PhilosopherCrip

I am not a lawyer and don’t know very much about interpreting law. However, it seems to me that the case of Micah Fialka-Feldman is a pretty classic example of those in power hiding behind “policy” as a way of masking their discrimination. Fialka-Feldman is 24 year old student with a mild intellectual disability who wants to live on the campus of Oakland University near Detroit. Micah attends 16 credit hours of classes per week and pays full time tuition. Yet, University trustees and officials have repeatedly rejected his requests to live on campus and forced him take a 2 hour bus ride each day to attend their university. They justify this decision by pointing to their “policy” of only allowing students in degree granting programs to live in one of their 1,800 dorm rooms, some of which remain vacant. The logic behind this decision, which has been tentatively supported by a federal judge, is that Micah would be seeking unequal opportunity by asking that the policy be waived for him when other continuing education students were denied the opportunity to live on campus.

On the face of it, this seems like it may be a justifiable decision, right? After all, the university is not JUST rejecting Micah’s claim on housing resources, but all 1,400 continuing education students who are taking classes but not earning a degree (although, it’s my understanding that there was some backpedaling done to try and be consistent with this policy and some English as a Second Language students were no longer allowed to live in the dorms, once it was apparent a law suit was in the works). Let’s put the ESL cases aside and look only at the “facts” that are being reported in the main stream media. That is, let us take the university at its word and consider the justifiability of denying Micah housing because of this policy.

Micah on his campus

First, it needs to be understood that virtually EVERY case of discrimination and bigotry can be framed in terms of a “policy.” The rhetoric is always the same. Opponents of same sex marriage argue that they have nothing against gay people, but don’t want to give them the “special privilege” of a state sanctioned marriage that can only happen by waiving the policy that marriage is defined as being between one man and one woman. Women are not being discriminated against when they are denied employment and advancement, but rather, there is a policy in place that excludes people who may become pregnant at some point. People with disabilities aren’t being segregated and incarcerated in nursing homes rather than receiving support services while living in their own homes with friends and family, they are merely being medically treated in accordance with the policies of Medicaid.

The fact is, policies aren’t handed down from God, accidentally resulting in some discrimination. This policy is not some kind of natural law. Policies are MANUFACTURED , sometimes according to bigoted attitudes that are already in place. The activist has always recognized this and never accepted the excuse of “that’s our policy.” Essentially, policies are the codification of existing habits, many of which are chauvinistic in various ways.

The question to ask is not “why does Micah deserve special treatment and a waiver of this policy?” but “why is the policy written in this way and what else could it look like?” When we ask the question in that way, it becomes clear that this policy is a thinly veiled case of discrimination. There is no housing crunch at Oakland University. I can hardly imagine that all of the 1,400 continuing ed students would want to live on campus, squeezing out the matriculated students. Typically, continuing ed students are not of typical college age and lifestyle and it would be absurd to think that they will flock to the dormitories.

So, if the possibility of a housing crisis is not driving the manufacture of this policy, what could be the justification for keeping away “non-degree earning students?” I have seen plenty of references to the “policy” justifying the exclusion of Micah from living on campus, but where is the justification of the policy itself? Why is whether a student is enrolled in a degree granting program or not at all relevant to whether they should be able to live on campus? Of course, the University could not allow just anyone who wishes to live in university housing to do so. It could not be the case that anyone off the street is allowed to move in, regardless of affiliation with the academic institution. However, why is the bright line drawn at whether a student is earning credit toward a degree? How is this at all relevant? Wouldn’t it make more sense to draw the line at whether a student is enrolled full time and needs to have space on campus because she is spending a lot of time there?

So, if there is no housing crunch at Oakland U that would be impacted by a more inclusive policy and there is no obvious connection between earning degree credits and living on campus, why has the university chosen to manufacture this policy in this way? What existing habits are being codified here and are they worth preserving?

Is it unreasonable to suggest that this policy is a throwback to the dark ages of not wanting to live with “those kinds of people?” Is it far fetched to think that a policy of keeping non-matriculated students off campus is a desire to keep at arms length those who differ from us in age, class, and, yes, disability?

Finally, as an educator and especially as an “almost philosopher,” some critical questions that were recently raised by Micah’s dad struck a strong chord with me. When trying to clarify our thoughts on this situation we should not limit ourselves to a critique of this particular policy, but also try to think in new ways about some of the most fundamental assumptions we make about education. This situation highlights in some very interesting ways questions about what a student is and what the purpose of education ought to be. I will leave these for another post.

