A Bit on Action Annapolis from OOO & MDLC

Action Annapolis 2010 was a Huge Success!

Thank you to all who attended Action Annapolis! Your efforts in participating during the event and meeting with your legislators made this year’s event a huge success. Even if you did not attend, you are welcome and encouraged to get involved in other ways, as discussed below.

We were able to increase the attendance from last year’s 80 attendees to more than 130 attendees. Consumers & advocates from all over Maryland traveled to the event, including areas in Anne Arundel County, Baltimore County & City, Cecil County, Frederick County, Harford County, Howard County, Montgomery County, St. Mary’s County, and the Eastern Shore.

Everyone who visited their legislators did a great job in discussing the Mental Hygiene Administration’s Budget for FY 2011 and requesting that no cuts be made to the proposed budget.

If anyone is interested in attending and observing the MHA Budget Hearings, they will occur in Annapolis on Thursday, February 11^th and Monday, February 15^th. Details and specific information about the hearing dates will follow.

If you are interested in providing oral testimony during those hearings, please comment here so I can forward to the appropriate people as soon as possible so that they can coordinate testimony.

If you are interested in submitting written testimony, please see the sample letter below:

*Sample Letter*

You should write 2 letters: one to the Chair of the House Subcommittee and one to the Chair of the Senate Subcommittee

The Honorable Mary-Dulany James

Chair, Health & Human Resources Subcommittee

House Office Building, Room 404
6 Bladen St., Annapolis, MD 21401

Re: Requesting No Cuts to Community Mental Health Services

Dear Delegate James:

• First say: “I am writing this letter as a mental health consumer/advocate/family member. I am requesting that no cuts be made to the FY 2011 Mental Hygiene Administration’s proposed budget. If cuts must be made, then please make cuts to MHA inpatient facilities instead of community services . . .”

• Then, explain why mental health community services are important. Talk about your personal experiences receiving mental health community services. For example, you can discuss how these community services are recovery-oriented. You can also mention how essential/important community services are to your or your family member’s recovery. If you or your friend/family member experienced difficulty obtaining community services, you can talk about how under-funded they are now and how important it is that more funding is not cut from these vital and scarce community mental health services.

• If you are recommending that funding for MHA inpatient facilities should be cut over community services, you can talk about your or your friend’s/family member’s personal experiences in psychiatric facilities. If you were treated poorly in state facilities or if your rights were violated, etc., you can speak specifically about your experiences in these facilities and how inpatient facilities do not promote recovery.

Sincerely,

(your name)

(your address)

The second letter should be addressed to:

The Honorable Edward J. Kasemeyer

Chair, Health, Education & Human Resources Subcommittee

Miller Senate Office Building, 3 West Wing
11 Bladen St., Annapolis, MD 21401

Re: Requesting No Cuts to Community Mental Health Services

Dear Senator Kasemeyer:

(same as above)

What's Your Experience of Bipolar?

These are my thoughts on the other gem brought up at OOO, this one last Friday. Someone else with a BP II diagnosis said that they've always had the depression, they've always had the anxiety (mine came years after the depression as a direct result of my failures stemming from depression), but they always felt that there was something else hanging around in the back somewhere.

I couldn't have said it better myself. I've always felt as though people's perception of BP, people's experience of "typical" BP is one where everything is fluid and co-occurring, not one where everything is it's own distinct part, occurring completely independent of one another. Even if I am depressed and anxious at the same time or manic and anxious at the same time I still feel as though they are different parts, not coming from the same place deep inside of me, albeit related parts. Maybe they don't live in the same house, they're not roommates, but rather next door neighbors, or cousins. Does that make any sense at all? Way back when I was 15/16 I knew I was depressed, that much was crystal clear, but I always felt like there was something indescribable in another part of my brain lingering around and messing me up, which was wrongly blamed on my family dynamics.

[image description: 2 ski poles. bipolar, 2 poles, get it? HAHA]

That seemed to be exactly or very close to how this person was saying they feel as well. Or maybe I'm totally projecting my experience onto theirs. I don't know, but I think it makes for an interesting blog post either way. So I'm wondering what your BP brain feels like to you. How is it similar / different from mine? Are your boundaries blurry, or are they very clear? And how have you made sense of it all?

