Day 284 : My Wheelchair Should Not Define Me, Either As Asexual or As A Goldfish

English: An image of a Common goldfish

English: An image of a Common goldfish (Photo credit: Wikipedia)


My whole childhood and adolescence I’m pretty sure my grandma believed I’d end up a spinster she thought this in spite of the fact that I had a boyfriend in high school. Why? Because in the era in which she she grew up the only disabled people who were treated with any kind of personhood were the injured soldiers returning from World War II and other military veterans. Those of us born with severe medical differences wee expected to content ourselves with never living as a person outside of our mediated family   if we were lucky and being stuffed into an institution if you weren’t so lucky, or the worst luck of all, to be killed outright.In her day we weren’t expected to have any education beyond what a person’s may or may not have taught them at home. If a person is not expected or given the tools with which to make a life for themselves how can they include an outside person?I try not to be to upset with my grandma because at lwast she didn’t advocate that my parents turn me over to foster care when I  was diagnosed with Cerebral Palsy.

As previously mentioned I had a boyfriend in high school. I’m sure this would have comment worthy by itself to my peers but the fact that he was also in a wheelchair made extra intriguing I’m sure. When we slow danced with me sitting in his lap I had a sympathetic twinge for the goldfish  living in a fishbowl. The Monday after prom I  heard a rumor  going around that I had lost my virginity over the weekend. It was just a slow dance folks. Yes I suppose we could have done things differently, I know a few people who can pull off couples dancing in wheelchairs with passable rhythm and style but neither one of us could. Plus as my boyfriend’s mother pointed out when she put me in his lap,”every other girl in this room is allowed to be close enough to her guy to put her head on his shoulder, why should you be any different? Looking back on it I’m almost certain she told a few of the chaperones that, because despite more than a few dubious glances our direction not a negative word was said.

I have also had the experience of  talking with a stranger (sometimes a guy sometimes not) and after the almost obligatory “what’s wrong with you?”  (or some form of it) the very next thing they ask is “can you have sex and how does it work if you can?” What I should say  is “the only people who need that information are my doctor and the person or people I choose to sleep with’ and walk away. For the record it’s never happened that way not once. I usually sigh and answer yes I can and NO you can’t have any details.  None of the able bodied people I know have ever been asked such a thing  in a grocery store by a stranger. Where did people  get the idea that its ok to ask  a stranger about their sexual practices without even knowing their name as long as they are disabled? Some things I will never understand.




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Day 282: Rape: It Happens to the Disabled Too

A white ribbon to commemorate the National Day...

A white ribbon to commemorate the National Day of Remembrance and Action on Violence Against Women. Right-to-life Awareness. White Ribbon. فارسی: روبان سفید، نماد بین‌المللی آگاهی و توجه به مبارزه با خشونت علیه زنان است. (Photo credit: Wikipedia)

Rape culture is so prevalent in American society that most of us unknowingly endorse it regularly. The girl who gets raped while drinking too much is not to blame for her rape because she chose to ignore the limits of her alcohol tolerance, the rapist is at fault. A woman gets raped walking through a seedy neighborhood at night, gets raped along with having her purse and wallet stolen. She is not at fault, the thief/rapist is. A person gets an 11 year sentence (as much time as the judge could legally give him) for raping his then 14-year-old severely disabled daughter (she can neither walk nor speak). The reason he got off with such a light sentence? In the state he was tried in the accused can get a tougher sentence if the rape occurs during a burglary, if you tie up, otherwise restrain or incapacitate the victim. None of those things happened because none of those things needed to, the severity of the young woman’s disability made it all too easy and because he chose a victim whose own body incapacitates her so that he doesn’t have to he gets a lesser sentence? I shouldn’t have to explain to any legislature why that is wrong, I am at least gratified that the judge who heard the case gave him every day of the max sentence possible and stated that he would have given him more if he had the legal means to do so.


I am not as physically disabled and that young woman a fact I am very grateful of, I can hit, scratch, bite, screams “RAPIST” at the top of my lungs for anybody to hear. I can communicate with those around me so that my assault i can be dealt with as soon as possible. I a would not have to wait for my mother to go through my stepfather’s phones looking for evidence that he was cheating to find the video he made up my rape . I may not be able to do a lot of things but reading that story makes me extra grateful for the things I can do. I believe that rape of minor children and the disabled should come with an extra sentence, no matter what method of restraint the perpetrator did or did not use, no matter where the crime was committed and I believe that all rapist should serve mandatory prison time no matter their socioeconomic class. If you think my disability makes me biased you’re damn right. That could have been me.

