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

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

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

Saturday, February 27, 2010

Some 6-Word Memoirs

I decided to roll home from school Thursday instead of wait for the bus, as most sidewalks are now passable by chair again, and then decided to cut through B&N to get myself distracted avoid some still impassable sidewalks. I got a phone call, and while I was on the phone somehow managed to roll aimlessly in the direction of the biography/autobiography section (my favorite) where I noticed that the latest 6-word memoir book is out. Here are 2 that stood out to me in my very brief look through.

From the back cover: Bipolar. No two ways about it.
From the first page: My life made my therapist laugh.

Friday, February 26, 2010

Quotes From "The Field"

Reas often posts quotes from the field, and while this is from school, and not "the field" I couldn't think of a more applicable title.

Yesterday I got into an elevator in one of the classroom buildings at school and 2 people followed me in, a guy and a gal. I got the impression they're a couple. The doors close and the elevator starts moving and the gal looks at the guy and says,
"Can you text me in class so I'll pay attention?"

Thursday, February 25, 2010

As Promised, Therese and Cheryl ON ANXIETY

I'm going through some somewhat irrational/somewhat rational heightened anxiety right now, and happened upon Therese, happened upon Therese's vlogs, and felt the need to comment/expand on her 7 tips for managing anxiety. My top tip for dealing with anxiety right now is also to have a mantra. She speaks of her mantra in the context of her "security blanket" tip but I find it to be a very separate strategy. My mantra that I started using this month is "all I have to do is show up." I've been waking up anxious in the mornings, and while it's nowhere near the level that leads to panic attacks, it's not a pleasant feeling to have a wave of anxiety come over me the second the radio comes on and wakes me up. So I repeat to myself, "all I have to do is show up, all I have to do is show up," while I lay there with my eyes shut tight pretending that I don't have to go to school.
"All I have to do is show up, all I have to do is show up. I don't have to be doing ok, all I have to do is show up. Now what ADAPT shirt am I wearing to school today? I'm going to show up, and I'm going to kick ass, because ADAPTers KICK ASS."
Eventually I do get out of bed and throw on that ADAPT shirt. A friend of mine did something for me that has been the best thing anyone has done for me in the last 2 years--she showed up. She showed up when I wasn't doing ok and she very obviously wasn't doing ok either. She didn't have to do anything else besides just show up. Showing up was a life changing experience for me and I will remember that everyday for the rest of my life. You don't have to be doing ok to make a big difference in someone's life, and in fact, you don't even necessarily have to do anything at all besides show up.

Music, Therese's number 7, is also a big one for me. Like I said, music allows me to pass my anxiety onto an outside force. My "hard times songs" also help in a different way then my fast songs do. I'm glad to say I've moved a step beyond just breathing, to showing up. That's a BIG step for me. Showing up at all can be HARD when you are not ok.

Another one for me, like I've said before, is running. I guess I'm just repeating myself in this post, because my other big one is coloring. Last night at OOO I was too busy picking on people/being picked on to color. So I decided to color during the meeting, because why not? I was talking about my recent lack of sleep and how I'm afraid of what will happen when it catches up to me. Being a giant anxious crying mess is not my idea of fun. Someone looked at me and said "You do seem more down then usual." I didn't really respond because I didn't want to start a whole other line of conversation, but inside a little part of me went "YES!" It doesn't always happen, I have to let it happen, but not only had I managed to become one with my mandala coloring book and my pack of crayola markers, not only had I let myself melt and mellow out, but someone had noticed!

I guess my biggest anxiety buster though is horseback riding, something I have not been able to do in a LONG time. There is an old Arab proverb, "The air of heaven is that which flows between a horse's ears." It is one of my favorite quotes. The other day after I woke up anxious, I took a good look inside myself and said "Cheryl, you know what you need? You need to get back on a horse. (do you ever talk to yourself in your head in the 3rd person?) That would solve all my problems." Well not all my problems or course, but horses make me melt more then any coloring book ever will. Horses are better then any drug. Better then any muscle relaxent, better then any antianxiety, better then any antidepressent, better then A-N-Y-T-H-I-N-G.

So what are your tips for managing anxiety? Have you tried any of the ones Therese has tried that I haven't? Have you tried breathing exercises? Can you explain to me what the deal with water is? There are so many people at OOO who are just non functional if they miss their swim. I'm trying to get it, because that just does NOT work for me.

