Things Change, And That’s the Way It Is ~ Part 1

“I’d like to go back to when we played as kids, but things change, and that’s the way it is.” –2PAC

I’ve not allowed myself much time to reflect on the past four years, and what it means now that those who started with me aren’t present in the day-to-day.  This week is a grace period for me.  I haven’t actually had a normal full week without Kathleen, Ronny, Joseph, and others.  Last week felt like any other time that we were closed for a week: staff worked on loose ends, organizing, planning.  Then, leaving for Toronto on Friday, again, there was a quickness of moving away from the commencement ceremony.  Tim posted the back of the program which I wrote, and he and Lauren edited.  Though it’s written by me, I attempted to use a voice that was universal about how (I think) we all felt about what we’ve experienced.  But everyone has a personal story of what 2008 through 2012 meant.  Here’s a bit more personal of a reflection of the past four years.  I hope to do this in a series of posts instead of one large lengthy reading.

In 2008, I was 22 years old.  I had already failed and grown to loathe one career, the path I’d thought I went to Xavier University for: high school teaching.  I wasn’t sure what I should be doing.  Most people don’t have a crisis of identity at 22, but I did, quite real with panic attacks, weeping, and feeling utterly immobile.  Most people don’t quit their first grown up job after 3 months, but I did that too.  It felt pretty miserable.

I had a small studio apartment in Walnut Hills, a dog, a boyfriend, and for once, no real direction or understanding of what I was working towards.  I have to mention, that it was because Jordan understood how unhappy I was, that we decided quitting my job was a better decision than being constantly miserable.  We lived off of his income alone for a couple of months while I did my best to take my time figuring out what I wanted to do, albeit, quickly.  His “income” being that of a 21 year old full-time college student who moonlighted as a 3^rd shift UPS employee.  We ate a lot of chicken patties bought in frozen bulk from Sam’s Club.  Someone asked me last year right before we got married, how I knew I wanted to marry Jordan.  I think frozen chicken patties and working 3^rd shift to allow me to find out what I’m supposed to be explains a lot of that.  It might also explain the reason behind elaborate meals that I cook and post photos of to Facebook.  A continual thank you to him for bearing through it with me.

Jordan and I, 2007.

After I quit teaching, I managed to find a temporary position through high school connections.  I became an instructional aide in the high school setting again (not teaching exactly) and was already disgusted in my short seven months in the special education world.  I was placed in the resource room and I was working at the same high school that I went to, but had had no idea that the resource room existed.  No, it wasn’t in the boiler room or hidden under the stairs, but it might as well have been.  The only people who really ever came in were the same kids day after day, and the intervention specialists.  Everyone in the resource room had an IEP and everyone in the resource room was lumped together because of some arbitrary commonality: something was “wrong.” Ranging from 10-20 students in any given bell, with any type of problem, developmental disability, learning disability, behavioral problem,  and including “bad kids” who were sent there too because they wouldn’t shut their mouths in class, sit down, and listen.  Since I wasn’t teaching curriculum, there was a lot of talking, tutoring, and listening.  I read tests out loud.  I locked up modified tests in a little red cabinet per regular education teacher’s request so that no one had “an unfair advantage” over the regular education kids. (That still makes me laugh thinking about the ridiculous notion that special education student could have an unfair advantage in education.)  I provided extra time on tests.  I witnessed the madness of OGT (Ohio Graduation Tests) prep and the rules for exceptions.  I don’t recall the exact details but something along the lines of, if you fail to score the minimum needed for passing after three attempts, and you have an active IEP, then you’re okay and are not required to pass them to graduate and receive a diploma.  I can’t imagine the feeling of needing to struggle through five sections of such a large standardized test, and then fail the tests three times in order to prove that yes, in fact, you’re not as smart as everyone else.

In March and April of 2008, I applied for over 50 positions at non-profits in Cincinnati.  I was (and still am) sincerely interested in everything that has to do with people in our city so there were a lot of scenarios I could easily imagine myself fitting into.  A homeless shelter needed a front desk person, could that be me?  Working in Neighborhoods needed people to counsel about predatory lending, could I do that?  Pregnancy Center East needed a director, maybe I could figure that out?  A case worker was needed at Santa Maria helping people experiencing poverty link to resources in Price Hill, sure, that sounded cool.  A non-profit in Madisonville is looking for people to work in a new program for people with disabilities, I applied for that, too.

In hindsight, I couldn’t have lucked out more.  I guarantee that those who interviewed with Krista and Tim for that same position were more “qualified” than I was.  22 at the time, and quitting 3 months into one job and working 7 months at another, my resume didn’t tell a very flattering story of who I was. I don’t recall all the details of the interview, but I remember Tim asking if I didn’t have experience how I could do the job well (or something like that.)  He seemed off-putting and the question was phrased in a way that threw me off guard.  I remember blushing (I do that easily as you’ll recall from this post) and I responded that I wasn’t a black teen with behavioral problems on an IEP, I wasn’t a homeless woman struggling with addiction (I had interned at the Drop Inn Center in 2003), I wasn’t a 14 year old girl with Down Syndrome and I wasn’t a teacher anymore, but I thought some experiences were universal and regardless of background, demographics or whatever else, people were people.

In June of 2008, 25 other 20-somethings started Starfire U that year with me.  They were defined by their diagnoses, labels, and files from high school and other programs.  I was defined by a degree and a shoddy resume.

In that first year, we (I) didn’t know what we (I) were (was) doing.  Calendars were juvenile, staff planned only, and quite honestly, embarrassing to look at now.  Tim has shown a picture of himself dressed as Santa Claus at a big dance for people (adults) with disabilities and talks about how he thought that was okay then.  It’s shameful, but it’s part of his story and I’m grateful he’s willing to tell it honestly.  The calendars of 2008 are that for me.

