Mark E. Smith is a 38 year-old with cerebral palsy. He is the author of several books and founding editor of WheelchairJunkie.com. On his website he maintains a blog entitled PowerchairDiaries. He is also manager of Pride Mobility Products, a wheelchair manufacturer. Thank you to Debbie for informing me of Mark's blog and his incredible story.
Ian Pearl, a Huffington Post blogger with Muscular Dystrophy has made the headlines recently in his fight against his health insurance company, Guardian. But it is not just a fight with his insurance company, it is a fight for his life! I am rooting for you, Ian! (A full post on this coming soon.)
Nancy Mairs has written several books and essays, the majority of which are devoted to what life is like with Multiple Sclerosis.
Shiloh Pepin, more famously known as "mermaid girl" was born with Sirenomelia or mermaid syndrome. Sadly, she died Friday, October 23rd at the age of 10 do to complications from pneumonia. May you rest in peace, Shiloh.
Run, Forrest, run!
I want my own "Run, Forrest, run" moment.
Sometimes I wish I could just purposely throw my crutches to the ground and then go into a full out run! No crutches, just my shoes hitting the pavement while I continue on, upright at full speed as the wind pulls my hair away from my face. I daydream of this freedom every once in a while.
Sometimes I wish I could just run likeas my sister does as an athlete on her college soccer team (with her very own scholarship). Or even just be able to run long distances as I see people jogging all the time. My mode of running of course is best when done on an elliptical machine, and that isn't even running at all.
Some might call this self-pity; others would call it being human, wanting that which we cannot have.
I am only human, after all.
And like all people, I have dreams. Some just have greater possibilites than others at becomming reality. I admit this dream is more like a fantasy, something that will never come true. From time to time, I become hyper-aware of my CP and wish to abandon it if only for a short time to feel what it's like to be "normal" in the realm of physical functioning, something which Forrest was able to achieve.
Sometimes I wish I could just purposely throw my crutches to the ground and then go into a full out run! No crutches, just my shoes hitting the pavement while I continue on, upright at full speed as the wind pulls my hair away from my face. I daydream of this freedom every once in a while.
Sometimes I wish I could just run like
Some might call this self-pity; others would call it being human, wanting that which we cannot have.
I am only human, after all.
And like all people, I have dreams. Some just have greater possibilites than others at becomming reality. I admit this dream is more like a fantasy, something that will never come true. From time to time, I become hyper-aware of my CP and wish to abandon it if only for a short time to feel what it's like to be "normal" in the realm of physical functioning, something which Forrest was able to achieve.
Walking and rolling?
Today I went to see a new doctor, a physiatrist.
My orthopedic surgeon referred me to him. His specialty translates into helping people with disabilities gain the greatest level of mobility.
The main reason I went to him was to discuss whether a wheelchair might be appropriate for part-time use. It is true that I am mobile on my crutches and get around quite well. I will admit, though, that winters are difficult, mostly on my joints and my body as a whole. The doctor explained to me that when I use crutches to walk, it is almost like bench-pressing all the time because I am supporting my entire body weight on two very thin metal sticks.
I was very anxious coming to the appointment, and feeling a little ridiculous too. I felt torn, and still do about whether or not a wheelchair would really improve my quality of life. When using crutches, I can separate them from myself. They are in a way more detachable than a wheelchair. It is easier for others to see me separately form my equipment when I use crutches. I have a sense that when I start using a wheelchair even part-time, it will be harder for people to see me for me, and not the equipment first.
There was one positive to this visit. I liked the doctor very much, something that cannot be said for my orthopedic surgeon who I have been seeing since I was two years old. First, his attending came in and started talking to my mother as if I was not there. She corrected him within seconds and then I was allowed to speak for myself. Aside from his initial faux pas, the attending wasn't that bad.
He actually asked me questions, for one, and wrote them down instead of using the Dictaphone and talking about me in third person without acknowledging me as my orthopedic surgeon does. His bedside manner is completely ridiculous and nonexistent. Good thing he's a lot better with a scalpel! I have the scars to prove it.
The physiatrist was much better in his bedside manner because he actually acknowledged me and my concerns head-on.
I've heard about Botox being used to help those who have CP before but never in relation to myself. I never thought to myself. Hmmm, I should try that.