You'll Get it if You're Jewish... (Wordless Wednesday)

Four weeks ago I received a chain email with 6 photos. These are my top 3. The first 2 are license plates:

A Virginia license plate says "B AMENSH"

A California license plate says "B GEZUNT"

A sign outside of Temple Beth Israel says "STAYING IN BED SHOUTING OH GOD! DOES NOT CONSTITUTE GOING TO SHUL"

Some Thoughts That are HARD

I had a lot to think about and process last week. Things that people said, not at all in relation to me, really reflected what is going on in my life right now. This post is a train of thought related to the first thing that was said.

So I am very excited that our OOO center is having an 8 week WRAP class starting in 2 or 3 weeks. I keep bringing it up to drum up interest, to then go "But really I hardly know anything about it. Ask P. She's in charge." I've been totally putting her on the spot all the time. But I just have to say she did a GREAT sales pitch the last time! She said, "Everyone takes many steps forward in their recovery, but everyone also takes some steps back. WRAP is a tool to help you start taking steps forward again."

I got an upsetting email a week and a half ago that I have since responded to and taken care of, but I hadn't yet at that point. Her comment kind of hit the nail on the head. Hey, I'm human. I do stupid things A LOT, probably more then most people, but still, I'm human, and it is human to do stupid things. The important thing is that I'm taking some steps forward right now. A professor of mine, as well as Jonathan Mooney, once said something very simple, "Do the next right thing." I still have the print out she gave me of that somewhere.

It is important for me to focus on the fact that I am attempting to do this right now, although it is HARD to undo damage and heal scars. It unearths old wounds that are hard to deal with. I have to focus on the fact that I have a short range plan right now that I came up with all by myself :-) I have to focus on my support. I have to focus on the fact that in the last 2 weeks or so I have noticed some ENORMOUS progress (that unearthed some wounds, but hey, what can I do). I have to focus on the fact that I KICKED ASS in Annapolis last week.

Back in November SocialWorker24/7 wrote that "Therapy is a sloooooww process for most people. It requires a lot of baby steps, backwards steps, and no steps." At the time that she wrote this I was frustrated with my no steps. Now I am torn with my forward steps because they HURT and they are leaving me raw.

I received my diagnosis 26 months ago. I keep waiting for life to become easy, or at least easier, and it has not yet. I still feel stuck--as stuck as I did when I was 15. To borrow a phrase from Rob, now that I know what my monster is, why can't I tame it? My monster won't ever go away, in fact I actually don't even want it to go away, but it would be nice if it wasn't so damaging. I want to be able to work it to my advantage, as opposed to feeling as if it has all the power over me. As opposed to it always wreaking havoc on my life.

[image description: My Pet Monster was a popular toy in the '80s. We had the orange one, which this is a picture of. You can see the cuffs of the shackles in this picture, but unfortunately not the chain that broke apart in the middle when you pulled on it, just like the ADAPT dude!]

Pill Swallowing Techniques

I have always known that if I attempt to take most medications before I am fully awake I will aspirate on them. I knew this even before I had ever heard the term aspiration or knew I had a problem aspirating on thin liquids. My parents never picked up on it and neither did any professionals, but they generally weren't around to see me drink. I also have never had pneumonia. Aspiration is common with CP because of compromised muscle coordination. I learned that I aspirate on thin liquids quite often while I lived with 2 speech pathology grad students, one of whom now does feeding therapy with adults for a living.

This lead to unintentional med non-compliance years ago (which later lead to intentional med non-compliance) because I couldn't take them first thing and then would be rushing to get out the door and forget about them until I was a few blocks from home. So at the time I was forced to use a purse in addition to coat pockets/my backpack so that I could keep my pills in there with me at all times. For awhile because I was not used to the extra bag I would leave my purse places and have to run back and grab it.

Even though my keys are always in my purse (thus what's the difference between attaching your pills to your keychain or just throwing a container in your purse) I have become very fond of the blue pill keychain to the right. A friend of mine got one for himself several years ago and I fell in love with it. I'm on my second, as I lost my first on the DC metro coming back from my day at the fall 08 national ADAPT action. So that solved that problem (the problem of not having them with me). Even when I have been out and my purse has been soaked through my pills are still dry. It's great.

But that of course does not fix the fact that I aspirate. It does not prevent me from every so often not being able to swallow one or both of my pills. Saturday I took them right after lunch, as I do most often, and had a slight gag as soon the 2nd one hit my tongue (not so unusual for me depending on my level of alertness). This time, although the gag reflex was not that big, I threw up part of my lunch when coupled with attempting to swallow fruit punch. I have not done that in about 5 years or so, and that time I had really over eaten. I don't know what happened because a few minutes later I took another one out of the bottle and I was fine. No gag.

