i’m really really disappointed. and hurt. and feeling betrayed. i’m realizing that sitting in the bathroom of this coffeeshop crying is not productive and know i can’t get back to writing my paper (that’s due in a hour) until i write this letter.
over the last year, one of our own, micah fialka- feldman, began to fight his university so that he could live on campus. the school accepted his money, gave him a move-in date, and then changed their minds because of an old housing policy that was created before people with cognitive disabilities were allowed to attend through the OPTIONS program. now they are saying they do not have enough space. as you know, students and activists have strongly voiced their support for micah.
however, many of you have not. in fact, some of you have come out against micah. now i understand disagreeing if it is because you feel that the university is justified in their policy. we can just call that a difference of perspective and understand that while we enjoy bipartisanship, disagreement is a part that comes with it. living in north carolina where the disability community can be surprisingly republican, i understand that we need each other to advance our people.
what i do not agree with, and what i am strongly offended by, is when you use ableist rhetoric and take up an assimilationist politic. we, young folk in the disability rights movement, are called the ada generation because we grew up with rights older disabled people fought for. we, for the most part or at least a higher proportion, were allowed in schools and in public. many of us who are labelled as ada generation have also been given opportunities, like congressional internships, activist training, mentorship, and access to youth leadership development programs, to grow within the movement. what we do with these opportunities is going to define the future of our movement and community.
i think every young leader in the movement should read the INCITE! anthology, The Revolution Will Not Be Funded. the book speaks a lot about the professionalization of movements and what happens when the focus is shifted away from community. the conversations become about leadership skills and how to get business cards, not about ableism and what we need to do to mobilize. disability becomes a 9-5 career.
i feel like that is what is happening with micah. we are forgetting our community. instead of asking why shouldn’t he be allowed to live on campus, you instead ask “why can’t he live off campus like i had to?” and use words like “pulling heartstrings,” “asking for handouts,” “bending the rules” and “using his disability”. you then say “now… if X experience i had was happening to micah, then of course i would be outraged!” really? are we only saying we share support if we’ve experienced what they’ve experienced? this doesn’t sound good for cross-disability organizing. and have we really adopted tools and tactics that have been used against us instead of extending solidarity to micah?
it’s so disgusting. i know this is not new— that the disability rights movement functions with people from all backgrounds contributing different things—but this ada generation scares me because we say we speak for young disabled people everywhere while simultaneously only caring about our careers. we are working from a network model instead of a community model without recognizing what both models offer (and constrict).
as leader of an organization that has bred many of us, i know i must sound like a contradiction. i think there are many cards stacked against us and we do need networks, mentorship and development opportunities to advance our community. i just hope that we can do these things, and grow into ourselves, without hurting our community. our people. folks like my friend and fellow activist, micah.
hanging on,
cripchick.
more info below the cut.
Media updates on Micah’s request to live in the dorm at Oakland
University:
Youtube video of Board of Trustees video
Oaklant Post: Micah’s Fight Continues
Oakland Press: Disabled Man Fights to Live in Dorm
Detroit News: Let Disabled Student Live in Dorm, Supporters Urge
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cripchick,
thank you for you post about this issue.
you bring up some very good points about the ada generation.
this leadership model fosters the biggest and brightest of the disability community is– an every man for himself/first to the top situation . a model where a lot of folks are getting left behind. a system has been created that values whoever can overcome their disability the best. someone who is self-sufficient, productive, smart, and career oriented. its time for the disability community to stop trying to assimilate so a small handfull of individuals can get to the top. our movement should not be about overcoming personal disability, it should be about forcing society to accept us as a community as we are– not trying to mold ourselves to fit standards that are fundamentally ableist. its about being outraged as a community when one of us doesn’t have access to something because his education program isn’t valued the same way. its about changing exclusive policies together so we don’t continue to leave groups of us behind.
in solidarity,
ryan
I have noticed that when people who had been oppressed–from any minority–have an opportunity to express power they frequently do NOT identify with their community members and it always shocks me.
It is upsetting and wrong
I can’t believe that people with disabilities would be against another person with a disability who is fighting for equal access! That just pisses me off! I’m also pissed that college took Micah’s money, then, reneged, after giving him a move in date. I still don’t get their excuse for excluding him, perhaps because I feel that there is no good or valid reason to exclude Micah. I am ashamed of the ableist and oppressive attitudes of the pwd’s who are spouting the negativity. I wish Micah all the best, and hope that he will win this fight.
