It's Beginning to Look A Lot Like Fun*Run Time

It's ALREADY that time of year again: The ADAPT Fun*Run for Disability Rights is April 22nd 2012. Maryland's fundraising goal is $8,000 this year. Yes, that's right, $8,000

Donate $1! Donate $10! Donate $100! Donate $1,000! JUST DONATE so we can FREE OUR PEOPLE! I thank you very much for your support!

Monday, March 31, 2008

DISABILITY: Just a Part of Who You Are

Today I did my talk on disability and the family. I've begun to start with "What is the first thing that comes to mind when you hear the word disability?" I got the standard answers, but today was the first time that I got "Disabilitiy means handicap."

"Can you expand on that?"


Today was the first time I chose to speak about how bipolar affects me, and I really wowed myself. I spoke in December but it didn't come up and at that point I was in such a horrible state that I really had no clue how it effects me. I like to talk on panels best. I feel that it is better to learn about disability in the plural sense as opposed to the singular sense. Disability is not singular. What I found today is that I am now my own panel. I am proof in and of myself that what is invisable affects someones life as much as what is visable.

Afterwards I got "I never realized that disability can also be mental and other things and that cancer is also a disability." Afterall, I had to talk about my family, and both my mom and uncle have cancer.

And Ms "disability means handicaped?" She said "You know, really a disability is just a part of who you are." That was the best thing I heard all day. It lets me know that I did my job.

The professor said afterwards that I really inspire (gag me) everyone, including herself, to really begin to think about things in a different way then they did before (I took back the gag in my head). That's the point of it all.

I HATE MY LIFE!!! No... really I dont. WAIT! Yes I do...

That's what's been running through my mind since Friday. You see, my campus has too many hills, and hills do not typically agree with CP. So it's taking everything I have just to walk around that place. I already can't get out of bed in the morning and have taken to going 5 days between showers and last week I wore the same clothes tues & wednes and then showered thurs (finally) and wore the same clothes thurs & fri. Oh yeah, I slept in the clothes the night in between too. EEEEWWWWW!!!! But yet I feel behind. I'm so tired I slept in til 3:45 sat afternoon. What more do people want from me?!?!?! Oh yeah, to spend 7hrs a week for the next month working with 100 children in a residential treatment center to get them ready for what I decided was a "Reach for the Stars" talent show (aren't I cleaver? We're working on raising self-esteem). Did I mention I'm supposed to be there from 4-6 wednes/thurs and 10-12 sat. No more sleeping in on Saturdays Sad I'm going on my birthday, I canceled my appointment to finish ordering my ultra-cool wheelchair, and I rearranged my shrink appointments for this. GAAAAHHHH!!!!!!! Don't get me wrong, I'm having SO much fun with the talent show (making my t-shirt was a nice displacement activity. Really... I am doing homework) but could I please have a permanent IV caffiene drip?

I may not be blogging for the next 5 weeks. Hope you don't miss me, and I hope for my sake that I don't have to be wiped off the floor when this is all over. [:'(]

Wednesday, March 26, 2008

How I Used my Independent Study to Break Out of my Shell

For those of you who are visiting my blog for the first time, or have not read some of my earlier posts from January, I completed an independent study from April to November of 07 where I planned a disability awareness workshop. This post is in direct relation to that.


I learned quite a lot from the experience of my independent study. One of the things that I have learned was how to really stand up for myself. My department head can be very scary. That is a bona fide fact. It took a lot of courage and conviction to go into her office last year. I don’t know very many people my age that could do it. After that, I had to face a room full of authority figures and muster up the strength to be in charge of them for once, as opposed to them being in charge of me. Overall, it took a lot of passion and a strong sense of principles to be able to coordinate an event that seems daunting to people twice my age. After showing so much chutzpah throughout it all, how could I then go back to shying away from difficult situations again? While I’ve always known how to stand up for myself, to advocate for myself, I used to just pretend to do it. I would sort of do it in unimportant instances while I would let someone else fight my real battles because it was easier that way. Not anymore.

My main goal throughout whole process of my independent study was never explicitly stated anywhere on the contract that I made for it. It is a subset of “To develop the skills associated with planning and implementing an educational workshop for pre-professional students.” My main goal was (to quote my advisor) to learn how to become less “explosive” when interacting with other people. That was something that was unbelievably difficult a year ago. It probably took just as much energy to focus on not being explosive as it would have to continue to be explosive. Unfortunately, I think I became explosive because, for whatever reason, I never developed great expressive language skills. Being explosive was a good fallback. My expressive language skills are still very far from where they need to be, but they are so much better. If given the choice, I would still prefer not to confront someone about a highly personal or highly professional issue in person. It takes too much processing for me to get thoughts to come cohesively out of my head, but I have at least been able to perfect how to do this in writing. When I express myself through writing I am not right in front of the person and I have the extra time that I need to process my thoughts instead of having to think on my feet.

