Day 328: So Your Friend Has Just Become a Wheelchair User, Now What?

handicap symbolSomeone I know via a Facebook group has a friend who’s in the hospital recovering from a car wreck that has turned him into a paraplegic. This group has absolutely nothing to do with disability but she mentioned it anyway for no other reason than it’s a group full of amazingly supportive women. Even though my disability isn’t a spinal cord injury I have been a wheelchair user most of my life so I gave her my advice on how to support him based on my own 30 years of disability and the lengthy conversations I have been fortunate enough to have him with people who do have spinal cord injuries. It occurred to me this morning that some of the things I’m aware of are not common knowledge for most people so I decided to expand my one or two paragraph explanation into a full blog post because maybe there are other people who could use the information as well.


  • The world as they know it is over. I am not trying to be cynical or pessimistic, from the moment they got into that accident nothing will ever be the same again. They have to relearn how to get dressed, how to put on shoes, socks, pants. Everything you thought you had down pat before you started kindergarten is brand-new all over again. At some point they will probably want to hit things, throw things, etc. as long as they are not doing major damage to themselves or you let them.
  • They really aren’t exactly the same person you knew before the accident.Implying that you see no difference whatsoever  may upset some people because everything in their life has taken such a drastic change it may feel as if you are denying the obvious and even if you are meaning to be supportive it can feel patronizing.  Try something like”I know your heart is still the same and the rest is just an oppourtunity for creative  solutions.”
  • People they thought were their good friends will suddenly disappear. They will disappear because the new reality is scary and maintaing a friendship with someone in a chair can feel more labor intensivr. I’m not going to you this isn’t true. Everything requires way more thought and planning when you use a chair. Is that place you used to hang out at all the time handicap accessible?If you didn’t know the answe before you’ll discover very quickly that the answer is really important now Being a good friend definitly means paying attentio to things like accessability.
  • If you say you’re coming over do it. Remember what I said about people disappering? This is how it starts…friend says they will come hang with newly disabled friend soon except soon never comes. When friend is asked why  they haven’t been around at all in six months excuses often abound working over time no gas etc. I’m not saying these things are never actual reasons but if you have to miss seeing them call and explain and preferably have a rain check date to reschedule. If they  don’t do thay then chances are good you are being avoided because the friend is uncomfortable around you. Do not be that person. You may think it won’t bother them that badly but  I can tell you from my personal experiance, do it often enough  and  no matter what your reason/excuse they will start thinking its better not to ask you to hang out because you are just going to find an excuse to ditch them.
  • Be prepared to become an advocate. I  know no onr asked if you wanted the job and disabled folk can and do advocate for themselves but being in a close relationship  of any kind with a disabled person means you will probably find yourself  being an advocate at some point. For instance before Oz, my boyfriend met me broken sidewalks, sidewalks with no ramps, or no sidewalks at all, were barely  a blip on his radar. The presence or absence or state of disrepair  didn’t affect him. Four years with me has made it a pet peeve. Same thing can be said for service animal access. Disability can make us feel alone in a world which only begrudginly accomodates us. We aren’t asking people to fight our battles for us but rather to stand with us.

Day 326:Outlander, A Die Hard Fans Defense of Characters Besides Claire and Jamie

I found the Outlander books in my late teens or early twenties amd fell in love. Seriously, I have at least three different sets of the books and that doesn’t count my Kindle copies. The only other book series I’ve ever done that with  is Harry Potter.I love Claire and Jamie. I love everyone else in their world too. Colum and Dougal, Frank and  “Black Jack ” Randall and everyone else. Yesterday I saw this post .


The writer reffrank randallers to Frank Randall as a twit and I found that this bothers me immensely. Frank is not Jamie but he does love Claire very much, if you need proof look no further than the fact that he raised a child that he knew was not his own. He and Claire’s relationship may be strained but he throws himself into loving the little girl with his whole self. His love for Claire is definitely not the forest fire blaze that Jamie sometimes  is but that is because Frank and Jamie are two very different people. You don’t need a bonfire  to heat a house a fire contained within a fireplace is still fire.


In fact it is these two vastly dissimilar relationships that put the Outlander series into a weight class entirely its own. I’ve never seen another series in which the female protagonist has two relationships, both of which last decades, in two different centuries.  I feel terrible for Frank because he has the misfortune of having a face that is an almost exact copy of “Black Jack” Randall, a truly horrifying person who finds immense pleasure in torture and rape of any person who he wishes to exert power over. Frank’s only fault as far as I can see and bearing in mind that in spite of having the entire series several times over I am still less than halfway through, is being a direct descendent of Black Jack which really isn’t his fault, nobody gets to choose their blood relatives after all.


I admit that I started reading for Jamie and Claire and Frank and romance and sex. Then  met Himself and was totally and thoroughly invested in the series and it wasn’t even halfway through the first book. Colum ban Campbell MacKenzie is chief of the MacKenzie clan and also has Toulouse-Lautrec syndrome a degenerative disease that is similar to osteogenesis imperfecta which also causes sterility, a fact important to the plot of the first book. Anybody who knows me for a considerable length of time can tell you that one of my biggest soap boxes is the invisibility of the disabled body in media. If a disabled person is shown in is often in the role of saint, martyr, or else curiosity.Colum Mackenzie is definitely not any of these. Warped limbs or not no one would ever mistake him for a shrinking violet  and crossing him isn’t wise.