Hmmm. I have… mixed and conflicting feelings on this one.
On the one hand, this individual campaign does come across to me as having a lot of the “inspirational”, “personal tragedy” kind of vibe about it, which i tend to find really squicky and horrible (it could, IMO, pretty easily fit into a telethon… tho i accept there is probably UK/US cultural differences that probably make me see more things as using that kind of emotional manipulation that perhaps wouldn’t be seen as such by a lot of US disability activists…)
On the other hand, it’s also undeniably a basic equality issue – he should have the same rights as any other student at that university, and that’s just really so basic that there’s no denying it.
I don’t know whether living on campus is universal or near-universal at US universities, or whether there’s only enough for a small fraction of students. (In the UK, generally all first year students have the option of living on campus, but only those with significant physical access needs are guaranteed on-campus accommodation for the whole of their course – tho that does vary a bit from uni to uni…)
I think a lot of my mixed feelings are due to the fact that i had VERY bad experiences of living on campus in my first year of uni – in fact, it felt like an institution, tho it didn’t seem to to those who were less sensitive to that than me – so i wouldn’t recommend anyone, but especially anyone not neurotypical, to live on campus, and even more especially in the US shared-room system (which i would have been *totally* unable to tolerate, and if it was the only option wouldn’t have gone to uni at all).
So maybe some people’s apparent uncaring or hostility is partly because Micah’s desired choice is one that they wouldn’t make, or would even think is regressive to make? But nonetheless, it’s his choice and he has a right to it, one that should be defended and to deny him it is extremely blatant discrimination…
sorry for rambliness, just thinking out loud really. hope you got your paper in…
I hope Micah will win his fight for inclusion, but I am not sure this is a generational divide. I think that folks with intellectual disabilities and folks with psychiatric disabilities OFTEN do not get included in the disability community nor get support for their/our issues of inclusion and that it happens across all age groups. Unless we are so “recovered” or doing so well as to show no difference at all, we are often dismissed by the cross-disability community of all ages. I could be wrong but this has certainly been my experience.
I agree with you there, hymes! I have experienced it on a personal level numerous times. What’s so jacked up is that some of the folks that I know personally who have “complained” about this have been the very ones who do this! Anyway, I really hope that Micah will get to live in the dorms. The school policy is messed up, and should be changed!
mhmm, hymes i definitely agree w/ you. 100%. i guess i am more talking about the professionalization of the movement in relation to young people, v. solidarity on issues that affect people w/ developmental and psychiatric disabilities.
however, you and dread would know way better than i would about whether careerism and such has been this much of an issue since the beginning. what has given me hope though in youth organizing is that we seem to do cross-disability work better than older generations—though we definitely have a lot of issues to work on. but dread1myn and hymes, what is your perspective on non-profit industrial complex and the history of the disability community?
shiva, it’s really interesting that the media coverage does have that vibe—- micah is definitely one of the most radical folks i know when it comes to disability pride. i have a lot to thank him for and actually got a chance to know him more at the allied media conference this summer (we’re both involved in youth organizing so we sorta-knew each other before, gave a presentation together once.) but at the AMC, he and his family played a big part in getting disability on the agenda and bringing the empowered fefes to do their thing. they’re all also really involved w/ the Boggs Center (quite radical). i felt really welcomed in detroit by micah and am so glad to know him as an activist and friend.
terri, yes. yes yes.
and ryan, everything you said is on spot. you bring up a lot to think about in terms of our values and their relation to ableism.
Personally, I think the non-profit industrial complex has done a LOT of harm to people living with psychiatric disabilities but I think the harm has increased over time rather than lessened-the reasons for this I don’t pretend to know but it is clear to me that it is so. In the past there were radical groups of ex-psychiatric patients forming their own groups to support themselves with no government funding and no professional help and we had a lot more passion and a lot more success in empowering ourselves I believe relative to now. Fountain House in NYC and the Mental Health Association, now Mental Health America come to mind. Fountain House was founded for ex-patients by ex-patients and was truly a peer run and driven program. Now Fountain House is indistinguishable from any other clubhouse taking government or other funds and even commits residents on occasion. MHA was founded by a very brave ex-patient, Clifford Beers. Now it is run by non-psychiatric survivors and its current director was on PBS in ’07 supporting PACT teams and speaks out for drug treatment and takes big Pharma money. The MHA no longer speaks for psychiatric survivors although some individual local MHA’s still do. We also had the advent/creation of NAMI and the Treatment Advocacy Center in the later part of the last century, both of which have claimed to speak FOR people with psychiatric disabilities while lobbying for laws the vast majority of people with psychiatric disabilities object to. So in my eyes, we actually were doing better about 40 to 50 years ago and even earlier when there were brief periods of ex-patient movements–see Lauren Tenney’s OPAL project for more on this.