Recently, my friend Annie passed away at the age of 24.  Some of you may know Annie, as she was a crip in Chicago who was a regular face at the Pride Parade selling her 3eLove Tshirts.  The name of this small business was itself a moral imperative issued by Annie’s basic philosophy of life, “Embrace diversity. Educate your community. Empower each other. Love life.”  3eLove was one of Annie’s many projects.  I don’t think anyone knew the details of all the work she did in the crip community and, surely, only Annie’s mind contained the seeds of the work she planned to do.  It’s my understanding that some of those plans included “beginning her PhD coursework in Community Health, suing the hell out of the state of Illinois for all of the misery that they put her through over P.A. hours, helping me [her brother, Stephen] write a disability education model and marketing it to school districts, writing a book, going on Oprah, and then going on a national ass-kicking tour.”  Those were just her plans for the year 2009 and, knowing Annie, they weren’t that exaggerated. To get a sense of the circumstances of Annie’s passing, check out the facebook note her brother wrote about those series of events.  That is not my story to tell.

Knowing Annie as a person and as an advocate (I don’t like the term, but it’s one she used to describe herself), there seemed to be a unity to her work.  That unity was a radical pride and active rejection of the stigma and shame that society heaps upon crips.

Let me back track a bit.  We are told that the kinds of help we need is not “normal” and that our way of living is one that should happen in isolation.  Even still, this isolation is enforced with the coerced segregation of people with disabilities into nursing homes and institutions.  We are seen as the Other and told that having “pride” means hiding anything about us that deviates from the cultural norms.  Even some of my most powerful activist friends struggle with shame at some of the ways their life is different from the typical.  They want to hide the markings and symbols of their difference because that is what we are told “prideful” people do… they try to normalize and assimilate as much as possible.  I know I have been guilty of this as well throughout my life.

The beautiful, inspirational Anne Marie Hopkins, 1984-2009

This definition of pride is what Annie made an active attempt to completely and utterly demolish.  The insight that Annie taught me is that crip pride is not about banners and marches and t-shirts and policy papers.  Crip pride is as simple to understand as it is morally grueling to achieve — we must live visibly on our own terms, as we are, without apology or shame.  This is what Annie achieved in a way that I have never before witnessed, but hope to witness again in others among our community.

To understand what I am talking about, take a sample of how she lived her life as a crip publicly and without shame by checking out her blog, “Annie D and the Band of Love.”  Some instances of her truly radical pride would be her description of her newly hired personal assistant who, allegedly, dreams of becoming a porn star, “I’m sure wiping ass and hanging out with me will only add to Jame’s qualifications as a cockstar. He is quite pleasant to look at which helps with my well being, porn star or not” … or her cat “For some reason, every cat I have own has always loved to chill in my wheelchair. It always has to be at a very bad time, like when my PAs are trying to move me from my bed to my chair or from the toilet to the chair. He’s always gotta be there. He’s an attention whore I guess” … or her roommate/PA who she keeps around “because he can entertain himself, but we also spend a lot of time together eating, recreating, getting awesome, watching instant netflix, completing our studies, dancing around the apartment, traveling, pooping, urinating, and farting, dog walking, smelling like onions, holding down facilities at UIC, reading and listening to audiobooks.”  Unfortunately, her blog was a relatively new project and so there aren’t as many postings as I wish there were.  I wish Annie had had more time to teach us how to live well.

Annie’s way of living seems to really come up against the “supercrip” narrative in some interesting ways.  The supercrip phenomenon is one of the common possible responses our American culture offers in public interaction.  That is, many times, both strangers and friends will go out of there way to tell a person with a disability how “inspirational” or “amazing” they are, as they go about their daily routine.  Of course, the unspoken premise behind this is a very low set of expectations for people with disabilities more broadly.  “Wow!  Look at that! You go out to eat at restaurants on the weekends and sometimes see a movie!”  The harm of the supercrip narrative is that, by setting up everyday activities as “amazing,” it obscures the idea that people with disabilities SHOULD be doing these everyday things as an accepted and integrated part of the community.  That is, its foundation is the notion that disability itself is something that is overcome rather than social and environmental barriers.  Put another way, the problem with the supercrip narrative is that it implies that the disabled life is, fundamentally, of less value.  The only way average, everyday activities can be seen as amazing and inspirational is if that person is starting off from a very dismal place.  Supercrips are seen as the exception to the rule of disability misery.

