Thankful Thursday

This week I am thankful because...

• I can A/C just 1 room of the apt (although I don't know how much that 1 room is going to cost me)
• a friend actually managed to get me out of the apt yesterday afternoon for several hrs
• my new psychiatrist works full time and therefore can fit people in fairly easily
• of internet radio
• the bus has gotten so very easy to use
• I hopefully am gaining some clarity
• I found cool new food at Target yesterday (I love food)
• I live so close to EVERYTHING
• I've finally been on a regular sleep schedule
• We don't have cable

My Fav Photos of Myself From AYS (A Practically Wordless Wednesday Post)

meet & greet w/little Z

meet & greet w/A

rolling into MickyDs for a strategy meeting

I didn't ask permission to post these and will regertibly take them down if asked

From Around the Internet

White Castle Discriminates Against Power Scooter User

At first glance when I read the article/watched the video about this I had a very predjudiced response. Yeah it's an inconvenience not to be able to order fast food late at night, but should anyone be eating late at night? Should anyone be ordering fast food at all? No. So then just don't order fast food. Too bad. It's for your own good. Then I remembered Tiff's post over at Disaboom. Yes, you can get a DUI in a wheelchair If you can get a DUI driving a scooter/wheelchair, motorized bar stool, lawnmower, bicycle, then I feel like you should be able to take them through a drive through. That's my take. Has nothing to do with disability at all. I wish for her sake that she hadn't said she's "madder than fish grease" while on camera. It lowers her credibility. But what do you think? Is this claim on the same level as Karen Putz's? Do you consider it disability discrimination? Or a saftey issue as they claim?

And now for something I don't usually do--a plug for Lean Cusine. Several weeks ago I bought a few different kinds of Lean Cusines (mostly ones I'd eaten before) and on Sunday I finally got around to eating one. I was in the mood for fish and it just so happens I'd bought one. The tortilla crusted fish. I feel like one of their commercials: I had tortilla crusted fish with rice, poblano peppers, corn and red peppers in a sour cream sauce topped with cheese & OMG was it GOOOOOD! Possibly the best frozen meal I've ever had. Definately a keeper!

And now for the more typical part of my post... SOME ARTICLES!

German research points way to better anxiety drug

I find it interesting that I ran across this article during the time that I'm experimenting w/my own "crazy lady" drugs (for those that are curious, I picked up a bottle of Prozac from Target last night. Crossing my fingers...) It'll be awsome if it works. I hate the side effects of benzos. If I take some (in minute doses mind you) for too many days it makes me suicidal. Why oh why are there antianxiety drugs on the market that make people suicidal? That and I could sleep through a hurricane on them. On zoloft too apparently. An antianxiety drug designed to NOT cause extreme drowsiness? Sign me up for that clinical trial!

Dying Girl Granted Wish to see "Up"

Grab a tissue before you read this one.

700 NYC Teachers Paid to do Nothing

I've never heard of such a thing. Why don't they just pay the arbitrators to work full time? Speed up the process until they get through everyone? DUH! Would probably save A LOT of $

Next are 2 new additions to my blog roll this week. The first is JustMe, written by a mother of 3, one of which has a developmental disability and now lives in a group home. I haven't had that much time to look around there, but it looks interesting (someone else who writes about her shrink. hmmm....)

By pure accident I found out that Dan Keplinger has a blog on Disaboom now. Listen to his plea. When I get my next allowance I may give him $5. Dunno.

Lastly, I wasn't origionally going to post this, but the rational yelling thing got to me. ROFLMAO!

Get Your Cyborg Name

On Relationships: My 200th Post

It's hard to believe that in a few short 6 months I have written another 100 posts. (I need to get off of this computer and get a life) For my 100th post I wrote about things that are therapeutic for me, because blogging is also therapeutic for me to an extent. So for this post I thought I'd write about something else that blogging fosters--blogging fosters relationships (and it doesn't hurt that relationships is the topic of the next DBC).

I feel like over the last year and a half I've been blogging I've managed to gain a whole bunch of new relationships. To be honest, most of that has nothing to do with blogging, but rather a cold call I made to somewhere to volunteer (another instance of my life being the result of a complete and total accident). However I still feel like blogging has played a part in this too.

