February 21, 2024 • 69 mins
When words carry the weight of our deepest experiences, they have the power to shape our reality. John O'Brien is a thinker who has profoundly influenced our understanding of the language we use to describe the lives of individuals with intellectual and developmental disabilities. Through our conversation, we unearthed how stories breathe life into words, emphasizing the need for deliberate and accurate language to communicate the true essence of personhood and experience. We examined the philosophy of personalism and its transformative effect on person-centered planning.
The tapestry of community is woven through relationships, a theme that resonated deeply in our dialogue with John. We discussed how simple acts of recognition and acceptance can be the catalyst for friendships that transcend the superficial bonds of society. Reflecting on the narrative within "Members of Each Other," our discussion ventured into the intricacies of communal membership and the hurdles faced by individuals with developmental disabilities in forming meaningful connections. We acknowledged the enduring power of assistance and companionship in historical contexts and its continuing relevance in fostering inclusive societies today.
We recognize the significance of ongoing dialogues in our collective endeavor to create a community that honors the varied gifts every individual brings to the table.
John's recommended reading:
- On The Mystery Of The Incarnation - Denise Levertov
- Members Of Each Other - John O'Brien and Connie Lyle O'Brien
- Fratelli Tutti: On Fraternity and Social Friendship - Pope Francis
- Creative Fidelity - Gabriel Marcel
- Tools For Conviviality - Ivan Illich
- Deschooling Society - Ivan Illich
- Abundant Community - John McKnight and Peter Block
- David B Schwartz books
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Dave Hasbury (00:00):
Recreating us is a neighbor's international
production.
Neighbor's international iscommitted to an asset-based
focus of co-creative change,developing the capacity to
welcome the diversity of gifts,knowledge and experiences
available in each one of us.
John O'Brien is a listener, awriter, a teacher and a
(00:25):
sense-maker.
For more than 50 years, johnhas been an ally, friend and
guide to people who care abouthow we can make it possible for
people with intellectual anddevelopmental disabilities to be
supported, to live as valuedmembers of family, neighborhood,
(00:45):
community and society.
John O'Brien (00:49):
When we introduce the idea of person, we introduce
the notion of mystery.
People are not problems to besolved, they're a mystery to
inspire wonder.
Dave Hasbury (01:06):
I'm Dave Hasbury and in this conversation we
explore the language we use toreflect the vitality of
experience and what happens whenlanguage loses its connection
with the experience and storiesthat inspire it.
We look deeper at the languageof person and the philosophy of
personalism and we discuss theexperiences that inspire John
(01:31):
and Connie Lyle O'Brien's bookMembers of Each Other.
You are one of the people whohas been more intentional and
more precise about language thanalmost anyone that I know.
(01:53):
It seems to be both an interestand an importance that you put
on the words that we use and whywe choose them, and all of that
In my view.
As somebody who's been readingand watching and listening for a
(02:14):
long time, I think I find thestuff that you write, unlike
things that other people maywrite, that there is a certain
timelessness to them.
They don't age in terms of,they don't seem like, oh, that's
kind of out of date now For me.
(02:35):
They actually kind of just holdit.
I think part of it is you payattention to where language
comes from and you bring us backto that Most of the stuff.
I remember being at a TorontoSummer Institute one year when
(03:02):
you actually just raised thewhole idea for the group about
the etymology of words andlooking up where word comes from
and finding out, like itsorigins.
Now I do that all the time.
I take a look at stuff and seewhere it comes from and what its
(03:22):
original connections were, andall that.
Anyway, I'm really glad thatyou're on this conversation
because I think it's animportant thing.
In fact, actually recently inone of our conversations you
talked about the whole idea ofendangered language.
(03:45):
I wonder if, before we even domuch else, you can just talk
about a little bit about whatyou were thinking when you
phrase that term for us in theconversation we were having with
others.
John O'Brien (04:11):
I think one aspect of being human is seeking
meaning and the ways that wemight express what's meaningful
to us.
In our experience, I think, weturn to language to help us sort
(04:42):
out situations when we get indifficulty, and vocabulary,
which is sort of what you'retalking about for me, is always
embedded in a story or anarrative or whatever word you
(05:07):
like to use for what helps you,what gives you context for the
struggle to find words forthings.
