This summer will be the filth summer since she was diagnosed with breast cancer. My sister calls that year our family’s Year of Hell for good reason. She was diagnosed in June and during her first week home after her mastectomy in September my dad had a heart attack from the stress of worrying about her.Thankfully it wasn’t fatal but as a result both of them were out of work for a while. My mother’s hair fell out from the chemotherapy and because of this we rewrote the Fuzzy Wuzzy rhyme. Our version is Fuzzy Wuzzy was a bear/ Fuzzy Wuzzy had no hair/ Fuzzy was a chemo bear. While doing chemo she got shingles. Yes shingles on top of chemo is as awful as you think. But this summer marks my moms filth year year with no cancer cells present. For those of you unfamiliar with cancer treatment , after the initial course of treatment is done a cancer patient must see an oncologist at least once a year for next five years to make sure the cancer hasn’t returned. It is only after five years of negative tests that a person can be officially declared cancer free When it becomes official in June I plan on getting a tattoo of military combat boots with breast cancer pink laces with her initials and the official cancer free date and the words free at last underneath since my mama was a soldier through most of my elementary school years In fatigues or out she the world’s most hardcore mama
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.
At this point in my life I’m pretty sure that the number of times I’ve been poked with a needle during a medical procedure is more than the number of birthdays I’ve had. I started kicking the idea of body ink around when I was about fourteen after one of my surgeries put me in the hospital for a month and left a very noticeable scar down my back.My parents aren’t anti tattoo so much as anti stupid tattoo ,which in my dad’s mind means a tattoo that a person just for the sake of having a tattoo. My mom thinks agrees and often adds,(because she’s an artist) , that something that is intended to be permanent should be well drawn . Her major stipulation was that she go with me to meet whoever I wanted to have the tattoo done by and see examples of their work before getting my done. She wasn’t going to let just anybody with a tattoo license near me. My dad’s only major stipulation was we could not get a tattoo before the age of eighteen and we had better not expect he or mom to sign a consent form for a tattoo we wanted before that, if we wanted one bad enough we’d wait.
My folks don;t think that getting tattooed makes you tacky, classless, or immoral, they did however point out that tattoo removal was often more expensive and a lot more painful than getting one done in the first placce if we decided we didn’t want it later. Even though both me and my sister discussed tattoos growing up I believe I was the first of the two of us to tell our parents that I would get one someday. My dad doesn’t get the attraction lots of people have to ink because he personally has a strong needle phobia, so when I announced this his response was to ask me why. To be honest my thought process hadn’t gotten past because it would mark aas different in a way I could be proud of as opposed to the way my disability made me feel, when my sister spoke up,”Look dad, she’s been poked with needles her whole life without much choice either way. At least with a tattoo it would be because she wanted it and something pretty would come out of it this time instead of a scar.” And with that my sister got the “Best Sister Ever” award and the last word.
I didn’t get a tattoo until several years later and dad didn’t see it for several days after because he drove truck during the week and didn’t come home before Friday and I had it done on a Wednesday. I remember he hugged me took two steps away because he was looking for mom,took two steps back, looked my arm,”Does it wash off?” “No.”Looks at mom, “You took her.” Not a question. “Of course I did, she can’t drive.”Long pause. “It’s pretty”
Since then I’ve seen and heard both my folks defend my ink to my grandma who Does think that having ink makes you tacky and classless because both of them have noticed some unexpected ‘Side effects” to me having a tattoo. It is an unfortunate reality for lots of people with physical disabilities that we are often mistaken for much younger than we are. I’m 29 next month and even though still get carded occasionally if I’m wearing short sleeves (my tattoo is on my upper arm) they never check to see if my i.d. is fake anymore. There has also been a significant drop in the number of people who talk me like I’m. five, who knew ?
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.
I first heard the word cancer connected to someone I knew when I was 10 or 11 years old. Anthony was a family friend who had an on-again off-again battle with leukemia for a large part of his childhood and adult life. I think I knew Anthony for a little over a year before I begin to suspect that he might have been sick with something and that maybe that was why he never took off his baseball cap, even indoors, even in the middle of summer. I’ve lost count how many times my parents have told me “you’re too smart for your own good” and that is one day when I wish I had been wrong. My folks explained about how cancer in general, and leukemia in particular works. For a while I sat still in the statue, processing the fact that my friend, who always let me beat him in our “swordfights”with foam weapons which he would fight kneeling to make up for the fact that I could not stand, who always seemed to have just enough change in his packet to pay for two sodas out of the machine in my dad’s comic store, was going to die and there wasn’t anything anybody could do about it. He died before the next year ended. He spent the last two weeks of his life in a coma on life support but the day before he slipped into the coma he drove to the comic book shop and hugged me goodbye. To this day my dad and I believe that he drove there specifically to say goodbye to me.I don’t remember cutting my hair beyond the smallest trims until spring break my freshman year at college. I suddenly knew that I would cut off my hair every few years and donate it to be made into wigs for cancer patients. Every time I get my haircut I always tell the stylist about Anthony. My sister took me one time while were we both in college and afterwards over lunch she told me that she had not previously known I had a particular reason for cutting my hair. This didn’t surprise me because Morgan is two years younger than me and wasn’t nearly as close to Anthony as I had been.
What did surprise me was that my dad had not had the slightest clue about my reasoning until my sister told him. I think we must’ve been on spring break again when she took me to get my haircut that time because I remember dad coming into my room at home shortly after I had gone to bed and telling me that Morgan had told him about the trip and about the things I had said. He told me that even though I had been doing it for years it had never occurred to him that Anthony was my reason. He also said he was proud of me.
There is one other thing I do remember Anthony and you, my blog readers, are witnessing it. Anthony died at the age of 24 and so the year I turned 25 I started what would become, though I did not know it at the time, a series of posts titled “Life, Death, and Disney.” In case you haven’t read the other posts the Disney part is a reference to the fact that the baseball cap he always wore had Snow White’s seven dwarves embroidered on it.I write the posts as a means of connection and so that people will know that an awesome person lived and died and in that brief span of 24 years made the world better than it was when he came to it.I believe that is a life goal everyone should have.