Professor Charles Xavier -- some crips really DO have super powers!!!

So, what then, are we to make of Annie’s celebration of everyday life?  If we understand her as inspirational or amazing, are we just dressing up the supercrip narrative in new clothes?  I really don’t think that is the case.  In fact, I think what Annie was doing was dismantling some of those hidden premises to the supercrip narrative.  By rejecting the shame in having her butt wiped and living pridefully, Annie was rejecting the notion that disability is something you “overcome.”  For Annie, her disability was part of her joy in living.  She unapologetically displayed how she had a good life not DESPITE her disability but WITH her disability.  If we could all live like Annie, someday the only supercrips around will be the X-Men.

I had too much caffeine and can’t sleep after spending the bulk of the last 2 days driving my van from CT to MI.  I was visiting my friends and family over MSU’s winter break for almost 3 weeks and I am now gearing back up for the beginning of another term of studying and teaching (the completion of my 22nd consecutive year of education — 3 more to go).  While I was “home” and in the car, I spent a lot of time thinking about what exactly constitutes a home.

The Waterbury Clock Tower in CT

I think I am starting to think of both CT and MI as a home of sorts, but for different reasons.  For me, CT is home because it is where the people are who know more of me than what I choose to show.  That is, going to college, starting grad school, and becoming involved in the crip community were all big turning points in my life, but they all offered me opportunities to redefine myself and present myself to a new audience as I wanted to be seen.  Surely, people see more of us than we deliberately show them, but starting over and moving half way across the country does offer a person a measure of control over how they are perceived.  Aside from experiencing the old familiar sights, sounds, scents, and tastes, this home (CT) offers me a reminder of  “where I am from.”  It is all too easy to forget your most formative experiences and relationships to the world around you when you move away from the people that know you in that context.  An old parish priest, a high school English teacher, or a college buddy can rip you out of the comfortable self image you have created and promoted for yourself, confronting you with your past self and reminding you of the responsibilities you owe these people for helping you build this creation you call your life.

The MSU "S" and Sparty the mascot

Yet, part of me feels that MI is “home.”  This is because I feel this is a life that I have very actively chosen to live.  I absolutely miss the comfort of having my family and friends around and the emotional and practical support structure that entails.  I desperately miss the feeling of absolute, unconditional love so willingly offered by my immediate family and closest friends.  However, walking through the door of this tiny dorm room that seems absurd for a 26 year old man with a masters degree to be living in, I am reminded by everything that this is the life I have deliberately made for myself.

Physically, everything is at my fingertips.  I imagine many able bodied folks take this sort of thing for granted, but my crappy little dorm room is custom designed in many ways so that I am much more comfortable in it than someone with “normal” bio-physical functioning would be.  In CT, this is not the case and I have to be much more dependent on others for an entire range of tasks.  Even the geography of my living space itself speaks to the notion that this is MY life that I have chosen to live how I will.  Of course, this only scratches the surface of how MI has become home because it has become the place that I live with the most self determination.  This is something over and above making your own choices, but involves actually determining your actual self. This is a challenge for any person I am sure, but for a crip who often finds that he doesn’t quite fit into the set of molds society has caste and tried to squeeze him into, the opportunity to break free and deliberately choose a life is a beautiful thing.  This is the core of the independent living ideology as I understand it.

Recently, there has been a court case in the news about Jarek Molski.  He is a Californian that has recently been told he can no longer bring lawsuits against public businesses that are in violation of the ADA by not allowing for access to their services by wheelchair users.  These violations are of the sort where businesses do not have wheelchair ramps or accessible parking.  The US Supreme court upheld the decision to ban Molski from filing any more law suits — by refusing to hear his most recent case — because he has filed more than 400 of them.

I have no legal training, so my analysis and opinion should be taken with a grain of salt.  However, strangely enough, I agree with the US Supreme court on this one, not because of the NUMBER of cases but because of the OUTCOME of many of these 400 cases.  The LA Times reports, “Fear of adverse judgments compelled many to settle out of court, earning the Polish-born plaintiff hundreds of thousands of dollars in less than two years.”  That is, these businesses were not becoming accessible as a result of these law suits, but paying this man settlements instead.

