CURE PITY!

I realized the other afternoon that it's October, disability awareness month, it's 2/3 over, and I've done nothing for it. We can't have that! So without further ado, here's a video from Gillette Children's Cure Pity campaign. There's a bit of subtle ableism in there, but I still think it's great.

VICTORY!!!

I thought briefly of not posting this account, because actually, thinking about this now the people in question could be reading this. Although doubtful, I do know they have read before. However, I am bursting with pride and that outweighs my reservation. That and I think I can be vague enough not to identify them on the internet.

I have irrational anxiety issues that have grown slowly over the years to the point where the impact reached its peak 2 years ago. My panic attacks manifest themselves in severe pain (CP + panic sucks) and this has resulted in me desperately trying various benzodiazepines, sleeping pills, SSRIs, OTC meds, all having nasty side effects of extreme drowsyness and/or suicidality and/or nightmares. I settled on some low dose baclofen and a significant increase in botox, which I think I no longer need but am afraid to give up.

My panic sets in when confronted with people. People who may or may not in reality have any issue with me, but whom I imagine have major issue with me. People in authority. People in authority are intimidating and scary to many people, but I tended to take it to the extreme, having nightmares and panic attacks about them in my sleep and avoiding them at all costs, even if it was to my extreme detriment. One of my worst ever panic attacks (it's in the top 4) occurred when I was in the same room with someone who had no interaction with me. There were 100+ people in the room and she was on the other side.

I have really noticed a decrease in my anxiety during 2010, to the point where I really almost did decline 3 of my 8 botox shots last week. I'm "fine"; I haven't had a panic attack since late April (YAY!!!). My thoughts are still there, I haven't become magically freed of my issues with authority figures, but this fear no longer rules my life.

Tuesday I attended a meeting specifically because I expected 1 of 2 people would be there, both of whom are guaranteed to increase my anxiety. This time my anxieties are based somewhat in reality, however at this point I could choose to have no interaction with either of them without consequence. I attended though because their opinion of me (I'm not inside their heads, who knows what they think) doesn't matter anymore (it um, actually mattered quite a bit not all that long ago). They will have no impact on my life; they will not keep me from doing what I want to do.

A few days before the meeting a friend said "You know so-and-so will be there..." I did. I gave that less then 30secs of thought prior to her mentioning, and had decided that was the very best reason to go. To prove to myself that this person doesn't matter.

How did it go you ask? Well due to the fact that the bus didn't show and I had to take the next bus, I arrived 15mins late to the meeting in a packed room which could have easily contained 3 dozen people. This positioned me almost as far as I could possibly be from both people (they both showed up), which was good, because although I could see them they weren't in my direct eye line, and say the only spot was sitting next to them (every spot at the table was taken thank god and I was positioned with the row of chairs behind the table) it would have been asking too much.

They were however right in front of the food table and I was able to get up 3 times, standing right behind them. My anxiety level was slightly increased the entire time I was there, however it stayed level and did not increase as my proximity changed. That's MAJOR. The food was too good and I was too hungry to give much of a crap about what they thought of me. I was able to pay attention to the meeting and absorb everything the leader was saying, as my thoughts about what they think of me, while present, were not all consuming. Another MAJOR feat.

Thankfully I didn't have to speak to either of them. One left early and I was able to position myself out of harms way (for lack of a better term) at the end of the meeting so I didn't have to say so much as a "hi" to the other one on the way out, without it being obvious. One of these months I will work up to that. Small talk (with anyone, not just authority figures) is something at the top of my list of things to work on...

[ok, so I don't like family guy, but the picture is fitting]

On Recovery

If you haven't noticed by now, I spend a lot of time thinking about words and what they mean and how they are used. On Our On operates Wellness & Recovery centers. I HATE those words, to me they bring forth an image of illness. But I've had nothing better for recovery. I make a point of saying I have "psyc issues," a "psychiatric disability," or a "psychiatric diagnosis," depending on the day and what I feel like, and stay far away from mental health/illness. I won't call CP a developmental disability (DD), not because I am offended by the term, but because I just feel it's too vague of a term to have any purposeful meaning. I like the label of consumer, although a lot of my friends despise it. I grapple with knowing when I am in a setting where I could get myself in trouble for not using people first language and when I can be comfortable and free to slip into "crip" and "spaz." I generally prefer shrink to therapist, although I am ok with psychiatrist--social worker sounds awkward and how many people know off hand what LCSW means?