So I am looking for ideas on how to make pill taking easier. I once tried burying one in a spoon full of pudding, but that didn't seem to jive with my swallowing muscles. Neither would coating them in olive oil I think, but I've never tried that. I've been thinking on and off of purchasing an oralflo cup, but now that I think of it, when I am doing well, when I am leaving my apt, I mostly don't take my pills at home. The whole rushing out the door thing. I'm not going to carry an oralflo around.

A Legislative Alert From MDLC

Sorry I took so long to post.

LEGISLATIVE ALERT

Senate Bill 28 - Election Law - Voter Qualifications - Individuals Under Guardianship for Mental Disability

Did you know that under Maryland law an individual who is under guardianship for a mental disability is NOT eligible to register to vote?

Senate Bill 28 strikes the language that bans a person under guardianship from voting. This is a great step in making sure that Maryland does not exclude an entire group of individuals with disabilities from the voting process.

• In 2001, a federal district court struck down as unconstitutional Maine’s prohibition on voting by anyone under guardianship by reason of mental illness. Since that decision, several states have corrected their election law language that bars individuals with disabilities from voting. In fact, there are ten additional states that do not have any voting competency standard including Colorado, Idaho, Illinois, Indiana, Kansas, Michigan, New Hampshire, North Carolina, Pennsylvania and Vermont.

• In 2006, the Governor’s Transition Election Work Group recommended that Maryland correct the election law language that broadly denies this specific group of individuals with disabilities the right to vote. The American Bar Association has made a similar recommendation for states whose statutes exclude persons with disabilities from voting on the basis of guardianship and election laws.

• In November 2009, the Maryland Department of Legislative Services issued a report that highlighted the possible constitutional and federal law challenges to laws similar to Maryland’s. The report also noted the conflict in Maryland’s law which in one provision states that guardianship does not modify any civil right of the individual unless the court so orders, yet in another provision states that a person loses the right to vote automatically upon the appointment of a guardian.

It is time for Maryland to address the exclusion of individuals under guardianship from exercising the fundamental right to vote.

Please consider supporting SB 28. Come and testify and show your support or consider submitting written testimony In addition, if you know someone who is not able to vote because of guardianship and would like to testify please let us know.

Hearing Date: Tuesday, January 26, 2010 at 1 pm

Where: Senate Education Health and Environmental Affairs Committee

Thank you for your support.

I Meant to Write a Thankful Thursday Yesterday

[that's a picture of the MD state house to the left]

The day just got away from me. Wednesday was a GREAT day, the best I've had in a long time. Wednesday I went to Action Annapolis. I was bursting with so much greatness that I just have to share. I am thankful that

• I was able to get up and out in time to make my 6:45am paratransit ride.

• My 6:45am paratransit ride was on time, as was my 1:15 and my 5:03 was early! It is so hard for drivers to find anything in Annapolis... My 9:15 came @ 9:51, only 6mins outside the window. Not bad for 4 rides in a day!

• I told a friend I would either show up @ 8 or 10, nothing in between. I got there @ 8:05 for an 8:30 arrival time so I was actually EARLY to something in Annapolis on a Wendesday (their busiest day)!!!!!!!

• "Policy educating" always gives me such a rush and reminds me of my innate power to get things done; I'm totally pumped up for school on Monday!

• I also got a super cool button, my favorite of all 9 on my purse. 10 cents makes sense! That's in reference to the alcohol tax bill.

• I hang out with some of the coolest most passionate people now! If you can figure out who you are (there are quite a few) I <3 u

• I now have a mission when I go for the guardian voting bill hearing on Tues: bug the hell out of Mike Miller, the head of the senate, who has decided that there will be no tax increases in an election year. Not if I, or the army of supporters have anything to do with it.

• I was confidant enough to take the lead when talking to senators and I WON'T TAKE NO FOR AN ANSWER!

• People @ OOO seem to be able to understand me when I am so tired that I cannot even keep my head up. Getting up @ 5am is just not my thing and I took my meds so early they wore off not long after I got there.

• People @ OOO don't seem to be bugged that I frequently use my time for public policy "commercials."

