Showing posts with label disability. Show all posts
Showing posts with label disability. Show all posts

February 6, 2013

readier to open my/our arms...and feeling the counter-cultural

just a couple notes to mark recent thoughts:

-At the 6-ish month mark of our opening of L'Arche Atlanta, I have to say that, while we're still learning a lot, adjusting and finding new rhythms on a regular basis, and have a long to-do list - we've also learned, done, and adjusted a LOT in the past 6 months!  

Personally, I've learned some things about myself as a leader.  Somehow, the leadership positions I've had in the past hadn't quite compared to my current role.  I've become a pastor of a small church, indeed.  And though I'm not supposed to let on to Americorps that I'm doing anything like supervising (or at least some specific tasks related to such), I'm in a supervisory role.  As one who has historically led by following, kept her mouth shut for the greater, democratic good (though I've made good strides since being called to offer my voice to "the group" at Sojo), and in more recent "executive" roles (if co-chairing student organizations counts), sought all voices and opinions at as many turns of the road...  I have been learning to take the reins, to push, to make clear requests, to tow a hard line occasionally.  

I really should have been writing more frequently over the past year - there is so much I could spill in reflection and musings here.  

As a community, we have been learning how to be with one another.  As a provider agency, we have been learning how to dot our i's and cross our t's - and let all the appropriate people know about it.  We've been calling folks to community and responsibility.  We've been putting on our "big girl pants" (or "big boy pants," as is appropriate), as Sara puts it.  In other words, we've been facing reality as it's been presented to us, and responding as best we can to it.  

Again, I could go on and on and on.  I feel like these are only introductory paragraphs to so many juicier and interesting stories.  But I want to at least begin introducing some themes here.

And the point being, here, that I've been feeling like we're in a more "stable" place the past few weeks.  The holidays were spotty, with many of us away for big stints of time.  Before that, we were barely keep our heads above water.  And now, we've got some things under our organizational belt, we've adjusted our weekly structure so that we have more community time - and with all of that, I feel like we could have a dinner guest, or craft buddy, etc. come over - and not feel like the world will tilt on end.  Not that we haven't been having dinner or other types of guests, or that it's been the most stressful thing at any point to host people.  I've been very grateful for each person we've managed to have to the house in the past 6 months.  There's such life that comes from the people who don't live within the walls of the house.  That said - I do feel an "opening up" here recently.  Life feels a bit more "supple" (as Tim recently put it), or at least with the possibility of becoming so.  We've put a nice, cozy little pillow around community time, and we've put out a number of fires that kept much of our attention the first 6 months (with still some ablaze, but they generally stay back long enough to have dinner and pray together).  Of course, that means we're again in a time of transition - so, what does stability mean for us?  What do we focus on now?  What are our priorities at this point?  

But all in all, I'm glad to be in this phase of questions, and beyond the questions of "how do I scan this entire Policies and Procedures manual and make 5 copies of it, without any of the machinery to do so within our organization?"  

-The second big theme named in the title of this post, which I have been feeling deeply lately - is the counter-cultural nature of L'Arche.  As I mentioned, we've been calling one another to community and responsibility. And while I knew that L'Arche is counter-cultural, and that we'd be a big change from the typical provider agency scene - I somehow did not realize how "against the grain" I would find us to be, in the midst of the greater disability world at-large.  The grain is (and has been) going toward encouraging self-absorption, instead of community.  

I say this in all humility, of course - ok, yes, also with a great deal of righteous indignation.  However, I must qualify by saying that L'Arche does not always get it right - "it" being community, growth, etc.  We are human beings trying to live and be together.  It's difficult, we hurt each other, and we get fussy. 

But, I of course wouldn't be here if there weren't something deeply compelling to me about what L'Arche is and hopes to be.  

And so - I continue - by saying that the phrase "person-centered planning" has become a trigger for rage within me.  It has come to mean "self-centered," "self-absorption," "all about me".  These words point to narcissism, which is a condition where one is not aware of the reality of other people existing in the world, and one's interconnectedness with them.  

My other qualifier of humility here is that I know that person-centered planning is not an evil creation of some single person who wishes to oppress and force people into narcissism - but rather the result of many kindhearted, well-intentioned, justice-seeking folks - and a result of the current, general swing of the disability world from institutions to uber-"independent" individuals with disabilities, my generation's swing from hands-off to hands-on, from punitive to "you're the most special kid in the whole wide world, you can do anything!", a result of capitalism, a result of the boostraps mentality of the United States, etc., etc.  

As Curt has put it, there is something deeply beautiful in the midst of the examples/models raised up in the world of person-centered planning.  The idea is that dreams are cast, and the tools required to move toward those dreams are put into place to facilitate the work toward those dreams.  The idea is that one might flourish, grow, become more themselves, etc. - if only they have the right supports in place to help them do so.  

Yes, ok, fabulous.  However - so often, this is not done truly in community, in a setting where one might truly develop meaningful relationships with unpaid, non-family members.