The thing is, I like the concept of recovery, fully embrace the general meaning, and feel like I could be on the path to achieving it. It's just that I don't like being associated with the substance abuse world. I don't use DD because I feel the need to differentiate, same thing here. This lack of alternative terminology has left me feeling awkward.

BUT I'VE FINALLY GOT IT!

I've been spending a lot of time over the last 2 months or so thinking about my mom's cancer. She's approaching 10 years post-diagnosis, and well, had cancer for some time before diagnosis, so it's been 10+ years. She has had cancer every single day for 10+ years. Who has cancer for OVER A DECADE? People deal with cancer for long periods of time, but they go in and out of remission. Or they don't. They die. After a lot sooner then a decade. She's never had a remission.

Which brings me to the topic of remission vs recovery. People don't generally recover from or are cured of cancer. Doctors are very hesitant to use those words because of the high probability of a relapse or an occurrence of a secondary cancer stemming from the side effects of the chemo or what not that got you into remission from the primary cancer in the first place. They wait years and are very cautious.

So I've decided I'd like to say one day (whenever that is) that my bipolar is in remission*. It acknowledges the very real fact that my symptoms will come back, but that I am/have been symptom free for a significant period of time. Unlike cerebral palsy, I do believe that it is possible to manage bipolar to the point where my symptoms become dormant (I hope that when they do come back they don't reappear with the force of a volcano). It's something to strive for, to hope for, to confidently reach for. A challenging but attainable goal.

*I realize I'm contradicting myself when I say I'm trying to differentiate by not using DD or recovery, and then gravitate towards another word already associated with something else. But I still feel it's a clearer definition. Oh, and I'm still undecided on how I feel about the term "symptomatic."

Thankful Thursday

I had the pleasure of visiting Dierdre's site when I was hosting the blog carnival. Her motto: be happy. be thankful. be positive! I can't be happy or positive right now. Frankly, my life is absolutely horrible. Not so much in the general sense, but certainly today. And yesterday. And tomorrow. But Dierdre kind of helped me. There is always something to be happy about, although I wouldn't exactly use the word happy. I think that a person might never be happy a day in their life, but they can certainly be thankful for what they have, even if they don't like it. I believe that the 2 can be mutually exclusive emotions.

[image description: red heart that looks like it was done out of paint, with thankful written in cursive inside the heart towards the left]

I've decided to participate in Thankful Thursday a minimum of 39 weeks in 2009. In case you're wondering where 39 came from (why not 40?) 39 is 75% of the weeks in the year. Why am I committing myself to Thankful Thursday? Because I also believe that thankfulness can lead to happiness.

So here's my list for the week. I'm thankful because:

• I'm going to Baltimore this weekend and the Disability Power & Pride Inaugural Ball on Sunday.
• I have 2 good friends that really care about me.
  
• I've gotten pretty good at networking and I can network even more Sunday night.
  
• Obama is going to fix this big mess that Bush caused. Even if it is going to take several years to dig us out. He's going to hit the ground running, with at least one major change happening on the 21st.
• I ordered a GREAT book on Amazon (see sidebar) and had the opportunity to read some of it yesterday.
• Finally after 4 years of dealing with DORS they did something really beneficial yesterday.
• Because my mom is getting married to someone my grandma called "the greatest man still living."
• I have an appt with a new Dr next week who might finally get my meds perfect. They're good, but not perfect yet, and my psychiatrist isn't living up to my standards.
  
• I joined ADAPT in June. It's given me a greater voice.
• US News & World Report listed child life as one of their 11 Best-Kept-Secret Careers. When I finally get my life together I might actually be able to find a job in my chosen field. I was always worried that the field would shrink if we hit a recession.
  

Congratulations to Me!!!!!