Where I have been most impressed with myself is how I handled all of the recent meetings I've had to have with faculty members in my department. I wasn’t defensive, and I wasn’t blaming other people or coming up with excuses. For once, I really did start to become open to what everyone had to say. That isn’t me. Everyone else is supposed to be wrong. Instead, I walked out of those meetings in utter shock. Somehow all of these “I statements” kept flying out of my mouth and that wasn’t anything I was purposely intending to do. It just happened, and it worked. To quote my last blog carnival post, "what seems so odd to me is that people think more highly of me now that I am actively seeking/accepting help then before when I was just as actively pushing it away. Logic says that it should be a sign of weakness.” It is often hard for me to interact with other people because I don’t know how to do feelings. I usually either do explosive or funny. Since I don’t do explosive so much anymore, I’ve started focusing all my energy on not doing funny. There are even less situations where funny is appropriate.

What has been most helpful to me (besides my medication, which might turn out to be a god send) was not the planning of the workshop in and of itself, but that planning it necessitated working very closely with several faculty members from my department. The Family Studies department is very cohesive in both its ideology and structure and I believe that this provided me with the appropriate framework that I needed, which proved to be an invaluable asset. Instead of continuing to model the same people I had, who, now that I look back on things, also do not express themselves effectively, I think I inadvertently began to model the way that faculty were interacting with me. Hopefully I can replicate this within other environments.

Sometime in January I posted a list of 10 questions and answers, the last of which was, well, not really a question. It was “If I could tell my 11 year old self something… I would tell her that life isn’t going to get easier from here; it’s going to get harder, MUCH HARDER. So she should start practicing asking for help now, so that when she REALLY needs help she’ll know how to take it.” When I originally wrote that it was in direct reference to family issues and to trying to somehow make it through college alive, but it might be more applicable to apply it to the workshop.

I’ve spent my entire life having to prove myself to other people. For starters, the doctor who diagnosed me with having CP told my mom I was going to be retarded. This kind of stuff builds up, and I’m not sure that I’ve even completely proven myself to myself at this point. So what do I do? I go completely against what other people expect of someone with CP and do absolutely everything myself (an undisputed direct result of ableism). Even when I can’t; even when I shouldn’t. It is another default that I go to without question. This behavior is so ingrained in me at this point that it may be impossible to separate it out from who I am as a person.

Then what happens is that I’m very obviously drowning and either I am still in complete denial that I am in need of help or I fully realize that I need help, but at this point I have no idea how to get it. I can’t get help because I’m not even able to figure out what I need help with, in what way some other person could be of assistance to me. I have two problems. The first is that I can’t even work through situations in my head to be able to deduce which one thing is causing a problem. The second is my lack of expressive language skills.

I’ve spent so much of my life having to focus on becoming independent and it backfired. I spent all nighters working on the disability dictionary, and I exhausted myself running around like crazy so that I then fell asleep with the lights on, and I would freak out and have near panic attacks unnecessarily, because I have this overwhelming need to do everything myself. As I said before, it seems strange to me that people think more of me when I seek/accept help then when I don’t.

What else have I learned about myself? I’ve learned that I have real talent. Most of the time I haven’t thought very highly of myself. I have good reason not to. I will have taken six classes over again in order to graduate, and that’s not even counting all the classes freshman year I didn’t get grades for because it was decided that it was best for me to cut my losses and leave. When my parents were divorcing my mom went to court and convinced a judge that I was too disabled to work because I had no employable skills. She got me legally declared an adult dependent child because SSI is not as much money as child support is. I fully understand why she did it and I’d tell her to do it again— I’m an expensive person—but I never thought I believed any of it. It was just a ploy to screw my dad out of as much money as possible. But I think to some degree, even after the workshop, I really believe it. Basically what I’m saying is that on the one hand I’ve come really far towards having my life completely together, but on the other hand I’m still stuck in some of the same spots that I was in when I started. On some level a small part of me believes I really am incapable of holding a job. This doesn’t add up. I can no longer deny that I have somewhat incredible skills. How many people twice my age could have pulled off what I pulled off with so little resources? What I haven’t figured out yet is how to reliably harness those skills into any sort of a predictable outcome. My life has been like a game of Russian roulette. Sometimes I get lucky, and sometimes I don’t. I need to make sure that changes.

Tuesday, March 25, 2008

Tiny Tims & Supercrips

A paper I wrote last summer for of all things Intro to Art Therapy class. Don't ask... but it did in fact work for the assignment.


