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!

Wednesday, July 29, 2009

I'm 24 Going on 5 (a Wordless Wednesday Post)

Black Raspberry ice cream w/cool whip & reeses pieces in a green ice cream cone bowl with a pink ice cream cone spoon

Monday, July 27, 2009

From the White House

Office of the Press Secretary

For Immediate Release
July 24, 2009



Today we celebrate the 19th anniversary of the enactment of the historic Americans with Disabilities Act (ADA). Signed into law on July 26, 1990, this landmark legislation established a clear mandate against discrimination on the basis of disability so that people with disabilities would have an equal opportunity to achieve the American Dream.

Our Nation is once again poised to make history for people with disabilities. I am proud to announce that the United States will sign the United Nations Convention on the Rights of Persons with Disabilities, adopted by the United Nations General Assembly in New York on December 13, 2006. The Convention is the first new human rights convention of the 21st century adopted by the United Nations, and it represents a paradigm shift in protecting the human rights of 650 million people with disabilities worldwide. We proudly join the international community in further advancing the rights of people with disabilities.

As we reflect upon the past and look toward a brighter future, we recognize that our country has made great progress. More than ever before, Americans with disabilities enjoy greater access to technology and economic self-sufficiency. More communities are accessible, more children with disabilities learn alongside their peers, and more employers recognize the capabilities of people with disabilities.

Despite these achievements, much work remains to be done. People with disabilities far too often lack the choice to live in communities of their choosing; their unemployment rate is much higher than those without disabilities; they are much likelier to live in poverty; health care is out of reach for too many; and too many children with disabilities are denied a world-class education.

My Administration has met these challenges head-on. We have launched the "Year of Community Living" to help people with disabilities live wherever they choose. [emphasis added] We have nearly doubled the funding for the Individuals with Disabilities Education Act. I was proud to sign the groundbreaking Christopher and Dana Reeve Paralysis Act and the Children's Health Insurance Reauthorization Act, which provides health insurance to millions of additional children. I also lifted the ban on stem cell more research. These measures demonstrate our commitment to leveling the playing field for every person with a disability. My Administration will not rest on these accomplishments, and we will continue to focus on improving the lives of people with disabilities. I encourage States, localities, and communities across the country to cultivate an environment in which the 54 million Americans living with a disability are valued and respected.

Americans have repeatedly affirmed the importance of protecting the human rights and dignity of every member of this great country. Through the steps we have taken, we will continue to build on the ADA and demonstrate our ongoing commitment to promoting, protecting, and ensuring the full enjoyment of all human rights and fundamental freedoms by people with disabilities.

NOW, THEREFORE, I, BARACK OBAMA, President of the United States of America, by virtue of the authority vested in me by the Constitution and laws of the United States, do hereby proclaim July 26, 2009, as the Anniversary of the Americans with Disabilities Act. I call on Americans across our country to celebrate the progress we have made in protecting the civil rights of people with disabilities and to recognize the step forward we make with the signing of the United Nations Convention on the Rights of Persons with Disabilities. Inspired by the advances of the last 19 years, let us commit to greater achievements in the years ahead.

IN WITNESS WHEREOF, I have hereunto set my hand this twenty-fourth day of July, in the year of our Lord two thousand nine, and of the Independence of the United States of America the two hundred and thirty-fourth.


Year of Community Living??? I don't think so. That's a line of crap. Mr President, if 2009 truely is the "Year of Community Living" Then you will go to the house and the senate and DEMAND that the CCA is included in your health care reform package. You will make sure that there are enough housing vouchers so that people living on $600/mo (SSI) can afford to live in the community. You will help to ensure that PCAs are paid a living wage and given health benefits, vacation, & sick days. You WILL live up to your promise to ADAPT. Obama, you're a f------ lier.

And how about this? Obama's speech on signing the UN's CRPD. Read it here or watch it here. I'm with Josie Byzek. It makes me want to throw up.

Happy ADA Day everyone!!!!! I think it's my favorite holiday.

