Access and Hypocrisy

I feel like I must preface this post by reminding readers that I am a die hard ADAPTer. My commitment flows through my veins 24/7, even if my constant depression and other issues make it almost impossible for other people to see it. However, two things happened over the course of a little over a week that I feel have questioned my credibility. Right now I'm up not able to sleep because of a few things, one of which is that I'm trying to reconcile the values I've developed as an ADAPTer with the positions I'm putting myself into.

The first thing that happened was that over the winter I decided I wanted to see an art therapist. I never liked doing art in my youth; my visual and fine motor deficits causing me to put up walls due to frustration, but after I spent 7 weeks in the summer of 2007 taking Intro to Art Therapy, art became my #1 strategy for avoiding my overwhelming anxiety. I say avoiding because instead of facing my anxiety head on I would spend hours with crayons and markers in an effort to ignore/push aside how uncomfortable I felt. This actually made my anxiety worse.

I created some great art though, and while my art will never hang in a professional gallery, I can no longer say I am "bad at art." I haven't touched my art materials in 2 years though, which is a good thing. A conversation with a friend once went like this:

"You want to come over and do art?"

"I'm not in the mood."

"You don't have to be in a good mood to do art."

"No, I have to be in a bad mood."

However, I noticed some patterns when I was doing art and I don't understand what they mean. I've been wondering all these years and finally over the winter started seeking out an outpatient art therapist.

The second thing that happened was that I decided to pursue an opportunity at work. There has been a recent staff turnover, and I can, most likely, pick up a few hours a week helping to develop our transitioning age youth program, which in 3+ years has never gotten off the ground. I've had some great ideas that the people running it agreed were good, but then nothing happened, and I decided it wasn't wise of me to strong arm them. I decided I wasn't willing to work on this unless I was being compensated.

What do these two things have in common? Both are located in inaccessible offices. The art therapist works within a group which is located in an older building, and her office has 1 step outside. Just 1 -- it'd be easy to ramp. If I ignore the issue, I have to be careful of where I am coming from or going to. I obviously can't bring my chair with me. While I have that "luxury," for lack of a better word, of deciding to do this, I don't feel right about it. In the 5 years I have been seeing my other shrink I have gone to appointments from places like our state capital, or gone straight from her to an ADAPT mtg, lugging bottles of soda on the back of my chair.

The organization I work for operates programs in 5 locations. I already work at 2 of them. One I bring my chair to 6 months out of the year because it's so close to where I live that rolling to work is faster then waiting for paratransit. The other I have brought my chair to twice over the last 10 months, both times because I was coming from somewhere. Out of all 5 locations, my new position, should I choose to ask for it, will be located where our executive offices are. The only location that is completely inaccessible. Not only are there steps up to both of the outside doors (one without any railings), but the main floor, the one where all the programing is, is divided in half by 3 steps. In the two years I have worked here I've rarely had to go there, so I decided not to pick this battle, but if I'm going to be working there regularly, I really don't feel that I need to not go places because I won't be able to get into work afterwards.

The easiest thing to do would be to state that they must move the program, however I don't feel like this would be fair to my new boss (I'd have 4). I'd only be working a partial shift, but with the staff turnover her hours are being expanded so that she's working a full shift that day. If we move locations it cuts into her hours. So I guess that means that I ask (demand?) that ramps be installed. The thing is that 1, I'm not sure it is possible to ramp the inside steps, meaning that if we ramp one set of the outside steps we'd literally be doing half the job, making only half the place accessible. I could get out of my chair and struggle with the inside steps, but not everyone can. A half job is not OK with me. The other thing is that they're not legally required to do this. I have a good enough sense of our finances to know that they can claim "undo hardship." Is it my responsibility to find a way to get ramps installed at a discount, or theirs? This I don't know.

My first inclination was to ignore both of these access issues, push them to the back of my head and pretend that they're OK. I've realized that I can't bring myself to do this, which is actually a relief. I won't spend all my time feeling like a hypocrite. I won't spend all my days feeling like a sell out. I won't be limiting how I plan my days. However if I bring these issues up and they can't be resolved, am I limiting myself in other ways? Am I limiting my ability to knock down my psychological barriers? Am I limiting my ability to develop valuable work skills? I'm not OK with that either.

Which is leaving me at a loss, and is contributing to my insomnia. Anyone know where I should go from here? That is if you've gotten this far...

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)*

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.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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

What About ME!?!?!