And there's a step before mycuriosity about the right words
that I think is really important.
(05:28):
I'm an amateur as far as thefield of developmental
disabilities go.
I was schooled as a philosopheror schooled in philosophy I
(05:50):
don't think I've ever made it tothe philosopher stage and I
found myself working with peoplewith disabilities by accident,
of circumstance.
So I'm not a researcher.
(06:16):
I wasn't trained to writepapers for the American Journal
of Intellectual andDevelopmental Disabilities.
I was taught to pay attentionto experience, and so the step
(06:43):
that comes before looking forthe right words is finding the
right people, and what I'venoticed is that almost anybody
can be the right person, butthat there are always
circumstances where people aremoving the edge of what we're
(07:10):
doing forward deeper into aterritory that I find valuable,
and so my first step is to findsomebody to listen to, and often
that's the place or alwaysthat's the place where the image
(07:37):
or the phrase or thepossibility comes alive, and so
lots of what I write isreflection on those generative
(08:05):
statements, images that comefrom the experience of people
who are living the struggle fora better life by all the
pressures of social devaluationand social exclusion.
So when the words have life,when they reflect actual
(08:32):
experience, they have power,which I'm trying to find a way
to reflect and reflect on.
(08:53):
What happens to lots of thosewords is they become abstract.
They're like a balloon thatgets blown up with too much
helium and starts to floataround and sound funny.
So words, like person-centeredplanning, have life in some
(09:23):
contexts, and in some contextsthey're just filling out a form,
and the more intentionmindfulness is lost from what
we're doing, the more strange,the more the word floats away
(09:53):
and then it kind of runs out ofsteam and it's like a balloon
that collapses and falls back toearth.
There's a German sociologistcalled Ui Puchsen who wrote a
lovely book called Plastic Words, and plastic words, in his
(10:20):
understanding, are words thatget taken up into bureaucratized
science that lose their lifeand turn into our now kind of
milled like, or extruded likebits of plastic, and I think
(10:45):
that's an easy thing to happen.
And so I keep looking forplaces that are alive and then
trying to listen into thoseplaces to discover people's
stories of their struggles, oftheir achievements, of their
(11:08):
puzzlements.
Dave Hasbury (11:11):
Well, and I think that's why so much of what
you've written actually remainsas reference points for a lot of
people who continue to try toexplore the edges, because it's
been rooted in the story of realpeople that becomes
(11:33):
recognizable to people.
People start to recognize thatthis is related to somebody that
they know or somebody that theylove or somebody that they
support.
But I wanted to just step backfor a second, because you
touched upon something that Iwas hoping to ask you about,
which is you have been committedto this journey of being a
(12:04):
novice or I forget the term thatyou used for the developmental
intellectual disabilityreference but you've stayed
paying attention for a very,very, very long time, and you're
somebody who could have chosenmany, many different places to
(12:26):
put your attention.
This is one, and I've actuallynoticed and watched over the
years how, as some of us get,our attention gets grabbed by
other things that seeminteresting.
You always bring yourself back.
You don't necessarily bringothers back, but you always
(12:47):
bring yourself back to whereyour commitment lies, and I
wonder if you could just say alittle bit about what was that
early accident that you ended upmaking a commitment to for
decades.
What was it that happened, thatyou found some vital experience
(13:12):
that kind of grabbed yourattention and said well, I'm
going to pay attention to this.
John O'Brien (13:33):
Denise Levertov.
The poet wrote a poem that ifI'd been prepared I would have
looked up, but the first line issomething like when we have
seen the worst that humans cando, it cracks the shell.
(14:00):
And I came into this work in1968 when the situation of
people with significantimpairments in institutional
(14:20):
settings were in the directionof the worst that we could do,
and I had a chance to be part ofsupporting some people to get
out of those circumstances andinto something that was
(14:45):
immeasurably better andimmeasurably short of the best
that we have done.