I'm hoping that frequent trips to Annapolis and/or DC this year keep me jazzed, pumped up, and distracted enough to kick those losers at school in the ass! Depression sucks...

SO TRUE! (An Almost Wordless Wednesday)

A parody of a motivational poster series shows a girl that looks about 11 surrounded by 7 yellow lab pups. The caption says ANTIDEPRESSANT You're doin it right.

Found through the blog If you're Going Through Hell Keep Going

11 Sentences on Illness vs Disability

My uncle, a practicing psychologist, and I were emailing about mental health stigma a few weeks ago. The conversation has been interesting, to me at least. Here is part of our conversation, which is more of my same argument (at least along those same lines) although much less of a rant and more of a thoughtful reflection.

Most people I hang with like the term mental illness, but I HATE IT! To me, if you are sick you take medication and it not only gets better, it goes away entirely. I prefer to think of it as a chronic condition because it will always be there. I have psyc "issues" for lack of a better term, or a psychiatric disability. I even use the term dual diagnosis sometimes which really throws people off. No, I'm not an alcoholic, but I have 2 very different kinds of disabilities that both impact each other greatly. They don't exist independently, are not mutually exclusive.

I have found though that most people who have a psyc diagnosis are scared of being labeled as "disabled" because having a disability is something bad, something that makes you less than. An illness however is something that everyone has had, something everyone knows. It can be equated with the flu, and catching the flu doesn't make you less than someone else or a bad person. I think illness is a more comfortable term for people b/c it's familiar, and I guess disability is what has always been familiar to me.

ADAPT Community Media Survey 2010

To the disability community and allies:

Happy New Year! ADAPT is working to improve our outreach this year so that we can continue to organize like never before. Help us learn how to stay in better touch with you by filling out a short online survey. Understanding what people know about ADAPT and our communications will only help us all better work together. In addition, there is a space for any general feedback that you would like to give ADAPT.

One lucky survey participant will win a free Chicago ADAPT t-shirt with the original logo by Anna Stonum and the slogan “ADAPT or Perish!” If you want to be considered for the t-shirt prize, you MUST leave your e-mail or phone number in the comment box for survey question number 10.

To go to the survey online, please click on this link: http://www.surveymonkey.com/s/QTVMQXF. If you have trouble accessing the link or the survey itself, please contact Amber Smock of Chicago ADAPT at ambity@aol.com.

The survey will be open online until 5 pm CST Tuesday, JANUARY 26. We value your feedback and look forward to working with you to FREE OUR PEOPLE in 2010!

The ADAPT Community

PS: Please forward this email to anyone you may know who is interested in ADAPT's work!

Always Carry Your Card While You're Out with Your Flair

So I was heading out to On Our Own last Friday (which turned out better then expected) and I stepped onto the elevator. A woman was already on, I'm guessing about 28, and oddly enough I just got this vibe from her. I only speak with 4 people who live in my building and sort of know 3 others. This building has 19 floors. A person could always use more friends, and hey, she's my age-ish. Should I say hi? I couldn't tell if she was eying the buttons on my purse or her hands that she was rubbing lotion on. Part way down she looks at me, "Tell me about your button."

"Which one?"

"Human Rights in Mental Health."

I told her very briefly that $17 million have already been cut from the state mental health budget and I'm part of a group that is going to Annapolis on the 20th to talk to the legislature to try to get them not to cut anymore. She used to work with kids in mental health she said, was really interested, and actually wanted my number, as she was on her way out. So I reached into my purse and grabbed my card. Told her my email is wrong but the number is right. I am so glad I always have some in the pocket on the outside of my wallet!

[the picture of 6 cartoonish silhouetted people in various colors, the one on the far left in a wheelchair, is on my card. Not what I'd prefer, but there is so little disability clipart out there.]

I tend to be awkward at starting conversations / have trouble knowing how to be appropriate with my activist ramblings. Social cues aren't my speciality. Buttons. Who woulda thunk it? She has my name because it's on my card, I just wish I'd gotten her name. :-( I also wish I'd given the grocery store cashier my card. Didn't think of it and I haven't seen her...

Anyway I hope this person does call me (she hasn't yet) and I hope she'll drive. I HATE TAKING PARATRANSIT TO ANNAPOLIS, especially on Wednesdays.