One week ago I was in Chicago at the ADAPT Youth Summit (probably about to pass out on a couch). 12 years ago if you had told my mom that I would be sitting in that photo below she would have looked at you like you had 5 heads. 12 years ago I didn't hang out with crips. 12 years ago I pretended like I didn't use a wheelchair (heck, even 3 years ago I pretended like I didn't use a wheelchair, and I'd had that Jazzy for some time already). And storm a government office building...? WHAT?!?!?!

I used to be a very antisocial human being. I used to sit at home alone watching TV all day sulking because of the awfulness that is cripdom. I still sit at home and watch more TV then I should, but at least now I'm not sulking, and at least now while I'm doing it my Jazzy is left plugged into the wall waiting to become charged so I can take it out into the world so that we can kick ass together. That still sounds so weird--someone in a wheelchair going out and kicking ass. It sounds weird, but it's not weird. It's what we do, the ADAPT army. We kick ass.

I used to look down on people who I considered to be more disabled then me. I wish I hadn't spent so long feeling that way, but I think that everybody does. I think it's a normal part of growing up. Even after I stopped looking down on people I still seperated myself from them. I'm glad that I don't feel that way anymore and I'm glad I allow myself to be seen out in public in my chair. I've gained so much from that, from all the opportunities it has brought me, all the relationships it is fostering. I just went and met a whole bunch of my long lost brothers and sisters last week, and together we went out and kicked ass. Together we will continue to kick ass. In my past life I would have never dreamed of doing something like that. In my past life I never would have fathomed feeling such a closeness, such a bond, with people I'd never met before (especially crips I'd never met before). Blogging was certainly a catalyst.

It's amazing what can happen in a year and a half...

Chicago Airport Endangers the Lives of People with Mobility Impairments (and "L" Staff)

photo copyright www.subwaynut.com

I wish I had been able to write this post the day I came back from AYS. I wish I hadn't pulled an all nighter the night before. I wish I hadn't been on Zoloft and falling asleep in the blink of an eye (literaly). Because then I could have taken care of this with all the raw emotion I had Tuesday morning that just got drained out of me. I haven't called and screamed and yelled at anyone yet, and that is wrong. That, and well, this post is going to be kind of dry now w/o all that emotion.

I have a history of taking trains from Penn in Balto to Union in DC or vice versa and just missing my train by 5-10mins & having to wait an hr or so for the next one, such as by just barely making the bus from school to Penn and not accounting that my need to use the lift makes things take longer. Should get to that bus earlier... So I guess it's not all that much of a surprise that I just barely missed my plane home to Balto from Chicago. Except that in this case I should have just barely made it. Yes I was running late as usual, but I took the bus to the train station, hopped on the train to Midway and still did manage to make it to the train station there with an hr to go before my flight. I already printed my boarding pass, had no luggage to check, just up the elevator, over the bridge to the airport, through security to get frisked w/o waiting on any line (that's what they do when you travel in a powerchair) and ZOOM over to the gate at warp speed continuously checking my watch. Midway isn't all that big. It can be done. If only it had been that easy.

Instead I zoomed out of the train station nervously looking at my watch, went through those doors above, went over to that elevator you can kind of see in the left of the photo, and it was OUT OF ORDER. Zoom back into the train station and over to a (transit?) cop. "How do I get to the airport? The elevator's broken." (He was about to point me in the dirrection of said broken elevator) Oh... "I'm about to miss my flight."

What happened next is that he called someone from the company the airport contracts with to push wheelchairs through the airport (only I didn't know that's who he called) and tried to explain to them that no, I didn't need a wheelchair, I had my own wheelchair, but...

What they did was send someone out to push my chair. You can't push my powerchair, and there is no safe accessible way to wheel from the train station to the airport w/o going up the elevator. So she radioed over. No, I don't need a chair. I have a "scooter" (that bugs me. It's not a scooter, there's a BIG difference and I'm very proud of my chair). What do you think they did? They sent over a male pusher dude. Man or woman, it doesn't matter. You still can't push my chair, and there still isn't an accessible way to go. We stand there staring at each other. They send a supervisor over. We stand there staring at each other some more. Turns out they won't do anything (not that they can do anything anyway) it's against their policy to do anything outside of the airport. The CTA staff should take care of it, they say. It's their elevator. So we go back into the train station to the CTA staff.

If you look at the picture above you will see that the elevator in question is just right outside the door to the train station, just barely, and not technically inside of the airport either. It's attached to a bridge that is attached to the airport. So who owns the bridge? CTA or the airport? I never did find out.