So - I feel the counter-cultural nature of what we're doing in the midst of the greater disability world, as well as greater society and provider agency land, both of which I already knew we were countering.  

And to add another layer, I've been thinking much lately about how this dynamic not only creates a counter-cultural dynamic when we place L'Arche in the midst of our neighbors.  But it also creates a counter-cultural dynamic in terms of the transition that we ask new core members to make as they enter into L'Arche.  Assistants, yes, this is a counter-cultural move for us - but there are plenty of other young, do-gooders from privileged backgrounds who do the self-sacrificial, downwardly mobile year or few in intentional community, simple living, service-focused programs - and we've been doing it for decades.  

Core members, adults with intellectual disabilities, on the other hand - we've not been calling these folks to such a life, from such similar lives as our assistants.  In the past, we've welcomed many folks out of institutions - from neglect to belonging.  A beautiful transition, even if painful at times, and even an un-workable fit for some folks along the way.  Now, we have a generation of folks who haven't suffered from neglect, but over-attention.  They've heard "yes, you're special, fabulous, you can do anything" - and to the nth degree, because if you have a disability, life has been all about your abilities.  And yet you've needed a lot of help, and thus received a lot of attention.  And we ask these folks to enter into community, where one's needs and desires must be kept in perspective with others with whom one lives?  where there is no one center human of the house-universe?

This is the ultimate counter-intuitive move, I think.  Our internal counter-intuitiveness.  The daily life we ask our members to live.  

This is, of course, not to say that this latter counter-intuitive nature of calling folks from over-attention to belonging-in-community isn't doable, that the gap is too wide to bridge, or that L'Arche is irrelevant or doesn't make sense any more.  

However, I do think that it means we're in a new generation, or phase, of L'Arche.  And I think it calls the question of how we form anyone as new members in L'Arche.  In a way, I do think this new phase of L'Arche puts potential new core members in a more similar boat with potential new assistants.  There's a kind of downward mobility ladder that one must be taught and formed by.  We are still all vulnerable, broken, etc. - despite the attention, power, etc. that we have been given.  It's a matter of getting in touch with those things to connect amongst each other as humans.  And it's likely a matter of realizing that our very accustomedness with attention, power, etc. are part and parcel with our brokenness - likely more so than the things we've assumed to be our brokenness/vulnerability/weakness (like a lack of vision, hearing, or mobility - or our disdain for public speaking, etc.), and have perhaps used as masks for our real vulnerabilities.  

January 31, 2012

un-pc-ness

The other evening, we enjoyed dinner out on the back deck.  Kathy (a core member) suggested we eat out there because the weather was so nice.  (January in Florida, I tell you!)  

So, we're out eating our hot dogs and mac and cheese around the patio table, having nice dinner conversation.  Dino notices that Pam (both core members) seems to want another bite of mac and cheese.  Pam requires some assistance with eating - mainly putting food onto the fork, and she'll put the fork in her mouth.  Sometimes if she really likes something, she'll eat too fast, so often an assistant helping Pam will move the plate closer in on the table to help her keep a safer pace.

At this moment, Pam still had a full bite in her mouth, but Dino noticed that she was eye-ing her plate, wanting more mac and cheese.  Dino tends to forget / not use names for the people around him - he'll refer to folks as "man," "boy," "girl," "woman," "lady" - maybe with an extra descriptor.  And his way of speaking has been described as an "old grumpy man" by some of the assistants - says what he's thinking, in a direct, matter of fact sort of way, and in a voice that is just kind of humorous sometimes even if he's not in a grumpy mood.

If you can imagine such a voice in your head, it will make the story better.  If we chat some time, I'll try to do his voice for you.  So he says, "Give some macaroni and cheese...to the handicapped girl."  

We all just looked at each other and smothered our shocked laughter for about 5 minutes.  Then someone said, "Dino, she has a name. Who is that?"  He couldn't recall her name.  So we then went around the table to see if he could recall anyone else's names - the only one he got right was Ben - so 1 out of 9 or so.  I guess that's alright for 1 night.  (As follow-up, Dino was able to recall about 4 of 8 names recently.  Improvements, hooray!)

But oh dear, we all laughed so hard - so inappropriate, and so humorous.  Of course, the layers of it are also funny.  He really does have a hard time remembering names - so he uses whatever descriptor he marks people with in his head.  In this case, he had an out-of-date/un-PC descriptor in his head for Pam - so he used it out loud as well.  

Then it's also interesting that "handicapped" / "having a disability" for him in this case meant "being in a wheelchair".  Does he thinks of the other core members in the community as having "disabilities"?  Is a seizure disorder a disability?  Does a low IQ constitute a disability?  Is a lack of a sense of time a disability?  Is a lack of patience a disability?...   

And then there's a sweet element to the moment - he was trying to stick up for someone else - "hey, it looks like she wants some more mac and cheese - give her some more!"