Wednesday, February 24, 2010

Received Through Email

Cleaning for a Reason!

If you know any woman with breast cancer currently undergoing chemo, please pass the word to her that there is a cleaning service that provides FREE housecleaning - 1 time per month for 4 months while she is in treatment. All she has to do is sign up and have her doctor fax a note confirming the treatment. Cleaning for a Reason will have a participating maid service in her zip code area arrange for the service. Please pass this information on to bless a woman going through Breast Cancer treatment. This organization serves the entire USA and currently has 547 partners to help these women. It's our job to pass the word and let them know that there are people out there that care. Be a blessing to someone and pass this information along.

[image description: a pink ribbon. I don't mind ribbons when they are for medical things.

Monday, February 22, 2010

Tomorrow is National Pancake Day

On Tuesday, February 23, you can again help your Children’s Miracle Network hospital with IHOP’s National Pancake Day. [the logo is above]

Since beginning its National Pancake Day celebration in 2006, IHOP has raised more than $3.25 million to support charities in the communities in which it operates—like Children’s Miracle Network.

All you have to do is visit your local IHOP and celebrate National Pancake Day on Tuesday, February 23, 2010 from 7 a.m. to 10 p.m. You will receive one FREE short stack of IHOP’s famous buttermilk pancakes. While you are enjoying your delicious short stack you will have the opportunity to donate to your local children’s hospital.

We know that with your help and generous support, IHOP can reach its goal to raise $5 million in five years for Children's Miracle Network!


I always want to go to National Pancake day and yet I never make it. NPD has been going on since before 2006. Before the money was donated to CMN it was donated to the Leukemia & Lymphoma Society, another organization close to my heart.

Friday, February 19, 2010

Towson University: EPIC FAIL

I would LOVE to write a post for you about how great the documentary Shooting Beauty is (it is. REALLY) but I can't. I can't because I'm tired of being the ambassador for all of cripdom. I'm tired of people who think things aren't their problem. I'm tired of people who are so consumed by the dominant culture that they don't even know what they don't know. Or worse, don't care.

Here's the story:

I don't know if I saw the poster for Shooting Beauty in the hall first, or read Ellen's post about it first. It doesn't matter, the 2 were very close together, and I went OMG! THEY. ARE. SHOWING. THAT. HERE! They never show things like that here. And then we had "snoverkill" and school was closed. And I was sad. What were the chances that they could get the director to fly in from wherever he is on another date? But they did. Yesterday. And I was like SUPER EXCITED. And like I said, the movie was GREAT. But the point of the movie, the mission of the movie was completely lost. And I am ANGRY.

The screening on both days was scheduled to take place in an auditorium in a building that I've never been in, because I don't take classes in those departments, but that I know is rather old. I had a feeling I knew what the auditorium looked like though. I had a feeling it looked like one of the 2 big lecture rooms in the building I do hang out in: legal, but not accessible.

I was right. The doorway to enter the auditorium in the bottom was up a nicely put together ramp, but then you get in there and there isn't really an option for wheelers to sit in the front. The auditorium was set up with very steep stairs, not the easiest railings to hold, and space, I guess, for wheelchairs to sit all the way up in the back. I'm preaching to the choir here, but I would like to draw your attention to the parallel between sitting in the back of the auditorium and sitting in the back of the bus. UNCOOL TOWSON UNIVERSITY. TOTALLY UNCOOL.

I didn't have my chair with me yesterday, it was a crutches and AFOs day due to our snoverkill, so I took a seat in the 4th or 5th row up on the aisle. Far enough up that I wouldn't be straining my neck to be able to see, but low enough down not to be so bad for the whole crutches/bad railing thing. I sat and I fumed. I knew this was going to happen, I contemplated emailing 2 people from disability support services (DSS) in advance to have them "investigate" (not much of an investigation if I could clearly describe the setting having never been there) but decided not to. I'm tired of being the "ambassador for disability" at this school and I just didn't feel like it.

Not too much later the DSS staff started trickling in. First in the door was the person in charge of handling all of the physical access issues on campus. I motioned for her to come up. I'm sure I had the "I'm trying to contain myself from doing physical harm to you people" dagger look in my eyes. To say I had the "I'm displeased" tone in my voice is a severe understatement. Her answer to my question of why this wasn't held in an accessible location was that she just found out about this today. REALLY??? The poster was up for about 3 weeks and there were several email announcements. That answer: FAIL. Next in walked in both the director and associate director of DSS together. I motioned for them to come over, but I think they just thought I was waiving.