Part of  Gene O’s Feminist Friday conversation

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Day 275:The Shading of Disabiliy on the Painting of My Life


Handicapped (Photo credit: Anas Qtiesh)

I am disabled. Over the years I have called myself many things cripple, gimp, and spaz as well as physically challenged, physically disabled and mobility impaired. I find it amusing how many people(specifically able-bodied people) cringe if they hear me use one of the less than politically correct terms. Quite frankly I don’t particularly care which term someone uses as much as I care what tone of voice that was said in. Believe it or not even the more whitewashed terms can come across as a dirty slur with the right inflection. A friend of mine recently wrote that a friend of hers had caused her to consider how her disability might actually indeed define her and that got me to thinking as well. Some forms of “person first speech” don’t bother me. Person with a disability and wheelchair (insert relevant aid here) user don’t bother me at all. It’s when people start using things like “happens to have” that I think it’s just getting silly. Trust me my disability is not something as arbitrary as a wardrobe choice or the pictures that hang in my apartment. It’s an integral part of my identity whether I like it or not. That being said it’s not the end all and be all of my existence. I am someone’s daughter and sister, someone significant other, a writer. I would be all those things even if I want in a wheelchair every day of my life. Does using a wheelchair make my life different than it otherwise might have been? Of course it does. When shopping I choose to spend my money in stores and restaurants that are easily accessible and accommodating of the fact that most of the time I have a service animal with me. If it is difficult for me to navigate through your store with my chair or you give me hassle about my dog chances are very good that will be the last time my cash will become part of your revenue stream.

Does it influence my writing? The short answer is yes and the long answer explains why. People look for others like them to use the frame of reference for what society expects of them and how they can be expected to be treated by others. I was about eight years old when I first noticed that there weren’t many people with disabilities on television, in books, movies or glossy paper magazine ads. So I began a search and I discovered something very sad. When they are is a disabled character in a story he or she is often blind or deaf. It seems as though people in media bring the  most attention to those portions of the disabled populace least likely to remind people of their disability. Yes a blind person can use a cane to navigate and a deaf or hard of hearing person may use hearing aids but for the most part their “otherness’ is a lot less in your face then Cerebral Palsy or a Spinal Cord Injury might be.When I pointed out this imbalance to my mother she said, “You’re right.So when you write your stories write the characters others don’t.”

     Does my disability have any bearing on my favorite color or my favorite food? Nope not even a little. My music taste would be the same. Does my disability define me?  Yes, but so do lots of other things. Humans are complex complicated who, for all the wonderful things that we can do only use one tenth of our brain capacity. Letting one word define me seems as silly as the fact that we actually use less than half of the space in our brain to exist.if I am a painting my disability is my nuanced shading



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Day 274: In Praise of Pen and Paper(From Someone Who Can’t Use Them)

Cassowarys Victorian Modern Cursive

Cassowarys Victorian Modern Cursive (Photo credit: Wikipedia)

My handwriting sucks. Let me rephrase: my printing sucks. What most people consider handwriting, that is to say cursive handwriting, is beyond my physical capabilities . I can list on one hand the number of people who can read my print and depending on the day and how tight my hands are that list may or may not  include my parents.In twenty eight years of living as a disabled person I’ve come a long way on the road to self acceptance but my lack of consistently legible penmanship is still a frustration.  My family (the women particularly) collect stories, our stories and the stories of others. We are believers in passing down history via oral tradition and the written word. Particularly when telling the stories of others I am a detail fiend. I try not to leave things out or over embellish. This is where having decent handwriting would help. Most people can can grab a pen or pencil and scratch an idea onto a napkin, a Post It note or even a matchbook if that’s what they can reach. Not me. For one thing there are days when I can’t even hold a pen or pencil, much less write with one. My handwriting is so hit or miss that there are days that if i  actually wrote wrote something down, left it and came back, there is a very good chance I won’t be able to read it even though it’s my writing.

     i have several electronic means  of writing , all of which I’m grateful foe, and most of which I use regularly. I can’t help feeling as though my disability has cheated me out of one of the most basic aspects of writing, I can’t enjoy the ink flowing from pen to paper. For me that process is agonizingly slow and often physically painful if I try to write more than just two or three shorter sentences at a time.
     I know that in the digital age lots of people feel that writing with pen and paper is obsolete. I wonder if you’d still feel that way if  a computer or other electronic device was the only means you had to communicate your written words?
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Day 266: What Might Have Been


