Towson University DSS, WTF?!?!?!

This video was posted on youtube on Monday. I found it on my Facebook newsfeed last night. Thanks Paula D-W. Here's an article about it. This situation sadly doesn't have me all that surprised. I haven't ever dealt with the Dean of Education, as I wasn't ever an education major of any sort. However, I have dealt with several high up Towson University officials and 3 different people in Disability "Support" Services (DSS). (yes that is me on the cover of their brochure, and I wish I wasn't anymore). My baggage from this post (#12) is strictly from someone I will not name whom I doubt this student has come into contact with. They strictly divide caseloads up by diagnosis over there.

But, I do know the head of DSS quite well, and I am sure they have come in contact with each other at this point. I am wondering WHAT THE HELL ARE YOU DOING?!?!?! Or I should say NOT DOING. Again DSS is not supporting a student, as their name implies wrongly that they do, but are probably aiding in using this student's diagnosis against her, as was done to me over a year and a half by the person referred to in the post I linked to, not the director. If they are not doing that (MIRACLE) or even if they are, they are most likely standing idly by and not advocating for the rights of this student and the children with which she worked, saying it is not their problem, or just trying to make her go away because it's easier not to deal with her. Telling her to just come back another semester, not realizing the damage that does, dismissing someone.

Of course I am projecting my 3 years of negative experiences onto a situation I know very little about, but I don't see where it would hurt to email DSS to try to light a fire under their ass. They should be working to rectify this and it just sounds from the video like they are not (again, not surprisingly). So, their contact info is here.

Towson University: EPIC FAIL

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

Here's the story:

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

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

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

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

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

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

I raised my hand but it was very clear he wasn't going to make eye contact, so in my "I am so much more then displeased" voice, I just cut him off. "I have a question. Is there anyway to get back there without having to go up a flight of stairs?"

"No. No there isn't. There used to be. There used to be a lift and I don't know why they took it out, but they took it out... This was the only room we could get for tonight."

After the movie when I got to the director & associate director of DSS their answer was

"We just found out about this and had nothing to do with the planning of it."

FAIL. EPIC FAIL. You're DSS. That answer doesn't fly with me.

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

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

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

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

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

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.

My Life is a Boomerang

So my acupuncturist I was so happy to see, the one I was so happy had a $20 copay and was across the street from school, won't see me.

says you: why not?
says me: she says there's nothing she can do for me. says my issues are therapeutic issues so she kicked me back to my shrink.

The first guy I saw, who was way further away, did not say that, but I did not like him and will not go back. So do I see another acupuncturist or do I just give up? Right now I just want to cry or tear my hair out. Either one will do. See there is a history of this regarding me.

I kept being referred by professors to disability support services for school related anxiety. After I got diagnosed with bipolar II they bumped me off the case worker I'd been working with and onto the caseworker that handles the psyc students. She's an LCSW-C (the same thing my shrink is). Whole thing makes sense, right? Except she keeps telling me that my issues are therapeutic issues, not her issues, and every time I met with her she kicked me back to my shrink, leaving me with roadblocks she should be more equipped to deal with.

Then there's my physiatrist. The one doctor I have who is never allowed to retire (unless I die first). She's doing her job to the best of her ability, but it's not enough. She's supposed to be the one that coordinates everything, used to, can't anymore cause this is completely out of her element. The one piece she has complete control over is my pain management. Like I said, she's doing her job to the best of her ability, it's just not enough. She gives me as much botox as a person can have. I don't want it to kill me. She's given me pills that help, but they too have life threatening side effects if I take as much as I need when I'm in a serious anxiety crisis. She too says my pain has origins that are of therapeutic nature and kicks me back to my shrink. This at least is not her fault. She can't do anything else for me unless I want to die. This doesn't make it any less frustrating.

Oh and a sleep specialist, guess what he did? That's right... kicked me back to my shrink. At one point I had a crazy idea that maybe my shrink could coordinate with one of the shrinks that work at the counseling center at school. She was open to it, but they said they don't do that.

My psychiatrist, well lets just say that in this case psychiatrist and shrink are one in the same. I'm being repeatedly kicked back to both of them. My psychiatrist was not doing her job so I ditched her in June, waited til I had a new one in place I was pretty sure I liked. New one is doing all he can as well, which is nothing. A decision was made to keep things status quo. He was open at least to trying something different, but when we did, those same life threatening side effects came back (some pain meds and anxiety meds are exactly the same).

What does all this mean? This means that my shrink can't do her job as well as she could if she wasn't responsible to cover everybody else's. We'd both like to kick some of my "therapeutic issues" to somebody else, but my supposed support system has turned into a perpetual boomerang. A person can't have a one person support system. One person isn't a system, it's a dyad (I guess it's 1.5 cause there is finally at least one person she actually coordinates with).

says you: but didn't you say you go to a support group?
says me: it's only a tiny chip off of a very large ice berg.

With Your Illness...

I just had to bring this picture back. I met with someone at disability support today. I don't know why, what the point was, but my department head told me to go and you do what she says. So I went. I don't like going to disability support; I find the whole thing pointless. There is never anything they can help me with at all. I keep being sent there for psyc issues that really affect my school performance. So it seems logical that I go right? For a school performance issue. Except that these are issues better handled between me and my shrink. I see the person at disability support once, maybe twice a semester at most (last semester not at all because that's when I realized she's pointless). I've seen my shrink once a week or once every other week for over a year. I think she's got a better read on me. DUH!!!

[image description: a boy wrapped in a blanket with a thermometer in his mouth and an ice-pack on his head]

Not only that, but the person from disability support offends me. After I was diagnosed with BP II my file got switched over to the person that handles all the psyc students. She started here two years ago, is an LCSW (licensed clinical social worker), and her previous job right before this was as an elementary school guidance counselor. She's really nice and really tries to be helpful (even though she never is). It's her use of language that gets to me.

3 or 4 semesters ago right after I was diagnosed I went to her office thinking she could be a big help, and in the course of conversation she said "people like you..." meaning people with BP. I immediately got a pit in my stomach that I couldn't identify until later that day. When I was a baby I was diagnosed with CP and right afterwards in that same appointment the Dr started off on "people like her..." She was trying to convince my mother to institutionalize me. It wasn't 1920, it was 1985. But back to disability support. People like me? Has she had extensive experience with people who have a dual diagnosis of CP and BP? Does she know anyone else with both diagnoses? I'm willing to bet $50,000 that the answer is no. So we can't talk about "people like me," We can only talk about me. We have to work within the framework that sometimes the two diagnoses make life way more difficult then if I was just dealing with just one of them. Sometimes they clash or work in combination to exacerbate each other. She gave me advice that made no sense to me because we were never really talking about me.

That brings me to today. I only went at the request of my dept head, to satisfy her and to appear compliant with fixing the current problem. As I said, I didn't want to go. I don't like to go (I do however like my shrink and feel confidant that tomorrow or Monday when I see my psychiatrist things will get all worked out).

In the course of conversation the lady at disability support said "with your illness..." I don't remember why, I don't remember the context or the rest of the sentence and it was only 2.5hrs ago. I fixated on those three words. "with your illness..."

What illness? Where? Do I look pale? Do I have a fever? Diarrhea? Can someone please clue me in because I never got that memo. I'M NOT SICK NOR IS THERE ANYTHING WRONG WITH ME! I have a chronic condition g-d damn it, and there's a HUGE difference between the two (for almost the same rant, see my earlier post). I feel almost as if she pities me because I struggle so much. That's what those words mean to me. I don't know, maybe I'm reading her wrong... but I just cannot stand her and I needed to rant. So thanks readers.

*rant over now*