I wanted to bring this issue up publicly in front of the whole crowd, but I wasn't sure how to do it. The director was there remember, and I didn't want it to seem in anyway that I was putting him into an awkward situation. This had nothing to do with him. I (and so did he) thought we were going to have a formal Q&A after the screening and I was going to say how great it was (it is) and then ask who was in charge of setting this up from school. However, the dude walked right into it. He got up to introduce the film and then motioned to a set of 4 stairs to go up behind the curtain on the stage afterwards to look at some of the photographs.

I raised my hand but it was very clear he wasn't going to make eye contact, so in my "I am so much more then displeased" voice, I just cut him off. "I have a question. Is there anyway to get back there without having to go up a flight of stairs?"
"No. No there isn't. There used to be. There used to be a lift and I don't know why they took it out, but they took it out... This was the only room we could get for tonight."
After the movie when I got to the director & associate director of DSS their answer was
"We just found out about this and had nothing to do with the planning of it."
FAIL. EPIC FAIL. You're DSS. That answer doesn't fly with me.

I know this was not the only place that they could get because it was advertised as this for both dates. Do you want to know the real reason this screening was held in a completely inaccessible location? The real reason is because the department hosting the event is housed in this building and it was easy. They didn't even try. I know because I know where there is a fantastic accessible setting on campus and I know that had either they contacted DSS or had DSS had a brain, DSS has the power to get any event on campus moved for accessibility purposes. If there was something going on in that space last night, they could have easily made them take the crappy auditorium.

Not only am I angry, I am also sad. I am sad that we did not have a formal Q&A afterwards. I am sad that most of the people left right after the lights came on and didn't even go look at the photographs.

I am sad that we were not able to have the same enlightening experience as Ellen did. I am sad that when Cheryl (she's blond, uses a powerchair, & has CP. Creepy...) was having a bad day and was crying because she was in her late 20s and wanted to settle down and get married, 2 girls sitting behind me snickered. Someone who is nonverbal wants to get married. That's funny? An old guy in a chair who likes to smoke, [right] that's apparently something to snicker at too. They should go to ADAPT... There were plenty of places to laugh, EJ's a trip, but there is a HUGE difference between laughing and snickering.

So I am sad that we missed a gigantic learning opportunity, and I am sad that the hosting department didn't value the film enough to hold it in a larger accessible facility. It was just like in the film. No galleries wanted to host the exhibit because they thought no one would come, and then HUNDREDS came. This screening was held in some rinky dink out of the way auditorium and then so many people came that there were quite a few people sitting in the aisles. FAIL EMF department. EPIC FAIL.

While we're at it, lets not forget that the photo exhibit wasn't even set at normal standing people's eye height, it was set at basketball player's eye height. Remember I was standing yesterday and I still had to strain my neck. Why not just ignore the director's request to hang the photos at chair user height. You might as well fail at everything...

Wednesday, February 17, 2010

If Air Travel Worked Like Health Care

Thanks for posting ages ago Reas!

Tuesday, February 16, 2010

On "Security Blankets"

I am not doing ok right at this exact moment. I am doing ok in general, in fact I am doing GREAT, just not RIGHT NOW at 4:53pm on Feb 16, 2010. Ask me at 6:53. I am what I call "buzzed" or "half manic" as I termed it Friday to laughing bipolar friends (what's wrong with that?). No, I am not hypo-manic, trust me, I know what that feels like. This is "medicated." I might be worried about becoming hypo-manic if I didn't know exactly what this is from, if I didn't know that I really could feel fine at 6:53, but I do.