Sunday, July 26, 2009

Outdoor Concerts When You're in a Chair

Last weekend was Artscape, America's largest free arts festival. By free they mean no admission charge, food & stuff of course costs $. I'd never heard of Artscape when I lived an hr southwest of here, but this is my 4th summer up here and I still had yet to have gone. Last year was, shall we say, interesting. To give you the ultra short version, friends' lift broke & I couldn't get in the van (but they were in it).

This year though, I went. The weather was MUCH better too. About 15 degrees cooler then when I'd attempted last year. I didn't manage to get to Artscape in time to see anything, but I managed to get there in time to see the 2 concerts I'd wanted to see. Cake and Robert Randolph & the Family Band were playing back to back with a half hr break in between.

[Cake has listed on the front page of their website "Except for emergency procedures, the 36 million Americans with no health insurance are required to pay in advance for hospital care. Otherwise, most hospitals will not admit them." Pass the CCA & we'll have some more healthcare $ to help peeps out. Ahem. Shamless plug over]

Anyway, 1st, Artscape was way too crowded for my taste. 2nd, I had an absolutely HORRIBLE view of the stage [see right, & btw, that guy's in a ibot, never seen one up close before]. I was sitting in the wheelchair only section (that fence thingy was seperating it out) and I couldn't see anybody on the stage AT ALL because of the large crowd STANDING for several rows in front of me. The wheelchair section was just too far back from the stage and I couldn't do this: [girl held up on the shoulders of her brother so that she could get a good view of Cake]

I'd actually come more to see Robert Randolph more then I'd come to see Cake, so when I came back for that concert I decided maybe I wouldn't sit in the wheelchair only section (not every chair was). So I got let in as if I was going to and then tried to push my way towards the stage, only to get an up close and personal view of a few guy's asses (my friend was laughing) and have some chick almost grinding with my joystick. That made me nervous, so I carefully steared my chair in reverse, parted the red sea, so to speak and made my way back towards the wheelchair section where I ended up seeing an 8 yo kid break dancing to Billie Jean off to my left.

One minute the kid was there and the next a member of the crew ran over, grabbed his hand and wisked him on stage [see video below, FF to 5mins]. And then, of course, I couldn't see him either, even when I had the lightbulb moment that hey, I can stand up & lean on that rail. DUH! Except that I'm only 5'1" and every guy standing in front of me (and many women) were taller then me. Didn't help ;-(

It's a good thing I didn't pay to see these bands or I might have been super pissed. I mean, especially when there's a super simple solution--cluster the chairs up front, even if off to the side. ARGH! It's just not accessible if we can't see--even if we can get in...

Thursday, July 23, 2009

Thankful Thursday

This week I am thankful because...

  • I have my favorite shirt back as my laundry is no longer hostage
  • I got myself new gym shoes
  • my memoir is starting to shape up
  • I got something to hang in my room that I'd been wondering where it was
  • people not only put up with me but value my advice (when I have some)
  • there have been dedicated people camping out outside of the DNC over the last 3 days
  • The medicaid buy in program in MD got reformed and can help so many more people NOW (as opposed to waiting for congress to straighten everything out)
  • of nice text messages
  • paratransit goes all the way out to Annapolis.
  • my facebook newsfeed keeps me updated on ADAPT

Sunday, July 19, 2009

The Book Jacket to my Memoir (written in 2003)

For some odd reason I felt compelled to visit my geocities site that I started in the 7th grade and hasn't been touched in years. Good thing I did because it turns out that Yahoo is shutting geocities down in Oct and deleating everybody's stuff. There's stuff on there that I want (like below) and will have to put on my laptop.

I signed into my account to look at my extensive clipart collection and saw a file essay.html What's that??? Something I don't ever remember writing, but I apparently posted the admissions essay I wrote to get into the MC Scholars program (I didn't get in). You had to write the book jacket from your memoir you just finished in 2025, when I am 40. On my website I wrote "this is the fakest thing that I have ever written in my life. Wouldn't it be great if this happened in the real world?"