Friday is my one year anniversary!!!!!! One year anniversary of what you ask? The one year anniversary of when I finally decided to start taking my meds. This is the biggest deal to me since the first time I walked all by myself (down to the kitchen to ask for something to drink). I don't remember that at all. I was only 4.This I think I will remember for the rest of my life. It's way more important, as I've come to the conclusion that why should anyone care if a person can walk or not? On the other hand, everyone should care if a person takes their meds. Just in case you're new to reading my blog, I was formally diagnosed as bipolar in December.

[image discription: crowd silloutte, confetti, & ballons: Congratulations... you did it!!]

I've had to master how to walk 3 times up until I was 14 when people finally decided to slow down on the slicing and dicing (surgeries). It took me 5 years to get this med thing down, and in the beginning when I finally decided to stick to it, it was just as hard as learning how to walk. Yet nobody's decided to acknowledge the effort. So I've decided to toot my own horn. I DESERVE IT!!!!! Somehow everyone thought the walking thing was a very big deal though. I just don't get that anymore...

[image discription: smiley face giving 2 thumbs up--CONGRATS!]

Usually I've only lasted 8 weeks, and once somehow for an entire semester, but a semester is nowhere close to a whole year! If I could jump, I think I'd be jumping for joy! (the dog will have to suffice) As this fall semester started I've known I was getting closer and closer to my anniversary (October 10th is now permanently burned in my head), but I just kind of decided to push it aside as something that was not all that big of a deal. It hasn't been all that hard for months. Besides, taking your meds is just something that adults do. And nobody else has ever cared, so why should I? Now that was just stupid... Of course I should care!

[image discription: picture of a jumping dog-- Congratulations! I'm so proud of you that I'm jumping for joy!]

I forget exactly when it was (March maybe?) but after nobody acknowledged my 5 month mark (remember that the longest I've ever stayed on my meds before this was 4 months) my best friend told me that if I stayed on my meds for a year she would throw me a party. You would think that if she promised to throw me a party she would write down the date somewhere wouldn't you? Apparently that was not the case. I've been trying to call her for days but she hasn't been calling me back. I finally got in touch with her earlier this afternoon and she had no idea. So apparently she doesn't care either. But you know what? I don't care that she doesn't care. I'll throw my own party! A few weeks ago she finally passed the praxis after taking it for the umpteenth time, and that is probably just as big of a deal to her. I go over to her apartment every Thursday to watch Grey's, so I'm going to go to Giant later to order us both a congratulations cake and pick up a congratulations card for her. She'll probably feel bad that she didn't do anything for me, but whatev.

[image description: crowd, confetti, and balloons-- CONGRATULATIONS!]

Pictures to follow...

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.

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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.

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.

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"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

Joseph 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

The 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).

References

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 http://www.raggededgemagazine.com/0100/c0100media.htm

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

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.

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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.

What Does Bowling Have in Common with Art?

I have CP. In addition to the fact that I can't walk fast and that people can hear me coming from a mile away because I'm so heavy on my feet, or the fact that I seem to be incapable of eating like a grown up person being that I'm usually walking around with some leftovers on my clothes (right now more than some because I stupidly decided to eat macaroni on the couch and I know better) I also can't see so well. It's somewhat of a curious problem in that I do not need glasses. My eyes are perfect. It's my brain that's caused me not to have any depth perception. I do not have any concept of how long 2in is or what 3c of water looks like in a pot. My brain won't let me. I also cannot tell time and I am 22 years old. If a clock has all 12 numbers and all of the ticks in between I'm pretty good, but take away the ticks and I'm sunk. Where is the hand pointing? I LOVE digital clocks. So there are things I just cannot do, like catch or throw a ball (mostly) or bowling. I suck at bowling. I think my highest score is a 54. But somehow I really enjoy bowling. Why? When I go bowling I step up to the lane with every intention of getting a gutter ball. I never ever expect to knock down even 1 pin. So when every couple of frames my ball does manage to make contact I'm ecstatic. It's a great endorphin rush.

So what does any of this have to do with art? Well... I suck at art too. I hate art because I can't do art. I can't do art because people expect me to be able to have skills like perspective and the ability to look at something and copy it exactly or to glue things onto a poster straight. I have compensated for my lack of ability in that area by taking theatre classes to fulfill art credits and microsoft office classes to fulfill tech credits (me+power tools=BAD idea) so that I can steal other people's clipart and make kick ass powerpoints for presentations instead of posters and awesome flyers and brochures for projects that I am involved in.