The same is true for medications that would help relieve spasticity and muscle tension associated with cerebral palsy. I've never thought of taking medication, nor did I know that you could take medication to treat something like CP. This notion is foreign to me. Even now that it's available, I think to myself, Why would I start taking something now, I've lived without medication for 21 years why do I need it now? I'm trying to wrap my head around all of this. I really don't like medication and only take it when necessary. Aside from that, it makes you drowsy, which isn't really conducive to being a college student.
So I've opted out of medication for now and have decided to try the Botox instead. The Botox is supposed to help my muscles loosen up so I won't constantly be at odds with my body, trying to stretch it beyond a certain point when it wants to go the opposite direction. The Botox itself is not without conflict as well. It is by nature a poison, after all. The notion of injecting such a substance into my body does seem strange, and this certainly will not be a Botox party. Not for vanity, but practicality. I have been told I will need anywhere from six to eight injections in my legs and that this will need to be repeated anywhere from two to four times a year. I suppose it's worth a try to see what the benefits could be.
Another thing I've been trying to wrap my head around is the idea of a wheelchair. Me + wheelchair = ? It may allow greater independence in certain environments; for example, if I had to travel several blocks daily to get from place to place in an urban environment. In trying to wrap my head around the idea, I just keep repeating the word in my mind: wheelchair...wheelchair...wheelchair.
In one way, I seeit a wheelchair as a tool for greater independence in certain situations though not a replacement for my crutches. And in another way, I see a wheelchair as acknowledging my CP in a way I have not don before. I see doing so as almost a defeat, as if I am letting the cerebral palsy win and overtake me somehow. I'm trying to shun these notions, the negative ones at least, but can't seem to shake them just yet. I don't want to make myself seem more disabled than I already am. But I know people will probably react that way.
There is a stigma with disability, but I perceive that it becomes greater the more severe it appears to the observer. So I'm battling it out in my head trying to determine what is important and where I belong and how best to ambulate.
I do not want to let my CP win or overtake me or become part of my identity more than it already is. Though I suppose the more I fight it, the more it becomes a self-fulfilling prophecy. What to do with this I wonder? How do I turn this around and move forward in a positive way?
My orthopedic surgeon referred me to him. His specialty translates into helping people with disabilities gain the greatest level of mobility.
The main reason I went to him was to discuss whether a wheelchair might be appropriate for part-time use. It is true that I am mobile on my crutches and get around quite well. I will admit, though, that winters are difficult, mostly on my joints and my body as a whole. The doctor explained to me that when I use crutches to walk, it is almost like bench-pressing all the time because I am supporting my entire body weight on two very thin metal sticks.
I was very anxious coming to the appointment, and feeling a little ridiculous too. I felt torn, and still do about whether or not a wheelchair would really improve my quality of life. When using crutches, I can separate them from myself. They are in a way more detachable than a wheelchair. It is easier for others to see me separately form my equipment when I use crutches. I have a sense that when I start using a wheelchair even part-time, it will be harder for people to see me for me, and not the equipment first.
There was one positive to this visit. I liked the doctor very much, something that cannot be said for my orthopedic surgeon who I have been seeing since I was two years old. First, his attending came in and started talking to my mother as if I was not there. She corrected him within seconds and then I was allowed to speak for myself. Aside from his initial faux pas, the attending wasn't that bad.
He actually asked me questions, for one, and wrote them down instead of using the Dictaphone and talking about me in third person without acknowledging me as my orthopedic surgeon does. His bedside manner is completely ridiculous and nonexistent. Good thing he's a lot better with a scalpel! I have the scars to prove it.
The physiatrist was much better in his bedside manner because he actually acknowledged me and my concerns head-on.
I've heard about Botox being used to help those who have CP before but never in relation to myself. I never thought to myself. Hmmm, I should try that.
The same is true for medications that would help relieve spasticity and muscle tension associated with cerebral palsy. I've never thought of taking medication, nor did I know that you could take medication to treat something like CP. This notion is foreign to me. Even now that it's available, I think to myself, Why would I start taking something now, I've lived without medication for 21 years why do I need it now? I'm trying to wrap my head around all of this. I really don't like medication and only take it when necessary. Aside from that, it makes you drowsy, which isn't really conducive to being a college student.