"It's always been my belief that media images of disability cause the disability community some of its most serious and persistent problems..." ~Prof Beth Haller, of media dis&dat

Images of disabled people being depicted in a negative light go back at least as far as the Old Testament, where having a disability meant that you had done something to anger G-d. Disability was equated with sin (Shapiro). In the New Testament you got another choice-you could be "cursed or possessed by evil" (Shapiro, 1994 p. 30). This view perpetuated to the time of Shakespeare, where he gave his Richard III a hunchback (even though the real Richard III did not have such a disability) in order to make him seem more evil. Today, films such as Peter Pan and Batman have villains with disabilities (Shapiro, 1994). While it is obvious that this view paints disability in a negative light, there are other less obvious ways that society views disability in a negative light. Those are the views of the Tiny Tim and supercrip.

The Tiny Tim

Tiny Tim and Mr SrcoogeJoseph Anastasio came to talk about ARC of Baltimore to an audience of TUSCFR members in a classroom in Burdick Hall last November. I was late, and before I got there he had asked people to write down the thoughts that first came to mind when they heard the word disability. I arrived in time to hear the answers. He called on four people, but I only remember three of the answers. One person said the elderly, another said people who cannot work, the third said she didn't know why but she always pictured little helpless children; I think the last person might have said something about wheelchairs. These are all very bleak images of disability. Especially, I thought, since it was 2006. They painted a very meager, maybe worthless, existence. Although I had not heard of the term until just recently, it was very clear to me that night that to those in the room, to be someone with a disability meant to be a Tiny Tim. That is the term (named after the character in Charles Dickens A Christmas Carol) disability advocates coined to articulate society's view that people with disabilities (PWDs) are "childlike, dependant, and in need of charity or pity" (Shapiro, 1994 p. 14).

Most people, I think, inherently feel sorry for PWDs. They feel like we must be suffering or that we are incapable of taking care of ourselves and making our own decisions (Johnson, 2003; Shapiro, 1994). Even if one of us is successful, like historian Paul Longmore who has a PhD and has written several books, but just happens to have gotten polio as a child and has to use a ventilator at night, we are still pitied. "[Once, a stranger] approached him [Paul Longmore] on the street and said, ‘If I were you, I'd kill myself'" (Shapiro, 1994 p 39).

The image of the Tiny Tim gained popularity in the 1940's and 50's when charities focused on finding cures for disabilities such as polio. They realized that pity opens wallets, so they began poster child campaigns. These campaigns played on society's fear that this thing, this disability, this horrible tragedy, could very easily invade their homes. Unless, of course, they sent in money to find a cure. The undertone of these campaigns was clear: G-d forbid you end up with a disability like the child on the poster. You're life will no longer be worth living; you'll be less then human (Shapiro, 1994).

Besides print, television has been another medium that has been used to insure that the Tiny Tim image of disability persists throughout society. When television first began to become big people took advantage of the new medium and the telethon was born. Started in the mid-1950's, disability organizations that believe that to have a disability means that something is wrong with you and that you desperately need a cure still use telethons today. The most famous telethon is the Jerry Lewis Labor Day Telethon for the Muscular Dystrophy Association (MDA). Telethons accomplish exactly what their predecessors, the poster child campaigns, did. They play on society's fears and in doing so perpetuate the feeling that to be disabled is something tragic. That is because telethons like the MDA Labor Day telethon most often focus on the small percentage of children who die from muscular dystrophy, for example, and not the far greater number of children and adults who go to school and work, have friends, and lead everyday normal lives (Shapiro, 1994).

The Supercrip

An image of a cartoon guy with a flowing cape leaping from his wheelchairThe supercrip is the other side of the Tiny Tim. It paints a picture that is just as damaging (Shapiro, 1994). The supercrip image of disability says that PWDs are "courageous or heroic super achievers" (Shapiro, 1994 p. 16). The fact that a PWD who achieves something that is expected of a normal person gets praised illustrates just how low societies expectations are (Haller, 2000; Shapiro, 1994). The supercrip proves the presumption that the Tiny Tims can and should overcome their disability, which makes us pity those who cannot even more (Shapiro, 1994).

There are many instances of supercrips being portrayed in the media. Perhaps the most famous supercrip in US history is President Franklin Delano Roosevelt, who had polio and called himself a "cured cripple" even though he could not walk at all (Johnson, 2003 p. 117). Christopher Reeve is probably the most famous supercrip of our generation. Following a horseback riding accident in 1995 that left him a complete quadriplegic until his death in 2004 Reeve remained absolutely admit that he would one day regain his ability to walk. Reeve even allowed himself to be digitally remastered to-almost realistically-"walk" in a 2000 Super Bowl commercial aimed at getting people to donate to spinal cord research (Johnson, 2003).
‘We were not meant to be living in wheelchairs. We were meant to be walking upright with all our body systems fully functional, and I'd like to have that back ... I'm not that interested in lower sidewalks' he told a reporter. It was nice to have access, he said, but people with disabilities should regard those disabilities ‘as a temporary setback rather than a way of life' (Johnson, 2003 p. 128-29).