Triumphs Over Struggles: The Ups and Downs of Life with Cerebral Palsy is an ordinary book about an ordinary person who fought for ordinary things. It is the autobiography of Cheryl *censored*, a wife, mother, and social worker at Gillette Children’s Specialty Healthcare, a hospital that services pediatric orthopedic and brain disorders exclusively. She has spent her whole life fighting. Although most people associate segregation with the 1950’s and 60’s, the 1980’s and 90’s were filled with just as many battles for Cheryl. It was the age of the Americans With Disabilities Act, but Cheryl was still continuously denied access to life. She fought for both the right to attend a local preschool as well as her neighborhood elementary school, which contained 32 steps down to the playground. An avid horseback rider, Cheryl was also almost refused the right to attend a local horseback riding day camp.

Besides all of the adversity Cheryl has faced in her life she has been able to triumph over it all. Cheryl endured eight reconstructive operations on her legs during her childhood which resulted in her having to relearn how to walk four times. Through all of this, Cheryl, whose parents were told would never amount to anything, remained an honor student in school. She attained her associates degree in psychology through Montgomery College’s Scholars Program and then finished her bachelor’s degree through Hofstra University’s Program for the Higher Education of the Disabled (P.H.E.D). Cheryl later received a master’s degree in social work at The University of California, Berkeley.

Through her advocacy for people with disabilities, Cheryl has made a significant impact on the education of mainstreamed disabled students. Cheryl started lobbying local disabled rights organizations in college. Since then she has been interviewed by many media giants, such as NBC’s Today Show, Good Morning America, and The New York Times. The Cheryl *Censored* Education Act is a Federal education bill aimed at setting a national standard for the education of students like her. It is currently being reviewed by the House Education Committee.

Cheryl lives in the suburbs of St. Paul, MN, with her husband Matt of twelve years and three adopted special needs children, April, May, and June, ages 9, 8, and 6, whom she has had since infancy. She has two dogs, Eloise, and Puck; a cat, Mizzy; and a horse, Apple Blossom. Cheryl and Apple Blossom are in training for the 2028 summer Paralympic Games in Rome, Italy. They have won many ribbons for dressage in both local and national disabled riding shows. When not in training, working in the hospital, or lobbying Congress, Cheryl enjoys shopping, running 5ks for charity, and working as her synagogue's high school youth group advisor.

This is so bizzare. Bizzare in the fact that I found this during the time I am taking memoir writing class, and bizzare in the fact that I must have always known myself so well. It turns out this was not as far fetched as it seemed to me when I posted it on my site 6+ years ago. My goal still is to write "an ordinary book about an ordinary person who [struggles with] ordinary things." That's what I'm trying to do right now in fact.

It turns out that I went to Hofstra 1st, flunked out, and then went to MC 2nd. Going to social work school is still in the master plan, although not all the way in Berkley (I picked that b/c I was under the misguided assumption that Berkley was the mecca of disability rights, turns out Chicago is). I'd be more then exstatic if I got a job at Gillette some day. I'm never going to be a paralympic athlete, but it's interesting to note how prominate a role pets play in this essay. I guess I've always known how integral pets are to my mental health (what other term can I use? I hate that one). And running. Somebody at OOO mentioned Friday about getting a group together to start walking and signing up for a 5K. So I may do one. Dunno if I'm up for it or not. I don't know why I put down 8 surgeries, the count is 7, it was 6 then, still haven't done the last 2...

The part I thought was most unfathomable when I wrote it is "Cheryl started lobbying local disabled rights organizations in college." Me get involved in politics? Yeah right... Turns out that I did get involved in politics in college (see the CCA tracker to the right). Within the last year I've lobbied on both the state and national level. Who woulda thunk it? Get involved with ADAPT? Not me. They're too weird :D No one's ever going to attach my name to a bill, but I am going to work to finally get the Disability History and Awareness Month bill passed which will change the way all children, teens, & young adults are educated, both disabled and not. I am going to have an impact like I never thought I would. How cool.

Thursday, July 16, 2009

Thankful Thursday

This week I am thankful because...

  • yesterday the bus was already stopping to let people off at my stop. Otherwise the driver wouldn't have seen me in enough time to slow down.
  • 7-11 is across the street
  • my mom found my missing summer clothes
  • of my big bed
  • I'm going for botox in a month
  • paratransit's been decent
  • I live so close to everything
  • of on our own
  • of a friend named H
  • I think I've adjusted to living without a/c during the day

[image description: clipart of a pink flowery sun dress]

Monday, July 13, 2009

"I'm Not Embarassed for Who I am..."