And I remain concerned abouthow easy it is to forget about
(15:11):
those people, to pretend thatthe institution no longer exists
, when in fact we have lots andlots of people, including
children, finding their way intoinstitutional settings.
We have all manner of servicesthat are immeasurably better
(15:37):
than the old fashionedinstitution, but galactically
far away from what is reallypossible and achievable, and
people keep their minds to it,and so I have been stuck in that
(16:03):
way.
The other way, I suppose, isthat I have probably found more
ways to fail at influencingpeople than anybody else or
anywhere else and I am obsessedabout this pretty consistent
(16:34):
failure.
People are sometimescomplimentary about what I have
got to say, but if you look atthe actual impact of lots of it,
I have done that up to verymuch.
That doesn't bother me,probably as much as it should.
As much as it should so much asit keeps me curious.
(16:58):
And so I keep looking around tosee who else is doing something
that might help, that mightreduce my next failure, make my
next failure more interesting.
So that brought Connie and meinto contact with John McKnight
(17:20):
way back in 1973 or so.
I think that has turned intoquite a fruitful relationship
for lots and lots of people.
So I am always looking for whois trying to understand the way
(17:44):
organizations work and change tosee does any of that have a
place?
If I were a more giftedstoryteller, if I didn't have
all this complex stuff runningaround in my head that finds its
way out onto the paper, I wouldprobably be more influential
(18:10):
and have.
If it wasn't hard to read whatI wrote, I would probably be
more influential and have fewerfailures.
But given that that's what I amcursed with I keep looking for,
is there another angle on thisthat would give us a little bit
(18:34):
more purchase Sure.
And that's what part of whatbrings me to my fascination with
.
What is the power in this word?
Where is the?
Is there any source of life inthese words?
Dave Hasbury (18:58):
Well, I know that because I've heard you share
before about the failure toinfluence and, at the same time
as all of that, there are manypeople who have been influenced
by the way you think.
John O'Brien (19:19):
Oh sure, I don't discount that.
My point is only the actualimpact on the lives of people
with disabilities.
That's where the failurehappens.
It's not so hard for people tosay that's a really good idea,
but when it actually comes downto figuring out how to translate
(19:39):
that into something, yeah, and.
Dave Hasbury (19:44):
I stuck, yeah, and I see that, and so what I kind
of hear and what you're sayingis the worst of situations that
you visibly and viscerallyexperienced in those early
institutional experiences thatyou had.
It was very vital and you canstill see the resonance of it.
John O'Brien (20:13):
It's not just the bad part.
Yeah, it's witnessing whathappens when people even have a
minimum of human connectednessand the minimum of environmental
(20:43):
conditions that allow a personto act like a human being.
Yeah, yeah.
It's in an odd way, it's howeasy it is.
Yeah, there are obviously somepeople that struggle with
impairments that are verycomplex and difficult, but it is
remarkable.
(21:03):
And so it's that flash, it'sthat moment when things shift
for a person that hooked me.
Hmm, not just the awfulness ofit, sure, and if I think it was,
(21:24):
I think if it had been just theawfulness, I don't think I
could have lasted.
Dave Hasbury (21:31):
Hmm, it's really interesting.
I was in a conversation earliertoday with somebody who works in
a support organization and hadbeen working side by side with
somebody to prepare apresentation on natural language
(21:56):
speaking so that it's not aboutspecial and disabled and all
that kind of stuff, but justordinary language to describe
people's lives.
And they were working alongsideand invited somebody who
experienced that part of life toparticipate in making this.
And at the end of it the personsaid, um, he looked at her and
(22:30):
said did you know that I'm aperson?
And she kind of was taken abackby it and said of course I know
you're a person.
But she said in the middle ofit all she realized that this
was an 80 year old man who hadspent the bulk of his life under
(22:56):
care systems and that no onehad actually spoken of him or
treated him in that ordinary wayas a side by side person to
(23:16):
person experience.
And it was a real wake up callfor her to kind of go wow.
And for me it kind of resonateswith what you're saying about
how small and simple things arethat can make huge amounts of
difference.
John O'Brien (23:34):
But just having the attention to, to pay
attention differently and to actout of that attention
differently so and that's theother thing that you see or that
we saw a couple generations agoin the experience of
institution survivors.