To me, this is completely absurd.  In fact, I don’t think personal payments should even be allowed in these kinds of ADA cases.  I don’t have a law degree, but it seems to me that these kinds of cases involving access to public space (as opposed to cases that have to do with something like employment discrimination) have very little to do with harms to an individual, but rather harm an entire community or class of people.  It makes absolutely no sense for a harm being visited upon a large group of people to be “settled” by a payment to an individual.

I find the notion that any one individual should have personal gain from these kinds of cases completely and utterly despicable.  This is because he is essentially making a profit of off our community’s marginalization and oppression.  In my opinion, he is no better than a nursing home industry lobbyist that makes a profit off of the isolation and incarceration of our people, who want to live in the community but are stopped by his work manipulating health care benefit laws to exclude community choice.  Somehow, it feels even more repugnant because Molski is supposedly “one of us.”  He knows what it feels like to be excluded from a restaurant or a bar or a barber shop or a book store or any number of places, but chooses to line his pockets and preserve that feeling for others.  This is the ultimate act of selfishness and exploitation.

Perhaps, in the most egregious of cases, it would make sense to award punitive damages to punish the offending business (especially when that business has very deep pockets and could have easily been accessible).  Even then, I feel uncomfortable at the idea of making a payment to an individual as a way of mitigating a harm suffered by an entire community.  I wonder if it would be possible to pay such fines to non-profit organizations that fight for the good of people with disabilities as a whole, like Centers for Independent Living.  Perhaps payments could be made to a scholarship fund for students with disabilities who want to attend college or a fund that helps individuals with disabilities to afford modifications to their living space or transportation to make it accessible?  Maybe these are all pipe dreams, but the thought of paying a single person money to somehow make up for the marginalization of an entire people turns my stomach.  This is NOT what Justin Dart had in mind when he devoted his life to freeing our people with the passage of the ADA.

After tonight’s debate, I am brewing a post about the rhetoric of pity that has framed the public discussion of disability this presidential cycle.  It seemed to really come to a head tonight (and was deployed by BOTH candidates).  I need to get my paws on a transcript of the debate so I can accurately critique what was said.  It seems to me that poor Trig Palin’s mom has tokenized him from birth, but more on that later.

Until then (hopefully I’ll have time this weekend), I thought I’d share an email my sister forwarded to me that was written by a special education attorney in my home state of Connecticut.  I found it to be a thoughtful and illuminating analysis of Palin’s repeated claim to expertise about “special needs kids” because she happens to be the mother of an infant with Down Syndrome.  I think it does a good job of getting at some of the core issues at stake in this election, rather than getting hung up on the hollow sound bytes.

Trig Palin, the most famous (and most exploited) crip kid since Ashley X!

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Dear clients, friends, colleagues, and all of the above,

As we near the Presidential election in just three weeks, I have been asked by many of you to comment on my thoughts on Gov. Palin and what she can and will do for special education students. As an attorney whose practice focuses exclusively on the representation of children with disabilities, I always investigate candidates’ positions and records on this very critical moral and financial issue. One of my clients recently suggested that I share with others what I have learned, and so here it is.

When Gov. Palin first came to my attention, I was, as I am sure all of you who care about this issue, intrigued to have someone on the national platform who talks about children with special needs. Since hearing her say this repeatedly in speeches, I have been waiting, and waiting, to hear some specifics on special education reform. Most of all, I want to know what her stance is on the IDEA, the federal statute that governs special education. The IDEA is up for reauthorization by Congress in 2010, and it is crucial that it reflect the policies and funding structure necessary to protect and appropriately educate our children with disabilities. I needed to know what Gov. Palin thinks about the future of special education legislation in this country.

I know where the other three on the tickets stand; Senators Obama and Biden have issued position statements on the IDEA to various parent groups, strongly supporting full funding for the IDEA and the rights of children with disabilities and their parents. The Obama-Biden website has a direct link to the ticket’s position on disabilities. Senator McCain’s website does not have such a link and neither he nor Palin have provided those positions on the IDEA to parent advocacy groups. Senator McCain does have a supportive position on the ADA (Americans with Disabilities Act) which has been published. I was, however, extremely disappointed in his discussion on the Senate floor regarding the Reauthorization of the IDEA 2004, in which he expressed his concerns that parents of children with disabilities who have to sue to secure appropriate services for their children under the Statute and win against districts shouldn’t have their attorneys’ fees covered. This is not just a matter of self-interest for me;=2 0it is the difference between families, especially poor families, being able to vindicate their civil rights or not. But I knew those things, I did not know where Palin stood, and I wanted to find out.

