ARRRGH... Another One

So I was standing outside at school with my crutches and my cell phone out as I was about to call the cab company back and see where my cab was. It was 9:00 and I just wanted to go home; it was a long day. They used to call when they showed up, in which case I could have waited inside, but lately they haven’t been calling. I’d already missed one cab this morning and I wasn’t about to miss another one, so I was very uncomfortably braving the freezing cold.

A girl comes up to me who is passing out little cards—very obviously Jesus cards. Now I’m all cool, believe whatever you want to believe, but please leave me alone and stop trying to convert me. I’m Jewish and I’m perfectly happy to remain so. Anyway she comes up to me “Do you want one of… well you don’t really have any hands, but do you have a pocket or something?”

I took the d@mn card in the hopes that she would then leave me alone. Thought It’d be easier then the ‘I’m Jewish’ talk.

“Did you hurt your leg or…?”

“No.”

“There’s this story in the bible about some such person I’ve never heard of (must be new testament). Do you read the bible much?”

“No.”

“Well he was… lame and he had dinner with g-d and g-d loved him and whatever. Well it was nice talking to you. I hope you don’t mind.”

“No.” The easiest answer.

“Well I’ll be praying for you. Remember that g-d loves you.” And she walks away…

I don’t think I’ve had anyone who wanted to pray for me in about 9 years. That time I was sitting in the airport, ironically flying to MN to have surgery. He saw my wheelchair so he took it upon himself to go so far as to put his hands on my legs and pray to Jesus that he should fix my legs so that I could walk.

I REALLY just don’t need this right now. Today was a very stressful day, and it’s only the first day of classes. It’s not going to get any better. I have a LONG road ahead of me.

I've had a Tiff Moment

My experiences at the grocery store (click here & here) are nothing like Tiff's (click here & here). No one was talking directly to me. This, however...

Classes start tomorrow. I have Death & Dying at 11am (insert sarcasm YAY!!!!) I had a Drs appt up here on Wednes and the plan was to stay here, but plans change and I just got here at 6:30. Not much time to get ready is it? But now I’m going off on a tangent.

I was lucky when I had to scramble for housing last Aug that I found a room for rent in a house that a) had no stairs to the front door and b) had a room on the first floor that also had a stall shower. The house is owned by a widow with a double mortgage who doesn’t have much income. It is a 2-floor house but someone who lived here before her added a bathroom and 3 bedrooms in the attic. So there are 6 bedrooms and rooms in the basement, which has a separate entrance. She has 2 daughters and then there were 2 other college students here and 3 women in their mid-late 20s. I come to find out tonight that one of the college students moved out while I was gone over winter break and some woman around 40 moved in (weird I know). About 2.5 hours ago I came out of my room to heat up some dinner and she was in the shower. When she got out of the shower she put on her robe and came over to say hi. “Hi I’m (I already forgot her name) and I just wanted to introduce myself. I’m in the blue bedroom and I just wanted to introduce myself since we are going to be floor mates. Have you always been in a wheelchair…?”

“No, I hardly ever use it. I’m just sitting in it right now because it’s really comfortable.” Truth is my only choices of where to sit are my manual chair (not comfortable at all), my bed, or my Jazzy. The wireless here sucks and my best option is the Jazzy. Anyway…

“My husband’s a paraplegic. I’m recently separated. I’ve been married for 18 years. Are you a paraplegic?”

“No.”

“Do you have CP or…”

“Yes.”

My crutches are currently leaning against my bed. “Oh do you walk with those?”

“Yes.” I wasn’t about to get into it that the only day my class schedule warrants using them this semester is Tues and that other then that I walk unaided. What’s the point?

“My husband uses those crutches too. I’ve always had a lot of sympathy for—oh well, you probably don’t consider yourself disabled.”

“Yes I do…” HELLO??? I have 2 wheelchairs, a pair of crutches, and my AFOs out that she could see. I also have a pair of shorter orthotics I wear most days. What am I??? This is not something like ADHD that could arguably go either way.

"Well let me know if you need any help..."

SYMPATHY??? SYMPATHY??? No wonder she’s getting a divorce. Has she learned nothing form living with a paraplegic for 18 years? Come on…

People Aren't Reasonable

I'd like to post a quote from David over at Growing Up with a Disability who wrote a response to Karen's origional post about the Steak 'n Shake incident. I'm posting it because over the summer I wrote a 10pg paper on Ableism in America for my independent study and I really wish I'd been the one to come up with this oh so poignant analogy:

"I've heard some people say that we don't really need the Americans with Disabilities Act because,

C'mon, people are reasonable.
Why get the government in the middle of it?
It will cause more trouble than it's worth.

And, again -

People are reasonable, we can work things out ourselves.

Nope. Not true.

Reasonable people will stop their car when the school bus stops in front of them to let kids off, even if the kids aren't crossing the street. But, we have a law. Why? For the safety of our children, and because, frankly, some people aren't so reasonable when they are in a rush or in a foul mood or just don't feel like stopping."

One of Them

[This is an essay I wrote for 12th grade english class (yes I still have things on my computer that old). The topic was to write about a time when you felt like "the other," To which I raised my hand and asked my teacher "What if you always feel like 'the other'?" You can tell I was pretty depressed when I wrote it]

I am a very astute person. I can pick up on things very easily. I guess I always knew I was different - it was obvious. I also learned very young that as a rule, regular people thought that all disabled people were retarded. This made me very afraid that people might think that I was retarded even though I wasn't. I used to tell myself all the time that I wasn't "one of them," even though I was. I was scared to be around other disabled people because of what other people might think of me. I used to think that, just maybe, people didn't notice - and that they wouldn't notice unless I was with "them".

Then I learned that I am one of "them", and that people noticed all the time. They noticed my leg braces and crutches. They noticed my big blue stroller. They noticed I didn't go to recess. They noticed when I fell. They noticed I was sloppy. Most of all, they noticed I got a lot of extra help.

I used to think that when people first met me they met Cheryl. Now I disagree. When people first meet me they meet Cerebral Palsy. They meet the girl who is late to class. They meet the girl who uses the elevator. They meet the girl that has other people take her notes. They meet the girl with scars on her legs.

I wanted to be "able" even though I knew I couldn't. I tried so hard but failed from the start. I guess I'll always be "one of them".