Disability Blog Carnival #62: HOLIDAYS

For once I have finished a carnival super early and not just under the wire. Which is good for you that you have so much more time to read it, because I've put together a lot of great posts. Are you as excited as I am? I'm not quite as excited as a 6 year old on the first night of Chanukah, but it's close. So I won't keep you in suspense any longer. Without further ado, here is Disability Blog Carnival #62: Holidays

General Holiday Posts

Ricki's Mom shares some ways to adapt holiday materials so that kids with intellectual disabilities can celebrate just like everyone else.

New Years

Heather, my real life friend and a reluctant blogger, recently took the time to post her goals for 2010 in her post New Year... new start. Please go visit and encourage her to blog more often.

Kathryn shares maybe one of the greatest accomplishments of all time in her New Years post. You have to click to find out what it is...

Easter

Jen posts 2 pictures of her daughter Jordan in her Easter dress. One picture is of Jordan and the other of Jordan and 2 new friends. Does that dress come in my size? I don't care which color. If you go to Born Just Right you can also find great posts about Jordan's Christmas dance recitals from both 2008 & 2009.

Passover

To throw in a little more Jew, I'll include my post where I talked about the connection between this Jewish Holiday and disability rights.

Halloween

Ellen shares the process of making Max a ur-ul ahr (that would be purple car) Halloween costume out of a shopping bag and some poster board.

Rob's got pictures of another cute kid in a Halloween Costume. It's Schuyler as Amelia Earheart.

Cheryl (another one) has a lot of great posts about her family and various holidays you should go find, but I thought I'd draw attention to a post about the kids she works with. Check out Pink Pumpkins and Grief Group. Cheryl's grief group also sold candy canes for the Leukemia & Lymphoma association.

Thanksgiving

Jenni shares an acrostic in her 2008 Thanksgiving post.

Having tween daughters sure threw a wrench in Christine's holiday (or maybe we should blame Starbucks)! Since when did having a disability have to have anything to do with it?

Christmas

Boy are there a lot of christmas posts

Glenda writes about how going to her husband's follow up doctor appointment reminded her of a Christmas memory from her childhood, in her post Taking Time to Savour a Deja Vu Moment.

In a very old post that obviously made an impression on me, Tiffiny gripes about changed expectations in her post If I Could Walk, I'd Definitely Have to Bring the Christmas Ham.

Deborah shares a GREAT Christmas picture of Ashley in her post, Merry Christmas to All.

Blake posts about how this Christmas he was faced with his loss of function from SMA head on. Or should I say hand on?

Kali submitted 2 posts to this month's carnival. In the first she contrasts the Christmas experiences of her family verses that of her boyfriend's. The second is full of funny stories about her service dog.

Laura compares Christmas past and Christmas present. Her holidays seemed to be most notably marked by whether or not she was in the hospital that year (boy can I relate). I'm glad this year was calm and hospital free!

Danielle comes out of her very long blogging hiatus just to write her carnival submission, simply titled Holidays. She writes about her son Jordan and the joy she could have never imagined experiencing several Christmases ago.

By all accounts Elizabeth didn't have the greatest Christmas this year, but she very proudly proclaims "I'M NOT DEAD YET!"

Terri writes about the difficulty of buying Christmas gifts for her Queen Teen who is intellectually disabled. She wants items that Queen Teen will both enjoy and that are age appropriate. I think Terri did a GREAT job this year!

Other

This is the last post anyone's seen from Kara in quite some time. I imagine she's rather preoccupied and I'm sure the ways she celebrates her holidays will change. Congrats Kara & Adam!

Irrational Point has coined a great phrase: lame-ification. What is it? It is a subset of ableism wherein a TAB (temporarily able bodied person) tries to cheer you up when you don't need cheering at all.

This is totally cool. Jacqui posts about finding a tandem bike that she can use with Moo.

PHEW! I think 24 posts are more than enough. Hope you've enjoyed. I think that February's carnival is being hosted by Kathryn over at Ryn Tale's Book of Days. Can somebody confirm?

[oh yeah, the picture at the top is the same one as the intro post]

A Quote

The week before Christmas one of the facilitators at On Our Own brought in candy canes taped to some thoughts he and his family had come up with for the members of the group. Many of them are horsey as both him and his daughter ride (SO JEALOUS). Here is one that I think is very applicable to many readers and others with psychiatric disabilities as well.

The trail is sometimes rocky, but the place it leads to is beautiful. ~D.R.