What happened was that a CTA staff member finally got so disgusted that I obviously was missing my flight at this point that she decided to escort me around the airport IN THE STREET b/c there was no accessible way to go. We could have gotten hit by a car. When I finally got into the airport I'd missed my flight by 10-15mins. I went to the Southwest ticket counter and promptly got put on the next flight, and after 10 exhausting hrs, a bus, train, plane, then another train & another bus later I did get home only to collapse on my new bed in my apt.

But what I want to know is why no one knows who the hell is in charge of this elevator??? When I was finally at the Gate I went up to someone working there, "I don't know if you can help me, but..." She made a call. It turns out there's a discrepancy as to whether CTA or the airport owns that elevator. Didn't get me far, but I didn't think it would. I got 2 telephone numbers I just haven't had a chance to call due to drug induced exhaustion. If I hadn't already been exhausted by the time I'd gotten into the airport from pulling that all nighter, I would have demanded to speak to someone from the airport. As far as I got was that it is totally out of the jurisdiction of the wheelchair people. Then I was just so fed up and hungry I gave up and got some food. I had some phone numbers after all.

What I learned from ADAPT & AYS is to always have a very well thought out plan A... and a plan B, C, & D. Where is the plan B here? The CTA employee that escorted me said that elevator goes out ALL THE TIME. This is a major metropoliton airport. Hasn't anyone heard of terriorism, fires, and bombs? What's all this security about? Near the trains is an easier area to cause havoc. So what happens then? What happens during a time when our national security is at stake? Are crips just not worth saving? Do we not deserve a well thought out plan? There should be a WELL THOUGHT OUT emergency plan and the CTA staff, airport people, and even the wheelchair people should all know what it is. This really makes you feel great about homeland security, doesn't it? Maybe a chair user should just roll through the street and get hit by a car? That'd make good press. Then there'd be a plan B. But why should we have to wait?

**UPDATE: N had a flight home from Midway on Tues several hrs after I did. I'm happy to report that the elevator worked fine for her. So obviously someone knows who's in charge of it...**

Zoloft

So it turns out that my oh so magical panic reducing wonder drug isn't so magical. I just spent the last few hrs in bed trying to sleep it off. That would explain why the first time I took it I was completely manic and still falling dead asleep in class. Would also explain why I was falling dead asleep in the middle of meetings at AYS. Seriously, people were checking if I was still breathing. People were totally complementing me and I missed them all :-(

So NEXT!

Congress: Add CCA as a Demo Project!

To: ADAPT From: Mike O and Dawn (Kansas and Colorado respectively)

Subject: Advocacy Alert / Act Now!

We are now, in a fight for our lives, to include the Community Choice Act (CCA) in health reform. We are working to have CCA added to health reform, as a demonstration project. What this means is CCA, the whole bill including the mandatory benefits, would happen in around 5 states. This would allow us to test the bill and provide concrete answers to the questions and issues we keep running into such as run-away costs and cross-disability services.

We must create a nationwide tidal wave to get CCA added as a demonstration project. The ADAPT army and other disability activists and advocates can lead the way to get this done, if we massively act now.

Our best chance to get this win is to get the House to add the CCA demonstration added to the House health bill. Danny Davis office has been very helpful. Thanks everyone for your hard work. Here is what we need to do:

1. Call YOUR Representative and ask that they support including a CCA demonstration project to the House health reform bill. Also, if any of the Democratic Energy and Commerce Committee members are from your state, contact them, too! The demonstration would be for CCA as a whole in around five states. The purpose of the demonstration would be to test the assumptions of the bill including that it would be cost effective, that the new cross-disability, cross-age services would work well, etc.

Your Representatives and the Committee members from your state, should contact House Energy and Commerce Committee Chairman Henry Waxman, and let him know that they support adding CCA to the House Health Reform bill. If YOUR Representative is a member of one of these committees, below (Energy and Commerce or Ways and Means) then it is incredibly important that they do this!

2. Ask your Representative, especially if they are on one of these committees, to sign the attached letter being circulated by Danny Davis.

NATIONAL ADAPT MAILING LIST - Adapt Community Choice Act List http://www.adapt.org/

Thankful Thursday

[image description: group photo from AYS]

This week it does not seem like a week has gone by at all. It seems like just the weekend has gone by. I am thankful because...