What I'm Teaching Professionals

The topic for this week’s disability blog carnival is “ what professionals should know about disability.” I am going to twist that around a little bit and write about “what professionals have learned about disability.” I feel like a broken record talking about my workshop so much but it’s my pride and joy. It’s my baby. For those of you who don’t know I spent a year of my life (Nov 06-Nov 07) completely consumed with planning a disability awareness workshop, Disability & the Human Service Worker, as an independent study for the Family Studies and Community Development Department at Towson University. My main goals? To teach future human service workers that people with disabilities are just like everybody else and to give them somewhat of a conceptual framework as to what disability actually is.

If you poll a bunch of family studies majors as to what their future career goals are, a popular answer is working with special needs children. Then you poll a few family studies majors as to what the first thought is that comes to mind when they hear the word disability. You get answers such as the elderly, people who cannot work, young children, and people in wheelchairs. My first thought to that? What the he!! am I then? My department is small. We take classes with the same people over and over. Even if they don’t know my name I would be willing to bet that 90% of family studies students know who I am. I’m hard to miss, being the token gimp and all. I am a 22-year-old college student in a very structured pre-professional university program, who just happens to have CP and bipolar disorder. I am neither elderly nor a young child. I do not work now, but I am a full time student and I volunteer 1-2 days a week. I will of course work after I have my degree. There is no reason why I should not be working. As to the wheelchair thing, I’m on the fence with that one. I happen to have 2 wheelchairs in my possession, but I don’t use them all that often.

My second thought? I would not want any of you working with my (fictitious) disabled child. In fact it scared me half to death to think that people being trained in the human services are left to go out into the real world with no real knowledge of disability whatsoever. My classic example? Say you don’t want to work with the special needs population at all, say you want to work in crisis intervention. Say you work at a battered woman’s shelter and a woman comes in with her son who is autistic. What then?

My workshop was 3 hours long and was divided into 4 parts. In attendance were 120 undergraduate students (mostly family studies majors, but I know there was at least 1 OT major there as well) and 30 professors, other professionals, or invited guests. The first part of the workshop was opening remarks by the dean of the college of liberal arts, the director of disability support services, and then me. Which of these Towson Students has a disability? How about all of them. I don’t like listing people by disability, but at this table we have CP & anxiety, CP & bipolar, dysgraphia & ADD, hearing loss and depression, legally blind as a byproduct of albinism, and ADD. That will teach them that we are just like everybody else.

We then immediately went into a 5-student panel where we talked about our experiences with disability. Our major emphasis was what we want (future) human service workers to know. On the panel we had me and the other person with CP mentioned above, a student with a TBI from a car accident, a student with oral facial digital syndrome, and a student with dyslexia & lupus. There were 3 family studies undergrads, 1 phys ed undergrad, and 1 speech & language pathology grad student. (insert sarcasm here) People with CP can get masters degrees? Geez, you learn something new everyday, don’t you? (end sarcasm) That will teach them that we are just like everyone else.

Then we had Disability Jeopardy. The categories were Name that Disability, Community Resources, Disability Related Professionals, US Law & Disability, and Famous People with Disabilities. The final Jeopardy answer was what is people first language? To level the playing field I hid all the answers within a disability dictionary. There were almost 4X as many definitions as there were Jeopardy questions, so I don’t think I was giving it away.

Lastly we had 3 professionals speak about their career working with people with disabilities. We had the director of Towson Disability Support Services, a therapeutic recreation specialist from Mt Washington Pediatric Hospital, and someone from blind & low vision services of voc rehab, who just happened to be blind. We also had many brochures out from various disability related organizations.

Like any good workshop there was a feedback form at the conclusion. What did you like? What could we improve? Etc etc. Out of 150 people we got 86 feedback forms back. The last question was please list the one fact that most stuck in your mind (it could either be the most shocking, most thought provoking, most interesting, etc.). I wanted to know if I really did teach people what I set out to teach them. Some of the responses are purely statistically based (i.e. almost 1 out of 5 people in the US have a disability) or about the professional panel. Others about the student panel I will list below:

• 14 people noted that everyone has his/her own unique story
• 3 people commented on how disability affects a whole family
• 6 people commented on how a lot of disabilities are invisible
• 7 people commented on how people with disabilities want to be as independent as possible and don’t actually want help (most of the time)
• 2 people noted that we should treat people with disabilities just like everybody else
• 1 person commented on the fact that I made a point of saying that disability means that we do things differently, not that we can’t do most things
• 1 person commented on the fact that we would rather people came up to us and asked us questions instead of just staring at us

So did I give future human service workers a conceptual framework of what disability is and teach them that we are just like everybody else? I think I did. Teaching 120 students was a good start. I feel like I am making a good dent towards eradicating ableism, but I also know that this is only the beginning. I am a woman who has just embarked on a mission. Come talk to me in 10 years. Will I have taught this to 1200 students? 12000 students? Aside from this particular workshop I have also spoken to established professionals. Will I have reached more of them? Will I have reached the parents of the children I will have worked with? How will this affect the world? How will this affect us? Well, more understanding should greatly level the playing field and reduce the frustration that is felt from doing mundane ordinary things like going to have a mammogram for example. With a more level playing field and less frustration we will have a greater worth in society as well as more time and energy to reach out to even more and more people…

Oh the Irony

Now that I want to stay up, I'm having trouble staying up. Maybe blogging will help?

My mom does youth groups for a living. When the high schoolers do overnights in the shul she pays me to stay up all night so she doesn't have to. I don't mind it, I'm young and it's easy money that I REALLY need. I'm a poor starving student. How hard could it be this time I figured? After weeks of not being able to sleep this was supposed to be a piece of cake. I even purposefully took my antidepressant late so it would keep me wired. I took my first one around 3:00pm and my second at 8:30pm. Combined with my moodstabilizer I've been completely wired lately. I expected to be good til about 4:00am. I became a zombie around 2:00am. It's 3:30am and I'm blogging in the office keeping an ear out with the door open because none of the 20+ kids are asleep. I learned that moodstabilizer + antidepresent is a great combo for an all nighter, but just one or the other does not do the trick. I took the moodstabilizer at 10:30 yesterday morning. I guess it had worn off before 2:00am. All of the high schoolers are supposed to be gone by 9:30 but then the middle schoolers are comming from 10:30 to 3:00 to watch both High School Musical & High School Musical 2, and I volunteered to stay. It won't be bad I thought. I stayed up for 33ish hours straight once a week when my sleep schedule was its funkiest because it was easier to not bother to go to sleep when I had to be somewhere in the morning. Today is going to be interesting. But I really want to see High School Musical. I work with kids and I still haven't seen it. I've been feeling so out of the loop.