I found this video on Terrible Palsy. I had yet to change the URL on my blogroll and was behind reading posts there. I'm glad I finally caught up.

Walk On -- 900 Miles

I'm going to keep my comments about DJ's goal to myself. I get it. I get where he's at. I was there before. I've had similar goals in fact...

The part that gets me, the part that chokes me up, is at about where there are 3mins 45secs left. "If I see myself on television I'll actually look the other way. I won't watch it... All I can say is it's just hard sometimes. It's just hard."

I'm not embarassed for who I am either, but yes, yes it is hard. Writing this I almost want to cry. I'm a bit emotional about something else at the moment and it seems to be putting me over the edge. I've never liked seeing myself on video. It's been a few years though. Maybe next time it won't be so bad.

When I'm not looking at me, when I am me (does that make sense?) I am normal. I am my normal. However, when I'm watching me I am not me, I am outside of me, and the me I am watching is not normal. She is abnormal. The me I am watching looks awkward and unsteady. The me I am does not feel that way. When I was younger if the me I was watching would have been anywhere near the me that I am, I would have gone the other way. It is easy to understand why the me I am watching gets judged by others. I can see how it is so easy to put me into the group that is "them." When I am watching me I almost want to forgive the ableism. After all, they don't know any better.

It's not like I would ever not do something because of the chance I might get on TV. In fact now it's quite the oppisite. I'm an ADAPTer; it's all about breaking down barriers. I think DJ gets that too. He's very well spoken and articulate. Looks can be deceiving. Don't judge a crip by their chair. Or their waddle & cane... We're neither normal nor abnormal. We just are. People are people. I think that's part of his point.

As an aside, why in the world did DJ keep track of his falls on his blog? Anyone else think that's odd?

Sunday, July 12, 2009

Child Life

Another hopeful future CCLS posted this on her facebook profile and it showed up on my news feed last week. I thought it would be great to share on here for people who have heard me talk about child life and have been wondering what it is.

Saturday, July 11, 2009

Crips in the News

I actually found both of these articles on AIM Zones which pops up along with my roomate's buddy list every time I use her computer. I've been meaning to post these for some time. It makes me excited to see articles about crips profiled in the mainstream. Both of the articles are from the website Good News Now, a site I wish I had more time to explore, but now that summer school has started, I've been going to On Our Own 2X/week, etc, I sadly just don't have the time.

[image description: Dr. Adam Zertal, prof of biblical archaeology at the University of Haifa in Israel, looking at carvings on a cave wall]

The first article wasn't even represented as one about a crip. I don't think it's even mentioned, but it's sure obvious in the pictures that the head archiologist uses forearm crutches. How's that for breaking barriers about what crips can/not do?

"Katrina Burgess, 17, of England, [picture right] has been recruited by a modeling agency just five months after a 70 mph vehicle crash left her with severe injuries or breaks to her back, lungs, neck, pelvis, leg and ribs." After seeing a newspaper article about her accident, surgeries, and recovery, Execs at a London based modeling agency "were drawn to her 'fresh face' and plan to use her in teenage and family-oriented campaigns."

This is the second time I've posted about a crip being discovered by modeling agencies accidentially. Both do have almost invisable disabilities. Marissa Irwin has a scar that goes down the back of her neck and Katrina has a scar that goes from her neck all the way down her entire back (see the pictures that accompany the article), but I mean, 1) how often do you show models from behind? And 2) Most of that can be covered up by clothes, hair, or photo retouching. Am I being too cynical or realistic? Should I be encouraged by the trend?

Just heard this on the radio last week. Don't Trust Me by 3OH!3 WTF??? "Shush girl, shut your lips, do the Helen Keller and talk with your hips"

Friday, July 10, 2009

AYS Day 4: The Action

Someone please let me know if my recount has some holes in it. It's been awhile. Also, I already have some photos from the action in other posts.