Reeve's view is harming people with disabilities because he is echoing society's view that a life with a disability is second class at best (Johnson, 2003). He was the "... most recognized person in a wheelchair ever," so people had every reason to believe that this view echoed that of the rest of the disability community (Johnson, 2003 p. 129). Besides, Reeve just made for a great feel good story about fighting against the odds.

While some supercrips bring that status into themselves, some have that status thrust upon them. One such example is Jim Abbott, a pitcher for four Major League Baseball teams during the 1990's. Jim Abbott does not have a right hand. While Abbott tried hard to not to make a big deal out of his disability, a USA Today Article from his rookie season sensationalized a very average game (Shapiro, 1994). Another sports star thrust into the limelight is pro golfer Casey Martin. Because of his diabetes, Martin cannot walk long distances and requested the use of a golf cart on PGA tours even though they had been previously prohibited (Haller, 2000; Johnson, 2003). The use of a golf cart is not like a performance enhancing drug-it does not alter the way one swings his club (Haller, 2000). When the PGA refused, Martin sued under the Americans with Disabilities Act (ADA) which mandates that employers provide reasonable accommodation to otherwise qualified employees. The ADA also provides protection against discrimination by places of public accommodation-of which golf courses are mentioned specifically (Johnson, 2003). But, instead of presenting a story about the effectiveness of an antidiscrimination law, news media portrayed Martin's story as one about the triumph of the human spirit (Haller, 2000)

The Disability Rights View

I have been both a Tiny Tim and a supercrip. It is something that is easy to bounce between. Once, while sitting at an airport gate with my fully reclining rented wheelchair waiting to board a plane to fly to Minnesota for surgery, some man who was waiting to board the same plane prayed to Jesus that he should heal my legs so that I could walk again. Many other times people have told me that I inspire them. While it is easy to say that I do not want to be a Tiny Tim, being portrayed as a supercrip is something that I grapple with. The two instances sticking out in my head can illustrate the dichotomy I feel.

I went to summer camp in the mountains of southern Pennsylvania for six summers. The camp wasn't what anyone would call handicapped accessible-on top of being in the mountains, it was also in the middle of the woods. But the camps second director, Faye, was one of my mom's closest friends. Faye has known me since I was born and took it upon herself to decide that it wasn't fair that I should have to miss out on such a great opportunity that was camp-being that my level of impairment is relatively mild. So Faye bought a golf cart for the camp and I had a counselor drive me between activities that were placed particularly far apart. I think it was my fourth summer at camp, when I was 12 years old, that I took it upon myself to place on my camper interest form that my goal for that summer was to actually walk up "Killer Hill," the incredibly steep hill that separated the tennis courts, swimming pool, and archery range from the rest of the camp, instead of using my golf cart. Just once, just to say I did it... I wasn't crazy enough to think I could do it every day. I wasn't at camp very long before one of my favorite counselors came up to me and told me he had read what I had put on my form and how much it inspired him. I don't remember how far it was into camp that summer that I finally decided to do it, but the next morning my cabin's CIT had made an award that she decided to present to me at breakfast in front of the entire camp after the morning announcements. It made me feel uncomfortable. I hadn't climbed that hill because I was looking for praise and admiration, but because everyone else did it, sometimes several times a day, and while it felt cool that everyone was insanely jealous of my golf cart, it felt even cooler that I walked up Killer Hill just like everybody else. Calling me an inspiration, giving me an award, and making a fuss, just separated me from everyone else again. It wasn't a big deal when anyone else made it to the top of that hill after all.

The second instance happened much more recently, last April to be exact. My mom emailed my doctor, who works at Mt. Washington in PG county, right after I started volunteering and told her about how some of the patients were reacting to me, how cool they thought it was that I'm a patient there too. Dr. Alter replied with "She is an inspiration ... to all of us. I am thrilled." I printed that out and hung it on my wall until I moved at the end of the semester. What's the difference? Why doesn't that make me feel uncomfortable? Well, because I never thought about it that way before, but isn't that really why I'm getting into this field in the first place? To show the kids I know exactly where they are coming from and let them know all the pain and torture is worth something in the end. Dr Alter put it best when writing to me the same day to help me with my resources paper: "I am so excited.. I am also sure you are living proof to patients that people with CP do really...honestly have a life." In this case telling me I've inspired people is telling me I'm accomplishing my goal instead of telling me I've failed at it. I'm achieving what disability rights activists have been fighting to achieve for decades. To have us be viewed as people who "... are simply trying to lead normal lives, not inspire anyone" (Shapiro, p. 16).


Johnson, M. (2003). Make them go away: Clint eastwood, christopher reeve & the case against disability rights. Louisville, KY: Advocado Press.

Haller, B. (2000, Jan/Feb). False Positive. Ragged Edge Online, Retrieved 7/5/07, from

Shapiro, J. P. (1994). No pity: People with disabilities forging a new civil rights movement. New York, NY: Three Rivers Press.