Another Experiance at the Grocery Store

Tiff and I seem to be having all the fun lately. My mom lives a block, maybe a block and a half from the grocery store. For someone who will never drive, the thought that I don't have to pay for a cab every time I have a craving on a whim, could almost give me an orgasm. Not the point of this post, but after 2+ years of her living here the novilty still has not worn off.

So this afternoon I walked over to drop off/pick up a refill of my all important new mood stabilizers. As I was leaving I saw a woman and her son, who is about 4ish comming in. The woman did not see me because she was paying attention to her son who was going for the manual chair/grocery cart combo--probably the greatest thing to a 4 year old. The mom grabs his hand and says "You don't need this. It's for handicapped people." Her son then says "What are handicapped people?" What did the mother say? After a brief pause she says "people who have handicaps." I think we made eye contact about then, but did not exchange words. That really answers the question absolutely perfectly, don't ya think? Handicapped people are people who have handicaps. No duh. I'm still working on how to talk to a 4 year old on their level, but how about "You don't need this, it's for people who have a hard time walking." I bet that would have been enough of an answer and there would not have been a follow up question. Or as a response to "What are handicapped people?" Maybe "people who have handicaps are people who do things differently because they might not see or walk or learn just like everyone else. This cart is here to help someone who has a hard time walking go grocery shopping." Is that too wordy for a 4 year old?

Saying "It's for people who have handicaps" is very all encompassing. Did I miss the memo that said all disabled citizens cannot walk? Let's not even talk about dyslexia or depression or any other invisable disability, because of course those things don't really exist. Let's go with something easier. How about a blind guy with a seeing eye dog? He's very ovbiously disabled and he can walk just fine. This woman is passing onto her son a very narrow schema of what disability is. That is, if he could even comprehend her response. Now, 8 hrs later, I wish I had said something as we passed on the sidewalk. Not something smart-assed but something beneficial and educational. I'm not quick enough on my feet though (no pun intended). And actually I'm still not sure what the right thing to say would have been. I've only ever been educational when I've had a previous invitation to do so. I'm new at this. Ideas?

I Wish There was Some Way to Impress Upon Kids who Have to go Through Absolutely Horrible Torturous Therapy...

that I now choose to do absolutely horrible torturous things to myself by my own free will. That really, when they are 20 or 22 or whatever, they will be oh so incredibly thankful for all of that suffering. There isn't anything anyone could have ever said to me whether it had been a physician (I think I am in the minority here in that I have mostly had positive experiences with doctors. I've very rarely been treated like an "object") or some random 20 or 22 year old college student who had CP. You'd think if "your own kind" tells you things that it might sink in. Nope. Not when it comes to absolutely horrible torturous therapy. It would not have worked, I guarantee it. I can see myself at 10. "So what. So I am going to be thankful when I am older. I don't care. I don't want to do this. I don't want to do this!" There is one really bad thing that comes out of tons of therapy. I spent so much time alone with adults, I never really learned how to interact with my peers. But the rest I think is good, for the most part.

There was one thing that I once said to a 10 y.o. kid who I think was an incomplete quad (I'm not allowed to know, HIPPA) that I think actually got through to him. I was playing UNO with him when it was time for him to go to PT. He kept looking at me like I was supposed to stop the CNA from getting him out of bed and into his wheelchair. So I said "What are you looking at me for? I'm not going to stop her. When I was younger I had to go to physical therapy, speech therapy, and occupational therapy, and I didn't want to go. Nobody cared. Nobody's gonna care that you don't want to go either." That is what a 10 y.o. needs to hear. I'm sorry it sucks, but too bad. It doesn't just suck for you, it sucks for everyone else too. Not, you'll be glad you did it when you're older.

Why am I thinking of this now? Well I can think of 2 things that utterly shock me. The first is that as late as high school my PT would put me on the treadmill backwards going 0.5mph. I b!tched and moaned. She said too bad, it's good for your glutes. I go to the gym semiregularly now and I like walking backward on the treadmill. It's not just good for my glutes. Since I am going at such a slow pace I can concentrate on kicking my abs into action which in turn both decreases my waddle and straightens me out. I LOVE that I stand so much straighter now. I spent 22 years hunched over and only 6 months straightened out and I can't believe how crappy I felt when I got depressed and stopped going to they gym. OMG how I love being straightened out. It feels SO GOOD. Also, now that I can walk backwards at 1.0mph I really have to hold on. I kind of push down like if I was using parallel bars and it really works out my lateral delts, which is good because I haven't really concentrated on that area.

For Chanukah my mom gave me horseback riding lessons. That is my most favorite thing to do in the whole wide world. I rode from when I was 3 until I was 16 and the divorce lawyer got my horseback riding money. It's been 6 years since I've really ridden. I suck. I've almost completely lost my form. I'm leaning to the right so much that I feel almost like I might slide off one day. It's a complicated mess of CP reasons why I'm leaning so much, but I used to not really lean. It took years of being tortured by my trainer to get me to not lean all that much.

[This picture of me was taken in 1988, when I was 3. I scanned it in for a school project & I think I look cute, so I added it.]

This new trainer is either going easy on me or is not as good. I was just getting in the shower when a light bulb went off. "I know what to do to stop leaning! I need to ride without stirrups." Oh how I HATED riding without stirrups. I spent at least 3 months straight spending probably half an hour riding without stirrups 1-2X a week. Oh how I b!tched and moaned. When you are riding without stirrups and lean as much as I lean, you don't just feel like you are going to fall off -- you do fall off. If you don't want to fall off, you stop leaning so much.

When my trainer wanted to be really mean she would put my horse on a lunge line (kind of like a really long leash that attaches to the saddle) so I didn't have to worry about my horse running me straight into the wall, take away my stirrups, make me drop the reins, make my horse trot, and then say "Put your arms out, and pretend like you are juggling. Juggling helps you learn how to sit up straighter. I wouldn't put my arms out. "I am going to fall off," I whined. "You are not going to fall off," I got. "I don't care how long I have to stand here, I'm not helping you get off until you do it and you can't get off by yourself."

Now I am going to go to my next lesson and tell my new trainer that for the last 10 mins I want her to help me get my feet out of the stirrups. I am flabbergasted. I even want to juggle too. One step at a time though.