[image description: rolling to OCR single file, no gaps (almost)]

After a long day the day before, the last day of the summit started bright and early at 7:30am. I made it down to the lobby just in time. After a somewhat late start we left (single file, no gaps!) to roll to the nearest "EL" station. We were lucky that one of the trainers had rented a car, so he and his fiance left at the same time we did to drive to OCR to scout out where we were going since we hit a dead end the day before. I learned a lot about traveling in large groups of gimps on public transit that day. It took us about an hr and a half to get there and google maps had said it was less then 3mi from our dorm. Although that gave our scouters pleanty of time. They were able to report to us what to expect in advance--security had a stick up their ass as expected.

When we got to the complex we got very turned around and had to stop, regroup, retrace our steps, go out, and back in another door. Then our scouters were able to lead us to them by phone. Security checked a few IDs, asked us where we were going, and refused to let us go any further. We would have to leave, they said. I was a little confused during this time because I was out of ear shot of it all. Finally I guess they realized we were not leaving and a call was made to OCR. Celeste Davis, Region Five's second in command came down. I wish I could quote to you some of the things that she said, but it has been too long (geez, about a month).

Basically she told us that she couldn't make us an appt with Valarie because she did not have her calander and couldn't make appts for her anyway. So bring her down, we said, or just bring down her calander. Doesn't matter to us. She said that Valarie couldn't come down because she was in a very important 2 day conference that she (Celeste) was supposed to be in as well. It went back and forth like that for awhile. Finally she said she'd sign something that said she agreed to call and schedule a date by 5pm that day. WTF?!?! How do we know she'd call?

We all went and huddled. Some people were going to cave into that. Someone else had said to me "How do we really know she's in a conference?" I brought up that point. They could be lying. Put those 2 posibilities together and we decided it was a no go. After we showed Celeste our good and bad press releases she went up and got Valarie. "You know," I said, "If you'd just gone right up and got a calander you'd have been back up in that conference a long time ago."UGH! SERIOUSLY! Just DO IT! I was thinking. It really got me going. I love to argue.

Valarie finally came down and appologized that we were down there as long as we were. She said she would have come down right away if she knew we were there. I believe that she was sincere, but I think other people that were there got another impression. She talked about how much she liked working with ADAPT when she worked in Denver, looked over our demands and discussed them, signed them, and set up a date for a conference call on the 26th. It was a win for us that took way shorter then expected. We were out of there way before noon.

Thursday, July 9, 2009

Thankful Thursday

This week I am thankful because...

  • I found out about a super cool memoir writing class my friend is taking that I am going to check out tonight.
  • somehow I'm less frustrated when I leave On Our Own (that's the point isn't it?)
  • of the super cool new water bottle I got yesterday since I am getting rid of most of mine. Ones with big open tops spill all over me when I'm in the chair.
  • at least I can seperate my head from reality, even though I may not believe reality, intellectually I know it to be true. People who can't do that, I feel for them...
  • it seems to have stopped raining and turned into high 70s/low 80s... PERFECT rolling weather...
  • my electric bill was way lower then expected.
  • I'm wearing my super ugly "CCA Orange" hat and reguardless of how bad people tend to look in orange, it puts me in a good mood. It makes me think of POWER!
  • I'm excited to try out my shark. Asked parents for a dustbuster and got a shark instead. SUPER COOL!
  • my new iPod arm band protects my iTouch so nicely when I very carelessly drop it off the moving chair.
  • this post is super positive and putting me in such a good mood. I needed the pick me up.

*UPDATE: Memoir writing class is AWSOME!!!*

[image description: a very bad very blurry camera phone pic of my very ugly "CCA Orange" hat]

Wednesday, July 8, 2009

Our Demands to OCR

I did some quick googling and found a youtube video that explains how to put PDFs onto blogger. Go to if you're interested.

Youth09 Demands Signed[1]

As you can see, all of our demands were met, even our throw away one (the last 1). This sort of spoils Friday's post, which will be about the action, but I thought it would be neat to see Valarie's notes.

