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.
There have been some really good posts on the front page of WordPress that got me considering my motivations for writing. I write Blades of Truth, my current Fiction Friday Harry Potter fan fiction serial for fun because I really enjoy Harry’s world and will use any excuse to visit it. However it and my more serious work in progress (and by serious I mean hopefully one day have its own cover art and be in bookstores and libraries with my name on it) share a commonality. In both works the main character is disabled. The lack of disabled people in all forms of the media has been a soapbox for me for a long time. Whether we realize it or not we look to people similar to ourselves in our own culture to tell us how that culture expects us to behave. For many many years when disabled kids and young people look to their culture to find examples of themselves there weren’t any or at the very least very few.
The message that conveyed to me growing up was go way, disappear, you have no voice, no value, no story worth telling. That’s a really hard thing, to realize that society views you that way for no other reason than an accident of birth or circumstance that you cannot control. I learned that lesson well before I was 12 years old. When I was in high school I read a story a three-page story for my sophomore English class that my teacher, upon returning to me, that I should expand into a book. It wasn’t anywhere close to what she thought of as her preferred type of leisure reading but if it were published she would buy it in a heartbeat she told me.
Originally the female lead wasn’t in a wheelchair at all. I had considered making her disabled but decided against it because I was afraid that by putting the lead character in a chair I would hurt the manuscript’s chances of being picked up by a publisher. This decision nagged at me for years until I asked someone else’s opinion and they said that if I didn’t like the way current media undervalued and ignored the disabled I should force them to take notice and write characters who were. It might mean that the story got twice as many rejections as it would otherwise but when it finally found a publisher those people would want to tell the same story I did and I wouldn’t feel like a sellout to myself.
Today I saw this and this on the WordPress Discover page (apparently Freshly Pressed got a makeover). I realized that in hesitating to make the main character disabled I had been fundamentally altering my story in an effort to make it more palatable to those who would eventually pass judgment on it. I had originally made her able bodied to avoid questions like “is this a book about disability”. No it’s an action adventure urban fantasy romance similar to several books Mercedes Lackey has written. Yes her disability will affect how the action plays out and certain things will happen to her that probably wouldn’t happen if she were not disabled but it is not now and never was meant to be a book “about” disability.
My intention for this book is to prove that everyone can have adventure in their lives. Then it is possible for someone in a wheelchair since birth to do more than sit on the sidelines. She can be the kick ass heroine just as often as her able-bodied next-door neighbor. To the publishers who I will one day get rejections from because you are too afraid that the story won’t be long received because of her, that’s fine. Not everyone can be brave all the time. You’ll kick yourself later though for not taking the risk because it really is an awesome story.
You are four years old when your grandmother gives you a name for this thing that makes you different. Cerebral Palsy. As you get older you remember certain things from that day, the white coral wind chimes she brought back from the mission trip to the Philippines, the bookshelf sized carvings of the heads on Easter Island. These are the things you remember from that conversation, and as you get older you try to remember if you had any inkling that that phrase would have so much impact on your life. 25 years later you’re still not sure.
You are 21 exactly when you realize that your aunt and uncle have spent your entire life not knowing exactly why you’re in a wheelchair. You find this out because their daughters, the eldest who almost shares your birthday except that she is exactly one year younger than you today and her sisters have gone out with your sister and left you at the house, just like you knew they would. Your aunt and uncle didn’t see them leave and so when they realize they are gone they ask you why you didn’t go too, I mean, it’s just as much your birthday after all. You tell you tried and the girls didn’t listen They are mad, angrier then you’ve ever seen either of them and that is the best birthday present ever. The conversation that ensues reveals that somehow they missed the memo that your condition had a name. For 20 years the reason why you can’t walk, can’t dress yourself, have difficulty feeding yourself… Was a complete mystery to them, and they loved you anyway, without need of explanation or label. For your 21st birthday your aunt and uncle gave you the gift of true unconditional love.