I feel better both physically and mentally doing these things. I know that I need to "torture" myself now more then ever, or I won't be able to survive my life. I don't mind torturing myself. Surviving my life is worth the sacrifice. How do you tell that to a kid though? I have peers who have CP who are just fed up with everything. They've had enough of everything so they just flat out quit and sit on their butt all day. It's a shame.

On the One Hand I'm a Full Grown Mostly Functioning Adult...

On the other hand, I'm just like a baby.

On Thursday I was watching Grey's Anatomy with my friends. Then I watched the 8pm rerun last night because I was bored (can you say pathetic?). If you Tivoed it, stop reading right now, and come back here after you've seen it. I'm about to ruin it. Dr. Bailey's baby wandered into her home office while her husband was in the other room and she was at work. He tried to pull himself up using the bookshelf. Instead it toppled over, and the bookshelf + all of the books fell on top of him. It's pretty set that he is going to live (if the writer's strike ever ends that is) but he had some pretty serious injuries. While he was getting his MRI one of them said to the other "well if you'd just bolted the bookshelf to the wall..."

My mom and I moved from our house into a kick ass condo a little over two years ago. Not that I'm there all that much, school is an hour or so away, but she's a nice mom and she's tried to make it "Cheryl friendly." We live in a 4-floor walk up, so we live on the first floor. We made sure we got a model with a stall shower because I cannot lift either leg high enough to get into a tub. She painted most of the rooms with non-glossy paint so it would be easier to wipe my finger prints off the wall (not that I need to hold onto the wall, it's more a force of habit). You get the idea. All of the rooms in the condo are weird shapes so we got rid of 90% of our furniture and started over. I just happened to be home one time when the interior decorator was here. It just happened to be the day the bookshelves in my room were being picked out. I really like my bookshelves. When I remember where I put my digital camera, I'll take a picture of them. So she shows them to my mom and me online and the first thing out of my mouth was "are they going to fall on me?" You see, I hold onto furniture sometimes in addition to holding onto walls. That and when I'm about to fall my arms go out and instinctively grab on to the closest thing that is likely to stop me. I am not going to stop and think "I can't grab onto the bookshelf because if I do it is going to fall on me." No, I am going to grab onto the bookshelf. I go to the hospital to work or to have planned CP related surgeries. I do not go into the hospital through the ER.

Of course she assures me that they are very stable and of course it turns out that they are not. I don't think she had ever actually seen them in person. The handyman put them together in the kitchen and then carried them into my room. The first thing I did was test them before we put stuff on them. They wobbled. Now what are we going to do? He immediately went to the hardware store and brought back something to bolt them to the wall. He did such a great job that we can't even see where the brackets are. Now someone twice my size could fall on them and they wouldn't move and inch.

Fast forward 2 years or so. My mom finally decided to do my walk in closet so it wasn't a big cavernous hole. She decided it wasn't worth paying closet guys because, well, I'm not there very much and if she's ever going to give someone a tour of the condo, why would she ever show them my closet? So she buys a 30 something dollar thing that has poles, shelves, and even a built in shoe thing. I look at it in the box. "It's going to fall on me." Her engineer/physicist live in boyfriend spent 3 days putting it together about 2 weeks ago (I can't imagine how long it would take someone without that background to put it together). The shelves and things are adjustable heights so he made sure short me could actually reach everything. He finished and I went into the closet to test this thing. "It's defiantly going to fall on me." Whatever bolted the bookshelves to the wall won't work for this. So he figures out what he needs to use and has to go to 2 hardware stores to find it. It's bolted to the wall. I tested it. It's not so pretty looking, but it does the job. It didn't move.

Fast forward again to 2 days ago. People on TV are arguing about bolting a bookshelf to the wall in baby proofing their house. Baby vs 20 year old the first time and 22 year old the second time. Hmmm... I haven't quite figured out the words for how this makes me feel, but it bothers me. I was really uncomfortable watching it. I guess it sort of makes me feel like an insufficient grown-up person; somewhat childlike. Does that make sense? We have to "Cheryl proof" our house like people baby proof their house. But I'm very obviously not a baby...

Why Aren't There Child Life Specialists for Adults?

If you are reading this blog and are under 30 (or are over 30 and got lucky) or are the parent of a child with a disability that requires hospitalizations you have hopefully met a child life specialist or 2. Maybe you are a child life specialist. As a future child life specialist, my job is to help children who are in the hospital or who may have a lot of outpatient medical visits to deal with their psychosocial needs surrounding their medical situation in a developmentally appropriate way. I know back in the dark ages of medicine, and still even sometimes now, that the psychosocial needs of children were sloughed off as insignificant. Thankfully now for the most part the medical community has recognized how much hospital stays or repeated procedures can affect a child’s development. I don’t have a specific reference, but I do know that the American Academy of Pediatrics has recognized that child life specialists are an integral part of a health care team and has recommended that there be at least one in every hospital (that will happen one day I hope). But what about adults? There are plenty of adults who have complex medical needs. Their number will keep increasing as medical technology increases and baby boomers age. The framework of the American medical system is the same framework whether the patient receiving care is 3 or 83. Frequent interaction with medical personnel can still affect an adult’s psychological well being.

I have thought about this issue previously and am glad that I finally have a medium in which to share my ideas. My mother was diagnosed with leukemia back in 2000. She is still not in remission, but at least she’s alive, so I guess that’s a good sign. Over the last 7+ years she has dealt with this remarkably, until March when she entered a clinical trial at Johns Hopkins. When she signed the consent form it was like she signed her life over to them. They seem to think that it is totally ok for them to make appointments for her at the last minute or cancel appointments at the last minute (less then 30hrs notice). My mom has a job and she has friends and a significant other who she makes plans with. She tries very hard to make a life for herself even on all the drugs they have her on. What if she has something to do? Also, Hopkins always tells her to bring someone to drive her home (we live over an hour away). Who says she can find someone on only 30hrs notice? One doctor even threatened to kick her out of the trial because he thought that she was asking too many questions. If I kept going, the examples I have may reach 50 pages. They flat out treat her like a lab rat and see nothing wrong with their behavior. What if she were to continuously cancel appointments last minute? Would they kick her out of the trial? It happens that I go to school 25 minutes from Hopkins. I have a friend also going into child life who volunteered at Hopkins Children’s. Volunteers get their parking paid for. Lab rats do not.