Tuesday, July 7, 2009

AYS Day 3: The Day I "Missed"

At the end of day 2 the trainers gave us 3 options for actual actions that we could pick from to plan and execute. Some people were surprised, but I was forwarned. The first was to continue what we'd already started planing and go with the curb cuts. The second was to go to a local chinese resturant and try to get them to install a ramp. Last years AYS picked that, got a promise, but one was never installed. The third was to go to Health & Human Services' Office of Civil Rights (OCR) for region 5, which includes Illinois and many states and demand quarterly meetings with the regional manager, Valerie Morgan-Alston. (yes, I'm using her full name and linking to her contact info, we need to keep her accountable) Wisconsin ADAPT had tried some stuff back in the fall and had been unsuccessful. We decided this would have a bigger impact, so we chose that one.

I'm glad I got rid of that g-d damn Zoloft. It's a bit depressing in that I was begging for it for so long and then the side effects turned out to be awful, but whatever... I missed what we did for the first hr and a half b/c I slept through my alarm and then was so out of it that it took me an hr to just get dressed. I even slept through part of a meeting that afternoon just like I did the next day. Then I "missed" the rest of the day, most of the planning (why are there no pictures?) because I was working, but not with the group.

The first thing I did was the dorm we were staying in had a computer lab on the first floor that we could use even though we weren't UIC students. Because I had decided to be part of the recearch team, I went down there to find out who we were looking for and where we were going. Then b/c I was down there I got the bright idea to find out how to get there too. I'm very skilled at using google maps to look up mass transit directions. This took longer then expected because 1) more then 1 department has there own OCR and 2) there were signs up that said printing was free, but I couldn't figure out how to print as a non UIC student, Finally I gave up and coppied everything by hand.

[picture description: We're off to do the scouting, the wonderful scouting of Chicago! Because, because, because, because, because of all the wonderful things we do! Me, D & R on the "EL" going to find the OCR office]

I don't remember how close to lunch I came back, but after lunch I was elected to go scouting with a trainer, a leader, & his PCA, so I wasn't even in the building. It took HOURS to roll to/from the "EL", get off at a further stop because the closer one was in accessible, and roll to/from OCR. Not to mention trying to find OCR in that maze. Where it is located is several interconnected buildings that has a gigantic garrage, mall, so many offices, and I think a hotel and condos. We almost didn't even get in the building as the door we wanted to get into is closed on Sunday. Then we were so lost and turned around that we eventually got spotted. We were on the mall level, which is closed on the weekend, trying to figure out if we were in the right building even when security saw us. Being that everything was closed we looked suspicious. When we entered we had noticed that a sub place had an outside enterence and was open, so we said we were lost and looking for that. The guy escorted us there the back way and then waited around to help us with the door after our purchase. So we had to buy something. I got a bag of chips and S got a drink. Mission aborted :( We never found the office and didn't even know the dirrection to go in once inside.

When we finally got back I was so confused as to what was going on. We got back right before dinner. I had missed so much. I didn't even know what our demands were and was supposed to be on the flyer team which was already almost done. I eventually got back into the loop and worked with 2 other team members to write the press releases (we had 3). It was a long day. We worked over 12hrs! But it was worth it! This was something I would have never done a year ago... explore a strange city--even with 2 people who live there...

Here are 2 more pics (and I was telling S to stop taking so many pictures):

Me & R getting caught in an elevator that kept going up and down

Coming home (at the UIC EL stop)

Monday, July 6, 2009

Back to my AYS Posts: Day 2

[picture description: we want the power! participants/trainers during the "power game"]

Day 2 of AYS was all about simulations & games. Day one was too after the meet & greet stuff. At this point I'm slightly confused about what games were what day. It doesn't matter though. We played this game called big country/little country, which I can't explain cause if you've never played it before, it'll ruin it for you. We played stand & declare (or was it stand and decide?) -- Here's a statement... T or F? Explain a bit. We learned about the history of ADAPT, what we stand for and why we do things the way that we do. I almost get the difference between an advocate and an activist. I mean, I do get it, but just not enough to explain it to someone else. We discussed the intersections of different groups. ie women, or african americans, or LGBT, or PWDs and poverty or violence, etc. We got up in groups of 4--2 ADAPTers & 2 cops. A) You want a meeting inside the building w/so-and-so & B) somebody already inside the building is out of oxygen and will die if you don't get the cops to call in some EMTs. GO! What do you do? Act it out... We also played the "power game." Someone has the "power" (a toy lightsaber) and we had to get the power from her, but we couldn't touch her (or her chair) or talk to her. We had to go through her bodyguard. We won when lunch showed up and we started bargining the food for the power. Did I miss anything else? Let me know...

