed by the fact that other people view my writing well as though it should make up for all the things I can’t do. The same goes with public speaking even though I have had less opportunity to do that in recent years. I can’t drive.You write so well. I an embarrassed when I have to sign for anything because I wasn’t able to master cursive and my printing is worse than a preschoolers most of the time. It doesn’t matter what your handwriting looks like your words are well-crafted.I wish I could play the piano.I wish I had half your talent writing stories.
I appreciate all the encouragement but just because I write or speak well does not mean I can easily put aside all the things I’d like to be able to do in addition to writing well and speaking eloquently that I can’t do at all because of my disability. The truth is that I’m not always 100% comfortable with the fact that I’m disabled. I want to scream and yell at the unfairness of my life more times than I wish to admit to most people. Over this past year I have been consciously trying to make peace with myself, to love myself more. That is my New Year’s resolution, to continue on this path of self love, to not focuson the standard version of perfect and try to find my own which incorporates all my flaws and idiosyncrasies I’ll let you know how it goes
Have you seen Kylie Jenner’s lightly S&M flavored wheelchair photo shoot that appears in Interview magazine? I just saw it yesterday and boy has it sparked a lot of reaction. I first saw it in connection with #TheAbleistScript. In case you haven’t seen it here is the cover shot.
She has received criticism left, right, and center from the disabled community. I understand why. As a person who has used a power wheelchair since her teens I’ve had to deal with able-bodied people treating it like a toy, even my dad. Every wheelchair I’ve got with the exception of the one I have now he has insisted on driving first despite my protests. There are benefits to it, he can drive it without crashing into walls if necessary but it’s still annoying. If I was grounded that usually meant I was grounded from my wheelchair outside of school. My dad let my sister play with my chair while I was grounded. I understand peoples anger I really do, my knee-jerk reaction was similar to a Mentos soda rocket when I saw it at first. Two things happened then, one my mom reminded me that especially right now she is living in a fishbowl and that all art should be taken in context. The second thing that happened is I saw her state in an interview that she was using a wheelchair to signify how limited she felt. Then it really hit me was her life must be like lately. She is 18, your brain does not stop growing until 25, your super emotional, still don’t make the best decisions ever. She is a model, a profession which means you live your life in a fishbowl whether you want to or not, people see and interpret your tiniest action. Let’s not forget that she has a parent with five gold medals in track and who very recently openly transitions from male to female.
That is a very big mouthful to have to swallow at 18 years old. I don’t blame her for feeling trapped and confined. It’s also very likely that she does not know anyone who uses a wheelchair personally and so has never seen a person view a wheelchair as part of their personal identity. My first reaction was “how dare she portray disabled as plastic, as mannequin, as Wheelchair Fetish Barbie.” The second, third, fourth times I looked were different. Maybe she feels plastic and mannequin like. Maybe she feels trapped and confined by the pressure and responsibility of the roles she finds herself in, most of which she did not ask for and is probably very confused by.Maybe the wheelchair was the most confining thing she could think of to represent all that.
Personally I would have chosen to re-create Houdini’s famous water tank escape or his straight jacket escape if I were her. In some ways I like #TheAbleistSctipt it gives a name to a mentality I have seen my whole life. People who don’t think to shovel snow and ice off the sidewalks because as long as the road are clear for then to drive to work what does it matter? The sidewalk that is perpetually cracked and never fixed because you can just go around it can’t you? The sidewalk that doesn’t have a ramp on either end because most people can step up over the curb and if you can’t oh well. It does exist and it needs a name but I believe we must think carefully before directing it at specific people. Yesterday I saw an awesome video where Lady Gaga and the panel of Yale University students talked about the importance of listening and of validating each other’s emotions and struggles. The disabled narrative needs telling but it need not be told from an us versus them points of view. Along with #TheAbleistScript why not#thisismycommunity to facilitate a dialogue between disabled and able-bodied? Use one to point the problems and the other to work towards solutions, because this us versus them thing is not getting anything done.
Sometimes to amuse myself I type a word or phrase into Google image search just to see what kind of pictures show up. This morning I typed n the phrase “sex and disability”. There were a ton of pictures with the Scott Hamilton quote “the only disability is a bad attitude” and also many decrying disability benefits fraud. I’m sure if I had scrolled farther down the list I would have eventually found things related to sex in general but I have spent the last several hours going through the photos and memes that showed up and not one addresses both sex and disability.
Sex is talked about almost every day. It is seen in movies and television programs and hinted at or implied in thousands of commercials and ad campaigns. Modern society has sex on the brain. However if you attempt to suggest that a disabled body contains a sexual entity the collective conversation often comes to a very abrupt, very awkward halt. of coarse sometimes the opposite is true. I have spent a lot of time in chat rooms and most of the the time I do not use my speech dictation so I am a hunt and peck typist who prefers to talk to people in private messages because the conversations in the larger room often scroll too fast for me to keep up well. Most of the people I have run into are obviously not hunt and peck typist so they often notice the difference between my speed and theirs and asked why I type slow.