• of all the wonderful people I met over the weekend
• and the great time I had
• we had gorgous weather for our action
• I made it to Chicago and back
• I got 14.5hrs of sleep in my nice big bed after I got home
• a friend came over for dinner I have not seen in a few weeks
• I found something I was looking for
• I have a shower bench
• I have my paratransit recert tomorrow finally, even if my pickup is god awful early at 8:30am
• I have a good grasp of public transit and friends who sometimes offer to drive me anyway

AYS Day 4: During the Action & After (Practically Wordless Wednesday)

During:

Notice I'm over there on the left all awake and engaged telling people my idea for a "plan B." We didn't need it thankfully.

After:

How did THAT happen??? (since I don't know how to do alt txt, I'm asleep on a couch w/my feet up on my chair)

I'd credit the photo taker, but then that makes her googleable.

AYS Day One Continued: Anger, Emotions, & Anxiety

Some people might have noticed that I tend to pick one word, sentence, or phrase out of a whole long thing and burn it in my brain. I would look up a post and link to it, but my brain is tired and that's too much work. That is what this post is about. To sum up my weekend in one phrase: be angry (please be angry) but channel your anger appropriately. OMG! a whole group of angry people! Not angry like the stereotypical bitter cripple, but angry outrage at injustice. And not just a room full of angry crips, but angry uppity intellectual activist crips. I would like to repeat, OMG!!!!! I think I've just died and gone to heaven. And you know, I have this anger thing down. I really have this anger thing down. Down to perfection. You inadvertently push my button and I fly off the handle in a split second. But appropriately? What's that? *sheepish grin* I could use some training in channeling it.

What is it with me rambling tonight? That was not the phrase I want to focus on. The point is to expand on something someone else has said, not go off on a phrase I made up to send to someone in a text. We were talking about anger and D spoke up and said, "Anger is not a choice. The choice is what you do." OMG. D, you are a genius. I love when someone says something so simply that I have been feeling for a long time but have not been able to express in words. There are two people in particular who this post is targeted towards who do not read this blog.

I would like to expand on D's statement. "Feelings (emotions?) are not a choice. The choice is what you do with them." and "Anxiety/panic is not a choice. The choice is how you process/work through it." I do not know why I have not been able to get this through to these two people, but I am now going to add this to my list of BP phrases. Maybe it will help. It's #2 on the list. #1 is I'm NOT sick G-D DAMN IT! Do I have a fever? Did someone forget to tell me?

These two people have been telling me things such as "just because you had a panic attack before, doesn't mean you have to have one again." Like I have any control over this at all. Like I can really have control over having muscle spasms in my legs while I'm sleeping that are so bad I want to sever my legs off right below the knees.

They say these things when I am doing well. When I am in control and can recognize that maybe so-and-so really isn't out to get me (the jury is still out on this as far as I'm concerned). They say this when I tell them that this cycles. All students live on a cyclical schedule. Break, beginning, slight lull, midterms, slight lull, finals, break, repeat. I learned from a previous shrink that even months before a semester begins, when I don't know my exact class schedule, my particular workload, how often that schedule is going to put me in contact with the person/people who is/are out to get me I can pull out a calendar, count the weeks and tell you with absolute certainty, within a day or so, when it is going to be bad.

I try to tell them this but they don't listen to me. They hear what they want to hear. What they hear is that my anxiety is situational and my triggers are easily identifiable. What they hear is that this means that I don't have a separate diagnosable anxiety disorder (I agree). What they hear is that I tend to create these situations for myself, put myself into them (I also agree). So don't, they say. I can't, I try to say.

It's not that I want to keep putting myself in these situations, it's not that I'm getting something out of wanting to sever my legs off, it's that I don't have another option. I don't have another way. I don't know how. No one has taught me how. Fucking teach me how! I need you to teach me how. It is not my choice to be anxious. My choice is to be prepared for these situations. To look at a calender in advance, to know that this is a day that tends to be a hotspot and to have several tools ready at my disposal so that I can slay my monster (to borrow a term from Rob R-H). People don't choose their monsters. They learn to live with them.

Maybe it's my fault that every time I see these people I want to strangle them, to shake them, to scream and yell and tell them NO! It has the fucking power. It doesn't have to. We all know that. We all know that I have the power to slay my monster. If only I had a real sword instead of a cut out paper one. It is my fault that I haven't demanded that you hand me that sword. You have the sword. You have the education, the knowledge, the experience, the practice, and I need to get that from you. Or maybe you don't. Maybe I've just been wasting my time with you. It's my fault for trying to be polite, for trying to reason with you and not knowing that what I really needed to do was shake you and yell and scream. But I just didn't know how to do that either.