[Unfortunately I don't have a scaner, so I had to take a picture of part of a picture & it's a bit blurry, but that is me, taken roughly a decade ago, riding Pro, a chestnut thoroughbred mare with racehorse lineage, back to the barn after a trail ride.]

New Magazine for PWDs to Launch

Last week I linked to something from one of the Baltimore Sun blogs. I thought I would post it too, because it's pretty cool.

The Baltimore nonprofit The League for People with Disabilities Inc. has joined with the publisher of i.d.e.a.l. magazine to distribute a new quarterly magazine about and for those with disabilities. The official launch is scheduled for Jan. 15.

The League has a print shop and bulk mail house called League Industries that will serve as the official printer and mail house for i.d.e.a.l. magazine. That stands for Individuals with Disabilities Express About Life.

“i.d.e.a.l. magazine will create a new and positive image for young people with disabilities and, hopefully, help eliminate the stereotypes among people with disabilities in society,” said Zarifa Roberson, the magazine's founder and chief executive.

She wanted to start the publication so people with disabilities can express their opinions on all areas of their lives, something they normally do not get to do in a public way. She wants the magazine to be the voice of the disability community.

The League’s president and chief executive, David A. Greenberg, said, “We currently serve over 2,000 individuals and families with various backgrounds and interests and opinions. It’s great that Zarifa is putting together so many voices and stories to show the diversity and extent of ideas and opinions within the community of people with disabilities. The possibilities for stories and articles are endless.”

For more information, call The League at 410-323-0500 ext. 304, or go to http://www.leagueforpeople.org. The League for People with Disabilities Inc. was founded in 1927 and provides services to help people with disabilities gain independence, increase self-sufficiency and improve quality of life.

Anyone Else Think This is Wrong?

My school 2 years ago or so opened up the Center for Adults with Autism Spectrum Disorders (CAASD) that is associated with the College of Health Professions (code for the occupational therapy department). It's cool that someone recognizes the need for services and supports for a growing population, however, I have heard from someone on the spectrum in this age group that they often miss the mark. When I was in Disability Support Services in December I noticed there was a flyer up about their "Girls Group" which is "an integrative setting for young women ages 18-28" with ASD. Any feminists have some thoughts? On the monthly calendar posted on the CAASD website they list it as the Women's Group, thank g-d, but that flyer still rubs me the wrong way. Ableism anyone?

*A Reminder that today is technically the last day to submit to the DBC (I'll grant some leeway)*

If a Tree Falls in the Forest...

and no one is there to hear it, does it make a sound? If I have a nightmare and wake up in the middle of a horrible panic attack, did I really have a panic attack at all? You know, cause if no one saw me, I must not have had one. [image description: a fallen tree in the forest]

I haven't done a bipolar post in awhile, so I think I shall.

To continue from my last post, I thought I'd comment on another note in my DSS file, this one from September 2008, written by the current person I am working "with" from there. I copied the note originally because it contained reasoning for the denial of a note taker due to my need to leave class during panic attacks (the justification at that time makes some sense). I must have just stopped reading it there, knowing I needed it in order to be able to succeed at properly overturning that decision. It wasn't until I was flipping through my papers in the cab on the way home that I noticed what was written further down in that note. I almost started laughing in the cab, but I had to contain myself.

I was laughing because the note was written by someone who is an LCSW-C (licensed certified social worker clinical). The note actually says that "no faculty have reported witnessing 'panic attacks'." (the words "panic attacks" were in quotes throughout the entire note). It was as if to say that since no one has ever seen me have a panic attack I must not have ever had one. Especially with that whole quotes thing going on. I'd really like to know who it was that decided this person should be licensed. They should have that ability taken away.

Take a look at the diagnostic criteria for a panic attack. How many of those can you actually see? You only need to have 4 symptoms out of a list of 13; it is therefore entirely possible for someone to have repeated panic attacks that no one ever sees. The fact of the matter is though, that with me you can see it. You just have to know what you're looking for. But until you have the training and experience to notice the difference in my spasticity levels without even looking at me (I have a doctor who could notice me in the tiniest corner of her eye); until you can spot the difference between how my hands and arms are positioned, the decrease in the range of motion in my knees as I attempt to be able to exit the room; until you realize that my neuromuscular disorder impacts the presentation of my panic attacks; until you realize that I'm 24 and not 5 and I have the sense to leave the room before I start hyperventilating, you need to just keep your damn mouth shut. The people that pass me out in the hallway ask me if I'm ok. Maybe you should consult with them?