Having waited for some specifics from her on just how she is going to be an advocate for children with special needs in the White House, I finally got close. In her recent interview with Greta Van Susteren on Fox News, she was asked what her position is. While never mentioning the IDEA at all or what needs to be changed, kept, or fixed in it, she stated that the issue that needs to be addressed is “equal access” for children with special needs.

EQUAL ACCESS? Seriously? We HAVE equal access, that is what the original version of the Statute fought for in the early 70s, when children with disabilities were literally prohibited from attending our public schools. Equal access is so far in the minority of what needs to be addressed in special education I hardly know where to begin. Our problems are not that children with disabilities aren’t allowed into the buildings; our problem is what happens when they get there! What about a Free and Appropriate Public Education? What about “meaningful educational benefit?” What about giving children with special needs the tools to thrive and prosper and be fully independent adults, which is what the IDEA now stands for? We are decades fro m equal access being the key question, and apparently Gov. Palin is not aware of that fact.

Now, you might say “well, Jen, I am a parent of a child with special needs and I didn’t know that either.” Okay, my response: “are you running for Vice President of the United States? Are you telling the nation that you would see yourself as the voice for those children within the federal government? If you were, do you think you might have looked into it a little bit?”

It is not terribly surprising to me that Gov. Palin’s views on this are so far outdated. I have traveled to Alaska to give a speech to parents and professionals on the subject of the rights of children with special needs, in particular children with autism spectrum disorders. I was stunned by how far behind the State was from the vast majority of the rest of the country on the education of children with disabilities. Perhaps, for Alaskans, “equal access” IS the problem, but it is certainly not the case in Connecticut or most of the rest of the country. I am in regular contact with a colleague of mine who is a Parents’ attorney in Alaska, who has had to fight tooth and nail for children with special needs in Alaska simply to secure them the most basic of services that we take for granted here. I for one do not want the rest of the country to use Alaska’s system of educating our most vulnerable children as20a paradigm.

Okay, yes, you all know I’m a liberal…but that’s one of the reasons that I chose to get into the field of representing children with special needs, because I believe in my heart that this last bastion of civil rights is absolutely critical to fight. We need major fixes in our special education system, and if you think that who is in the White House does not effect you on this issue, you couldn’t be more wrong. IT MATTERS. It matters in terms of funding and at least as, if not more, importantly, enforcement. Our IDEA enforcement, even in States like CT where we have zealous advocacy, is woefully inadequate. School districts routinely violate the procedural and substantive rights of children and parents and only in a small fraction of cases are they taken to task for it. It also matters because the next President will have at least a few Supreme Court appointments to make. We have had more decisions from the United States Supreme Court in the area of special education law in the last few years than we had for decades. Those decisions have tremendous impact on whether parents have the right to have proper evaluations done for their children, how and when parents can exercise their rights under the IDEA, who has the burden of proof in Due Process Hearings, and a myriad of other issues which directly impact our children with special needs.

Whether we properly educate and embrace our children w ith disabilities is crucial to the future of this country, as the cost of NOT doing so will be far larger than the cost of doing so…leaving out the fact that it happens to also be the right thing to do in a great society. This issue should be front and center for any candidate for the White House, and I write to let you know that, at least as far as Gov. Palin is concerned, it has been an opportunity not only missed, but frighteningly misunderstood. It does not bode well for her, for us, or most importantly, for the children we love who need and deserve better in an “advocate in the White House.”

I will be casting my vote on November 4th for Obama-Biden, and I hope you will join me. They and their party have been on the side of children with special needs historically, and they will be on their side in the future. As our economy implodes and State and local educational budgets tighten, if we do not turn this around now, I fear that we will, once again, be fighting only for “equal access” for our kids. That is unacceptable to me.

Finally, for any of our more conservative clients who I may have offended, my apologies; I respect your views even if I disagree with them. However, to calm your concerns, Attorney Dana Jonson and I have convened a Personnel Board consisting of the two of us, which has investigated the matter and determined that you continue to have excellent legal representation.0

Thanks for reading, please feel free to forward this email to any and all people you know who care about the future of special education in this country.

Best, Jennifer Laviano
The Law Offices of Jennifer Laviano, LLC
Sherman, CT