My Journey to Chicago: the ADAPT Youth Summit Day One

As all my readers know, I live in Baltimore, which for all of you not familiar with US geography is marked on the map on the left. I hope you can see the red dot. Well yesterday I of all people, who is scared shitless of going anywhere I don't know where I am due to my directional issues that go along with my disabilities (I have been known to go to the bathroom in a restaurant and become disoriented as to where the table is) flew all the way to Chicago ALONE. Chicago is marked on the map on the right. I have no idea how many miles are between them, but it is far and I have never been there before. Who woulda thunk it? And for that matter, WHAT THE HELL WAS I THINKING??? If you know me in real life you know that if I go to Target with my mom, and say she wants to look at stationary and I want to pick up a new belt (those sections of the store are nowhere near each other) I will start to exhibit minor symptoms of a panic attack in the process of finding the stationary section after I have picked out my belt.

Sorry for the run on sentences and the runaway paragraph, but I thought I should put my triumph into a frame of reference because I know that most people that read this blog do not know me in real life.

Anyway, I am very happy to report that my entire journey went off without a hitch *:D* And I wasn't even scared. I have been meaning to go to my shrink and ask her to tell me where the hell I have made any progress in the last 2 years? Haven't things actually gotten worse? I'd have to say in this instance though I have made leaps of progress in my development of independence over the last year. I'm sorry to say (she reads these) that this progress has nothing to do with anything we've done in therapy (my mom reads these too and I'm sorry to say this to her too, it's her $). I have to give all my thanks to 2 very special friends--and new neighbors--(who have expressed a desire for anonymity on this blog) for fostering my crip identity over the last year. It just dawned on me that I first met them 1 year ago almost to the day. I think it is fitting that the journey of the last year has brought me to this very spot right at this time.

I'm sorry this is all over. We've been kept busy for 12hrs straight today and my mind is more then fried. The original point of this post is to talk about my journey from my apartment at 9am eastern time until I arrived at the dorm (where I am right this second) on the campus of UIC at 3/3:30ish pm central time.

My biggest concern about traveling would have been my biggest concern whether I was traveling alone or in a group. My biggest concern was traveling with my Jazzy. Although I have had this chair for the last 6 years I have never flown alone and thus always flew with my Quickie. I had people to assist before whereas this time I did not.

Since I have never flown with my Jazzy I did not know the particulars of flying with a powerchair. I always folded and unfolded my Quickie myself and take the cushion and the leg rests on the plane with me. There's not much anyone can do to my frame. I have solid tires so I don't have to worry about them getting punctured or anything. However you kind of have to hand a powerchair over to a complete and total stranger in 1 piece and hope and pray that it comes back to you that way (notwithstanding the fact that the thing has been beaten up by me and is not in one piece to begin with). That takes some faith.

After some quick instruction on how to disengage the power steering, fold down the seat back, and oh, just in case you need to completely disconnect the batteries, the cord is that one down there with the yellow velcro, I had to get on the plane and sit back in my seat watching out the window as some guy I've never met before in my life is walking next to my chair with his hand on the joystick guiding it further and further away from me. There was a quick twinge of anxiety there but I'm happy to report that I did not have a panic attack or even one muscle spasm as I was able to stop myself. Frankly, what was I going to do? The situation was out of my hands, and the "Oh no" thought, "what if he rams it into a wall?" Is one more time really going to make a difference? (although that one more time could be the time that finishes it off). Another thing, my flight had a stopover in St Louis where I did not get off the plane and what if they take it off and dump it in the wrong city?

It took absolutely freaking forever to get the chair out of the bottom of the plane and over to me, but when we were finally reunited everything was in perfect working order (or I should say, as perfect as it was in the morning in Baltimore). It was even reengaged. I cross my fingers that it returns to Baltimore in this manner.

My next worry, or I should say my first worry, was finding my way through the airports. I can remember the utter panic when I tried to find my way through a major train station 5 years ago. But there is clear signage so that was 100% NOT an issue.

So anyway, I arrive in Chicago and my first order of business is to get something to eat. Although my new meds have screwed with my hunger signals intellectually I know it has been many hours since I last ate and I better grab a bite. I do, no problem.