Wednesday, March 19, 2008

Going Wheelchair Shopping Friday

My mom decided that it isn't such a great idea to mix new parts with 8.5 year old ones. I say "but do I really need 3 chairs?" And of course she says "It will be good because then you'll have a spare chair at home." If this is the first time you've read my blog, I walk, and I haven't needed a chair at home since I was 5 (other then surgery). That is something I really didn't need to hear, as I'm already concerned that my mobility is deteriorating. Anyway, we called my doc to get a revised perscription faxed to the dealer. Afterall, that's what she wanted to do in the first place too. My concern was getting a whole new chair before memorial day (I'd believe that when I see pigs fly), but now that my hospital placement is going to be NEXT June (09) I don't have to worry. Might as well go for it seeing as we called insurance and since I met my 2nd deductable and they're in network, it will be covered 100%. If I waited until the summer to go for it the deductable starts all over.

So Friday we are going to Alexandria to pick me out a whole new chair. I'M SO EXCITED! As much as I don't want to have a new chair, I've always loved going shopping for one. I'll have a mental breakdown the day it shows up at my door, but I can worry about that 8-12 months from now. Right now model chairs are fun to play with (how old am I???). In particular, I can't wait to try out some e. motion wheels. A girl at school has some and they look awesome. Anyone on here have some that can give me a testimonial? Anyone have any testimonials about anything else???

My mom wants to tell me that this is going to be complicated, but I disagree. It isn't the first chair I've ever had, and I've also done my homework. It looks as if I'm getting the same chair I already have, the Quickie 2. I'm trying to figure out what the difference is between that and the Quickie 2HP. I know that I want something that looks like a substantial chair, not something that fades into the background. Has anyone seen Carlana's chair on The Big Give? I can't figure out how she sits in that thing all day. There's nothing there. I keep reminding myself that from the waist up she has normal muscle tone, while I'm, well, a spaz. I want a manual chair that folds, but not top down. Rigid frames are too hard to throw in someone's trunk. Power assist wheels are non-negotiable. I wish they had been invented when I got my current manual. My arms are weak. I know I also want a hard back, signifigant arm rests, a clothes guard (can't understand why anyone wouldn't get one), a crutch holder, and foot plates that extend to the full length of my foot. My current ones only cover like half of it and they annoy me. Also, very unfortunately, since this is going to be my "work chair" I might have to spring for some foot straps so I my awful knee doesn't make me look odd. The idea of foot straps does not sit well with me, because when my knee wants to spaz and there is no room for it to do so (like in the back of a car) I feel like I want to crawl out of my skin. But I figure I can always get them and not use them as opposed to needing them and not having them. Oh, and as a side note, never try to enter a chair with clothes guards from the side. The first time you may get lucky and just crack it, but the second time you will most definately break the whole thing off Embarrassed .

Anyone have something they can't live without? I'm planning to have this chair into my 30s so I want it to be perfect.

Wednesday, March 12, 2008

Having a lot of Allies: A Sign of Weakness or a Sign of Strength?

What is an ally? Usually this term is used in relation to PWDs to mean any AB who truly understands our collective struggle in society and fights for our rights. One of my many goals right now: learn to look at my life on a micro scale as opposed to a macro scale. So, to take the idea of an ally and apply to a smaller scale, to me, an ally is someone who’s got your back. In this case an ally can be virtually anyone. A good friend, a parent, a significant other, a doctor, a teacher, a lawyer, even a service dog. An ally is anyone who has your best interest at heart.

I think I’ve probably had more then my fair share of allies over the years, but an ally can only be as good as you want him/her to be. If you don’t want allies, well then you’re going to be stuck spinning your wheels in the mud. Trust me. Been there, done that for much too long. This doesn’t just apply to PWDs, it applies to anyone, blind, sighted, gay, straight, white, black, or purple. Humans are social animals. We need someone in our corner.

Allies are support. As PWDs we all need more support then the “average person.” Leg braces/crutches are support, Braille is support, and extra time on tests is support. After we must manage accepting all that, who has room for the people supports? I sure didn’t. I tend to take self-sufficiency a bit too far sometimes. Yes I have orthotics in my shoes, but isn’t that enough (in the philosophical sense)? Don’t open a car door for me (I can do that myself), don’t help me clean my room (I could do that if I wanted to), and by all means do not offer to help me to not flunk my classes. I’ve flunked a lot of classes in my time. I’ve also had a lot of people offer to help with the executive functioning issues that lead to this. But I don’t need help. Really. I can do it.

This leads to now, where, to put it vaguely, my academic status is anything but static. Hmmm… In the last 9 working days I have had 7 meetings with either a combination of faculty from my department, or yesterday morning someone from disability support. Next week is spring break, but the week after I know I should have at least 2 other meetings of this nature. This doesn’t include the psychiatric help I’ve been receiving. I can’t even count the number of classes I’ve had/have that have been taught by someone with a social work background. At the moment, my life might make an interesting “B” horror movie: Attack of the Social Workers.