My mom had yet another incident with Hopkins today and I’m glad I was around to validate her feelings. No one else ever does. They just tell her to calm down. Isn’t medicine dehumanizing she said? Yes it is, I replied. That is why I do what I do. They don’t teach this stuff in medical school. A lot of what child life specialists do is doctor and nurse education. My mom also has issues with having a lack of control. With children often doing something as little as asking them which band aid they want or which arm they want to have their shot in can give them back a sense of control. My mom is 50, I don't know what to do to give her control.

My mom was so upset (rightfully so) that she began to throw stuff. She needed an outlet for her anger. I immediately thought of 4 different things that I could try with a kid in this situation. Again, my mom is 50; none of those options seemed appropriate. The first was to rip up a phonebook (I personally have done this and find it rather cathartic). The second was to pound clay or to recreate her cancer drugs out of clay and then smash them. The third was to make a target, wet gauze so as to make it like a spit wad and throw it at the target. The last idea is this thing that involves paint and marbles. Of course you wouldn’t call the person a child life specialist, but why isn’t there someone who works in a hospital with adults to help them work through their issues and to educate doctors and nurses?

4 years ago my aunt was found in a coma. She was in the hospital for 8 weeks (most of that time not in a coma). Do you know how boring that is? The hospital was one of those that has a children’s hospital within a hospital. I’m sure there’s tons of stuff to do over there. But there wasn’t even one VCR on my aunt’s unit.

I have sat in the waiting room at Hopkins with my mom for an hour between appointments. In pediatric waiting rooms there are toys to help pass the time and take your mind off why you are there. Again, what about adults? Would there be harm in having decks of cards, suduko books, or maybe chessboards along with the magazines? If it were me, I’d even like to color. What about free hot chocolate/ coffee/ tea? I surely think that would increase patient satisfaction. A child life specialist’s job is sometimes just to listen. Having someone available to listen while you wait could be very beneficial.

This is another post that I cannot end with a neat and tidy conclusion. I wish there was an answer to this problem but there is not one.

Update on My DORS Meeting

For those of you who are following along:

So I went to my DORS meeting and I guess I seemed to jog her memory yesterday because when I went in she said it seemed like I was doing much better then before. They will still pay my tuition because I brought in the letter from my shrink stating why I droped my classes, but in order to do so they need a letter from my psychiatrist stating that she recommends that I take a reduced course load. For some reason they won't pay for people to go part time unless you have good reason. I don't understand. All they do all day is deal with people with disabilities. Shouldn't they be able to substantiate going part time just by looking at someone? The other thing is that they won't submit my paperwork to financial aid until I drop the classes I'm holding, because it screws things up if they get billed for extra $. If I hold the classes as long as I wanted to I won't have $ to buy my books, probably until the 3rd week of school. This means that I have to drop those classes TODAY. Going to call my adviser and see if she thinks if I were to change my mind I would be able to get these classes back. They're all in my department and my department head likes me. Don't think there's a problem, but it's always good to double check.

My Entry for Tomorrow's Disability Blog Carnival: Inconsistancies in the Media

I want to introduce myself to all the new readers who have found my blog through the disability blog carnival. I’m Cheryl, I’m 22, I live in Maryland and I go to Towson University. If you’d like to know more about me, click “about” over on the right. I hope that after you’re done reading this post you will continue to browse the rest of the posts that I have here. I know that most of them are a bit long, but if you have the time to get through them I think they are pretty insightful.

For my contribution to the blog carnival I’ve decided to write about the inconsistencies I’ve found in the way that the media covers people with disabilities/ disability issues. More specifically, I am going to reference three articles from my college newspaper, the Towerlight, in the order I found out about them.

I don’t usually read the Towerlight, but late in September as I was leaving the gym I happened to glance down at the newsrack and notice that they had decided to do a special “diversity” issue. The cover of the issue features a full color border of faces of students of different races. It was just faces, so there was nobody in a wheelchair or on crutches or anything. Including myself I can think of 9 current students that they could have contacted to get a photo of, and I am sure there are more students who I don’t know. The picture on the left I got from the Towerlight website. It isn’t an exact recreation of what appeared in print, but It’s pretty close. I didn’t even have to open the issue for my blood to boil. I knew what the issue was really about. But I had to open it just to be sure. There was not one single article about religion, about students with disabilities, or about people with alternative sexual preferences. Don’t get me wrong, I’m totally fine with the Towerlight printing a special issue that focuses on race, but please call it what it really is. I wrote a letter to the editor that was printed in the following issue, and had several able-bodied friends thank me for doing so.

Two weeks later the cover of the towerlight featured an amazing article on artist Dan Keplinger’s gallery opening. I again wrote a letter that was printed in the paper, as I decided that if I was going to complain I also had to give thanks where thanks was due. Dan has severe CP and paints with a paintbrush attached to his forehead. The article somehow managed to portray him as just a regular (albeit famous) guy. It starts by talking about his paintings, briefly mentions his CP, of course goes on to mention his Oscar winning movie, then goes back to focusing on Dan’s paintings and who he is as a person. In the article Dan’s CP was very nicely presented as just one factor of what makes Dan, Dan.

A few days later I went on the Towerlight website and typed “Keplinger” into the search box, as I wanted to send the article to someone. Dan’s been at Towson for almost 10 years I think. In December when he got his MFA it was his 3rd degree from Towson. So of course I found that the Towerlight had written more then just one article about him. I found a 2004 article that made me livid. Here is the first sentence of the third paragraph: “Beginning his education in specialized programs and schools for children with cerebral palsy, Keplinger spent the first few years of his life adjusting to his disease.” The fifth paragraph states: “Keplinger refuses to allow his disease to be a crutch, and his self-given nickname, King Gimp, demonstrates his humor.” As I’m sure all of you know, a disease can be a disability, but not all disabilities are disease. CP IS NOT A DISEASE. I know that different people wrote all of these articles, but I cannot understand the differences in the use of language. At least I used this as a learning opportunity. Not long after, I guest lectured in a class where I had the students look at the three articles and then I discussed them.