Next order of business, I think I have to pee. I have to think this over. Do I really have to pee? normally in public restrooms I leave the chair outside the stalls, but this is an airport and my baggage is on the back. I have to take the chair in with me and I've heard some public accessible restroom horror stories. Thankfully I noted in both airports that there are both large mens & women's bathrooms (which I imagine have an accessible stall) as well as a 1 stall accessible family restroom. Very accessible to trans people I note, as well as dads with their crip daughters. I choose this because I will not have to maneuver around other people while navigating a stall.

I'm happy to report that I did NOT have my own wheelchair horror story. The restroom was very spacious with plenty of room to turn around and great clearance around the door. I also note that there are 2 sinks in there at different heights. There is however an armchair (why?) across from the toilet which could present as a big barrier depending how you need to approach the bars.

Next I have to find the train. This is something that would have caused me HUGE amounts of panic in years past, but like I previously said, proper sinage and past experience over the last year, piece of cake. For someone from out of town though, I could have had a major catastrophe. Train systems are all different it seems as far as the way you have to board. Amtrak is different from the DC metro which is different from the Baltimore lightrail which is apparently different from the CTA. The CTA is most similar to Amtrak where the train is not even with the platform and a ramp needs to be put in place. It looked even to me and I would have gotten stuck had a worker not walked past and noticed I looked a little lost/confused. I got on, he radioed someone where I was getting off & what car I was in & someone was right there so I could get off at my stop.

Lastly, I had to take the bus to get to the dorm on the UIC campus. The bus is something that used to cause me a lot of anxiety. I used to use the excuse that I cannot read a bus schedule due to my vision problem and that I'm afraid to get lost. While that is true, I have always known that for me to be able to use a bus I would have to be using the Jazzy and in years past I was very uncomfortable going out in public in my chair. In my mind (off of a college campus where things are obvious) I would be looked at as the retard girl and that made me very uncomfortable. Well thankfully over the last year I have come to realize I am never going to see these people again, so who gives a shit.

My biggest fear with riding the bus now is being on the wrong side of the street when the bus comes and not being able to cross the street in enough time to catch the one in the right direction. How it would suck to have to wait for the next bus. Thankfully, one of the organizers told us what store to stand outside of. I wish google maps would do that.

I got on the bus no problem and actually got my favorite model of bus. There are some models of buses where the lift is actually the bottom step and it comes out from underneath. In this model if something on the electronics is broken you're sunk. However my favorite model has a ramp that at the push of a button flips out from the floor. The bus also lowers to give an easier grade to roll up. Why I like this model so much is because it has a manual back up system in place. If the electronics do not work there is a little strap attached and out of the way. The driver can get out of their chair and pull on it and out it comes. No problems yesterday though, it flipped right out, I got on and off the bus, rolled a tiny bit further and found 2 crips in chairs sitting outside a building. This was the dorm. I was there.

The Human Rights for All Tour

US NETWORK OF USERS AND SURVIVORS OF PSYCHIATRY

PRESENTS THE

HUMAN RIGHTS FOR ALL TOUR

COMMUNITY TEACH-IN ON HUMAN RIGHTS AND DIGNITY FOR USERS AND SURVIVORS OF PSYCHIATRY

DC/MD TOUR DATES AND LOCATIONS:

Washington, DC: JUNE 24, 5:30 – 7 PM
Legal Aid Society of the District of Columbia,
1331 H St NW # 35

Baltimore, MD: JUNE 25, 12- 3 PM
Maryland Disability Law Center
1800 N. Charles Street; Suite 400

Silver Spring, MD: JUNE 25: 5 – 7 PM
Silver Spring Drop in Center, 7961 Eastern Ave.

Some of the issues to be covered in this interactive discussion include:

• Why should the US ratify the Convention on the Rights of People with Disabilities (CRPD) when we have the Americans with Disabilities Act (ADA)?
• What are the most innovative human rights principles in the CRPD?
• Which principles of the convention are especially relevant to people with psychiatric disabilities?
• How can the CRPD be used as a human rights instrument in your community?
• How you can get involved in the movement for human rights for people with disabilities.

with Daniel Hazen, Co-coordinator, U.S. Network of Users and Survivors of Psychiatry
Daniel Hazen is a survivor of psychiatry, currently working as a human rights activist, advocate, organizer, nationally and internationally. He is also active on the board of directors of the U.S Human Rights Network, and the Center for the Human Rights of Users and Survivors of Psychiatry, Inc.

