There are many things I’d miss if my house caught on fire, here are the five things I wouldn’t lose sleep over, in no particular order.
The carpeting: I hate the carper in this house.It started as a nondescript grayish tone and now after almost a decade of wear I can’t even think how to describe it. I would much prefer hardwood floors.
All the things that other people have stored in my family’s garage: Some of the stuff down there doesn’t even belong to anybody in my extended family! Really people I know my mom is a good person but a storage unit is NOT THAT expensive. Plus the units are guaranteed not to have spiders etc. a claim my garage cannot make in good faith especially in winter, when everything wants out of the cold.
My uncle,well maybe just my uncle’s things: perhaps then he would get the idea that my room is not a storage unit, see bold portion of above statement in which the cost of a unit is referenced.
My manual wheelchair: I should note that I am not talking about the wheelchair I use everyday. I’m talking about the hospital chair that I use when I can’t transport my battery powered chair. After a few hours that manual is awful.
My closet, or rather the things in it: My sister stored a lot of things in the top of my closet during one of her various movies, she said it was temporary. the boxes are still here except on the floor of my closet instead of on the shelf because the added weight of her boxes caused the shelves to fall which then brought down the closet rod with it. The closet has yet to be repaired.
Sometimes the hardest truth to face are the ones that appeared to come out of left-field. Yesterday I ran into someone I have known since I was four and last saw when I was twelve. A lot of things gave changed, he has short hair now for one….for two he’s getting married. I’ve told myself for years that it was just a little girl’s hero worship crush and that it was dead and buried long ago. It’s not. Last night something died that I had never realized had lived this long, the knowledge that one day I’d be grown and the hope that he’d see that. Sometimes the reason you stop running from yourself is because you hit a brick wall.
Note: this letter is written to all able-bodied people from the perspective a 25 year-old disabled woman, namely me. The opinions in this letter are mine and should not be used to make blanket assumptions about the disabled community in general, though I wouldn’t be surprised to find that a lot of disabled people would agree with me.
Dear Able-Bodied Citizen:
I realize that I am something of a curiosity for you, my battery-powered wheelchair, bent hands, muscle spasms in chronically bad posture is definitely strange. I am writing this letter will in an attempt to treat your ignorance and inform you of some of your habits that drive me crazy.
If you are in a store with your children and they ask what is wrong with me do not tell them to avert their eyes and hurry past.Just because you were taught that this is acceptable behavior doesn’t mean you are correct. If your kids want to know why I am it in a chair tell them to ask me. I will not bite or give them a communicable disease, what I will do is give them an age-appropriate answer to the question in the hope that the next generation is better informed than the previous ones.
Just because I use a wheelchair please do not assume I am below average intelligence.In simpler terms do not speak to me as though I am I am five years old, it’s demeaning and insults both of our intelligences.
Please do not pat me on the head.I am a person not a pet and since you are a stranger to me you have no right to touch me like that anyway.
Do not assume that you can ask very personal questions within five minutes of meeting me.Do not ask me if I am capable of having children right after we are introduced, you don’t need to know unless you are interested in that happening and if you are interested the fact that you brought it up so soon is almost a guarantee that I will not be interested.
If I am in a store with a dog there is a reason.I realize that most retail stores, theaters, restaurants etc.have a “no dogs allowed” policy, in my case however in most circumstance I have legal grounds to disregard that rule. The dog you see walking beside me is trained or in training to be a physical extension of me, bridging the gap between what I want to do and what my body is physically capable of, the federal government views a service animal as a four-legged piece of medical equipment, telling me that my dog isn’t allowed is the same as denying me the use of my wheelchair.
I hope this letter has been informative without being rude and I appreciate the time you took to read it.
For those of you who don’t know these past two years have been what you might call a lesson in endurance for me.My mom was diagnosed with breast cancer a year ago, after a surgery which has left her lopsided and a round of chemotherapy she is okay. A week after her surgery my dad survived a heart attack. Everybody here has been out of work for at least a year. Just when I thought things were on the way to getting back to normal I found out something which makes sad all over again. My sister’s boyfriend’s mother just got told that her multiple sclerosis is worsening rapidly. I consider this wonderful lady to be my friend, hearing that was like getting hit in the face. Apparently I deal with awful stuff happening to me better than I do when it happens to a friend.
I have come to realize that I dislike the word maybe immensely.That word implies the possibility of failure and disappointment. I have lost count of how many times people have put that qualifier on to things that I am excited about. When they discover my aspirations instead of saying “well of course you can, even if you have to work a little harder than everyone else it will be worth it in the end” they say,”well maybe someday you’ll be able to.” I am by no means saying that most of the people I know act like this, they don’t. When strangers tell me things like this it is relatively easy to ignore because I can remind myself that they do not know me and have very little, if any, idea of what I am capable of. It is far more hurtful to hear such things out of the mouths of family members even when you know that their only intent was to be supportive and encouraging. I love my grandma but she has made statements like that to me my whole life and she doesn’t realize that they hurt more than encourage. She came to the house briefly yesterday and I was outside with my bike and she wanted to see how it worked. Right now until I get the hang of making the bike go my mom walks behind keeping the bike going even if it takes me a while to complete the motion with my arms. Mom is basically doing what parents do when the child graduates from training wheels with a regular bike,except I am not quite ready for her to let it go yet. The reason I am annoyed with my grandma is that appears that she almost expects me never to outgrow the need for help. I have enough self doubt I don’t need anyone else fueling that.
Recently I had two very interesting questions asked of me. What do I really want out of life? The second question seems even more impossible for me to answer, what can I contribute to the world that no one else can ? I have no idea how to answer either question and that scares me a lot.I know that I’m only 25 and I’m not supposed to have the answers to life, the universe and everything quite yet, but when it comes to these question shouldn’t I at least have an idea by now? My sister often tells me that I need to make goals and live my own my life, loot out up my parents house etc. but even if I had he ability to do so right at this second, which I don’t, was would I do? WHY in the name of Pete does most of family treat me like someone they can’t see?????? Just questions with no answers
I got my first bike today. I don’t care that it is technically a handcycle which means I “pedal” with my arms. It bothers me a little bit that I’m having some trouble with it at first mostly because that mean my arms are a little weaker than I had believed. I have to remind myself that the last time I got to play with one I was may be a hundred pounds soaking wet if I was lucky, not 130 give or take. That in the picture isn’t mine but this way you have the general idea of what it looks like. The bike in the picture was built specifically for competition, think along the lines of the Tour de France, although I have yet to hear of a disabled person entering or of an equivalent race specifically for the disabled. My fingers are missing a little bit of skin where the one closest to it rubbed against the chain housing but it is nothing a pair of bicycle gloves won’t fix. The other problems I had I blame largely on uneven ground and the fact that my arms are not used to that kind of workout yet. I will get better though you can bet on that.