So I've opted out of medication for now and have decided to try the Botox instead. The Botox is supposed to help my muscles loosen up so I won't constantly be at odds with my body, trying to stretch it beyond a certain point when it wants to go the opposite direction. The Botox itself is not without conflict as well. It is by nature a poison, after all. The notion of injecting such a substance into my body does seem strange, and this certainly will not be a Botox party. Not for vanity, but practicality. I have been told I will need anywhere from six to eight injections in my legs and that this will need to be repeated anywhere from two to four times a year. I suppose it's worth a try to see what the benefits could be.
Another thing I've been trying to wrap my head around is the idea of a wheelchair. Me + wheelchair = ? It may allow greater independence in certain environments; for example, if I had to travel several blocks daily to get from place to place in an urban environment. In trying to wrap my head around the idea, I just keep repeating the word in my mind: wheelchair...wheelchair...wheelchair.
In one way, I see
There is a stigma with disability, but I perceive that it becomes greater the more severe it appears to the observer. So I'm battling it out in my head trying to determine what is important and where I belong and how best to ambulate.
I do not want to let my CP win or overtake me or become part of my identity more than it already is. Though I suppose the more I fight it, the more it becomes a self-fulfilling prophecy. What to do with this I wonder? How do I turn this around and move forward in a positive way?
Can't drive 55
But I don't want to go through twenty-two more bi-monthly lessons before I get my license. I'm ready to put this in overdrive and make greater, faster progress towards my goal. Hopefully I can move forward with weekly lessons to speed my progress. I understand "getting your license demonstrates a minimum level of competency," as stated by my driving instructor.
However, having my driving license will open up so many opportunities to me. I can get a job and live in an apartment. I can go places without having to rely on other people. My drivers license is the key to so many pieces of my independence.
Say hello to Big Bird
Yes, I named my car. Meet Big Bird, my gold Subaru Outback. My car has been modified so that I can drive using my hands only. "Look, Mom, no feet!"
Pulling, or "rocking" the controls in my left hand causes Big Bird to accelerate. Pushing the controls forward activates the brakes. I use my right hand to control the steering wheel with the help of a knob which is fastened to the wheel. This knob is detachable so that a regularly-abled person can drive the vehicle.
The modifications also include a footplate which covers the accelerator and brake foot pedals so that my feet do not accidentally bump them. I typically do not to use this feature because I tend to position my feet far back so they are no where near the foot pedals. Also, I see the footplate as slightly inconvenient because when it is in place, my feet feel cramped and my knees tend to hit the metal rods below the steering wheel which connect the hand controls into the gas and brake system.
Warning: This vehicle has been modified with an adaptive driving device to be used by trained and licensed operators onlyI love how Big Bird has a warning sticker when both the character and the vehicle couldn't be more rated G. The warning is very serious, however, as those unfamiliar with how to use the controls could easily get in an accident. The installers of the modifications have horror stories of their misuse. At a full service car wash, one of the attendants got behind the wheel of a modified car without knowing what they were doing. As a consequence, they plowed through a brick wall, pinning and ultimately paralyzing another co-worker!
Service dog files-vol. I
With the help of Capital District Center for Independence, I started pursuing the idea of a service dog two years ago and have been on and off with the application process ever since. Until now, that is. I have in my files six applications to fill out. The organizations I am applying to include Empire Servicedog Program Inc., Canine Partners for Life, Canine Companions for Independence, Canine Working Companions, Inc., and Paws with a Cause.
Each application follows the same basic pattern as far as requirements:
Looking at all these parts six times over is certainly overwhelming, especially when I have difficulty discussing my disability, let alone asking for help.
Part of the reason I have stopped and started it so many times is that I have difficulties describing and putting my exact form of cerebral palsy into words. Though pursuing a service dog will certainly enhance my life in many ways, I find it daunting because applying for a service dog is asking for help in a big way, and also acknowledging my CP to a degree that I have not done before.
It is for these reasons that I have shied away from it in the past, but there is only so much denial and procrastination that one can do. I can only benefit from doing this, but I have had doubts about it in the past, wondering if I would be perceived as a "good" recipient for a dog, having an odd fear that one had to be wheelchair bound in order to be a proper candidate.