Co-sponsored by: The Center for Human Rights of Users and Survivors of Psychiatry (CHRUSP), Community Alliance for the Ethical Treatment of Youth (CAFETY), Freedom Center, The Icarus Project, The Law Project for Psychiatric Rights (PsychRights), Maryland Disability Law Center (MDLC), Mindfreedom International, The Opal Project, Silver Spring Drop In Center, Statewide Independent Living Council of Kansas (SILCK), Youth POWER!

For more information, please contact Leah Harris, Co-Coordinator, U.S. Network of Users and Survivors of Psychiatry, 202-236-7747; leah_ida@hotmail.com (visit us on Facebook and coming soon to the web: http://www.usnusp.org/).

On December 13, 2006, the UN adopted the Convention on the Rights of People with Disabilities (CRPD) The CRPD represents a historic paradigm shift away from viewing people with disabilities as "objects" of treatment and guardianship to active agents in their own lives, deserving of the human rights and dignity that are inherent to all people. The CRPD has been signed by 139 countries and ratified by 53 countries, and there is a growing grassroots movement of activists working for ratification without reservation by the U.S. Senate.

Thankful Thursday

This week I am thankful because...

• I finally have the perscription I have been begging for for the last year and a half
• I now live really close rolling distance from a supermarket
• my new roomate is a great cook
• I have been disciplined enough to go to bed at a decent hour lately
• we don't have cable
• I got home yesterday before the thunderstorm started
• I already know how to get to/from the airport on the bus/lightrail as I have done it 3x before
• my cell phone actually works in this apt
• I got most of my groceries on sale
• I've been in a good mood lately

SCARY

The pop tunes mobile (pictured left)

I got to it through the child life listserv. I don't know why I clicked on the link, but I did. Mobiles can be big discussion for child life specialists. In a hospital you need all plastic mobiles for infection control purposes. Apparently the vast majority of mobiles have fabric pieces and you can't really disinfect those. There was one all plastic mobile that was a favorite and it was discontinued. So someone found this all plastic mobile by accident while looking to order some other toy. GREAT! Very exciting for professionals I am sure.

Now you're probably thinking I'm crazy. What's so scary about a mobile? The description. The description is scary. Very scary.

PopTunes infant and preschool toys play the popular songs parents grew up listening to on the radio!

Popular songs include:

• Let's Play Together
• All Star
• Wide Open Spaces

I grew up listening to those songs! Well, I've never heard of Let's Play Together, but I still love The Dixie Chicks. Wide Open Spaces is on my iPod. "songs parents grew up listening to" WHOA!!! HOLD ON A SEC!!! What happened??? When did I get that old??? Not me. Oh No.

The other day I said something to my new roomate about a friend's birthday. Didn't know what the plans were (if any). "Maybe I should call her husband," I said. Husband??? What??? I have friends with husbands??? (yes, I did say friends plural) When did that happen???

I think I'll fly off to Never Never Land
[that's Peter Pan flying off to the right]

I won't grow up
I don't want to wear a tie.
And a serious expression
In the middle of July.
And if it means I must prepare
To shoulder burdens with a worried air,

I'll never grow up, never grow up, never grow up
Not me,
Not I,
Not me!
'Cause growing up is awfuller
Than all the awful things that ever were.

We won't grow up!
We will never grow a day
And if someone tries to make it
We will simply run away
I won't grow up!
No, I promise that I won't
I will stay a boy forever
And be banished if I don't!

**Is it just me or does someone else think it's extremely odd to have little babies falling asleep to Smash Mouth songs? Well I guess as long as it's not Brittney. Excuse me while I throw up at that thought.**

Mania

I saw a new psychiatrist on Friday. Same office, different guy. In the course of the hr and a half I was there he asked me to describe what mania feels like. "It's awful. I feel like I was run over by a truck." Which, now that I think about it, is an inaccurate portrail. I feel like death warmed over. That's worse then 'run over by a truck.'

Either way, I don't think that was the answer he was going for. I'm just exhausted. I don't actually ever feel good. I mean, other then the fact that I actually get my work done in a reasonable time frame and turn it in and pass classes. That feels good. But I feel AWFUL.

I have a really good friend who was diagnosed with BP I as a pretty young kid. I once told him that if I had to choose between being manic or being depressed, I choose depression. He looked at me like I had 5 heads. It's the truth. At least I can keep up with myself when I'm depressed.