(23:55):
The people who survived hadsomebody who recognized them as
a person.
And for the more, for the lessimpaired people, the people that
kind of wound up in theinstitution for who knows why,
(24:17):
not doing very well in schooland having a difficult family or
get in trouble with a law orwhatever, people bonded with
each other.
People came together and kindof formed gangs, people that
treated each other like peopleand the hell with the rest of
the people that don't see usthat way.
But more impaired people whowere more dependent, where the
(24:43):
death rates were frighteninglyhigh, the people who survived
had somebody who saw them as aperson and treated them as the
person.
Even within the terrible limitsof the understaffed,
(25:05):
underresourced, not enough toeat too cold in the winter to
about in the summer, maybe noclothes that are reliable.
Even in those circumstances,what comes up is somebody saw
the person, somebody saw theperson's face.
Dave Hasbury (25:30):
And even without language.
At that point it's just anexperience of being treated in a
way that recognizes somethingcalled personhood or humanity or
whatever.
That is so almost entirelypreverbal.
John O'Brien (25:52):
Regardless of whether we're capable of speech
or not.
That speech is an alternativeto some kind of more embodied
set of channels to recognizeeach other.
It comes before words, notinstead.
Dave Hasbury (26:21):
Yeah, well, this whole idea of person is one of
the things.
I was hoping to have aconversation with you Because of
something that recently came upthat you were involved in.
You got invited by folks inSouth Korea to do some thinking
about person-centered planningand all of that kind of stuff,
(26:43):
and you wrote a little paperabout the language of person and
person-centered and I wonder ifyou want to.
So you say in that paper thatfor me, person takes its meaning
from the philosophicaltradition of personalism and
(27:03):
then you list some of what thatmeans.
Could you talk a little bitabout that, about what
personalism is and thephilosophy of personalism, and
what are some of those coreelements that you were bringing
forward to the South Koreanfolks as they were thinking
about person-centeredness,person-centered work?
John O'Brien (27:25):
Well, personalism as a philosophy is a movement in
European philosophy that beginsto develop when the world is
(27:49):
beginning to experience theconsequences of the rise of
fascism and up through theperiod after the Second World
War, when the world has beenturned upside down and inside
(28:11):
out by World War One and so muchof what people had imagined was
the case about humanity wasdestroyed and people were trying
(28:32):
to figure out what has meaning.
What is the human project allabout?
How do we get in these?
How did these terrible thingshappen?
And so a number of philosopherslots of French, at least the
(28:58):
ones that I learned from fromdifferent angles began to try to
appreciate what was distinctiveto humans, not distinctive in
(29:21):
the sense that it sets us aboveeach other or the planet and its
creatures, but what is the giftof personhood and what
conditions allow the person tothrive.
(29:46):
And a lot of this was developedin Catholic social teaching,
and the current hope continuesto work from that point of view.
And so, as I think I said aswell in the little paper, not
(30:10):
everybody would agree with mysource for this or where I
learned about it, but where Ilearned about it was by no means
exclusively religious root, butwas the root in who are we
(30:33):
really and what do we owe eachother, and those seem to be
questions that concern all of usand that people with
disabilities and other peoplewho are vulnerable to social
(30:54):
exclusion are particularlyvulnerable to or particularly at
risk of.
And that doesn't mean thatpeople don't find effective ways
to resist.
People do.
That's one of the amazingthings about us as humans is, no
(31:16):
matter what we have to workwith, we can find a way to make
a life, and make a life that hasgood in it, much good in it,
sometimes, even when the outsidecircumstances look bad.
(31:38):
So there's a substantial body ofthinking about personalism.
For me, it boils down tosomething in practical terms
that's pretty simple and thatdoes run against the grain of a
(32:03):
lot that is common in ourculture, because ours is a
culture that, from my point ofview, greatly values autonomy,
the single person by themselvesmaking it or not making it in
(32:24):
competition with others, andthat gets expressed in things
like a desire for independenceand choice.