[picture description: CURB CUTS NO BUTS! A picture of one of the rough spots on the curb cut at the corner]

But the thing that sticks in my mind the most, and the thing we spent the most time on during the 2nd day was our simulated action. We went around the group and came up with real life situations and then voted on the most "winnable." There's some rough curb cuts at the corner. Fix them. We went with that.

We each took roles and then had to plan out the action from start to finish. I wish I'd coppied down the list of all the jobs. There are so many! Let's see... there's the leaders, scouts, runners, sign makers, flyer makers, police contacts, media contacts, researchers, negotiators, chant leader... oh geez, what am I missing...??? Then after dinner we acted it out with the trainers playing the roles of the guy we wanted to see, the secretary, police, etc (I can't even remember all those roles at this point, wish I'd typed this earlier). One of the trainers (who is not blind) played a blind guy. Put on his sunglasses, found something he could use as a cane. He had a previously scheduled meeting; we "had to let him in." That's an important lesson. Just because he looks like "one of us" doesn't mean he is one of us. He could be blind and just not jive with our ideals, or he could be someone we're really trying to keep out in disguise. Never let someone in unless your color leader tells you to. I'm willin to bet that 9 times out of 10 they will tell you not to. Sorry... come back another day... 3 people got "arrested" but we won when we got a half hour meeting w/the guy 2 weeks from then where 3 people could come (or was it 2?). Always get it in writing.

What took me a few weeks to get (mulling it around in my head wasn't enough, had to bounce it off someone else) was why these "simulations" were so great. Invaluable really. How we learned so much that will stick with us. I've been vehemently against simulations since I ran across this article through some random internet search back in high school. Something like 6 or 8 years ago. What my friend was able to explain to me was that there is a BIG difference between simulating a skill for competency's sake and simulating emotion. emotion=pity. skill=a more productive outcome. I get it. She's right. Except... How do you know that you are simulating skill and not accidentally emotion?

[picture description: a sample of what boardmaker can do]

Summer 06 I was living with 2 girls that were getting their masters in speech pathology. They were taking an AAC class. They had to design a binder using boardmaker (pictures) and a letter board. There were paramiters about how many pages there could be and what should/could be on them. My mom came up the day they had to use them. They couldn't talk all day. They were only allowed to point. She took us all out to lunch. The 2 of us spoke and the 2 of them did not. My mom asked me why I thought that was OK. I couldn't explain it simply, but now I can--they were learning a skill they will use all the time at work.

However I never read the papers they had to write on the experiance. I can't help but wonder if they wrote about how awful it was, how frustratingly difficult it was. Yes, I imagine it could be. Except... if you were never able to communicate at all, or could and had that ability suddenly taken away from you for an extended period of time, and someone gave it back to you--not the most efficient method, but a method nonetheless--wouldn't it be incredibly freeing? When they wrote their papers did they focus on how GREAT it would feel to receive a custom made binder? Did they truely learn a skill or end up with a more strongly reinforced ableist viewpoint?

My friend answered my question very well, but she left me with another one which is more difficult to answer. How do you ensure your desired outcome? Because in Chicago I learned that simulations can be great...

Sunday, July 5, 2009

I Was on the Radio Thursday Morning (things that only happen to ADAPTers)

I was up kind of earlyish for me and was actually able to catch part of the local radio morning show while I was contemplating getting out of bed or not. They were doing this thing they call "audio twitter" that apparently they've done before. Except they should have called it "audio facebook" because what they really wanted you to do was call up in a status update format. Something interesting. No "Cheryl has a headache." Why would I call? But then spur of the moment I sprang into action picking up my cell that was next to my bed. They're in my contacts even though I've maybe called them twice in the last 3 years.