[image description: b/w clipart of a girl in a manual chair w/her hand raised high]

I feel rather odd not having blogged for a whole entire week. I think I ODed on the whole blogging thing in Jan/Feb and I need a break, even though I wrote down a long list of things I want to blog about (this one not included). Anyway, the post now...

Today I went to the CMS MFP conference (Center for Medicare/caid Services Money Follows the Person) which was down in Harbor East (Baltimore). For my senior seminar in family studies class we have to go to 2 conferences, so this is #1. #2 is tomorrow evening. The Leukemia & Lymphoma Society's bright horizons conference is held in the union every spring. I chose the CMS conference because I have a very good friend who was presenting today who wanted as many Sunshine Folk there as possible, and my other friend and fellow CDRC member works for CMS and was in charge of the whole thing.

The day started by having to get up 2hrs before usual, earlier then I remember getting up in a long time, because the conference was downtown and started at 9am. It was still dark out when I had to get up *whine* and very cold in my room. It was extremely hard to get out from under the covers. So I missed my paratransit ride :-( I can't take a cab into Baltimore anymore because the state cut how far I can get on the discounted rate, and, well, I lost the card again the other day anyway... So in the freezing cold 13 degrees fahrenheit I raced over to the library to use google maps to figure out my route via bus, which is totally free w/a paratransit ID. The route seemed easy enough, but I got totally lost. Anyone who knows Baltimore, I somehow randomly ended up at the inner harbor after I got off the bus, which was good being that I was looking for E Pratt st, but I guessed wrong, turned the wrong way, and ended up at the convention center (off of W Pratt st, totally missed the fact I had crossed over) when the hotel is in Harbor East. I was an icicle by the time I texted someone, turned myself around, and miraculously found my way there. To top it all off, my chair battery was blinking angerly at me on 1 bar this whole time and I was petrified it was going to die. Thankfully it didn't. So I was late, yes, but the requirement for class is only to be there for a minimum of 3hrs.

*sigh* It makes me feel better to get that out.

I went to 3 sessions today. I can't even remember what my sessions were technically on. All the names sounded very interesting except what they all were really about was needs assessing, dressed up in different contexts. Employment, person centered planning, and community organizing. I've done some theoretical needs assessments, in fact I turned one in yesterday for sr sem that everyone in the class has to answer and give back to me, and frankly I've had enough of needs assessments over the years. I've had to do them in too many classes. And right after I just did one, gag me. Even so, I was able to pick up a little tidbit in each session and really did learn something. In fact, I had had a return paratransit ride for 2pm that I canceled during lunch so I could stay for the 2 afternoon sessions.

I've totally gone off from what this post was supposed to be about: the first session. "What about ME!?!?!" The session was about employment & community inclusion. Getting people employed post-nursing home? I dunno, but employment is a hot topic nowadays, so I picked that one. That was not what the session turned out to be about. It was somewhat about SSI and ticket to work, medicaid buy in, etc, but then I stood up, asked a question and totally derailed the entire conversation.

[image description: b/w clipart of a girl wearing AFOs w/forearm crutches (left) talking to a girl (right) w/a backpack on]

The person presenting started briefly talking about how there is this big unemployment rate for PWDs 18-26 and after that it seems to go down some. PWDs aren't steered towards thinking about work post-high school. They're steered towards adult service providers and day recreation programs. Academics need to be balanced with work preparation she said. She very briefly mentioned the big statewide transition program in New Hampshire (where she is from) for 18-21. Someone stopped and asked a question, and then before she could get another word in and try to get back on track after she answered, I stood up and forcefully asked a question.

"This transition program that you're talking about, is it for students still being serviced by their public schools? Because what about people transitioning from high school to college? I'm 24 (it feels weird to say that), I'm about to graduate, and I feel like we are a very underserved and ignored population."

People thanked me for bringing up the point. I said that I was never in special ed, got rid of my IEP in 3rd grade and had a 504 plan all through school, and there was no "transition" for me. "What about trying to steer students to college? Many students don't realize that they can go to college, that they are capable of it. It isn't easy, it certainly hasn't been for me, it's been 6 years, but many students can do it." There's just things like school systems not realizing that students not in special ed are still eligible for voc rehab funding. Who knew the state pays for crips to go to college?

The state of Maryland I think puts on a big transition conference every fall. I know of the one that happened in 07 because I got on this list after I got my workshop grant. I had wished I didn't have class so I could have gone. I got the thing w/all the sessions on it. There were so many broken up into all sorts of categories. Pediatric to adult health care transition, school to employment transition etc. I was particularly impressed by how much they had geared towards health care. But, there was nothing in all of those sessions covering transitioning to a higher education setting. Not even one. It got me enraged, just as the session today ticked me off unintentionally (although more so because that conference had been completely organized by our state's voc rehab). If voc rehab doesn't even know what to do w/the kids whose educations they're going to be footing the bill for, then, well, we're all doomed.