(32:45):
That translates into a prettysuperficial understanding of
what choice is what autonomyreally means, and so you end up
with the person-centeredplanning as make a wish activity
(33:08):
, looking for things that aregood things to look for trip to
Disneyland, a chance to go tothe beach, whatever good
experiences, good things to bedoing but not anywhere near the
(33:29):
depth of who any person is andwe don't.
We spend our lives, I think,trying to work out who we are
and what our contributions canbe and what it is that brings
(33:50):
meaning to our lives, and Ithink one of the hallmarks of
truly excellent supports forpeople is that the same idea
(34:10):
animates relationships there.
We're looking for, for yourgifts, for your potential
contributions to the common good, and so we believe that there
is a common good, not just asort of odd lot of atomistic
(34:36):
individuals fighting for theirshare of consumption.
Dave Hasbury (34:45):
Well, in your paper you, coming out of the
personalism thing, you say theperson is a word that points to
these aspects of being human,which are we're inviolably
dignified by our existence, notby what we do or what interests
(35:11):
we serve.
We're relational beings, we'reirreplaceable in our uniqueness,
we're moral actors and wethrive when we can be
responsible for our freedom.
What was the importance ofsharing that perspective with
(35:34):
the folks in South Korea whowere asking you about
person-centered planning?
John O'Brien (35:42):
Well, if we're looking for what we mean by
person, if that's what we meanby person, then we will be
trying to figure out how toorder our place in people's
lives.
If we are committing aperson-centered plan, conspiring
(36:05):
to commit a person-centeredplan, will, when we come out of
it, look back and wonder whatwas the relational dimension of
this?
Did we do this as if this wasjust a personal lump, as seen
(36:27):
through the eyes of a group ofpeople who are authorized agents
of the system?
Or, and in some places thatgroup of system agents is called
a circle of support.
Right, and that's okay.
(36:51):
Except those people aren'tgoing to help you move house you
know when you're and they maynot even align with helping you
get your own house because theygot other things to connect to.
So we commit offenses againstthe reality of our
(37:14):
interdependency and we pretendthat if you are in some sense
dependent, you're less than uswho are independent, who can
check all the boxes on the skillof skills for independent
living list.
(37:35):
And if we are serious about theconcept of person, or the idea
of person incorporating thenotion of uniqueness, then what
(38:00):
have we discovered?
Even a little tiny bit aboutwhat this move, what makes this
person themselves as distinct?
from everybody else, or are wejust kind of filling in the form
(38:20):
on somebody that we figurewe've got figured out?
We know who you are, we knowwhat you need.
You are transparent to us, thenotion of when we introduce the
idea of person, we introduce thenotion of mystery.
(38:46):
People are not problems to besolved, they're a mystery to
inspire, wonder.
So where's the moment?
If we've had a good experiencewith our planet, there'll be a
(39:07):
moment of wonder, of awesomenessa word that's completely
destroyed now, but awe is whatperson inspires, right?
If I catch a glimpse of aperson, that is an awesome
(39:28):
mystery.
That's there sitting with usand we have the privilege to
appreciate what that uniquenessmight mean.
We're moral actors in terms ofthe common good, and so, again,
(39:55):
if we're planning doingsomething called person-centered
, planning with a consciousnessof person, this consciousness of
person, then we're looking forthat person's obligation to the
common good.
It really isn't okay if theperson's current situation is
(40:18):
one in which they're withdrawn,in which they're disconnected,
in which they're not a part ofanything, in which they're not
belonging to any effort to makethings better, and that doesn't
have to mean people are spendinghours and hours slaving away at
(40:43):
something.
It means very simple thingsabout the way people are with
the people that support them andthe way that everyday
relationship goes.
It means what difference are wemaking in our neighborhood?
And it introduces the idea thatwe actually have an obligation
(41:06):
to the common good and that'snot something that you pronounce
on, wave your finger at orwhatever.
It's just if we're not seeingpeople feeling their gift with
(41:26):
the confidence and the supportthat they require to act on that
gift, then we're nowhere nearperson-centered planning.
Anyway, that was a sort of.
That's the sort of thing thatgoes on in my head when you ask
me why I did that.
Dave Hasbury (41:48):
So what?