"I have a status update. 'Cheryl got caught rolling home in the pouring rain last night.'" OMG it was a tourential downpour Wednesday night, with lightning so close. At one point it got hard to tell the sidewalk from the street, the water was so high. It was really scary. I was so wet and so spazed when I got home I couldn't walk. My legs were shaking and my purse was soaked through as well.

"Rolling?" said the female DJ quizically

"Wheelchair," I replied. The whole conversation with the 3 DJs about how it's an electric chair and it could have shorted, as well as how spotty the storm was, how it really depended on your location, all got on the air.

Then one of the DJs added in this story about how his father used to get mugged all the time walking home from this bar late at night and then discovered if he dropped to the ground and started rolling around the muggers would leave him alone. WTF? What does that have to do with anything?

What's the story? Well I had gone to my second On Our Own meeting completely ignoring the fact that it might rain and intending to take the bus home. There is a bus stop right there, the bus is free for me, and I have an aging chair. Where I was is somewhere between 2-2.5miles from where I live. I'd like to save my battery.

Well I got out of the meeting to find that it was drizleing, and knowing it was going to get worse. F---! The bus doesn't come for another half hr. It's a nicely covered bus stop except it's completely inaccessible-- up a curb with no cut anywhere on that side of the street (of course they're on the other side of the street where there is no cover). After wasting 5min sitting there I realized I could wait a half hr for the bus to come by (or more if it's running late) uncovered and then roll home 2 blocks from my stop or I could gun it and roll the 45mins home hopeing to beat the worst of it. I'd be just as wet either way.

Needless to say I called and scheduled paratransit to pick me up from there Friday evening and they were surprisingly right on time. The building could be hard to find. I got home probably 40mins sooner then if I'd waited for the bus. That's worth the $1.85. I also went online and filled out a complaint form with the MTA. I'm going to be going there 2X a week. Although I have other transportation options available to me, it'd be nice to be able to have the option of taking the bus w/o having to worry about inclemient weather.

Saturday, July 4, 2009


We hold these truths to be self-evident: That all men are created equal; that they are endowed by their Creator with certain unalienable rights; that among these are life, liberty, and the pursuit of happiness... ~The US Declaration of Independance

On this 4th of July when you are reflecting on all of the freedoms you have as a citizen of the USA, remember also that there are MANY people that are stripped of their rights every day, imprisioned against their will without ever comitting a single crime. All men, means all men (and women too of course).

All photos were taken from and are from the spring 2009 national action.

Someone I know is in this picture. From the Fun Run 4/26/09

A very patriotic picture. From the Fun Run 4/26/09

Banner says:


all in yellow and CCA orange w/the free our people dude on each side. From 4/27/09

Teddy's sign says "COMMUNITY CHOICE ACT NOW!" in CCA orange. Outside the White House on 4/27/09

A sea of CCA orange crawling up the capitol steps. Who was the orange color leader? From 4/28/09

Thursday, July 2, 2009

Thankful Thursday

I'm not in the mood to write up a thankful thursday this week. I don't know why. I'll give it a go anyway. This week I am thankful because...

  • mobility (paratransit) picked me up right on time from my shrink today and although there was someone else on there that got dropped off first I still got home in about the same time as waiting for a cab.
  • I am getting my roomate's parent's old couch today. We've been couchless.
  • it's a sleeper sofa. I can have guests :-)
  • my chair didn't short circut in the pouring rain last night.
  • My shrink's office has air conditioning and I got a little repreave from the heat here.
  • I got off all of the SSRIs and feel so much better. I'm one of the 4% of people who ends up doomed.
  • I now have a much more responsive support system.
  • of google. That's all I want to publicly share at this point.
  • I'm getting to cook this weekend. It's fun.
  • today I found something I'd been hunting for.

[image description: clipart of a blond haired woman mixing & measuring. She reminds me of me.]

Wednesday, July 1, 2009

A New Theme for Summer

Does that bright green hurt your eyes? It hurts mine. Anyone know HTML codes? I can't seem to find the matching pink. That's what I wanted for my inside background color.

Wordless Wednesday

Stolen from the ADAPT Facebook group It says "How Do You Spell Power" with the free our people guy, ADAPTers marching & the Washington Monumont in the background

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