You are nine years old when you meet the boy who will break your heart for the first time. The two of you are as inseparable as it is possible to be when he is a year older than you and not in the same class. Which is actually quite a lot of the time since you both have physical and speech therapy during the school day. You overhear a fragment of conversation between your parents and his when they come to dinner and he stops eating to feed you the peas you have been chasing on your plate. Something about being glad the two of you are not high school age yet.
You are ten , two weeks shy of eleven when you move away. He cry every day for two weeks. Then once a month for the next six then at least twice a year for the next four years. When you’re 18 you find his name on one of those reconnect with your old classmate websites. You beg your mom to pay the subscription fee so you can message him . He remembers you, sort of. It isn’t until several weeks later reading his LiveJournal that you realize he is gay. There is still an indent in bathroom wall from where you punched it.
You are 16 when a boy who might be in love with you tells you you’re beautiful. You are 22 when a man who probably shouldn’t tells you the same thing. You believe the man but not the boy who said it when you were 16. Why?
You are 27 when your best friend dies. You both knew it was coming . You said all the hard stuff. When you find out he’s dead you are still violently sick . You don’t sing at all for almost 3 years.
You are nine when you decide that you believe in capital punishment. A family friend has been murdered along with 15 other people by a fellow soldier who has a tendency to drink to the point of blackouts. When you find out the details from reading them in the paper you scream and cry until your throat is raw. You plot the murder of this man. Your mother take you serious enough that she insists you see the school guidance counselor, who doesn’t take you seriously at all. She calls your mom when you tell her that you consider your death acceptable collateral damage as long as you took the guy with you . Your mom tells her that this is the first and only time she’s been glad to disabled because he might actually do it. Later when she tells you that the counselor called you decide that it’s time to play along before the guidance counselor had you put in straitjacket.
You are 30 when you realize that love is a lot harder than it looks from the outside. Love is picking your battles and being willing to fight every single last one of theirs with them whether or not they ask you. Love is patient, but a patience that is at times not at all saint like. Patience can be a struggle but it is the willingness to undertake that struggle that is one of the hallmarks of love
So the Ambassadors X song Renegades has been haunting me for weeks, every time I’ve turned around it’s playing. It’s the kind of song that makes you want to get up and move, even me, who has rarely made dancing in a wheelchair look cool or even coordinated, unlike some people I know. It’s the song you go to the concert to sing at the top of your lungs even though you will have no voice for the next three days. Yesterday I decided to check Youtube to see if there was a music video because I was going to reference it in a “yes we can change the world damn it” type post. I found the official video. Cheered and cried all the way through. Their renegades? Disabled people. A blind person doing Olympic style weightlifting. A blind person skateboarding. A person with one arm boxing. People with no legs or arms wrestling. Growing up disabled, society expects us to live quiet lives. The people in the video are doing anything but and the band thought it was important to show that. So if anybody connected with thw band sees this, thank you. You had a fan anyway because the song rocks but the video takes the cake. It is my new theme song.
Anybody who has read much of my blog probably knows I’m disabled. What you may not know, depending on which posts you’ve read, is that I have a non disabled sister who is two years younger than me.. When a family has a child with special needs it is easy for able bodied children to feel lost.My sister learned to pick me up at age six. She also started asking to push my chair on flat surfaces at around this time, even though she was barely tall ll enough to see over the handles. I remember her fixing me cereal and toast for breakfast before school after Mom got me up and left for morning PT. Able kids often find themselves in the role of advocate for their disabled siblings amongst their own peers and sometimes with adults.I’ve lost count how many times Morgan has gotten mad at someone’s unfair treatment of me and told them off, no matter how old the person is. She continues to be one of my loudest cheerleaders even when I don’t think there is anything worth cheering for. I am forever grateful for her support and love If I could give one piece of advice to parents who suddenly find their children divided by that invisible yet obvious line between “normal” and “different” remember a few things. You have (at least) two kids. Even though may see half a dozen people related to their medical issues in any given week or month,, make time for their sibling . Your individual relationships with them will shape their relationship with each other. Do your best to make sure that an able child doesn’t feel like their primary function st home is that of caregiver for their disabled sibling, a situation like that will probably blow up in your face loudly if it goes on for very long.
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.
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.