For me there's kind of a flowto this that brings me to one of
my favorite works that youpublished with Connie, called
Members of Each Other.
It is really one of myfavorites in what you've written
(42:12):
and again I feel thatparticularly the first good part
of the book actually remainswith that kind of timeless
quality to it.
And I love one of your openingsfrom Wendell Berry's character,
(42:33):
burley Coulter.
He says the way we are, we aremembers of each other, all of us
, everything.
The difference ain't in who's amember and who's not, but in
who knows it and who don't.
And for me the word person onlymakes sense in the context of
(43:00):
member, like there is obviouslya solo existence.
I mean there are peoplealthough we're not social.
We're not solo beings, we'resocial beings as humans.
And so this whole notion ofmember for me is another concept
(43:22):
because another realm ofthinking about, and I use as a
reference point whenever I dosomething like a person-centered
plan with a group of people.
It's always about who are yourpeople, however small that body
(43:43):
of people is and however strongor fragile the bonds are between
people who are those people.
And I remember being at TorontoSummer Institute again one year
(44:05):
that Connie was with us and sheshared a story of a woman that
she had just met.
I think it might have been at aconference or something, I
can't even remember exactly.
And it gets back to the earlierthing.
We talked about how small stuffthings can be, and Connie
(44:26):
simply treated the person with agenerous honoring you know just
the kind of openness to her asa person and it almost
immediately became Conniebecoming her friend because of
(44:49):
this experience.
And so there's for me, there'sthis thing about not only is
personhood an important elementof who we are, but membership is
as important as the person, andit's actually where the mystery
(45:10):
plays out.
You know it's like the mysteryplays out between us.
You know it's that kind ofthing.
So I wonder if you could talk alittle bit about what brought
you to the place of that wholeframing of that.
The title of the book hasalways stayed with me members of
each other.
And just what were the, whatwas going on at the time that
(45:32):
led you to the idea that thiswould be something that would be
worth sharing with the world?
John O'Brien (45:41):
Well, we have to acknowledge St Paul as one of
the sources of the concept ofmembers of each other.
Burley is quoting the epistlesof the Ephesians pretty much in
rural Kentucky tobacco farmlanguage.
(46:14):
Right now we're.
It's an interesting time rightnow because we're we're
interested from the point ofview of public policy.
We've gotten interested inloneliness.
We've gotten interested inpeople who aren't members.
Right, the surgeon general ofthe United States a couple
(46:36):
months ago issued advisory aboutloneliness and how to overcome
it, and one of the concerns thathas been very lively in the
(47:01):
developmental disabilities worldhas been the question of
people's relationships and for awhile we framed it exclusively
in terms of loneliness and theregot to be some debates and
things that were puzzling toConnie and me.
(47:22):
Could a paid person be aperson's friend, for example?
That to be a still is sometimessomething people worry about.
That notion that I talked aboutbefore of starting from
(47:47):
experience makes.
That puts that question in adifferent light, because in fact
there are friendships betweenpeople and people who are paid
to support them, and whetherthere should be or shouldn't be
(48:09):
it doesn't matter, becausethat's not what a friendship is.
And of course that takesnothing away from the potential
for people being abusive friendsor for people being artificial
friends or for people topretending I'm your friend and
(48:33):
not having that be a realfriendship.
So we were looking in thatmembers of each other book.
In the various chapters of it,we were looking at this question
of membership from differentangles and in the context not
(48:56):
just of friendship as atreatment for loneliness or
friendship as a good, as part ofwhat us humans need in order to
(49:19):
thrive, and as something that'scontextual in terms of what's
how you're seen, how you'retreated, what you have access to
.
We can identify a lot of thingsthat make people with
disabilities hard to meet orhard to pursue a friendship with
(49:44):
right, and the first one is ifpeople believe it's impossible,
right, if people just and therewas a time that there was a
there were several controversialpublications that in the
(50:05):
editing process, were reallyhard to get through because
reviewers would say this iscompletely fair, a fairy tale.
This presumes that thisnon-disabled, this severely
impaired person and this, youknow, sort of upscale person
(50:27):
could be friends.