My brain is just a little over keyed up and instead of allowing me to be mellow, to crawl into bed with my Grey's Anatomy DVDs that I've watched so many times I can now recite lines of several episodes in advance, my brain is insisting that I do something, that I go for a run (which I cannot do as I had to abandon my chair at school, but that's another story), that I at least walk around to burn off this energy, that watch more of Therese Borchard's vlogs (video blogs), and that I post about them. What can I do but oblige? Ignoring this state will only make me irritable. So I have put on music, started writing and I am happy to report that I am already getting my brain back in order. The person who gave me a caffeinated diet coke 3hrs ago should consider buying decaf. I know 100% it's the culprit.
says you: What does this have to do with security blankets?

says me: Nothing and something. You will see the connection below, but I also write more when my brain is like this, wanted to keep a written record of my state of mind, and thought some people might like to know more about how BP is for me. Sometimes it's ok to mix caffeine with my meds, other times it is NOT.
So onto security blankets. You know, not actual blankets, but the concept. I've been wearing mine all day, I've been thinking about them all day, and then I happened upon Therese's vlog and decided I should write about this now as opposed to when I cover her anxiety vlog. To me a security item is not something that envelopes you and gives you comfort, but an anchor as weight watchers likes to call it. Something that steadies you when you are unsteady, straightens out your brain when it is crooked (like now, see, it all connects).

I have different anchors for different mood states or situations. Sometimes I need my stuffed clydesdale if I do need comforting / tactile sensory input, sometimes I need fast music if my brain is jumpy / too fast (like right now) and requires auditory sensory input, and sometimes I need an ADAPT t-shirt and/or an orange shirt and/or my "ugly orange hat" (like today).

I've never been able to explain the fast music thing until now. I just realized what I am doing, and it is GENIUS. Wouldn't slow music be more calming, you're thinking? Nope. I think my brain calms down because I am in a sense turning over my hypo-manic / half manic state and/or anxiety to an outside force in a sense. I am letting go of it; responding to it proactively as opposed to reactively; acknowledging both that the feelings / state is there and that they don't belong in my brain as I'm supposed to be balanced, but that this is still a part of me that isn't going away. So I upload it to another server in a sense (if you understand computer language), my ipod, and free up gigabytes in my brain that could be better used for something else. See? GENIUS!

What I thought I would be talking about in this post before it became all over the place (like my brain) were my ADAPT t-shirts. I am wearing one right now over my long sleeve orange shirt under a zipper hoodie (FYI, the GAP has been carrying tons of styles of shirts, sweaters, and hoodies in exact CCA orange!), was wearing the same shirts to the budget hearings yesterday (I made sure not to sleep in them), and will be wearing a different one tomorrow, even though it is 30 degrees out. I have 6.

The simple act of wearing a t-shirt makes me feel like I can conquer the world! The simple act of wearing a t-shirt makes me feel like a competent, confident, POWERFUL, successful person, which I very often do not. In certain situations it actually positively changes people's reactions / perceptions of me. ADAPT shirts help me focus on the things that I am good at instead of my many failures. They remind me that I am part of a greater force then myself alone, that I make a difference, that I am just as important as anyone else, and that the world, ADAPT as an organization, is better off because I am me, I am passionate, and I am there. That is true for every ADAPTer. Even just the color orange (the unofficial official color of ADAPT) helps my confidence greatly, often to the point where I can easily push my anxieties aside and charge through a stressful situation knowing that I will come out on the other side in one piece. If I have to rotate my shirts and wear them every single day that I am in class, I will. You cannot control me; you do not actually, really, hold my fate in your hands. I do. And I will not allow you to posses my power anymore.

Monday, February 15, 2010

Screw you WBAL!

I don't own a TV so last night I went online to check out the predicted snow fall for today (seriously, 80in isn't enough for a winter?) in the hopes that it won't impact my trip to Annapolis for a bunch of budget hearings, and found a video featured lower down on the main page of the local NBC station, Coming to Terms with Depression. Hmmm... I thought, and clicked. The segment was an interview with author/blogger Therese Borchard who just released a book that has the same title as her blog, Beyond Blue: Surviving Depression & Anxiety and Making the Best of Bad Genes. I so have to order this book. It sounds like a keeper. And yes reporter, back to back blizzards CAN impact the "winter blues." Everyone that made it to OOO on Friday was really feeling it, including me.

WBAL, why won't you allow me to embed your video so that I can share it with the world? And WBAL, why won't you provide a transcript of your video below it? You're discriminating against Deaf/HOH viewers.

I will begrudgingly post the link to the video as I think the interview is great and could help some readers.

I did a youtube search in the hopes that some viewer uploaded the interview there, but nope. Here is another interview segment from some other station.

Search Therese Borchard on youtube. She has A LOT of GREAT videos on there that she shot in front of her fireplace. My next few posts will be my comments on some of them.