A (social worker of course) professor said in a meeting Monday that she is impressed at how much I’ve been open to suggestion from everyone lately. Well, besides looking at my life on a smaller scale, another one of my goals is being proactive as opposed to reactive. Finding my way out of the shallow hole instead of waiting until I’ve dug it too deep. Very few people get out of holes (figuratively or literally) by themselves. Either they have a rope, a latter, or maybe someone up above yelling “PUT YOUR FOOT THERE!” Is there anything wrong with that?

I’d have to say that I have at least 7 people who are very actively in my corner right now. Maybe more, but the other people have been around too long, have seen me fail too often, and are understandably distant. Either way 7 people are a lot of people. At the moment, 7 people seems like an army. What person has to be this dependent on so many others to sometimes just make it to the end of the day?

If other people can make it without having to check in with the entire world, well then I must be a very weak person right? Why did it take me this long to get this through my very thick skull? Maybe it’s the mood stabilizers, but NO!!! On the contrary, asking for help (accepting allies) is a sign of great strength. It means that you are not only cognizant of your shortcomings, but are also open to bettering yourself. Doing something is a whole other level then knowing something. Actions speak louder then words. It just seems so odd to me that people think more highly of me now that I am actively seeking/accepting help then before when I was just as actively pushing it away. Logic says that it should be a sign of weakness.

I’m working on 6 self improvement goals simultaneously at the moment. Just over the last 3 days I could list several examples of positive steps I’ve taken towards 4 or 5 of them. That feels really good. It feels even better when there are allies around to validate that yes, I am making improvement. Also, to use another cliché, 2 (or 7 or 8) heads are always better then 1. So in a sense I guess I feel bad for people who have few or no allies. They’re missing out on frequent warm fuzzies. Now if only I could keep telling myself this…

Disability & Its Effects on the Family

On occasion I have been asked by a professor in my department to speak to one of their classes about my personal experiances as a PWD. I'm always more than happy to do so. I could go off for awhile about why I must/why it is important for me etc etc, but that would be preaching to the choir. Anyway, at the beginning of this semester I took the liberty of emailing the 3 professors that teach family resources and volunteering myself upfront. Only one professor expressed interest, but unfortunately timing issues is preventing that particular presentation. I guess I'm flattered though that she thinks enough of me that basically, she's willing to take me for whatever she can get. What fits best is for me to come to her family relationships class. In 2 or 3 weeks I will be talking about disability's effect on family dynamics. I told her that this is not something I had done before, but that I was up to the challenge. Giving the same speech time and time again doesn't do either me or the people being "forced" to listen to me any good. There's one problem though. I believe strongly that the most effective learning comes from hearing first person accounts. I can talk on this topic long enough, I can even answer questions on it, but I'm the PWD, not the family member. I can talk about what things were like in my family, but in this particular case my older brother is actually way more qualified to speak on the topic. Am I getting my point across? I don't know if I'm asking for your input, suggestions, guidance, or what, but I thought it'd be good to throw the topic out into the blogsphere and see what comes of it.

Friday, March 7, 2008

2 News Stories From Yesterday

The first, Disabled Duck Gets Custom Made Scooter, I saw on my local news. It bothers me that they only had the video up, so I did a google search and found it in print on another NBC website. Lemon has a neurological disorder that prevents her from being able to walk on her own. So her owner Laura Backman, a kindergarten teacher, made a scooter for her so that she could walk. Not only that, but she brings her to school everyday. "I think it provides a really good introduction to disabilities and how all life is important," Backman said. "It doesn't matter if you're a duck or a person, we're all important." She has written a children's book about Lemon the Duck, but I did a search and couldn't find it. I guess it's not published yet.

The second story, that I saw on NBC Nightly News, is about a blind teacher at a school for the blind in Tibet. She, six of her students, and a guide who is also blind, set off to climb Mt. Everest. The documentary is set to be released soon I think. I couldn't find the story on MSNBC (after I couldn't find the first story I was getting frustrated). But I did find the groups personal website.

I'm Obsessed with Walking

I have 2 therapists (LCSW-C & an LCPC intern) and a psychiatrist. I discussed my poem with both my therapists this week and will be discussing it with my psychiatirst Mon afternoon. Unfortunately I hadn't been to my main therapist since Valentine's Day so we really couldn't go into it in depth. It was more of here's all of the crap that's been happening. To go off on a tangent, today was one of the best days ever, but that is the subject of another blog post. Anyway, all we had time for were a few "What exactly do you mean by..." One of which was "I'm tired of not being in control." Well, I said, I don't want to do an $8000 overhaul of my wheelchair. I don't want it. I don't want it at work. But if I want to/have to do a placement in a trauma hospital then I have no choice. I have to have a placement at one of the 2 trauma hospitals in Baltimore because my school won't let me go anywhere else. I voluntered at one hospital for a year and a half, and last semester I did a small placement at another. They are my only 2 choices left. So what am I going to do? I also didn't have control over 4 of the 7 surgeries I've had. Well 3 out of the 4 of those didn't work at all and all 3 of those I was VERY vocal about not wanting, but I was 10 and 17, so tough luck. The 3 I wanted worked for the most part.