That can't be, that they can'treciprocate, they can't.
You know, there's so manythings getting away and part of
what we were trying to do isjust find some angles to look at
the thing so that we could geta little bit different handle on
it, and one of the mostpowerful things that we explore
(50:51):
in some of that book is thepower and the terror of asking
(51:17):
so we looked at some of the workthat had been done with
rescuers of Jews in the secondworld war and the sociologists
who had studied many of thepeople who were memorialized in
(51:43):
Yad Vashem the people that thatsaved people, the Gentiles that
saved people discovered whenthey listened to the stories
that the most common reason thatpeople did it was that somebody
that people took people in atthe risk of their own lives was
(52:03):
somebody asked, somebody justsaid would you help this person
or would you help me?
And not everybody said yes, butpeople said yes, and people
remained many times faithful tothat, to that response, and so
(52:27):
we began to think about how tobe sure that we recognize the
power that people withdisabilities have to recruit
people into their lives if wecan figure out how to get them
in contact.
So we both know people withsignificant impairments in
(52:53):
verbal communication and soforth who are powerful
recruiters of other people, whowho can bring people in if you
can just get all the stuff outof the way that keeps their
(53:14):
keeps them from making contactwith somebody.
And I think what's particularlybeautiful is that it isn't
necessarily will you help me,it's will you join me?
Can we do this together?
Can we get involved in this?
I don't know the surgicaldancing thing together, or sure
(53:37):
project to close theinstitutions together or
whatever it is.
And we've done such a poor jobat pushing back at this, these
disconnecting forces that we've,that many, many, many people
(54:01):
with disabilities have justgotten on with creating their
own memberships with each other.
Sure the hell with the rest ofus in a sense and I think that's
a good thing that has a realdownside, and the downside is it
(54:24):
takes away the reminders ofinterdependency, the reminders
of the power of undoing otherring.
That happens when peoplestruggle to create inclusive
settings right.
So to me, the only thing that'sproblematic about people coming
(54:50):
up with their own connectionswith other people that are like
them in the sense of sharing asimilar experience of disability
, is, I mean, to me that againis another testimony to the to
the power of relationship andthe need for it and the desire
(55:13):
to reach out for it, but it alsodisadvantages the rest of us.
No particular reason thatpeople with disability should be
doing the hard work, but, onthe other hand, the common good,
the journey to the belovedcommunity, requires the courage
(55:38):
for people to put themselves innew and different situations and
relationships.
Dave Hasbury (55:50):
I think of.
I mean, like there was justsomething about this phrase
members of each other and theway Burley Coulter references it
and you speak of St Paul's,it's almost like a pre-existing
condition.
The membership is actually.
That's the starting place, andthese invitations into things
(56:15):
are actually opportunities tomanifest it, to actually
experience what already existsand has this kind of mystery
quality to it because wewouldn't have thought about it.
(56:39):
But there is an experience whenyou can come together in
difference and uniqueness andall that kind of stuff and come
to a realization that we are,we're just members of each other
, like there's a visceral thingthat happens in those moments
(57:00):
that you can.
So I can only imagine that thepeople who said yes to the
invitation found themselves inthe reality of members of each
other kind of thing, and thatfuels that One of the things
that you said in that book.
(57:25):
It says unless citizens exercisecaution, the concept of social
support will obscure a necessaryfact about the foundations of
civil life.
We will forget that we aremembers of each other and that
the quality of our lives dependson remembering this in daily
(57:47):
action.
Do you want to say a little bitabout that and what you see in
terms of, because some of thisis we've set up these systems of
social care which are adifferent form of relationship.
There are people within thatwho form just genuine
(58:09):
relationships, but the systemhas got its own structures and
definitions about whatrelationships are all about.
So do you want to just say alittle bit about this kind of
social support.
John O'Brien (58:20):
Well, I think it's part of the what some people
are now calling the poly crisisthat we're in right now.
And to go back for a minute tobully Burley Coulter, his
(58:40):
creator, wendell Berry, haswritten a series now it's, I
think, upwards of 17 or 18 booksabout what he calls the Port
William membership, which is afictionalized version of this
(59:01):
part of Kentucky where peoplefarmed, grew tobacco, and part
of what those books are about isthe loss of context.