Sunday, February 14, 2010

The Things That Go Through My Head...

This happened back in Jan, but I decided to save it until Valentines Day most aptly. [image description: 6 colorful dumbbells]

I was at the gym in the free weights section working bicep curls with my teeny tiny 8lb dumbbell. Usually I sit sideways on one of the benches turning my neck to the side to look at my form in the mirror. However any off kilterness in anyone's position could result in injury, and while yes, this was only an 8lb dumbbell, I should still be looking forward. That, and well, straddling the bench is a good stretch for my extremely tight right adductor (upper inner thigh muscle). So I did. I had a good amount of working botox to prevent this from hurting, but I most certainly could feel it.

The first thought that went through my head was kind of concurrent with the second, which was that I wish I was still horseback riding, horses are way wider and I'd be so much looser.

The second? I should do this more often. It'd be good to keep my sex muscles loose!

So sorry to creep you out mom, but I'm getting pretty close to 25.

Friday, February 12, 2010


This is becoming a familiar phrase around Baltimore, as is snomageddon (as used by the governor), and snopocalypse. Baltimore has been stuck in a standstill as we've had three blizzards this winter: Dec 19, Feb 5, and Feb 1o. The grocery stores last week were crazy. I stopped into 3. I've been cooped up in my apartment all week as school was closed, my haircut was canceled, my therapy appt was canceled twice (she's been stuck in her house), 2 support groups were canceled (we're open today) and I even had a funeral canceled due to the snow. Both the public buses and thus paratransit have stopped running at times or have been running on modified schedules. I'm lucky there is a back way from my apt to Barnes and Noble, where I am now and where I went Tues, the only places I've been. I'm trying to save $ by getting rid of a gigantic vice and not having internet in my apt. I wasn't thinking about 2 blizzards in less then a week and not being able to get to school where there is internet. We've had over 80in of snow this winter, a record that beats all records, and are expecting more.

What does this mean? This means I've been going stir crazy bouncing between my bedroom and my friends' apt all week, occasionally the lobby, and am sick and tired of just wearing sweats. YIPPY! This past summer and fall (I'm not sure the exact dates) I did this for weeks on end and didn't care. I didn't want to do anything else and was quite content to hide away. I was pretty depressed and off my meds. It's AMAZING what 2.5 months of consistent meds can do. GET ME OUT OF HERE!!! At least OOO is open tonight! This also means I'm running out of things to write about :-( Being cooped up doesn't help the creative juices...

Here is a picture of a mountain of snow in the parking lot outside B&N:

Thursday, February 11, 2010

What's Your "Elevator Definition"?

A week and a half to 2 weeks ago I was in class and my professor explained what an "elevator definition" is. She is both a certified child life specialist (CCLS) & a board certified art therapist (ATR-BC) and those are not something most people know anything about. Although I hope my readers know what a child life specialist does. I talk about it A LOT. She said when she worked in a hospital someone would jump on the elevator, look at her badge and ask her what a CCLS or an art therapist does, and she only had the length of the elevator ride to sum it all up. That's HARD.

[image description: a close up of a hand pressing an elevator button found through a google image search that brought me to another great blog post about elevator discussions]

So she asked us what family studies is. Another hardish one. I've been in school so long I think I've perfected it. Most people just say "it's like social work," which it can be, except that family studies is SO MUCH MORE. I'm guilty of that sometimes, especially if I catch a cab either to or from school. Cab drivers like to ask me what my major is and I say social work just because it's easier. My school doesn't even have a social work major. So that wasn't allowed. My elevator definition of family studies is that "it's a mutt--a little of this, a little of that. I've taken classes in sociology, psychology, education, family law, sexuality, parenting, all sorts of things." Don't ask me to explain what a certified family life educator does though, I haven't gotten that far, I'm far from being certified.

The point of this post was not to talk about family studies, but rather to talk about what happened in my early childhood class last week. Cultural competence is BIG in school these days and the professor wanted us to talk about our culture. 12 white women, all early to mid 20s, presumably middle class (but maybe not), from Maryland, New Jersey, or Long Island most likely, majority Christian although I'm sure there were 2 or so other Jews in the room, stared back at the African (as in she was born in and spent a large portion of her life in Ethiopia) professor with blank stares on their faces. So much for cultural diversity.