Handicapped (Photo credits:

I’m pretty sure that any parent raising a child with a disability has grieved for the able bodied child that might have been. It’s only.natural, nobody wants to think that their child will have to live a life labeled “different, other*. What folks might not realize is that  disabled people grieve for themselves. When I was a little girl I wanted to be a soldier, a  doctor and a firefighter by turns.
I’ve  always been  disabled and even as a child I never thought even for a second that I would wake up and be able to walk.  I believed that I would some how be able to do those things in spite of the fact that I can’t walk much less run a six minute mile and the lack of dexterity in my hands meant that even if I made it through med school I would never made it through being an intern.
So yes I know I’m lucky. Yes it could be worse. Lots of people I know have it worse than me. That being said the only people who might get away with telling me I should be grateful for what I can do are my parents and my boyfriend and girlfriend and even they  are likely to get snarled at some days.If  you see me on a rough day know that I will  be okay and if it looks like I need help,offer it ,but the only time the word lucky should be mentioned is if we’re talking about the lottery.

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Day 261: Ramen Noodles and US Politics

ramen drawer

ramen drawer (Photo credit: pinprick)

I have a love hate relationship with ramen noodles. On the one hand I love noodles and pasta of all kinds. Let me tell you something in case you’ve experienced it, ramen is a staple food for those who demographics label the working poor. My parents have been part of that particular demographic section most of my life I have learned to survive on alternating meals of ramen, mac and cheesee or buttered and salted white rice. I had the poor college kid thing down long before I ever went to college.

The issue I have with ramen is that as a food it’s not very disability friendly. Seriously all three of my “step children” ( my boyfriend’s son , andmy girlfriend’s two girls, who are all under the age of six) have better fork skills than I do at this point. It really is sad In order to eat ramen more or less independently the package of noodles has to be thoroughly broken apart before being cooked in as little water as possible. I usually ovoid the just microwave lunch in a cup option because the longer noodles and significant amount of broth is enough to make me cringe even before I make the mess I know is coming. Today however I triumphed and manged to eat a cup without dropping half the contents on the table or my shirt. It’s a good day.

Speaking of the working poor I personally that anybody who wants to run for President should have to work a minimum wage job and live in a one bedroom house or apartment with only basic amenities (for my purposes basic includes tv and internet but no dishwasher and no washer/dryer hook ups so they would have to budget for money and time spent in a laundromat) let someone who aspires to the biggest responsibility live like that for three months and I might believe they have half a clue of how to help the country as a whole.

This post has been brought to by the Zero to Hero: 30 Days to a Better Blog Challenge at


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Day 252: Since When is a Child’s Murder Understandable?

Autism spectrum

Autism spectrum (Photo credit: Wikipedia)

I am a disabled woman who kids kids eventually. Even though my disability isn’t caused but a birth or genetic defect but rather by a simple case of bad timing (I was two months and ten days early) and a lack of oxygen to the brain the fact that I am disables makes any pregnancy of mine high risk which in turn increases the chance that my child(ren) could have a disability. This scares me a lot. To be honest the idea of a physical disability doesn’t scare me half as much as the thought of raising a Downs Syndrome or Autistic Spectrum child does If however the universe decides to send me such a child I will love him her or them just as much as an able bodied or neurotypical child. The fact that there are some parents who feel overwhelmed by their chuld’s disability that they would murder that child is sad but can not and should not be seen as justification for doing so

Yes parenting a special needs child is different and in lots of ways more difficult than parenting a typical able bodied child but I believe that when you make the decision to become a parent you accept the possibility that things might not go exactly as you hoped. Murder is never the answer and being born with a disability isn’t a crime If you’re feeling overwhelmed talk to somebody call CPS anything is better than harming a child or adult who had no control over the fact they were born disabled.

Day 244: If You Want to Put Me on a Pedastal Think Again Please This awesome photo isn't mine The original can be found at that webpage This awesome photo isn’t mine The original can be found at that webpage

I think that most parents of children and adults with disabilities have gone through a grieving cycle at least once sometime after the definitive answer that their child will never be seen by the world as “normal.” I know my mom has and she tells me all the time that she asked for a child who would need extra help in some way. I don’t think my father has ever really stopped grieving and even though that makes our relationship difficult at times I know that he doesn’t love me any less,he just wishes life were easier for me.