Another thing, it seems as though a lot of the honest to g-d professionals that were in that room w/me had gotten into their field as a byproduct of having a crip kid. Which was totally cool because they were so passionate about what they were doing on the policy level even. But one of them mentioned how the expectation that professionals (mainly drs and such) have for kids very early on in life is projected onto the parents who are then completely brainwashed by the time their kid is 18 that they truly believe that their kid is incapable of working (which by and large is not the case). So then, um, the kid believes that too of course.

Another parent-professional brought up how important it is to get the parents involved, to get them engaged, to get them totally on board with this 'hey your kid is going to go out and get a job' thing. Ticked off lately by some conversations I've had recently with the person who runs the 18-21 high school to work program right here on campus, I had to say something to that of course. I had to say that I semi-disagreed w/her. "What about getting the student involved? It's more important to get the student involved then the parent. I mean, yeah, parents are important too, but your other child all along gets other messages about planning post high school and figuring out what they want to do w/their life. Do that. The students need to believe that they can do something even more then their parents do."

Sheesh. Treat your special ed students like they're no different then their regular ed peers and they will be. Treat them like they should have goals and aspirations that are just a little bit of a reach for them, and they will meet those goals, just like most other students. By golly, even some students who have spent the majority of their time in special ed or in inclusion settings with tons of intensive pull out services can go on to college. It is possible. I've heard the stories. Refer to The Short Bus. Work with both your special ed and regular ed students w/disabilities to find strength-based strategies that will help them to be successful in life. Strategize and problem solve with them. As the guy said today in the community organizing session I went to, don't come at a problem w/the answer and try to fit the problem (or fabricate a problem) into the answer. Come at the problem w/a question. Or questions. Seek out the answer and then ask some more questions if you have to. Then the solution will actually work. What a concept!

I wish I could attach a flow chart here. Ask yourself, 'can this kid go to college? Do I think they might be able to succeed?' That is the essential question. If the answer is no, ask yourself if there is even the tiniest voice in the back of your head that says maybe. If the answer to that is yes, or if the answer to the first question is yes, then you have come up w/your problem. How? How can we make sure s/he succeeds? Start asking yourself, the kid, their parents, their outside support system, the professionals they work with. The kid in particular might have no f*cking clue. Their shrink is a good place to start in figuring this out. Refer to the bottom of my blog roll. Everyone Needs Therapy. I truly believe that.

I went through freshman year failing everything, but surrounded by people who wanted to help me. Except that they kept waiting for me to be self-directive; to tell them exactly how to help me, exactly what to do. I didn't know. I was in uncharted territory that year. I'm all for person centered planning. It works way better then systems centered planning. But sometimes (most of the time) it needs to be a collaborative effort between the client and the professional. Get down and dirty in the trenches with your client. You need to be on equal footing with them. As a professional don't assume that you know better then your client. You don't. Who could possibly know better what is best for me then me? Help your client to fill in the gaps. Strategize with them, facilitate.

As the guy in the person-centered planning session said, you have to look at what is important to your client as well as what is important for your client. For example, it may be important to your new crip college student to make friends, establish social connections. But, it is important for them to go to class. That's what they're there for. Don't discredit your client's need to have a social life and tell them that the only way for them to ever graduate is to live their life for the next how ever many years in the library like a recluse. Help them to find their best balance between socializing and studying. Based on that particular student and their disability issues this may mean altering their course load in order to accomplish both goals. That idea may be unsettling to you at first, or the kid, or their parents. But work your way through that--or send them to a good shrink.

But above all, just start thinking about kids like me. Start discussing kids like me. Keep them somewhere in your mind, even if it is not the very front (hey, we all have to start somewhere). We're out there, we exist, and we need just as much person-centered strength-based goal direction as the next kid. We're not in special ed (or we are, but we're more high functioning then your "typical" special ed student) but we need more specific, more custom tailored person-centered plans then regular ed students. We're lagging behind because we're being left to fall through the cracks (someone please correct me if I am wrong and this is not as dire as I am presenting). It doesn't have to be this way. We don't have to struggle quite as much. Just do something.

*off my soapbox* If you like my clipart go to
http://school.discoveryeducation.com/clipart/category/stud.html
There is never enough good crip clipart to go around. I have such a hard time finding it when I need it. Found it by accident tonight, wasn't looking.