Being the obnoxious person that I am, always wanting to make everything about disability, always wanting to change people's perceptions, I went on my "I consider myself bi-cultural" spiel. This time she was actually really interested. Really wanted me to explain, really wanted to understand. Except I couldn't. I really feel like I did a crappy job. I was put on the spot. Usually I have time to prepare. I said something about going to DC in April and how comfortable it is being with people just like you, who have had the same experiences as you, faced the same discrimination as you. That's good, but I can do better. I just don't think I did disability culture justice. What about our allies? You know those people who aren't crips but are so into the disability culture scene that you have to stop and think to remember that they're actually able bodied. I totally excluded people I LOVE.

So I need a better "elevator definition" of disability culture. Does anyone have a better one they use? An easier way to sum it up? How about other things? How do you sum up other complicated topics / concepts within the span of an elevator ride?

Wednesday, February 10, 2010

A Non-Wordless Wednesday

It's an image (a jpg) but all it has is text. It says



Found through the blog Just Me

Tuesday, February 9, 2010

CP Alters Your Cardiovascular System

About a month ago Ellen wrote a post about how max is super skinny. Max has oral coordination problems and she was wondering if he isn't eating enough. I responded that a high metabolism comes along with spasticity and went into detail. I wonder what people think when I write comments that are longer then the post. The tighter your muscles are the more calories you burn. Even just sitting on your butt. I learned this when I had my first gait lab experience at Gillette. Tight muscles need more oxygen and that means your heart has to pump faster to keep up with that increased need, and well you can eat a whole lot. It explains why my resting heart rate is in the high 80s-low 90s.

Before I had my big surgery I ate TONS. I don't know how my mom kept up with the grocery bill. I also have a former roommate that ate bowls of ice cream for dinner and chugged Hershey's syrup out of the bottle and couldn't gain an ounce. She's super skinny, has been always. This isn't to say that someone who has increased spasticity can't gain weight/be overweight. That is an equal probability it seems from what I've gathered. If you have a harder time getting around, especially if you're a full or part time wheeler, you just don't have the opportunity to burn it off. It all depends on many factors. This drove me crazy for years, but now I just don't care anymore.

This brings me to a question I've been meaning to pose on here for a long time. I run. I LOVE TO RUN. I've been told it's bad for my joints, that I put 3X the force on my ankles as opposed to able bodied people, but I don't care! Except, well, I've always wondered if I'm doing damage to my heart. The heart rate monitor on the treadmill often reaches 200bpm and I've always assumed it's actually higher--that the machine just doesn't go that high. My thinking though is that you're supposed to double your resting heart rate when engaging in cardiovascular exercise and being that my resting heart rate is 92 lets say and that it's oh, about 124 just walking at 1mph, I SHOULD keep my heart rate that high.

I breathe so heavy, get bright red, guzzle tons of water, take what seems like forever to get back to a normal rate of breath. Is that ok? Don't just say no, substantiate your opinion. Any cardiologists read my blog? I'm wondering if the heart just isn't designed to work that hard and if I am going to wear it out at a young age. Should I be worried? Or am I paranoid as usual?

Monday, February 8, 2010

I Wouldn't Be Me If I Didn't Have This Funny Brain

A crip friend of mine is reading Waist High in the World by Nancy Mairs (which looks like it's on a good sale at Amazon). I'd heard of it; it's been on my recommended list for years. She came to me with a simple quote. Something to the effect of

I wouldn't be me if I didn't have MS.
Wow, she thought. Profound. Seriously, I thought? You're XX age (I won't out you, sorry I'm implying you're old), you've been a crip most of your life, and this is the first you're pondering this? All through my life people have asked me "If you could take a pill and not have CP, would you do it?"

"No," I'd say to a shocked face. "I don't know any different and I wouldn't be me. And I get out of lines at amusement parks." I'm guessing I was 7 about then.

Last week was the first week of class. The professor asked a question and as usual someone answered "at risk populations."

"What does that mean?" the professor prodded.

Teenagers, people in poverty. "Everyone, in this economy," I answered. "Everyone is at risk of being homeless, at risk of not being able to pay their mortgage, because everyone is at risk of loosing their job."

Then I raised my hand again. "To use a real life example for me, I'm friends with a lot of people with pretty involved disabilities who are at risk of being stranded, of having serious problems because the developmental disabilities adminadstration has taken huge budget cuts and their attendant services are being cut."

