Note, I wrote this more than a year ago - not sure which edition of Verse and Voice this was from:
Quoted in today's 'Verse and Voice' from Sojourners:
"To celebrate is to share in a greater joy, to participate in an eternal drama. In acts of consumption the intention is to please our own selves; in acts of celebration the intention is to extol God, the spirit, the source of blessing." -Abraham Joshua Heschel
At the beginning of my time at Progress, I struggled to understand and be at peace with a number of the ways that "service is provided," "rights are protected/respected," accountability is maintained, "interaction with the community" is facilitated, within the systems and structures of life amidst adults with intellectual disabilities in Nashville/Tennessee. I continue to struggle, some more days than others. Some days I let go, ignore, forget, don't notice, breathe deeply. Other days, I rant or make snide remarks internally, rant or make remarks to others, ask questions, cry, make fists and grr at the world, add to my plans for a very different way of life together with folks with and without intellectual disabilities in the future.
One of the things that I question and rant about is the type/quality of life/engagement with the world promoted by the "community-based involvement" (something to that effect) day program that Progress, and I assume other agencies, facilitate.
Now, I will qualify what I'm about to say with a few things:
1)I have never actually seen a calendar lined out for what each individual and group does during their community time in the day program.
1a) This is partially because they do not automatically provide these to Companions.
1b) This is also partially because I've not aggressively pursued receiving one of these calendars (I have asked a number of times in conversation and correspondence with my own supervisor and administrative program manager about this, but never received an answer - and I never actually asked the day program if this would be possible. I took the silence to mean a probable no, and I felt like I was already pushing enough buttons then that I didn't want to push another one at that time.)
2) There are some at Progress who are employed at various businesses around town (Vanderbilt, Marriott, McDonald's are the ones I know - laundry, food service, dish-washing jobs, as far as I know). From what I can tell, these are probably pretty good set-ups - offers some hard-earned personal spending money to folks, opportunity for money management skills, experience of the joys and challenges of going to work day in and day out.
3) Some of the activities that folks do in one-on-one day services (where staff meet up with their client at home or at the day program and go out "into the community" one-on-one) and the "community-based" day program itself (where people meet up at the day program and are split up into groups which go out in vans and other vehicles) - are likely enriching and engaging. Time at the park, volunteering (Meals on Wheels in the only one I've heard), and occasional free days at the Frist, the movies, concerts, etc. all seem like cool stuff to me.
Also cool is a community center that my client who gets one-on-one day services goes to for arts and crafts - he enjoys painting ceramics and gets some good one-on-one attention from the guy who leads this. He also likes to shoot hoops sometimes. Other day program participants go there too, from what I understand, but my other client who goes to day program doesn't usually go, I don't think. Again, my one-on-one person likes going to the library sometimes to get on the computer, but the other doesn't usually go during day program, I don't think, because a lot of the group day program clients are too loud for quiet spaces like the library (my client is non-verbal, so this is not an issue for him, but because others in the group aren't up for it, he doesn't usually get to go).
Note: there ends the drafted blog post that I had created more than a year ago.
I think my thought nugget then was valuable enough to give a wrap-up two cents and go ahead and post. Where I was going, after all of my caveats, was a general frustration that I experienced while working at Progress - which brings us back to the quote.
Basically, I was very struck when I first began at Progress, and throughout my time there, that a lot of the "community engagement" activities that most folks seemed to participate were: trips to stores. Spend some time at Target - check. Spend some time at the dollar store - check. Community engagement - done.
I found this life centered around shopping and consumerism (even if not that much was bought) to be a fairly sad and limited way of engaging with the world - void of some richer forms of engagement, focused on the "wrong" parts of our daily lives. It seemed and easy/convenient activity.
After living amid that for a year and a half and leaving it now - I would certainly include the above caveats, and I would also add that:
-stores can be and are valid forms of engagement with the world. Folks with disabilities have historically been absent from daily arenas such as stores. Also, simply put - there are people at stores - this is a place to interact with people. Social skills are learned, money skills are learned, decision-making skills are learned (of course, if all of these are encouraged and made possible on store trips).
-stores and fast food restaurants are often also more socially "easy" and physically accessible places to be with folks with disabilities. There's freedom to move about, talk, etc. in a wider range of ways than, say, a church, a library, an art class, etc. Perhaps we have something to learn from businesses - they want folks' business, so they're going to make it as easy as possible for as many folks to access their goods. There are likely lessons to be learned from what is "easy" and "interesting" about those experiences, that can be applied to other arenas of life that we might hope that folks would also engage in.
However - back to the quote and a life based on consumerism versus celebration. A larger theme in the "service provider" world of intellectual disabilities is that folks with disabilities in this phase of life in the US have been given titles of "consumer" and "client". Their primary role in life is now to choose and consume services provided by "direct support providers" / "caregivers". It is not to be in relationship, to produce, to bear fruit, to bear witness, to be, to do, to think. Rather, folks with disabilities have received a title for the primary role they're viewed as having - draining "the system" - consuming.
The idea is that being a "consumer/client" gives dignity. You, person with a disability, have the right to choose which service provider you'll use. However, folks with disabilities are not very often choosing their own service providers. And their money is usually not very much their own. The money running through their hands (or their caregivers' hands) comes from the government - and since it is attached to a person's need/disability, it is channeled through that person - and on to the provider agencies, and to the stores where they buy their food/supplies/other items.
I clearly do not agree with this system and these titles. I understand where they're coming from - from a seeming altruistic desire to offer dignity and power to folks who have had none (you are a consumer and client who has rights to make decisions about what goes on in your life!), and from an also well-meaning attempt to "mainstream" / normalize folks (you too can consume! in this consumeristic world we live in). Simply, it reflects mainstream US society and its dominant consumerist focus.
In contrast, Heschel (in his quote above) highlights "celebration" as an alternative to our acts of consumption. It is "to share in a greater joy, to participate in an eternal drama." As I am now in L'Arche, celebration is a key part of our life together. High-fives about the simplest pleasures and achievements of life, birthday celebrations, anniversary celebrations, liturgical celebrations, celebrations of life and belonging as a person departs a community or passes away. L'Arche knows how to party. And that is one of the great gifts that I receive in L'Arche. It flows out of our core members, certainly - I celebrated plenty with Dean and Ronez in Nashville, not because it flowed out of state or agency structures, but because it flowed out of them. Celebration also flows out of the L'Arche way of being together. We're attentive to each other's needs and desires in community - and one of our common, deep needs is to "participate in an eternal drama." We celebrate because it flows out of this attention to one another. Our bodies need to move - so we dance! God is good and present in our lives - so we eat! We have been given the gift of community - so we welcome others! Celebration is a giving and a taking that exclaims that we have been given much to be joyful for - even amid pain, frustration, loss.
I could wax endless on the contours of celebration of in L'Arche (including a felllow assistant's recent comment that celebrating at L'Arche is both stressful and fabulous - and worth doing all the more, it is a practice) - but I will end here - simply stating that celebration participates in something much deeper than consumption, and so my hope for myself and for others is that we will focus our attentions toward celebration more and more - that we'll practice it with much more fervency - than we practice our consumption.
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