A service dog is also a large financial commitment, with the fee being up to $20,000! So far I only have a quarter of that maximum amount saved in reserve for a dog. Otherwise, I'll have to take out loans or fund raise the remainder, though I've been told that fundraising for such endeavors has not been fruitful given the current economy.
It has occurred to me to post a wish on Wish Upon a Hero once I am placed with a dog to help pay for the remaining expense of the dog. However, I don't hold out much hope in this as I have participated in granting wishes on the site and seen people asking for the simple daily things I take for granted. So I am not sure I can be so bold as to ask for thousands of dollars from strangers.
Each application follows the same basic pattern as far as requirements:
- Service Dog Application (consisting of many parts)
- Application Fee: $50 dollars each
- Medical Information
- Professional Reference Form
- Veterinarian Form
- Letter of Reference
- Photo of Self
Looking at all these parts six times over is certainly overwhelming, especially when I have difficulty discussing my disability, let alone asking for help.
Part of the reason I have stopped and started it so many times is that I have difficulties describing and putting my exact form of cerebral palsy into words. Though pursuing a service dog will certainly enhance my life in many ways, I find it daunting because applying for a service dog is asking for help in a big way, and also acknowledging my CP to a degree that I have not done before.
It is for these reasons that I have shied away from it in the past, but there is only so much denial and procrastination that one can do. I can only benefit from doing this, but I have had doubts about it in the past, wondering if I would be perceived as a "good" recipient for a dog, having an odd fear that one had to be wheelchair bound in order to be a proper candidate.
A service dog is also a large financial commitment, with the fee being up to $20,000! So far I only have a quarter of that maximum amount saved in reserve for a dog. Otherwise, I'll have to take out loans or fund raise the remainder, though I've been told that fundraising for such endeavors has not been fruitful given the current economy.
It has occurred to me to post a wish on Wish Upon a Hero once I am placed with a dog to help pay for the remaining expense of the dog. However, I don't hold out much hope in this as I have participated in granting wishes on the site and seen people asking for the simple daily things I take for granted. So I am not sure I can be so bold as to ask for thousands of dollars from strangers.
I wish the world was flat
Sincerely I do. If the world was flat, and smooth I might add, it would make mobility much easier. I wouldn't have to stare at the ground as I walk. Sidewalks, in reality, are a particular headache when the roots of trees grow under and make it all topsy-turvy. I am not, after all, a Weeble. Even the natural seams can sometimes cause a problem. If placement of a foot or a crutch is not completed correctly, one might just end up kissing the sidewalk. That is to say nothing of cracks, which inevitably get worse over time.
Stairs are another issue of inconvenience, but they are everywhere. Ascending or descending, it doesn't really matter, though going down is always a bit more of a hazard.
Stairs are the primary reason I wish the world was flat.
In a world of flat surfaces with no peaks and just valleys, it should be deemed illegal to wax a floor, as this undermines the purpose of a perfectly flat surface altogether. I would write my congressman!
Stairs are another issue of inconvenience, but they are everywhere. Ascending or descending, it doesn't really matter, though going down is always a bit more of a hazard.
Stairs are the primary reason I wish the world was flat.
In a world of flat surfaces with no peaks and just valleys, it should be deemed illegal to wax a floor, as this undermines the purpose of a perfectly flat surface altogether. I would write my congressman!
I love you Josh Blue!
Josh Blue is a comedian with Cerebral Palsy that is not afraid to make jokes and laugh at himself. Watching Youtube videos of his performances has reminded me that it is okay and in fact healthy to laugh at myself. In one of his performances he says, "As part of my act, I would like to inform you that you are all going to hell for laughing at me."
On his road to fame, he has many accolades. However, one of the things I find most fascinating about Josh, besides his ability to so wittingly make fun of himself, is this little fun fact: when he started doing stand-up, he was pursuing a degree in creative writing from Evergreen State College. As my dreams and aspirations are to get an MFA in creative writing, Josh Blue, I may very well become you.
On his road to fame, he has many accolades. However, one of the things I find most fascinating about Josh, besides his ability to so wittingly make fun of himself, is this little fun fact: when he started doing stand-up, he was pursuing a degree in creative writing from Evergreen State College. As my dreams and aspirations are to get an MFA in creative writing, Josh Blue, I may very well become you.