"Can you explain what attendant services are?" she asked. "I'm not sure everyone knows what that means." Uh... I thought in my head. How do I explain what a Medicaid HCBS waiver is in a sentence? But I did.

Wow, I thought in my head. I wouldn't be me...

I Wouldn't Be Me If I Didn't Have This Funny Brain

I wouldn't be me if I didn't have this funny brain

I wouldn't be me
if I was born breathing
and if I hadn't had a brain bleed
and I didn't have CP

I would look just like everyone else
and wouldn't catch people's attention
I could blend in with the crowd

I would think just like everyone else
and talk just like everyone else
and I wouldn't have to speak up to be heard

I wouldn't be tired all the time
but then small things wouldn't be an accomplishment
getting to class on time would no longer be a celebration
and celebrations are fun

I wouldn't be me
if I didn't have that genetic variation
that lead to me having psychological issues

I wouldn't be a writer
and I wouldn't be passionate
because I wouldn't have that extra energy
passion brings a rush
and I like that rush

I wouldn't break barriers if I didn't have both bipolar and cerebral palsy
because who has 2 disabilities?
a psychological and a physical
a visible and an invisible
I do

and it makes me proud
that I can use them to change the world
because I DO stand out in a crowd
and I have had to learn to stand up and make myself heard
To try harder when someone tells me no
and learn that no does not mean no

I am odd
and I am different
I am an activist
and most days I like it
everyone has an off day

who would I be
if I had grown up playing soccer
and had not been forced by necessity to navigate the public bus
and had not had extra hassles
and had not had to learn to speak up to be heard

I would not be a writer
and I would not be an activist
and I might not have compassion
and the passion to change the world

if I did not have CP
and if I was not bipolar
I wouldn't be me
and I can't imagine
not having passion and compassion
and not being me

Friday, February 5, 2010

If You Live in MN Gillette Needs Your Help

Here is an email I got from them:

We need your help.

Over the coming weeks, the State House of Representatives will be reviewing Bill 2568. This bill was authored by 39 Representatives in support of providing funding for Gillette to expand our surgical facilities to meet current, and future, patient needs.

Did you know that, currently, Gillette has only two surgical suites that are able to accommodate the complex, multi-specialty surgeries that so many of our patients need. And yet, each year, we perform more than 3,300 surgeries.

All we are asking you to do is help us say, "Thank you." If you click on the "Take Action" link, you will find a sample email message you can send to your State Representative.

We hope you will join us in thanking them for their support of Gillette and remind them why Gillette is important to you and your family.

Thank you.

Thursday, February 4, 2010

I Take Responsibility

Thanks Beth for pointing me to two GREAT articles recently, one of which I will just mention briefly. Debate Over Cognitive, Traditional Mental Health Therapy from the LA Times touches on whether or not therapists should be designing treatment plans within the context of the medical model. But it is the other article, or rather part of it, that is really the focus of this post. The Americanization of Mental Illness from the New York Times also focuses on the medical model, but more extensively.

I'm not going to sum up the entire article as it is super long (totally worth reading the whole thing though) but I am going to pull out two parts. The discussion on the stigma of viewing mental "illness" within the framework of the medical model ("brain-disease"), as "... an illness like any other" (quote from page 3), something purely with a biochemical origin, versus as something originating from situational triggers ("psycho-social") is primarily located on page four. I'm not going to comment on this section anymore except to say GO READ THIS NOW (I'll wait) because I feel like I'd be repeating myself ad nauseam -- especially lately -- as well as because the opinion is substantiated by scientific studies and isn't just my verbal diarrhea.

There is this one quote from page 3 though that really stuck with me and that I will comment on fully.
"Mental illnesses, it was suggested, should be treated like 'brain diseases' over which the patient has little choice or responsibility." emphasis mine
Little choice or responsibility. Wha? Huh? Seriously? I didn't have little choice over whether or not to be bipolar, I had NO choice. It's not like I woke up one day and said "Gee I think I want to have a major mood disorder." I didn't know until high school that my dad is bipolar and this runs rampant in that side of my family. I just drew the short genetic straw so to speak.

[image description: tiles made by elementary school students in CA (found by google images) surround and illustrate the word Responsibility]

However, I DO have full responsibility over what I do with this information.

I AM responsible for the choices I make, although I often do not practice what I preach.