I laugh every time I so much as think about the notes in my file from that woman, because if you can't laugh at the absurd situations in your life you will never survive. This situation is absurd because what LCSW-C doesn't know these things? It's absurd because of all of the other interactions I've had with this woman. It's absurd because of other notes she wrote in my file, such as the one from this past May, where she talks about counseling me about "being emotionally available to learn."

I just looked at my shrink, "Can you tell me when I'm going to not be bipolar, because that date would be helpful for me to know."

Everyone CHECK YOUR FILES!!!

I don't mean computer files, I mean check the info said professionals keep on you. Check them yearly like you're supposed to check your credit score.

[image description below: 3 file folders. When I searched for them I found a flash drive shaped like a file folder. How cool!]

I received my admissions letter to transfer from a 2-year to a 4-year school in November of 2005. November 4th to be exact (I remember because we were supposed to move that day). I registered with disability support services at my new school in November of 2005. I gave them just 2 pieces of paper as documentation, a copy of my current memo with the accommodations I had at the school I was attending, and a letter from my physiatrist, not even one page long, attesting to the fact that I had a diagnosis of cerebral palsy. And all was right in the world.

When I was finally formally given the correct psychiatric diagnosis, which took a bit of time between October and December of 2007, I did not do that. I verbally told people (professors, DSS staff, whomever) what I was dealing with and probably sent them an email or 2. I did nothing more as I was not asked to do anything more and did not think it was necessary. Nobody was questioning me. That was a mistake.

It is now 2010, 25 months after the fact, and it is a big mess. After having a small feeling that I needed to update my accommodations spring semester 08, I finally realized fall 08 that this need was desperate. I've had to jump through hoops. It only took 9 months of continually being denied an accommodation I have every right to receive to even find out that they would not do anything at all because actually they had no proof that I have this diagnosis. No documentation in the file. Good grief! Said documentation was faxed in about 2 weeks later I would say. That was this past June finally. No just handing them a piece of paper, "Cheryl has been diagnosed with bipolar II disorder as of such and such date and it affects her in this way. Please call with any further questions." That's basically how the first one went, but it's just not good enough this time. They had a 3 or 4 page form.

I did not go to school this past fall semester. I just didn't have it in me to keep up the fight. So we skip to the first week of December when I went back in there on an information quest. I needed to decide if I was going to give this school thing one more try. I was told that they still could not modify my now 4 year old accommodation memo because the documentation submitted in June was incomplete. GAAAAHHHHH!!!!!!! Does it have to take SIX MONTHS to tell me this? Later that afternoon I sent an email requesting an email back with my latest memo attached. I needed it to reference in order to be able to complete what they were asking. I never got it.

Finally I decided I'd had enough of this. I remembered back a year ago when I needed very specific documentation in some other completely separate matter and had to get it from my vocational rehabilitation case manager. That documentation ended up coming in the form of a confidential interoffice memo pertaining to my neuropsyc testing results from 2005 that I was never supposed to see. This memo would have been incredibly helpful to have seen in 2005, as I have been classified in all of their documentation since that date as having a mood disorder (not specified) and I had no idea! Remember, my bipolar disorder diagnosis came in 2007, and I had gone all that time thinking I had a much milder diagnosis then their stuff said.

My point about this being that I realized if I wanted a copy of 1 sheet of paper I was going to have to physically go there and get it, and as by this time I was getting such a convoluted run around, if I was going to go through that effort I might as well request access to my entire file and check out what they had on me. A lot of it was crap. There was once an elevator outage in a building I had class in and I had emailed to find out how long the repairs would take. That was printed and filed. However, I did find interesting stuff as I suspected and ended up coming for 1 sheet and leaving with 9.

Now this is the really important part. I've had a concern since the summer of 2006 or so. Something school related but not at school. It took me a LONG TIME to finally verbalize my concerns as I wanted to believe they were all fabricated in my head. It took about a year and a half or so. I verbalized them after someone at school approached me about a situation more directly related to school. They said it "didn't go well." When I asked what "didn't go well" meant they said they didn't know. I pressed on and off over 8 months and finally gave up with them as a lost cause, even though I just knew they were hiding something. People not at school but related to this were equally or almost equally as vague. A year later I got the guts to pursue this with someone else not associated with school and she told me stuff I already knew, but I also had this feeling that she was being evasive and hiding something. I cried after that phone call.