Today the non-profit industrial complex often tells those of us who protest the locking up or the abuse of our people that we are “too radical” or more often now “polarizing” because we don’t want to play nice with folks who are oppressing our people openly and saying horrible things about us as a people for political gain as after Virginia Tech. in Virginia our Governor Kaine did while saying no one should use the tragedy for political purposes. We lost considerable rights due to his and others’ exploitation of this tragedy in Virginia and yet we are now supposed to pretend it’s all okay, no problem, we don’t mind that you took away our civil rights and set us back 50 years. And unfortunately it is often the paid/professional person with a psychiatric disability who is enforcing this code of go along to get along and don’t make waves.
We also have less tolerance for diversity and eccentricity in our movement than we used to due to professionalization in my personal opinion. Similar in my eccentric view to the gay rights movement, we are now all supposed to be more normal than the normies and have a wife or husband, a job, a house and a car and fit in at all times and never get angry. We are beginning to oppress ourselves in my humble opinion.
I see and experience every day how the nonprofit industrial complex negatively affects the disability community, particularly in the Independent Living movement movement. I can’t begin to tell you how absolutely frustrating it is to hear a Systems Advocate say that their director said that they can’t do “that kind of advocacy” during working hours! This was in response to an invitation to join us at a rally against the budget cuts that our governor is proposing. I have had advocates tell me that there are many things that they cannot do because they now have a grant from so-and-so foundation. I’d rather not go for a grant than get a grant, and have to change the way my CIL (Center for Independent Living) does advocacy, or indeed, if it can even DO advocacy/activism at all! Unfoetunately, it seems to me that due to the very nature and set-up of ClLs, that is bound to happen. I wish that there were viable options for other, more grassroots, old-school ways to raise funds, and rid ourselves of these foundations, and government funding, too!
All systems–agencies, companies, schools,clubs, churches, and even families sometimes–once they are established, become about staying in business, about protecting “the way we do things,” about themselves. There are ways to avoid this, but it requires being very intentionally disruptive of system-think from within, which is counterintuitive to funders and agency directors and usually not valued–and actively discouraged–by them.
Another thing i thought of – from my experience of on-campus housing in the UK, it’s another example (albeit nowhere as near as oppressive to the individual as nursing homes etc, of course) of housing-based segregation which encourages social division and prejudice.
Everywhere i’ve lived with a student population associated with a particular university, the separation of “student housing” from general housing in the community has encouraged students to view local people as beneath their contempt and the local community (outside the university) as not worth bothering with, and
local non-student people to hate students and develop strongly anti-intellectual attitudes, strengthening the perception that all educated people are privileged snobs and that all poor/working-class people are uneducated and anti-intellectual, and strengthening class divisions while weakening local community cohesion in general. So, for me it became a matter of personal and political principle (after my awful first year) *not* to live on campus, and if i do get to do the MA i want to i wouldn’t even consider it, and do my best to avoid even living in a stereotypically “studenty” area…
Again, things might be different in the US – but i’d be interested on your perspective on that. Sort of parallels the queer marriage debate in a way, i guess…
Actually, i might have to go and do a blog post about the subject…
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I thought some of you might be interested in MindFreedom International and The Icarus Project as far as connecting with likeminded people (pun intended) for psychiatric advocacy/activism. The Icarus Project does or did have some ties to FH, but is its own entity.
I fully appreciate your position in your post. But what I think is off-target about Micah’s lawsuit and what no one is pointing out is the lawsuit’s focus on housing. The point is, Micah isn’t an official full-time Oakland student. According to the school’s rules, people who aren’t can’t live in the dorms. So, why not work instead to make students in the special program Micah is in “official”? That seems to me to be the heart of the issue. Suing to change a policy that lets non-official, non-full-time, non-degree seeking students live in the dorms opens a giant can of worms for the university. If they let Micah live on campus, are they required to let everyone auditing a class live on campus too? The resources are just not there in today’s economy for that. I think the lawsuit could be a lot more powerful if it were targeted at the real issue, which is that Oakland doesn’t see Micah as an official student.