I AM responsible for the decision to take my medication or not, to go to my support group / therapy / medication appointments or not, to go to the gym or not.

I am NOT responsible for the fact that I will have repeated bouts of depression for the rest of my life.

I am NOT responsible for my panic attacks, especially when I have the ones that start in my sleep.

But, I AM responsible for how I decide to handle this, how / when / if I get control over the episode or if I decide to relinquish my power to my states indefinitely.

Little responsibility? How is that little responsibility? That is BIG responsibility.

Wednesday, February 3, 2010

A Health Care Almost Wordless Wednesday

Is that supposed to be Socks the cat (?) leaning over the lectern in the White House press room. His word bubble says "Every animal-owner is required to treat their animals humanely, including veterinary care as necessary. Why don't you try that for people too?"

Tuesday, February 2, 2010

I Have Cerebral Palsy...

[image description: a green rectangle with the words I have cerebral palsy... cerebral does not have me, a green cerebral palsy awareness ribbon, and one of those green awareness bracelets. Did you know that green is also the awareness color for both organ donation and save Darfur.]

A few weeks ago I saw this clipart as the footer on someone's blog. I will not say who, as I do not want them to feel bad. Anyway, I've seen that ribbon icon on more than 1 blog. The ribbon has always made me feel uneasy, but this clipart even more so. It's those words, "I have cerebral palsy... cerebral palsy does not have me." I almost had a pit in my stomach when I saw this. You ever get that feeling and you just don't know why? Well I decided to think it over and to my surprise, it didn't take long to figure it out.

First there is that ribbon. What are ribbons associated with? If I polled 100 people I'm sure the top 2 answers would be AIDS and breast cancer. Following along would also be a whole long list of DISEASES (although somehow I don't mind ADAPT's orange ribbon [left]. I've fully embraced the orange). By associating CP with an awareness ribbon we are conceptualizing it w/in the context of the medical model, and I REFUSE TO BE MEDICALIZED. This is one reason why autism advocates detest that horrid puzzle ribbon. Even when I go for my semiannual botox appointments I cringe at the word patient. My doctor works in a hospital even. doctor + hospital = patient (did you know that it gets billed to insurance under a code for outpatient surgery. 7 injections do not equal surgery) I know that; but patient is up there on my list of most damaging words, along with inspiration, special, the r-word, and wheelchair bound. And those bracelets, when the first ones came out they were for testicular cancer. Ick.

Then there are those words, "I have cerebral palsy... cerebral palsy does not have me." Cerebral palsy DOES have me (so does bipolar) and that is something I take much pride in. It took me a very long time to get to this point where I am so comfortable with it, but I would not be who I am if I did not have disabilities and I DO NOT WANT MY IDENTITY MARGINALIZED. By saying this you are implying that I am supposed to push one of the biggest parts of me aside, and I just don't see how this can be done. There would be no Cheryl were it not for my diagnoses (there I go medicalizing). I know what the phrase is supposed to mean. See me as a person, interact with me as a person. I am not wheelchairs and orthotics, but these things are parts of me. I want you to see, interact with, embrace the sum total of my existence in it's entirety, and that does in fact include CP and BP. Don't push them aside, think of them as part of the package deal.

*off my soapbox*

Monday, February 1, 2010

Here's My Spiel: ADAPT Fun Run 2010

If you've visited my blog at all over the last three weeks you probably noticed my plea for money fixed at the top of this blog.

Says you: Yes I have. What's the deal?
Says me: This is the deal.

It's that time of year again, the ADAPT Spring National Action / Annual fun run is coming up! Please help me reach my goal of raising $2,000 to FREE OUR PEOPLE by donating anything from $10 to $1000. This money will allow 2 new Maryland ADAPTers to attend their first national action, 2 new youth ADAPTers to be able to fly to the Youth Summit in Chicago in June (they don't cover air fare), and keep National ADAPT up and running.

To steal from Mike Ervin, ADAPT's 2010 National Funruner, "Giving the bad guys a pie in the face actually costs a lot of money. Help keep ADAPT strong! Please sponsor me. It's easy to do and it's tax deductible."

That's me at the ADAPT Youth Summit followed by famous Chicago ADAPTer, Access Living Employee, and coincidentally wife of Mike Ervin, Rahnee Patrick. I think I've posted this pic before.

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