When I found out that this was the topic of the blog carnival I started thinking about how this inconsistency flows over into other forms of media, like movies. There are movies that I own that are WONDERFUL and then there are other movies that are absolutely horrid and really piss me off. Then I started thinking about the inconsistencies in actual people with disabilities. There are people (the people reading this blog for instance) who are capable of really making a difference in the way things progress. We are how good articles, good movies, etc get produced because we know how to get our voices heard and how to get people to listen. Then there are others who contribute to the detrimental media portrayals These are people who either do not believe that their voices can be heard or people who have been conditioned (thanks ableism) to really truly believe that this is the way that we should be portrayed. Somehow I have a feeling that this is the larger group. If we could just somehow figure out how to recruit these people we would have more troops to mobilize and things would continue moving forward like they are but at a much faster pace.

I Hope I Didn't Really Screw Things Up...

I called my DORS (voc rehab) counselor because I need to go in and sign my paperwork so that they will pay next semester's tuition. With both of my old DORS counselors if I don't call, they would make an appointment for me-- always at a time when I couldn't be there of course. I have a feeling that the new one forgot all about me. This one is youngish and new to DORS, I just started with her in August. When I first met her I thought finally, finally they gave me someone with a brain. Of course that was too good to be true. I had an incidence back in Oct. with my field placement for class, where I both emailed her and called my old OT. The issue had a very simple solution which the OT came up with in less then 5 mins. DORS counselor told me that there was nothing that could be done. But that's a whole other story. Anyway, I called her 2hrs ago to make that appointment and she just called me back and says "you need to bring in a copy of your grades from last semester..." at which point I cut her off and said "I didn't get any." Mind you somewhere in my sent email folder I have a copy of the email I sent her where I told her I took a medical withdrawl and that I found out I'm bipolar. For last semester I have 3 withdraws and an incomplete for my workshop, which I did as an independent study (it will very soon become an A). I understand she has a few hundred clients probably, but shouldn't she pull out my file before she calls me back? So she says, "Well, when you get them..." at which point I cut her off again. "No, I'm not getting any. I withdrew." Like HELLO. Am I asking too much? She even answered that email. Never did she say anything about it affecting my status with them, so I took that to mean everything was still A-OK. Now I feel like she's so clueless that maybe I'm not getting money from them anymore. That of course is a problem. I guess I'll find out tomorrow morning when I go there. All she then said on the phone was "You need to bring proof of that and your schedule for next semester." My schedule for next semester isn't finalized. I'm signed up for more credits then I know I'm taking, just to hold my spots. I have a feeling it's going to be interesting tomorrow.

If Not Now, When?

What I’ve learned about myself from doing my disability awareness workshop: First and foremost, I have two very strong personal creeds, which have guided most everything I’ve done this past year. The first is “don’t reinvent the wheel.” If someone’s done something really great before, it’s totally ok to steal their ideas. Not just ok, but I wholeheartedly encourage such behavior. I’m not talking about taking credit for things that break intellectual property laws; in fact, I’m not even talking about taking credit for any type of ideas. I will be the first to admit where I got something from. I just feel like why waste perfectly good energy coming up with things from thin air when sometimes things are basically served to you on a silver platter.

For my second personal creed, I’m going to quote Rabbi Hillel, who lived in the first century CE. “If I am not for myself who will be for me? If I am only for myself who am I? If not now when?” (FYI, Jews always answer questions with questions. It’s what we do.) I first heard this quote when I was 9 years old. Someone wrote a whole song around it that I learned at camp. I’ve never really thought about what it meant before, but I think it fits me perfectly. I think what it means is that you need to remember to take care of yourself and be true to yourself while always looking out for the needs of others, because basically, if you don’t do it nobody’s going to come along and do it for you. I really haven’t been the greatest at adopting this ideal into my life as a whole, but I feel like I’ve managed to do so in at least one area, and I guess that’s a start. I emailed my department chair because I saw a need; a need that no one else was going to fill. So I blindly jumped right in and did something about it.

I’ve been spending hours lately, since I started this blog, doing deep philosophical thinking about different aspects of my life. Really picking each one apart until I come to a definitive answer on whatever it is. Is it the right answer? I have no idea. But at least I feel like I’m accomplishing a whole lot more then if I were to spend those same hours watching TV. One of the thoughts that has popped into my head recently is that I am now the token gimp of the family studies department. I can’t very well say that I am the token gimp of Towson University. I feel like the amount of physically disabled students has increased even in the short time that I’ve been there, so of course I’m not the only one. And anyway, that honor has to go to Dan Keplinger (he is King Gimp after all). But if you factor in the fact that 6% of Towson students (aprox 1100 out of 19000) have identified themselves to disability support services and that most of those students have learning disabilities, and then you factor in the fact that according to a Towerlight article printed last spring there are only 175 family studies majors, you end up with just me. I could run off a fair list of family studies majors that have either learning or medical disabilities but I haven’t seen another person with a disability as overt as mine. Even before the slightest of thoughts about a workshop came into my mind I was the one that raised my hand in Trends in Family Life class and pointed out that the average person on supplemental security income (SSI) gets about twice the amount of money per month that a single mother with kids gets on welfare. Who else would need to know that? I am going to be on SSI in the foreseeable future.

Do I mind being the token gimp of the family studies department? Absolutely not. That’s a far cry from five years ago when I was ordering my powerchair—“No one’s going to be friends with me or even talk to me because I have a wheelchair.” The wheelchair and the crutches and not driving and things still bother me, but a lot less since I’ve gotten philosophical. If I didn’t have a wheelchair or crutches or if I could drive, I wouldn’t be the token gimp. Being the token gimp is important. It fills a need. I'm at an institution of higher learning, and I have single handedly provided students several opportunities to employ high-level critical thinking skills both directly and indirectly. Maybe someone I’ve been in a class with, who would have seen me in a restaurant (with food on my shirt of course) and automatically thought I was retarded has had a schematic shift, and is now many times less likely to make such erroneous assumptions again. Not that I’ll ever know, but I can hope.

Let's Talk About SEX Baby!

Like any normal, healthy, well adjusted 22 year old I spend a fair amount of time thinking about sex and talking about sex with my friends. Frankly, I would be worried if I wasn't. This past July I got an IM from this guy I used to know. I went to camp with him for 1 summer and the last time I've spoken to him was at my 16th birthday party. I don't think that he knows I have CP, but I'm willing to bet he's spent some time in my wheelchair. My wheelchair was at camp for the purpose of off camp field trips, but other then that it had a nice home behind the rock climbing wall. For the first few weeks of camp no one knew it was there, but one day I finally needed it and for some reason everyone immediately thought it was the coolest thing in the world. Most nights people would take it out from behind the rock climbing wall and take rides in it. Most of the 10th and 11th graders as well as our associated staff that summer took multiple rides in my chair.