Josh Blue, one day I hope to meet you. I'll go to one of your shows, we can maybe even have a chat. I would also love to get your autograph, even if it takes you 45 minutes, as you claim.
Josh Blue, I'm a big fan of you!
Tales of the torture stick
My clarinet, my love, my torture stick. I had my first lesson of the semester Tuesday. I've been playing it for a year and a half, yet I still squeak. Why? Because Cerebral Palsy effects my fine motor skills, mostly in the left hand and I am not always able to cover the holes completely, producing a shrill, ear piercing squeak in place of a beautiful high C.
Just one of the frustrations of an amateur clarinetist who happens to have CP.
Trying to be PC about CP
Society is trying to be politically correct about Cerebral Palsy. Hell, society tries to be politically correct about everything, or as much as is humanly possible anyway. What is deemed politically correct has changed over time within the fabric of society. But I am beginning to wonder if society really can go too far in an attempt to be politically correct. After all, the ultimate goal of being politically correct is to not offend anyone. So, lets explore the terms that have existed to describe people such as myself, everything from cripple to handi-capable.
The word cripple originates from before the year 950 and is perhaps the earliest known term in the English language to describe someone (person or animal) that is physically impaired. The word originates from the Old English word creep, as in to carry one's body in a slow fashion.
The word disabled originated between the years 1925-35. The definition of disabled is far less flattering then its current public acceptance, being defined as "crippled; injured; incapacitated " (Dictionary.com). Although disabled is the most current preferable term, the definition holds so many negative and insulting connotations, I am not sure that I agree. The definition itself implies helplessness and that people who are disabled lack productivity, which isn't true!
I'm not fucking Tiny Tim!
But I digress, society is grappling with the idea of whether or not to take the
But I digress, society is grappling with the idea of whether or not to take the
"recommendation to put the person before the disability, favoring persons with disabilities over disabled persons and person with paraplegia over paraplegic. Such expressions are said to focus on the individual rather than on the particular functional limitation... but the "person-first" construction has not found wide acceptance with the general public, perhaps because it sounds somewhat unnatural or possibly because in English the last word in a phrase tends to have the greatest weight, thus undercutting the intended purpose"(dictionary.com).
Handicapped (it just keeps getting better) originated sometime between 1910 to 1915. As dictionary.com points out in its usage note, to provide some social and historical background, "some stigma may attach to the word handicapped because of its origin in the phrase hand in cap, actually derived from a game of chance but sometimes mistakenly believed to involve the image of a beggar."
I don't see a hell of a lot of difference between the word disabled and handicapped. They both have the same general meaning and imply a helpless existence. So to those who say that the word disabled is more preferable, they should probably consult with more people who may fall under the definition of disabled or handicapped! At this point, I see the difference as minute. Its like comparing apples to apples, one might be green, one might be red, but they are still both apples, damn it!
Just this past week, I learned of a term when someone referred to me as handi-capable. This caught me off-guard. Apparently alongside this new term is differently abled. With the coining of such terms as handi-capable, I believe that society's efforts to be politically correct have truly completed a self-defeating circle, and shot themselves in the foot. Then, perhaps they can adopt the term handi-capable and keep it, for all I care!
There is no politically correct or incorrect word with which I wish to describe myself. I have Cerebral Palsy but Cerebral Palsy is not me.
Maladaptive technology!
For me and many other people with disabilities, adaptive technology is a vital part of our independence and daily functioning. Adaptive technology permeates every area of my existence as a student. So when it fails, there are so many frustrations and headaches, especially when there is no easy fix in sight, which makes me feel a bit like chicken little.
I use various forms of adaptive technology. From voice recognition software which allows me to speak into a microphone headset and have the words I say appear on the computer screen before me, to electronic text books which allow me to use a screen reader built into my computer. It speaks the words of the textbook in a digitized voice.
I occasionally use Kurzweil which works on the same principle as E-text. Instead of working off a disk, you have to physically scan the pages you want to read into the program and it will read it back to you in Steven Hawkins' voice. Kurzweil has less accuracy in word interpretation than electronic text in my experience.