I have CP. It causes fatigue. My body can't keep up with the racing thoughts. Just the thoughts alone wear out my brain and give me mental exhaustion. Then there's actually trying to get all those things done, like my super-detailed interactive group presentation. Yes my professor and the class were all thoroughly impressed, yes we got a 14.5 out of 15 on that assignment, but did I really need to design black and white striped signs that said referee on them to tape to our shirts? Did we really need to download the Rocky theme song and that olympics music, you know, the instrumental (I also happen to have Reach by Gloria Estefan already on my iPod)? Well, maybe we did. The presentation was on motivation and music is certainly a motivating factor. But I don't think anyone would have noticed if those things were missing. I know I'm good at program planning, I know it's a strength and tends to bring out my creative side, but referee signs, a last minute wordrobe addition, was manic rediculousness.

So there's the racing thoughts and the racing around trying to get those things done and then there's the extreme anxiousness surounding the fact that there can't possibly be enough time to get all of this done. You know of course the whole world is going to end if I don't show up to class with referee signs. Anxious racing thoughts are more exhausting then just plain old regular racing thoughts and trying to calm anxious racing thoughts is exhausting as well. That requires running, or if I don't have time to gym at least walking (fastly) all over campus while listening to techno music. It helps to try to keep my body up to the pace of my mind. I have CP. That's impossible. I'm slow. Trying to match the speed of my body with the speed of my mind is exhausing because it's impossible.

Did I mention I have CP and it causes fatigue? Did I mention that I need 9-9.5hrs of sleep when I'm being reasonable with my physical activity and that when I'm crazy manic stupid and walk 1.5mi over all of the hills on this campus I probably need 12? Did I mention when I'm manic I only get 6-7hrs of sleep? Half of what I need. So I feel awful from the moment I wake up and like death at the end of the day, falling asleep with the lights still on and my clothes still on. Unbuttoning a shirt somtimes is too much for my worn out body. This is why you can't talk about people like me. Unless, of couse, you just happen to know someone else with CP & BP. Let me know. I'd love to be introduced.

Closer to Free

Just swiped this video off of Nick's Crusade after finding mention of it on media dis & dat. Hope he doesn't mind. It's a photo montage of photos from both the Sept 2008 & April 2009 ADAPT protests in Washington DC. All of the housing focused photos are from Sept and all the rainy photos and photos that look like they were taken in the blazing heat or of people handcuffed to a fence are from April. This video has good timing as I am about to fly off to Chicago for AYS in a week. Sure revs up my excitement. Oh, and the guy in the gray suit & purple tie, that's Senator Tom Harkin speaking to us in April. I LOVE that man!

Fighting For The Community Choice Act from Alejandra Ospina on Vimeo.

Anyone know why the vidoe isn't working???

New to my Blogroll

Runner Insights

Rhonda (Vision Runner), a visually impaired runner and blogger, is doing a 1222.25 mile virtual run from Montana, where she lives, to LA, where the Ellen DeGeneres show is taped. She has been running around her home town for over a month and hopes to complete the distance and get onto the show sometime in December. Rhonda is running in the hopes of getting 30,000 people to donate just $1 to Guide Doges for the Blind. Please check out both of her sites and donate. Everyone has $1.

Thanks for the story Beth!

Thankful Thursday

This week I am thankful because...

• of accessibility fetures that are around whether I need them or not such as CC, bumpy curb cuts, elevators that announce floors by voice. I am thankful those things are there for the people who need it
• my hotel room from last weekend had a roll in shower (an accessibility feature I need)
• I am in my new apt even though I am not moved in really at all
• I can still take the bus
• I finally have a double bed...
• and will not have to miss my shrink appt to wait for its delivery
• my credit card debt is becoming more manageable
• I live somewhere now where I have my own kitchen & can cook
• the number of TV channels in my apt is limited :-D
• my GREAT view should hopefully provide stress relief

[image description: a pile of mattresses]

Call Congress About LTC (It's the House's Turn)

A few weeks ago, we asked you to call your Senators and remind them to include long term services and supports in health reform legislation. Thanks to you the call-in day was a success-11,000 people called. Now, the House of Representatives needs to hear from us.

On this Thursday, June 4th, Families USA is again joining several groups who represent senior citizens and persons with disabilities in sponsoring a call-in day to Congress, this time focusing on members of the House of Representatives. We’re asking people to remind their Representative that long term services and supports are an important part of health care.

On Thursday, June 4th, call 1-800-828-0498 and ask to be connected to your Representative in the House. Please remind him or her that long-term services and supports are an important part of health care and should be included in the health reform legislation being developed. Thank you for helping get the word out about this critical issue.

Jeff Gordon
Field Director
Families USA