I do not take offense at my parents’ grief and I will never think less of someone for mourning the loss of the more typical child they expected. When a family expects a baby they tend not to dwell on the idea that their kid might never learn to speak, feed themselves or walk. Even if there are genetic issues within the family that might come up, there is always the hope at least for a while that the child will not be touched by it..

When the expectation of a typical child goes away everything changes, Instead of where will they go to college? Its will they be able to keep up with kids their same age at all? The list goes on even to things as basic as will my child recognize me as Mom/Dad?

My folks and I got lucky. I can’t walk but I can talk I graduated high school with a 3.0 GPA and went to college. I now live in a different state from them.

  • I told you that to tell you this: even though I accept my disability as part of me there are still things I grieve over I will probably never be able to cook alone so having a meal waiting when everyone comes back from work, school, errands,, etc. probably isn’t going to happen unless its take out.
  • I will never be able to teach a cartwheel. (Having to tell a child who thinks you hung the moon and stars that you can’t show them how to do one really sucks(
  • I can’t open soda bottles or cans. (Seriously? I’m almost thirty and they are not pickle jars)
  • Someone else till cuts up my food when needed because I can’t use a knife and fork together. (Again, I’m how old and can’t do this?)
  • I can’t go to the restroom without help. (Enough said)

Thea things(and a whole lot more I didn’t list( frustrate, irritate or just plain piss me off. Do not put me on a pedestal for just living life. Hopefully if I inspire you it’s is because of an accomplishment that doesn’t fall under the heading of day to day living

Day 222: I Would Like to Say a Few Things

Pollyanna (1960 film)

Pollyanna (1960 film) (Photo credit: Wikipedia)

I can be a very cynical person. A certain percentage of able-bodied people expect those with disabilities to have a Pollyanna attitude all the time. Pollyanna has not lived in my house on a regular basis since about the fifth grade ask my mother if you don’t believe me. Where the able-bodied community got the idea that we are perfect angels all the time I have no clue. Personally I have been known to swear and drink alcohol on occasion. Yes I am perfectly capable of sex you can ask either one of the two people standing behind me. Yes I realize that there is both a man and woman standing behind me and I’m so glad you’re smart enough to know the difference between the two. Not all disabled people choose to date others with disabilities even though you obviously think we should. Do you also think interracial marriages should still be illegal?

Why do you think it necessary to speak extra slowly to me? I promise you there is nothing wrong with my hearing or comprehension though I am beginning to wonder about yours. Please do not hurry your children away from me when they have a question. I am not a leper and treating me as such it is very hurtful. I have no intention of harming your child and they cannot catch my disorder I promise. The only thing that will result from there talking to me is a smile, an age-appropriate answer to the question, and permission to pet my Golden Retriever sidekick if they wish, nothing more.

If you see me in a store, restaurant etc. I would appreciate it if you would not address questions about me to whoever happens to be with me. Rest assured I am perfectly capable of understanding English. I am also perfectly capable of answering for myself. I realize that some people in wheelchairs often cannot do one or the other but it is impolite and presumptuous to assume. Please be advised that such an assumption is likely to elicit a smart ass, sarcastic, and/ or just plain rude response from me.

To parents shopping with children: I realize my service dog has more charm than should be legal. I also realized that he and children attract each other like magnets. Most of the time I do not mind stopping and chatting with you and your kids about him, it really does brighten my day. I do however request that you not let your children touch him without asking my permission first. He doesn’t bite and children on his favorite things in the world but I view the area that he occupies beside me as an extension of my personal space bubble and would greatly appreciate you and your children asking permission before entering it. I thank you for your consideration and politeness and taking the time to read this.

Day 198:Helen Keller: How Her Perspective Forever Influenced Mine

Photograph of Helen Keller at age 8 with her t...

Photograph of Helen Keller at age 8 with her tutor Anne Sullivan on vacation in Brewster, Cape Cod, Massachusetts (Photo credit: Wikipedia)

When I was still in grade school I saw a movie that would forever impact the way I dealt with my disability. After seeing The Miracle Worker I read everything I could find about her. Here was a disabled woman and her family who instead of listening to what modern convention of the time said they should do with her (leave her in an institution and wash their hands of her) they saw to it that she was taught to communicate. If her family was more than a bit skeptical that it could be done I’ll forgive them because at least they were willing to try.

She became the first deaf blind person to graduate with a Bachelor of Arts and eventually became a lecturer on many subjects, including socialism.

Helen Keller was my first disabled role model. She showed me that a disabled person could make their own life in spite the slings and arrows that circumstance and society put in the way and for that I will always be grateful.