I realized soon after I left that I am obsessed with walking. I keep saying this (I know I've said it in more than one blog post) but I didn't spend my childhood in a hospital being pulled apart and put back together to use a wheelchair everyday at work. I feel misled. Also, I had several doctors scare the crap out of me 5 years ago. Even with all those surgeries, if I start to use the chair too much at work my muscles will atrophy to the point of me not being able to walk at all. Not only that, but even 6 weeks of hanging mostly around my house sitting on my butt will result in trouble walking. So doctors don't have to tell me this. Either from my powerchair or sitting on my butt, I've experianced this several times. Thankfully 6 weeks doesn't do permanent damage.

Also (I think I've mentioned this in a previous blog post or 2 as well) I learned to walk 3 times. As I said to my therapist, walking is supposed to be something you just do. It's not something that should take this much effort. I realized after I left, that in some sense I am consumed with walking. It is something I think about every day. I'm not sure that's healthy. In a sense being active is a good thing for anyone, but often I push myself to the point of feeling like the walking dead at the end of the day. Very often. I am that affraid of one day not being able to walk.

I'm also concerned about my weight. The first thing I do every morning after I pee is step on my scale. Extra weight will put extra stress on my joints, and who wants that? To put this in reference, I am 5'1.5". If I ever saw 130lb I would be utterly besides myself. A few times at one point I saw 129.8 and while I wasn't happy, 130 would still be much worse. I prefer to be no more then 120. I went a long while disappointed with myself because I was 125-128 and then I discovered that if I come home feeling like the walking dead several times a week I can eat all the junk I want and maintain around 118. I'm not sure that's healthy either, but thinking about my weight everyday is also permanently ingrained in my being. Just to put everyone at ease, while I was in high school my mom asked an LCSW-C and 2 different PhDs whether I had an eating disorder. They all said no, since my concern stems from CP issues (walking). She was still convinced even after all three of them said no. Also, I am absolutly loving 118 and have no intention of going lower. 118 is perfectly healthy for my height. But maybe in a sense they were all wrong? Maybe I have a "walking disorder." Too bad you can't look that up in the DSM IV-TR.

To stem off of something the intern said on Monday, think of all of the energy I spend being so concerned about being able to walk. Then think about what else I could be using that energy for. It just doesn't make sense. Except, I think that I was raised with such an emphasis being placed on walking, with surgery and therapy and what not, that I'm not sure if I can concieve of even attempting to refocus that energy. Going back to the poem, which I spent more extensive time talking about with the intern, there are several other things in there that I'm tired with that stem from my childhood. It almost seems as if I have to overhaul myself in order to become a contented person. It's a daunting task.

If only it didn't seem like such a catch-22. Walking so much makes me so tired (HELLO, "walking dead"). I know I would be a lot less tired if I didn't walk so much but then maybe I wouldn't walk ever again. I would feel like I was admitting defeat.

Saturday, March 1, 2008

Looking Back and Moving Forward

I have a few reserve posts to use when it's been a few days but I have nothing to write about. They are things I have written for a grade, but apply greatly to the theme of this blog. The following is the end of a paper I wrote almost exactly 2 years ago for an assignment for my Family Resources class. The main part of the assignment involved completeing a minimum of 5 volunteer hours at a community organization. This just happened to be next in line, but it turns out it is very timely to be posting.

Yesterday I had a meeting with my advisor and my department head. When I left I managed to hold it together until I left the building and then proceded to cry for the next hour until I got ahold of my 2 best friends and they calmed me down. This is not the first time I have left a meeting with 1 or both of them and broke out in tears and I venture it will not be the last.

You can not just graduate with a degree in Family Studies, you must pick a concentration. My concentration is child life because that is what I want more then anything in my life: to become a Certified Child Life Specialist. They on the other hand have other ideas. In order to graduate with this concentration you must complete at least 1 hospital field placement. It is absolutely non-negotiable that you are not allowed to complete a hospital placement if you have another concentration. At that meeting I was told that even if I chose not to officially change my concentration on paper I would still not be allowed a hospital placement. Why? Well, child life has the most number of credits to complete. My transcript sucks, so they wonder why I choose to continue with something that is not working? I would like to say was not working. I did not know I was bipolar until October. They are judgeing me based upon something I had no control over. If I do poorly this semester I take full responsibility, but please give me that chance.

The other reason? I had a smaller placement last semester and they say it didn't go well. That there were problems. Besides the 2 of them there is the professor that taught that class and my supervisor who all know what I did wrong, but none of them will tell me. I tried to email my supervisor 6 weeks ago or so, no answer. I thought it went well. I tried my hardest.