Then this past summer I called my mom and begged her to pay for me to take Intro to Art Therapy in summer school for fun. It was the first time the class was being offered and there was no guarantee that it was ever going to be offered again. This might be my only shot. I knew who was teaching it and I'm very interested in alternative methods for pain management. 3 weeks before the first class I received the following email "If time permits, we will create art during our first class period. Please bring the following items: crayons, markers or colored pencils, glue or tape, scissors and a photo of you that you don't mind cutting and/or pasting." One single word stuck out at me and I went into a panic. OMG I did not think this through before I signed up for this class. What did I think I was doing taking it? She wants me to WHAT??? SCISSORS? I don't do scissors. I suck at scissors. Then I calmed down. This was art therapy for family studies majors. Not art for fine art majors. No need to panic... I had every reason to be confidant that she would be reasonable, unlike a past traumatic art teacher I'd had for 2 years.

This class was the single most amazing class I've taken in college. Tied for second are parenting class and small group dynamics. What I've realized I've done was to take my outlook on bowling and transfer it to art. So what if I will never bowl a 200? It can still be fun. So, my art will never hang in a professional gallery. So what? Does that mean that I cannot enjoy the process of making it, or that looking at the outcome cannot still make me happy. This makes me gag, because I have heard it so much, but art is not about the outcome, it is about the process.

The last 2 months for me have been HARD. I planned the most amazing disability awareness workshop as an independent study, and then I lost it. Completely crashed. Stopped going to class b/c I couldn't get out of bed. Then I've been sleeping ok, but at the wrong time. It's 1:30 AM and I'm completely wired right now. But I'll sleep til 3pm whenever it is that I do sleep. So I still couldn't get out of bed to go to class. I had to withdraw from classes. Ws are better than Fs. I was diagnosed with type II bipolar. Finally after 7 years someone agrees that there is something not so right going on in my head. But it is absolutely incredible what you can do if you just open up your mind, let your guard down and just are. I've created some of my most favorite pieces of art during the time that I have not been sleeping.

This 1st piece is entitled The Two Extremes of Me. It was not supposed to look like this. The entire circle was supposed to be filled with butterflies. But after I drew the 1st 5 I realized that I had drawn them too small and that I would have to draw more butterflies then I wanted; it would look too cluttered. So then what color blue do I use for the sky? What if I use both blues? Oh, that would look cool... Not only is the night side depressed me and the day side manic me, but I realized the butterflies kinda represent a 5 point likert scale. Rate my mood on a 1-5. Goal: maintain a 3, or a pink butterfly. And slightly off topic, what is the white blob on the day side? No one has gotten it yet. No it is not a snowman, casper, or a lamb. Can anyone get it?

This next piece is called bloodshot eyeball. I started it with the specific intention that I was going to draw something that didn't look like anything and see what came out. Interesting that this is what came out on my 2nd week of not sleeping.

The last piece, done around 4:30 in the morning the following week was also supposed to not look like anything at all. I thought, wouldn't it be interesting since I am obviously going to be up for sunrise to do something kind of abstract that looks like sunrise. But well, my visual perception is off and I drew my stripes too small and I had no more sunrisey colors and I didn't want to repeat. So I thought, ok, I'll make the rest grass. But then the grass looked so empty like it was missing something. So I drew a path--a path to nowhere. A path to nowhere at a time when I thought my life was going nowhere. When I thought I had no purpose and I was just kind of taking up space.

I never make new years resolutions. I think they're stupid. But I am going to make one right now. I am going to make it a goal to work on applying my bowling outlook to the rest of my life. I need to open my mind. I need to let go. I need to go with the flow. Because that's when I do my best work. So what if it is going to take me 6 years to graduate? I'll still graduate. So what if I have to take less classes in the spring? It's what's best for me right now. So my gpa is a little low. It will go back up. I will get into grad school. I will be ok. So I can't hit as many pins as my friends. I can still hit pins. I can do this. I can...