So the guy IMs me and very quickly into the conversation says "I don't mean to sound rude or f*cked up or anything, but can you have sex?" To which I replied "You're not rude, yes I can have sex, but I choose not to." My friends were more outraged about it then I was. The way I feel, if people have questions I'd rather they just be upfront and ask.

I've never doubted that I could have sex. I have the same parts "down there" as everyone else. They look the same as everyone else's and they work the same as everyone else's. Mostly I just wondered about who I was going to have sex with. I'm not the kind of person who is going to go out and have sex for the sake of having sex. #1 getting an STI is not my idea of fun and #2 I want it to mean something. In order for sex to mean something that means that I'd have to be in a relationship with someone. But who would want to be in a relationship with me? I can't drive so every time we went on a date he'd have to pick me up. And if we ever went on the kind of date where I needed my wheelchair, he'd have to put it in the trunk for me. I can't lift it. He'd have to do everything, and who'd want to do that? Now of course that's not true. I'm not completely helpless, but it sure felt like it.

Then my thoughts focused on the practicality of having sex. I have inconvenient spasticity issues. The tightest muscles in my entire body are my inner thigh muscles. So the only thing I could think of was how painful sex would be for me. But I just decided I wasn't planning to have sex any time soon (back to that boyfriend issue) so I would cross that bridge when I came to it.

For Chanukah I got a $30 gift card to borders from my mom's cousin. I was waiting for that to get 2 books that I've really wanted. The first was The Rider's Fitness Program and the second was The Ultimate Guide to Sex and Disability, which was FINALLY rereleased a little over a month ago. They came in the mail from Amazon on Friday. I've read a few chapters of The Ultimate Guide to Sex and honestly, the book hasn't told me anything about sex that I haven't already heard. I took Sexuality in a Diverse Society. I didn't have a choice, unless I don't want to graduate. But The Ultimate Guide to Sex does have one very important thing in it that my sex class textbook doesn't have--real stories about real people with disabilities who have real sex lives. I don't have the book with me, but I believe my sex class textbook has two paragraphs about CP in the chapter that talks about disorders that lead to sexual dysfunction. How's that for an ego boost? The Ultimate Guide to Sex talks about people with disabilities who have lesbian sex, who have threesomes, I could go on, but you get the idea. And the authors didn't just interview one person for the book, they interviewed a lot of people. Defiantly a confidence booster. If people wanted to have sex with all these people then someone's bound to want to have sex with me eventually.

Usually when I go somewhere where there are lots of cute single Jewish college boys I find a chair against the wall or something and hope that no one looks at me or talks to me (other then the people I went with of course). Maybe next time I'll actually talk to someone. Not that I've really done much the last 3 days, unless grocery shopping counts as something that is, but I've been feeling very sexy. In reality I'm not as bad of a catch as I've spent years thinking that I am. I'm smart, I work out frequently, I know where I want to be in my life (even if I'm far from there right now), I've been told that I'm witty, and as I've recently started dressing better and putting on makeup more often, I've decided I'm really good looking. So I have a waddle. It probably attracts attention to my butt. That could work for me...

Medications

I have written previously about my recent sleep problems. They haven't gotten any better and I've decided that I just do not want to be doing what I've been doing--sleeping pills. I agreed to try sleeping pills because I have a 9am class next semester and right now I will do anything that makes me be able to get to it. This is the second time I am taking this class and there is not going to be a third time. There just isn't. So if taking sleeping pills means that I will be able to get up at 7am then I'll take sleeping pills. But I haven't been completely comfortable with the idea of taking sleeping pills. Why? CP is almost synonymous with fatigue. It flat out takes me more energy to do anything, which means that I am almost never not tired. I am already on one medication that has the side effect of keeping me more awake; it isn't sitting well with me to then take one to put me to sleep. I feel like I'm being controlled by my medications. They dictate when I am going to be awake and when I am going to be asleep instead of me dictating when I am going to be awake and when I am going to be asleep. I need to have control over what I do and do not do, not some inanimate man made object. Besides, they're not solving the problem anyway. The last 2 days I've had my alarm set at 7am to practice and both days I slept right through it. I'm completely dead to the world. That isn't seeming to fit with a 9am class. I tried taking half the dose, which worked for a few days, but then that wasn't enough, and one is obviously too much. So now what do I do?

I have 2 choices. One is to take nothing and be up the entire night. I have a feeling I'll get tired around 6am. The other is to take some valium. I have valium for when my back acts up, and it knocks me out but not enough that I will not hear my alarm. I'm not going to say that I have never used valium as a sleeping pill before. I'm only human after all. The way I figure it, 30 pills lasts me about 14 months, so if once in a blue moon I take one to put me to sleep, who's going to know? That was a fine idea until I came to the absolute decision that yes, medication is absolutely ruling my life, but that no, I didn't have to let it. So while valium is certainly a better option than seriquil, I have decided that I am going to stay up all night. I have decided that I am going to go to bed every night (or morning) at whatever time I finally feel tired, but that my alarm is going to stay set at 7am and I am going to use everything I've got to drag my butt out of bed and directly to the gym. After a few days of very little sleep I've got to be able to go to bed at a reasonable hour.

I've been doing a lot of free thinking since I've started this blog, trying to keep my brain open to whatever the next thought is that happens to wander in. I was thinking about the idea of having medications control my life and I came upon something I think is very profound. I decided that medications are an aide in the same way that my orthotics are. They are an aide that I use to allow myself to be able to reach my greatest potential. If I didn't have orthotics my feet would hurt all the time and I wouldn't be able to go places and do things because I would be so uncomfortable. So you see I'm not opposed to medications in their entirety, just the ones that do not enhance my life. Sleeping pills do not, so they are out.

What about the medications that I do find beneficial? I seem to go in phases with those. Sometimes I take them and sometimes I don't, kind of on a whim. If they are an aide that is supposed to enhance my quality of life, wouldn't I always take them? I never leave my house without my orthotics in my shoes. I would never dream of it. I wear sneakers with formal wear because that's what they fit in. I don't like doing that, but I have to. It's just simply a fact of my life. Why then have I not made medication a "fact of my life?" Logically speaking I should be more likely to take pills then to wear orthotics. I flat out asked for the pills. I never asked for braces--I got my first pair when I was a baby. My orthotics make my feet sweaty all the time. I haven't had any negative side effects from the medications I'm on now. The whole thing just flat out doesn't make any sense.