He refuses to appear ashamed of his disability even though he holds the very common belief that his disability  is punishment from the Devil. When a tailor takes it upon himself to make him a coat that would hide his twisted legs Colum holds the man at knife point  and demands a standard mens frock coat which falls just above the knee be ready the next day , I  cheered aloud.

Outlander 2014

I love to hate Black Jack. He is so complicated and nuanced. He is evil, absolutely no argument there,but there are no physical tells no warts, disfigurements etc. in fact he is very handsome, his speech polished, his manners charming as the situation requires. The only physical difference between him and Claire’s Frank is that his hair is long enough to tie back where Frank’s is short. If Claire had not met Black Jack whilr in Jamie’s era I don’t believe  her and Frank’s relatiomship would have suffered as deeply when she came back. Think about it by the time she returns she and Jamie has both been assulted mutiple times by a sadist who wears the exact face of the man she has just returned to, that would be enough to give anyone nightmares. ‘

Outlander is Claire and Jamie’s story all day long but dismissing supporting characters is a huge mistake.It narrows the focus of a complex story that is about so much more than just the two leads and reduces  it to the level of a drugstore paperback romance.

outlander cast

Author’s Note: None of thee images are mine.



Day 325: People with Cognitive Impairments Make Me Uncomfortable, Or Disabled People Can Br Jerks About Disability Too

pillar8-thought-and-art-vitruvian-man-leonardo-da-vinciNondisabled people often think that if there are two or more disabled people within a 50 mile radius of each other we all know each other by default and must be best friends. I understand the basis for the assumption, people who live in the same area might receive some form of therapy or other community services to help with their disability at the same place. This is a logical assumption but it is unfair and limiting to assume that just because disabled people are thrown together by circumstance to assume that everyone knows everyone else is more than just a passing acquaintance. More often than not strangers will assume that my boyfriend is actually my brother unless they have just seen us kiss each other. People have expressed surprise that I’m not dating someone “like me,” by which they mean someone who is also disabled. I have dated both disabled nondisabled people and I find the assumption that I would or should”stick to my own kind” insulting on several levels.


That being said the fact that I am part of the disabled community does not absolve me from my own narrow minded behavior. While the medical community will never call me physically healthy because of my disability and I admit to struggling with depression daily one of the boons granted to me was an extremely sharp mind. I have a 119 IQ. 120 is considered the start of the genius bracket. I have a ridiculously good memory for people’s names especially if I meet their pet at the same time. I have been told that I am good at mimicking accents and I know that picking up languages and writing are not difficult for me at all. In short I am a very good communicator and often times find myself uncomfortable in my dealings with those whose chronological age does not quite match up with the level at which their brain processes information. I found it especially difficult to navigate at summer camp where many of the people had cognitive differences on top of their physical ones. I know now that it painted me as cold, uncaring, and stuck up to some of the other campers. To those whose feelings I did not realize I was hurting I am truly sorry, it was never, ever intentional. It has not been until just this year that I started to feel less awkward about bridging the gap between myself and cognitively disabled people. Sometimes it’s easier than others but I do it anyway because just because someone processes things differently than I do doesn’t make them any less worthy of my empathy, appreciation, or understanding.

Day 324: In Which a White Girl Asks Ain’t I a Woman?

In 1851 Sojourner  Truth, a former slave spoke to group of feminists in Akron, Ohio and asked , ain’t I a woman? It is 2016 and I ask myself that every day. I struggle to find space within the feminist movement because  the truths that I live as a disabled   wonan are very rarely if ever recognized as wrong at all  in mainstream feminism.  For instance I am thirty and I have dealt with street harassment a grand total of once in my life. A male acquaintance who was also in a wheelchair groped my chest when I was in college. I  did report it reluctantly and the guy never bothered me again. Never once has an able-bodied man so much as cat called me. Instead I am ignored so totally that on the rare occasions my service dog  hasn’t been with to make those around me pay attention I have had people trip over my 300 pound wheelchair and nearly end up in my lap because they “didn’t see me.” Really? How do you miss  seeing something that like it wants to be a Transformer when it grows up ? It’s PURPLE for effs sake! When I am noticed I get asked how having sex with me “works” or  can I get pregnant? I have been asked these thing in public, by strangers as if I’m some sort of carnival exhibit  or scientific test subject. Maybe I  should start charging for every answer, even test subjects and circus performers get paid.

I’m not saying that the street harassment most women face is anything less than demeaning, awful and wrong it is and it should stop. All I am asking is that if a disabled woman tells you  she’s never had that happen instead of saying just saying :”you’re so lucky,” ask about her struggles, ask how they are different from yours, make space for us at the table,lets be each others advocates regardless of race, birth sex, income or ability. If you ever wondered “ain’t I  a womam?” I say yes you and your story is every bit as important as mine.

This is Kerry Washington performing Ain’t I  a Woman . She ROCKS IT.

Day 322: Words Have Power, Using Voices Conscientiously

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.

Day 321: Definitions, Personal history, and a resolution for the New Year

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.