adjective: reluctant unwilling and hesitant; disinclined.
Reluctant 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

Day 320: Kylie Jenner, #TheAbleistScript and Us vs Them

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.

Day 319: Disability, Sex and Feminism, a post brought to you by Google image search

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.

Day 318: In Which I Realize Just How Lucky I Am or The School That Harry Built

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.


Day 317:Television and Disability or Why I Rarely Get Mad When an Able-Bodied Person Portrays a Disabled Character


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.



Day 316: Yesterday There Was a Mass Shooting And It Happened To Me

Flag of California.svg

Before anybody worries I do not live anywhere close to San Bernardino California.I am physically unharmed but definitely emotionally rattled. For those of you just catching up with the news there was a mass shooting in San Bernardino California yesterday involving three people with guns opening fire on a center for the developmentally disabled. 12 people were dead and at least 20 are injured. That was the last count I heard anyway. I’m also not sure how many of the deceased and injured  were autistic people. I don’t think the numbers them selves really matter. What matters is that it happened at all. This is not a place where the deaths were obviously politically driven. This was not a Planned Parenthood clinic or the World Trade Center or even Paris.


Mass shootings are becoming far too common place. We’re starting to discuss them in terms similar to those we use for natural disasters. There is nothing natural about this. The Center for Disease Control recently asked Congress to fund research into possible biological reasons for a s my mother said yesterday “the upswing in crazy,” Congress was having none of it.


I am not a conspiracy theorist but I will tell you that if I were Congress I would want to turn over every rock possible looking for answers even if some of the rocks turn out to be nothing. Why is my government so unwilling to explore this? Are they afraid of what they will find? Do they know what they will find and want to keep it quiet? I don’t know. What I do know is that even if it wasn’t motivated by politics yesterday was terrorism. Colorado Springs was terrorism. All victims everywhere and do understand why the place they were at was targeted. Everybody needs to realize that we got ourselves into this mess and we need to get ourselves out. Shelve the name-calling, infighting, finger-pointing. Pull your head out of the sand and start doing something of substance. I don’t expect answers tomorrow, the question is too complex. I will wait. Right here. I will wait with my hand out and I will not let you forget, because everyone deserves answers. Because yesterday I really realized how very very easily that could have been me.

Day 315 : Unexpected Connections

In 2008 a friend of my dad introduced me to the virtual community of Second Life. When I first started I called it  a game but the longer I’m in it the more I realize that using game is a misnomer. Game implies set goals and a finite end. Second Life has neither of those things your avatar can be and do almost anything you can think of to do in your day-to-day life plus some things you can’t including flying like Superman. Dad’s friend had an avatar and thought to tell me about it after he heard me complaining about the fact that my disability precludes me from enjoying things like ballroom dancing, gymnastics, or ballet at anything but a spectator. I don’t remember if I ever got to say thank you before he passed away, I hope so.


A lot of people in my day-to-day life do not understand the appeal of Second Life for me. In Second Life I get to be a person.Not a person in a wheelchair. Not a disabled person. Just a person. The most remarkable thing about me in  Second Life is probably that I have elf ears that is it. No whispers, no staring, no finger-pointing.


In my day-to-day life most people see the chair and assume that I have cognitive difficulties as well as physical ones. When I was a child I used to get mad about it but as an adult I understand that is not even close to an illogical assumption. 80% of people with Cerebral Palsy also have cognitive issues. I’m sure the instance is even higher in cases of spina bifida since treatment of that involves a shunt in the brain to relieve fluid build up and pressure a lot of the time. In other words I dodged a bullet and I know it. I am grateful for that every day. However it is nice to have a space where people’s first impression of you isn’t so so highly colored by the necessity for adaptive technology of one form or another.


This is not to say that no one in Second Life knows about my disability. Several people do but I’m very picky. The people who know are also the people I would consider making the time and extra effort to see in person. These people have seen me through a lot. College classes that I thought would drive me nuts. Romances that sometimes didn’t work out the way I had hoped. My mother’s breast cancer, my father’s heart attack. Me breaking both legs. A really bad apartment manager. An equally awful roommate situation.


I may have met their pixilated representations first but the wonderful thing about Second Life is that if you let it it can let you see past the incidentals of a person’s every day life (my chair, living in a different state, country, continent, age difference) until all you see and all you care about is their humanity. Nothing else is really of consequence.



Day 314: So if A C- section isn’t “real” birth me and my sister are here by magic?

That is so cool.

I came into the world two months and 10 days before anyone expected me to. My sister was overdue by an entire month before she decided it was time to make an appearance. We were both delivered by cesarean section which is actually called that because that was the manner of Julius Caesar’s arrival onto the world stage. Apparently Facebookis trying to piss me off this week.  This showed up on my news feed posted by a friend. My friends response? “Oh hell no!? I find this sentiment upsetting for many reasons not the least of which is the fact that my mother is probably the most kick ass woman I know and no one will ever be superior to her for any reason.Secondly the idea that anyone is physically superior and therefore more worthy to be a mother (which I felt was the implied statement of this poster) is total crap. Many of the children delivered by C-section have a laundry list of special needs. Parenting a special needs kid is probably the hardest thing ever in my opinion.I do not understand why with all the outside discrimination women face in modern culture we have to engage in a session of “I’m better than you are” and name-calling. Anybody who has had a C-section will tell you that it’s not in any way a cakewalk or a lucky break. It is at least as painful nonsurgical birth just in a different fashion. I also feel like this poster is implying that you should not have children if you cannot deliver them in the manner nature originally built into you. This suggests that disabled women like me should completely shelve the idea of having children at all because in my case and in the case of many others the safest route for mother and child is a cesarean. I refuse to let anyone else make that choice for me or to denigrate me or anyone else when this is the best way to make sure my children arrive safely in this world.