The thing is, I know I suck at this. I've known for the last year and a half. I haven't gotten any feedback, but I see other volunteers. I'm not stupid. Doesn't it say something that I still desperetly want to pursue it? Sometimes I wonder why. I have skills in conference planning beyond belief. Why go into a field starting behind when I can go into another starting way ahead. Well because I believe deep down that this is what I was born to do. Tell me what skills I'm lacking and I'll fix them.

After talking to my friends for about 90 minutes and getting my head on straight I called the office. I have a 10am meeting with the 2 of them on Monday. Yesterday's meeting was on their terms. Monday's is on mine. My parents taught me many things growing up. They taught me to be independent. They taught me that CP does not define me. But most of all they taught me how to fight my battles. My parents gave me balls, and I intend to use them. If you read what follows you'll see why I'm putting my game face on and kicking some ass Monday morning. Wish me luck.

I know that they believe that they are acting in my best interest. I know that contrary to the professional boundries that they try to model (all human service workers need professional boundaries and how else are we supposed to learn them?) the 2 of them genuinely care about me. The concern that they showed when I couldn't get out of bed was amazing. I know that they want to steer me towards a path where I can succeed. What they are steering me to is a path where I will feel ashamed of myself. Where I will feel like a faliure.

Maybe I have already succeeded? For the first time I can say that I am an adult, not that I am pretending to be an adult (to which my advisor kept answering "you are an adult"). Except that this time I believe in my heart of hearts that the statement is finally true. No one, absoulely know one stands up to my dept head. She is one of the most indimidating people you will ever meet. Up until May or June the anticipation of having to meet with her would make me nauseous to the point of almost throwing up. Now in stark contrast I think she is a cute jewish mommy, but still, going in on Monday and standing my ground is a HUGE deal. I don't know of one student in my entire department who would take her on. If I have to I think I will make an appointment with the dean of the college of liberal arts. He knows who I am. Not just my face, but my name. I ran into him once and he didn't say hi. He said "Hi Cheryl how are you?" How incredibly cool is that? Back to acting in my best interest, because I went on a tangent, I'm sorry, but no one knows what is in my best interest except for me god damn it.


Prior to volunteering at Mt. Washington I was slightly apprehensive about my ability to handle this experience. I have had previous experience working with disabled children at an overnight camp and found that I felt strong sympathy pains towards certain campers during the entire session. As a long time outpatient of the Cheverly location I wondered if I was too close to the situation. If it turned out that I couldn’t handle it, would I have to abandon my dream of becoming a Child Life Specialist?

What I have found during this experience was the complete opposite. Instead, volunteering at Mt. Washington has reaffirmed my belief that I am a natural in this career field. For starters, having experienced seven surgeries during my childhood has made me very comfortable in a hospital setting. This is an attribute that seems to come naturally to me but not to many others, as I have observed some adults become anxious when visiting a friend or family member who is in the hospital.

Secondly, my first hand experience with post-surgical rehab has made me very adept at adapting recreational activities to meet the needs of various situations. For example, in my first visit to Mt. Washington, I was asked to play UNO with a patient at bedside who could not sit. As I was leaving, my supervisor sort of apologized to me, stating that she realizes how difficult it must be to play UNO in that situation. After hearing that come out of her mouth I was slightly stunned. Two of my operations rendered me both unable to sit or stand for an extended period of time, and UNO comes to my mind as one of the most easily adaptable activities to that situation.

Volunteering at Mt. Washington is also beginning to help me develop skills that I am lacking. Disability has isolated me and I often find it very difficult to interact with my peers. I am very hesitant about walking up to someone and starting a conversation. This is a skill that is now required of me. Some patients with speech disorders are reluctant to engage in conversation with anyone, but such conversations are an integral part of their recovery. While I am not going to go up to another college student and ask them if they remember what they had for lunch yesterday, this setting does give me the opportunity to practice this skill in a much less threatening environment than a college party.

Lastly, it amazes me what an impact I can have on these kids without even doing anything. Last Friday I walked through the door of the CPAR unit wearing a skirt, which exposed several of my post surgical scars. I was immediately greeted by a patient who asked me if I was a patient there. Almost simultaneously as the word yes came out of my mouth, a look of shock and amazement appeared on the face of another patient who was sitting in a wheelchair near by. “YOU ARE?!?!?!” she replied. She then proceeded to open up to me probably much faster than she does with anyone else.

Even though I have only volunteered at Mt. Washington a short time, I have already learned a great deal. I have learned that a gesture that may seem small and insignificant to me (such as wearing a skirt, or playing UNO) may mean a great deal to someone else, and even have a lasting impact on their life. I am a role model to those kids just for being me. I am not just a “big person”, but a big person very much like them who is beginning to lead a very successful life. And that is not something that is seen very often in life.

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