Parking Lot Olympics, August 2008

Parking lot Olympics with a torch made out of an umbrella? Sure!  80’s Dance Party on a Thursday afternoon?  Yes!  Mystery clues placed around the office with construction paper footprints leading to a whodunit conclusion?  Of course!  Trying on and wearing Native American dresses while a woman from Imago presents the same presentation she does for grade schoolers?  Why not?  Ice-cream social 10AM on Monday!

I would explain my days to friends and they’d be jealous.  It became a sort of sport for them, I imagine.   “So… what did you do today?” I’d be asked.  “We made cookies for firefighters.”  Or, “we made a dream catcher.”  Other staff of Starfire U could respond, “We went to Coney Island” or “We went to Ride the Ducks on the river.”  “We played putt-putt.”  You see, at that point, certain staff lead the “field experiences” (how clinical, I know) and some did “seminars.”  I, given my extensive teaching experience I suppose, was delegated to seminars.

I can guess now what my friends were thinking then.  How could someone’s career be so trivial?  They were studying to change the world through social justice, computer science, nursing, and criminal justice.  Weighty topics of importance.  I, with all my education and training, was decorating dollar store wooden picture frames with disabled people using Crayola paint and magazine clippings.

Something shifted in the first year that only distance from those early months can reveal.  If I continued to tell a story of cookies, dance parties, Coney Island, and art projects, I would also continue to perpetuate the notion that our work was silly, and meaningless.  If our work was silly and meaningless, so were people’s lives.  I honestly knew then that this wasn’t the case, but I wasn’t sure what else it would be.

I enrolled in graduate school at the University of Cincinnati full-time in 2008 and began working on a Masters degree.  I thought this was important to my career moving forward and I know now it was more for ego than for anything else.  I enrolled in the educational studies program, cultural and social factors of education and what makes some people succeed and some people fail.  It was there that I started doing some deep intentional reading and found some clues to how this work could be more than silliness and entertainment.  I read dozens of articles about inclusion models in education.  I learned about self-efficacy, and self-determination.  I read about segregated workshops originally being intended to be a springboard into community-based employment.  An article called “The Myth of Transition” described how the opposite effect has happened.  The research showed that people do not learn skills, but in fact become less employable in community positions after working in segregated workshops.  I read and wrote about the history of segregated schooling, supreme court cases like Olmstead, local laws, what impact the Americans with Disability Act (ADA) really had.  I refreshed myself on Bandura’s social learning, Zimbardo’s experiments on control, abuse of power and obedience.  I realize now that I even quote Wolf Wolfensberger in one specific research paper but didn’t fully comprehend who he was, and how much that would radically change my work in the coming year.  I quoted him in a section exploring relationships: “Social roles dominate people’s lives, and people largely perceive themselves and each other in terms of their roles. The value people attribute to various social roles tends to decisively shape their behavior toward persons whom they see in valued or devalued roles. Those in valued roles tend to be treated well and those in devalued roles, ill.”

It was evident to me then that a wealth of knowledge, theory, debate and questions around disability existed.  None of it seemed silly, or trivial.  None of it had to do with fun activities.

Cover of Amusing Ourselves to Death

If entertainment was our purpose, it would also be our outcome.  I had read in high school with my then English teacher Jason Haap, Neil Postman’s “Amusing Ourselves to Death” alongside George Orwell’s 1984, and Aldous Huxley’s Brave New World.  I think back on Postman’s writings frequently, especially in the context of taking people’s lives seriously, and the role of entertainment in our life.  Was my role to entertain people, give them happy memories, pat myself on the back and call it a day?  Or was there really an opportunity that was bigger here to affect change in the story told about Down Syndrome, Cerebral Palsy, Autism, and all the other big box names we give to disabilities.

Postman writes in Amusing Ourselves “Everything in our background has prepared us to know and resist a prison when the gates begin to close around us . . . But what if there are no cries of anguish to be heard? Who is prepared to take arms against a sea of amusements? To whom do we complain, and when, and in what tone of voice, when serious discourse dissolves into giggles? What is the antidote to a culture’s being drained by laughter?”

Was my work drowning people in a sea of amusements?  Was it a distraction from real life?  The approaching second year was a game changer.  Bridget learned about PATHs, and lead a staff training on it to bring us along.  “we’re going to offer PATHs to all the members.”  I remember it well.  Jewell, John, Bridget and I were all in a group.  We did very small personal mini-PATH’s (the North Star conversation only on speed.)  I remember my North Star included buying a house, getting married, learning about bee keeping, starting a garden in my backyard, writing, and a few others that I can’t remember.  I was skeptical about the whole process, not buying into the hippie shit of drawing what you’re feeling and dreaming out loud, and all the other hokey stuff I thought I’d left behind from when I planned retreats.  At some point, I became embittered by it.  We gathered as a large group again, shared our North Stars and at the end of the afternoon, everyone rolled theirs up and took it to their desk.  “I’m going to keep this” someone said.  “I’d love to hang this above my desk as a reminder of what I could be.”

PATH

I’m embarrassed and ashamed now to say that I felt very differently.  I immediately crumpled it up and recycled it.  The idea of “writing something down and seeing it as an image makes it more probable to happen” was bullshit.  I was not an immediate believer in the process, and wasn’t buying that this was something that would really change people’s lives.  And who cares about drawing pictures?  Was I ever going to really learn to keep bees?  Buying a house?  When I’d just graduated in 2007 with large amount of student loan debt and was paying out of pocket for graduate school?  Whatever.   This was Winter of 2008/early 2009.

I had a lot more learning coming my way…