I occasionally use Kurzweil which works on the same principle as E-text. Instead of working off a disk, you have to physically scan the pages you want to read into the program and it will read it back to you in Steven Hawkins' voice. Kurzweil has less accuracy in word interpretation than electronic text in my experience.
For the past four weeks, these vital technologies to my academic success have been largely unavailable to me due to technological failure. I thought I could fix it with a thirty dollar upgrade, but I was oh, so wrong. I had to jump through many hoops to get my speech recognition software working again. Not being able to use my voice recognition software was very detrimental, my traditional typing skills are practically non-existant and my inability to spell drastically cuts down on my vocabulary, making it very hard for me to communicate what needs to be said.
It was also extremely difficult to meet the demands of my classes, outside of doing assigned readings because every assignment is submitted electronically. Before finding a solution to my speech recognition program difficulties, I would write out my assignments, dictate them to my mother over the phone, and then when she e-mailed them to me, I would submit the assignment. I don't like having to rely on people like that, especially for such a large stretch of time. I tried so many options and consulted with so many "technical professionals" who just didn't have answers for me. I have visited ITS technical support services eight times this semester alone.
It was also extremely difficult to meet the demands of my classes, outside of doing assigned readings because every assignment is submitted electronically. Before finding a solution to my speech recognition program difficulties, I would write out my assignments, dictate them to my mother over the phone, and then when she e-mailed them to me, I would submit the assignment. I don't like having to rely on people like that, especially for such a large stretch of time. I tried so many options and consulted with so many "technical professionals" who just didn't have answers for me. I have visited ITS technical support services eight times this semester alone.
When it comes to adaptive technology, it can be hit or miss. Technology is great, when it works, but only when it works. I am aware that unfortunately there is adaptive technology out there to which I do not have access to. As a journalism student this semester, it takes countless hours to transcribe a digitally recorded, one-hour interview. Doing so is frustrating and tedious work. Indeed, in my frustrations with this task, I recognized the need for being able to plug in a digital recorder into the computer and then be able to upload the transcript into a word document. I was told that this technology was "not open to civilians." This is very curious and frustrating, knowing that there is something out there that could help me function better, with greater independence, yet my access is denied and I cannot fill that need.
Four weeks and three hundred dollars later, my adaptive technology is up and running, nearly as good as it was before, and hopefully with a little more tweaking, I can get things back up to 100% soon. When you are so dependent on adaptive technology for academic atonomy, it is completely maddening to not have a quick fix. Hopefully, my technological sky will not fall again any time soon.
Strictly platonic
In the interest of full disclosure, with the purpose being to plainly state: This is who I am, and I am not ashamed, it just is.
Have people's assumptions, conscious or not, kept everything in the strictly platonic zone? I would say yes, probably, to some extent, though it's hard to know the severity of that extent. A lack of interest from the opposite sex has led me to question my sexuality.
I definitely like men, but if I were to place myself on Kinsey's continuum of sexual orientation, a scale that runs from zero to six (zero being exclusively heterosexual and six being exclusively homosexual), I would currently place myself at two with my attraction to men accounting for 70%, and my attraction to women accounting for 30%. I know that my attraction to women, however subtle, is not some kind of experimental college fad because I first started to notice it at age twelve. It is important to note that sexuality itself, and therefore sexual orientation, is a fluid thing and will not necessarily stay stable over time.
I definitely like men, but if I were to place myself on Kinsey's continuum of sexual orientation, a scale that runs from zero to six (zero being exclusively heterosexual and six being exclusively homosexual), I would currently place myself at two with my attraction to men accounting for 70%, and my attraction to women accounting for 30%. I know that my attraction to women, however subtle, is not some kind of experimental college fad because I first started to notice it at age twelve. It is important to note that sexuality itself, and therefore sexual orientation, is a fluid thing and will not necessarily stay stable over time.
In the last six months, I have asked two people out, one female and one male, and I've been rejected both times. Putting yourself out there on the line is never fun, especially when your affections are not returned. This is a universal truth. I don't like to be vulnerable, no one really does, but having Cerebral Palsy gives me a heightened sense of vulnerability in daily life, not just in relationships. I wonder how many people can get past the crutches, past the physical, and into the personality, the mind and the soul, that which truly makes me, me.
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