You know what I found in my file? A typed note with details from a phone call between my then DSS case worker and my then academic adviser from March of 08 that flat out said what "didn't go well." Guess what it was? The stuff I already knew and nothing more! So why has this been hidden from me for a span of over 2 years?

This lack of information has contributed to exacerbating depressive states twice over this 2 year time span (fall 07-winter 09). When I don't have all the facts I tend to fill in the gaps with things I invent in my head. I think all people do this. I however insert the worst. Because they had not been straight with me I assumed something much worse had occurred in addition to what I knew. Something so bad it was too awful to tell me. Nope. But all this time I had assumed that I had some sort of horrible defect, that maybe I had done irreparable damage to another human being or something along those lines. They (both the school and not school people) totally wrecked my self-concept. Made me feel hopeless. How would you feel if you thought you did something so horrible no one would tell you?

Instead they identified a defect (for lack of a better word) that I had self-identified a long time ago and had finally decided to actively work on about 6 weeks before the whole thing went down (in the interest of full disclosure, I was in a manic state so I had the guts to go for it finally). They'll never know this because I was only able to work on this issue for about 4 weeks before entering into the worst depressive state I've ever been in in my life. Because they weren't straight with me I never had the courage to pick myself up and try again. I just gave up entirely, even though this was something I had been wholely invested in improving.

Because they weren't straight with me they may have done irreparable damage to me.

So everyone check your files! You never know what's in there that you should have known 3 years ago.

An Observation

I was in Barnes & Nobel a month ago, which was a huge feat that I was able to leave the apartment for as many hours as I did, particularly that day. I went to read books I didn't plan to buy and put them back. I know I'm not the only one who does that. Anyway, during the holiday season B&N lets charities come in to do gift wrapping and keep the proceeds. When I was there it was the local Golden Retriever Rescue. There were 2 dogs there. As I was rolling through the store I thought of the golden, Avery, who lives in my building. He's a seeing eye dog. Then I thought of the woman who he belongs to, who is obviously blind, and the fact that I was in a bookstore that sells print books. I started to think of how weird it would be for someone who is blind to be in a bookstore. What would they be there for? Bookstores don't sell books in braille. Neither do they sell large print I believe. I guess, now that I think about it, they do sell audio books.

I wonder why bookstores don't sell braille books. Why can't a bookstore have a braille section between the cookbooks and the biographies? Why can't bookstores have a large print section between Latino and marketing? The problem, what would they stock in a relatively small section? The current best sellers I guess. But when do you decide to send unsold books back and restock with newer bestsellers? An issue, but not one that is insurmountable. Another bookstore question, if bookstores can have African American, GBLT, feminist, Latino sections why can't they have a disability culture section in there too, if even just a shelf?

[That's Avery and his mom, above, at work. Picture swiped from today's Baltimore Sun article]

Teens/20-Somethings: We Need Your Help!

A friend of mine who is an ADAPTer that I met at AYS/last April's national action posted the following Facebook note a half hr ago. Any ideas, please post a comment here and I will forward the answers to him. I will also post my own answers after I give this a little bit of thought.

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Hey all, I got an email from the Human Services Research Institute in Portland, OR. They're planning a series of national conversations on issues for young people with disabilities, and would like input on 4 questions.

1. What are the 5 most important things for youth and young adults (14 – 30 years) to have in their lives?

2. What are some challenges that they experience in lives (school, community, work, relationships, etc.)?

3. What would they like to hear about most on these National Conversations? Are there topics we need to talk about that they feel are being left out of our conversations when we talk about supporting young people to achieve their personal goals?

4. Any other input regarding the information provided or the way in which it is provided during these calls?

Any input I can forward on would be great, their deadline is Jan 8th

The calls will be in March April and May

It's [Inter]national Delurking Week!

I know there are many more people that read my blog and don't comment than people who read my blog and comment. I want to meet you! So make a New Year's Resolution to start commenting on the blogs you read. There isn't a better time to start. The 6th (?) [Inter]national delurking week starts TODAY and goes until January 9th. Happy posting! While you're at it, why not submit to the January Disability Blog Carnival as well.

I found out about Delurking Week randomly through a google image search back in April. This image above looks like a ransom note (letters cut out of a magazine) and says "IT'S DELURKING WEEK. YOU KNOW WHO YOU ARE. NOW TELL ME. LEAVE A COMMENT AND NOBODY GETS HURT"