I like to say that I don't need things. I don't need left handed desks, I said in 9th grade (even though I was having painful spasticity related issues in my left arm). I got broken down and my parents made my school order left handed desks. My arm hurt less. I don’t need to bring my old crutches up to school. I didn’t have 7 surgeries to have to use crutches I said. Well of course there were plenty of times last semester where the construction made the on campus paratransit take too long and I just didn’t have the time to wait for it. I needed my crutches. I am most likely going to need to use a wheelchair when I get my first job in a hospital. I don’t have the stamina to spend 30ish hours a week on my feet. I prefer to ignore this fact. Why is it always so wrong to use these things but not wrong at all to have orthotics in my shoes? Nobody gives a crap if I take medication. All of my closest friends take medication for something. It doesn’t make me different. On the contrary it makes me fit in more.

How do orthotics enhance my life in an acceptable way, but these things enhance my life in an unacceptable way? Why do I push so hard against having to use something, anything (except orthotics of course)? I wasn’t always so willing to wear orthotics. How did I get won over? Orthotics make me feel good. Left-handed desks and crutches and wheelchairs do not make me feel good. They have good points and bad points. They can decrease discomfort and make me more self-sufficient and independent, but they can also cause discomfort and make me more dependent. I can’t carry anything when I’m using crutches, for example, and that bugs the crap out of me. I’m a glass half empty kind of gal. I tend to fixate on what I don’t like about using something. I can’t think of any bad things about wearing orthotics. I don’t notice the sweat anymore and even if I didn’t wear them, I would still have trouble buying dress shoes. I have wide feet. Pills make me feel good too, that’s what I’m on them for after all. I turn assignments in on time when I take my pills. For a while I thought maybe I didn’t like feeling good. I’ve spent so many years feeling bad—I’m really used to feeling bad. No, I do like feeling good. I turn assignments in on time when I feel good. But you know what? Looking at the last time I felt good, I was pretty glass half full. I would still hate using crutches but I would tell myself why using crutches was OK.

Feeling good takes too much energy. Energy that I don’t have because I have CP. Turning assignments in on time means that I have to do assignments. Being ok with using crutches means that I am going to use crutches, which means that I am going to walk far often. I can’t do feeling good very long. Feeling good is too exhausting. Not doing assignments and not walking far is very obviously not exhausting. Not exhausting is just so much easier to do then exhausting. Yes I’m still tired when I don’t feel good, but tired is not absolutely utterly exhausted. So I don’t take my pills because taking them is just too much for me. Yes, that makes sense. But if (other then being exhausted) I like feeling good better then feeling bad, what am I supposed to do?

10 Questions

It's 11:45 and I'm laying in bed. I just took a sleeping pill and my brain needs something to occupy it while I'm waiting for it to work, so I thought I would post another entry. I have a rant to post tomorrow, but I need something that doesn't take too much thought. Here are some disability related questions & answers:

1a. If I could take a pill tomorrow and not have CP anymore, would I do it?

First of all, I couldn't in reality because I've had too many muscles/tendons/etc moved and you can't move them back. Putting that aside, I still wouldn't do it. I've spent 22 years with CP and 0 years without CP. It's all I know and I don't think I would know what to do with myself if I suddenly didn't have CP.

1b. If I could wake up tomorrow and not be bipolar...

I would be ecstatic. I would have a GPA somewhere around 3.5 and I wouldn't feel like people have to "deal with me" because I would act 22 all the time instead of on somewhat rare occasions.

2a. What is the worst part about having a disability?

Not being able to drive.

2b. What is the best part about having a disability?

Not having to wait on long lines; being at least a bit more grounded--who's wearing what isn't the most important thing in the world.

3a. What do I wish I could do?

Well, besides drive, Have the confidence to go on a date... guys are attracted to confident girls after all.

3b. What have I done that I never thought I could do?

Walked up "killer hill" at my camp, ran a mile in under 15 mins, finally made true friends, planed a workshop for 150 people, I'm sure there are more.

4. What could I do without?

The problems with my back. I don't know anyone with CP who doesn't have back problems.

5a. What do I want able bodied people to know?

A lot of times if you make something "easier" for me, it will also make things easier for everybody else as well. An example is curb cuts, they are also convenient for bikers and parents with babies in strollers.

5b. What do I want human service providers (doctors, social workers, etc.) to know?

They need to listen. REALLY LISTEN. Sometimes "I think something is going on in my head" isn't the cry of a hypochondriac or someone looking for an excuse. If they stopped and listened, there really was something going on in my head all along.

6. If I could tell my 11 year old self something...

I would tell her that life isn't gong to get easier from here, it's going to get harder, MUCH HARDER so she should start praticeing asking for help now, so that when she REALLY needs help she'll know how to take it.

Well that's 10 questions and I'm starting to get a bit drowsy (YAY). If anyone comes up with some more, maybe I'll do this again soon.

Complete Randomness

What happens when 1 girl in a scooter, 1 girl using crutches, 1 girl with a little dog, 2 other girls, and a guy cross the road at a four way stop? We stop traffic in all 4 directions. I thought that was somewhat humorous.

That is all.

Apples to Apples

Just a quick post for once. Again, I was not planning on writing posts about my friends--serious disability posts only. Besides, it should be their choice whether or not they want their stuff broadcast over the internet. But I am not using names, so I'm slipping this post in here.

So 3 of my closest friends and I were all playing Apples to Apples while we were waiting for the ball to drop. If you don't know how to play, I am bad at explaining things, but go check it out--it's great. As a disclaimer, between us we have physical, learning, and mental disabilities represented. Actually we all have various combinations of multiple issues. So I was the judge and the word I put down was tame. I don't remember what the other words were that I picked up. The last one I picked up was amputations. I do not ever recall laughing so hard in my life. I turned bright red, almost peed my pants (I only have the very mildest of bladder issues so it really does mean I was laughing hard), and was starting to have trouble breathing. We all were laughing, but none as hard as me. What does this say about us as a group; especially about me as an individual? Am I sick and twisted? It's not the word in and of itself that was so funny, but rather the fact that it came out of sheer nowhere and maybe a little because of the particular group I was with. Though maybe it's a good thing that I'm already on some serious psychiatric medications...