I could lie but I usually don’t, I tell them that I am in a wheelchair and that the disability also affects my hands. Awkward silence ensues and if the guy (I usually talk to guys in chat rooms for no other reason than I find it easier to talk to them than other women)is not totally scared off they often ask two questions: Can you feel your legs still, and how does sex work for you/can you have sex? There are a total of five guys I’ve had that conversation with whom it did not feel awkward and who I felt were asking out of genuine interest in possibly doing something with the information rather than just satisfying a voyeuristic curiosity which they feel entitled to indulge.
I wish that meant that I had only had that conversation with five guys. It doesn’t. I answered many of the other guys because I felt pressured to for some reason. I was having a bad day and wanted to talk to anyone about anything just to connect with another human being. I had been having fun before the discussion got to this point and I didn’t want them to stop talking to me. The reasons I excused their bad behavior were many and varied.It boils down to a need to be seen. As girl, as young woman To be desired,because still in today’s modern world little girls are growing up with the idea that their value is measured by what other people think of their bodies. The other day I realized that largely because of my disability I do not suffer the same kind of micro-aggression and street harassment that many other women do. I don’t get cat called or whistled at, not once has a stranger shouted “hey baby” when I was part of a group of friends and meant me. Here is the really screwed up thing about what our culture teaches girls and young women to think about themselves, I realize these things and while I did feel grateful I mostly felt sad. Having a disability by and large takes you out of the collective definition of sexual being, pushes you off to the side into the margins, tells you in word and action that you are less than, beneath notice.
I have been fortunate to find men willing to say, “screw the collected narratives, it is wrong.” Thank you I love you and I know you truly care. On the days when it doesn’t seem to help it not because of anything you did or are doing, it’s just hard to hear individual voices through a mob intent on shouting them down. Have patience with me I will try to listen better.
*I am writing this from the perspective of a woman with a disability. It is quite possible that disabled men had similar struggles being seen as sexual beings and seeing themselves as such. I’m not really sure and I haven’t had the time to have an in-depth conversation with a disabled guy.
For all the problems with America I am lucky, I am lucky that I live in a country where community based services were there to help my parents when I was diagnosed with Cerebral Palsy at 1 year old. Children and young people with disabilities in less developed countries aren’t so lucky. Today I learned a disturbing statistic 80% of children in orphanages aren’t orphans. They are there because their parents or family feel ill equipped to take care of them. Not surprisingly alot of those children are disabled.
What did J.K Rowling do after creating Harry Potter and his Wizarding World and putting her name into the world’s pop culture history? She created a non profit Lumos a organization committed to finding solutions to the problems children and famlies face. Solutions that don’t involve orphanages. From the Lumos website
Across the globe 8 million children are living in institutions that deny them individual love and care. More than 80% are not orphans. They are separated from their families because they are poor, disabled or from an ethnic minority. As a result, many suffer lifelong physical and emotional harm.
Last year Lumos built the building that will house a school for disabled childrebn Maldova.. This year they are raising money for special desks, eating utensils, walkers, wheelchairs, handrails in the bathroom even a hydrotherapy pool.So if you know me, for my Christmas gift help the school that Harry and the Weasleys and the entire Wizarding World built because education and family are the real magic and every child deserves to have both. Below is a link to the indiegogo campaighn where you can donate. They have met their goal but trust me that stuff isn’t cheap amd they will use every bit of overflow.
At a recent discussion panel at Comic Con several fairly well-known people with disabilities were asked how they felt about the medias tendency to cast able-bodied peoplein the role of disabled characters, full disclosure I did not actually hear the question the video clip I saw started at the beginning of the responses. The fact that the actor playing Artie Abrams in Glee but brought up of course and the producer got flayed alive because his reasoning for the casting choice was to be able to pull off a specific dream sequence involving the song Safety Dance. They completely forgot to mention that there were two reoccurring characters with Downs Syndrome both unless I’m terribly mistaken played by actresses with the conditi. I know for sure that it was true of at least one of the actresses which is a lot better than some shows have ever done
When Glee first started members of the cast went a television awards ceremony (I forget which one) and one of the commentators upon seeing Kevin McHale (Artie Abrams) walking by greeted him with “it’s a miracle! You can walk!” His reply? “That’s not funny. You have no idea what people who can’t walk live with.” That statement encapsulates why I don’t have a problem with able-bodied people portraying disability as long as an effort is made to do so accurately and with sensitivity. Most television shows hope you stick around for at least four years. Assuming that the character is in the main credits or at least frequently reoccurring that’s four years of putting yourself into someone else’s every day life every day of yours. Your perception of life is going to shift even if you don’t think it will at first. I don’t think that is a something we should actively avoid.