Right, that changes inagriculture, changes in scale
(59:26):
and method of agriculture,create situations that don't
bring people together, thatdon't create membership.
You could not farm in this partof the world before machinery
showed up without neighborshelping each other out, right?
(59:48):
If you didn't do that, you wereclearly an outsider.
Right?
You showed up for each other inall kinds of ways in the
context of daily life and whatWendell Berry has written about
(01:00:08):
in several books of quitebeautiful essays.
He's a kind of controversialguy, but I think he's got.
He writes beautifully and hasreally powerful points about
what we've lost, what we'vetaken away with industrialized
agriculture, with policies thatdrive people off the land, and
(01:00:41):
so what he's trying to figureout with some of his characters
in his books is.
Can you even think about thisprecondition that you're
speaking of when people are so,when things are so derationated,
(01:01:03):
when people are so atomized,when people's connections, when
the church is increasinglysmaller the church buildings
might be big but the occupancyis really small and is trending
(01:01:25):
down when we've got this oddcrisis of caring right culture
of rejection of caring?
Washington Post yesterday, daybefore yesterday, article about
we can't find volunteers now tohelp operate children's
(01:01:48):
nutrition programs, we can'tfind nurses, we can't find
teachers, we can't findteachers' aides, we can't find
people in the field of socialcare.
Doctors are quitting left,right and center.
People seem to be in flightalmost from being in situations
(01:02:15):
where they're called on to,where we're called on to care
for each other, and that seemsto me to be a really significant
dilemma.
And part of what we were tryingto do was to learn something
(01:02:37):
about by writing that book.
To learn something about, tolearn something about what are
people doing about this.
So some of the book is kind ofmore conceptual, or words, words
, words, words.
Some of it is.
Here's what some people aredoing.
Here's what some people inPennsylvania were doing back
(01:03:00):
when we wrote the book to bringpeople together, to gather
people on purpose, to see agathered circle of support as
the foundation for any kind ofsignificant improvement in
people's quality of life.
(01:03:20):
Here's what some people aredoing around citizen advocacy.
Here's what options incommunity living is doing about
having a community builder.
And here's what John McKnightand Kathy Larimer are up to in
South Chicago with trying tobuild off a neighborhood
(01:03:46):
organization base.
Dave Hasbury (01:03:49):
What are your thoughts about that whole idea
of what people have done?
And, again, the getting back tothe awesomeness of who a person
is and the member precondition.
(01:04:12):
So often these things get donebecause somebody is seen to be
outside of community culture,all this kind of stuff, and it
often can get translated into adoing for somebody who's less
fortunate kind of thing.
But it always strikes me thatthe we who are inside, not the
(01:04:41):
outsider we're actually missingsomething.
We're actually missing, and Iwonder if you could just talk a
little bit about that in termsof the orientation to what this
(01:05:02):
work is.
If it's really about kind ofrealizing the members of each
other precondition, how do wehave to think and act
differently in that, given thatwe have these systems?
Like, one of the things aboutthe systems of social care is
(01:05:25):
that they are entirely builtaround the notion of increasing
the perception of someone'sdeficit, of what they don't have
, in order for them to besupported.
And so how do we approach this?
In a way, that's about the getsmore at this mystery element,
(01:05:50):
gets more at this members ofeach other element that changes
the way we see and thereforechanges the way we act.
John O'Brien (01:06:02):
I wish I knew, but I do have a thought or two.
One of them is part of what wewere up to with the members of
each other book, and probablyalmost everything else I've ever
put in words on paper is tochange our perception of purpose
(01:06:26):
.
What if it weren't remediatingor caring for deficiency?
What if the problem we weretrying to solve was was moving
(01:06:48):
toward the beloved community?
What if our purpose was tobuild community?
And what if we recognized thatone of the fundamentals of
building community ishospitality, that hospitality is
(01:07:08):
a fundamental virtue that makesit possible for us to be human,
be persons.
What if we took it seriouslythat we should welcome strangers
?
As for the Greeks, you know theclassical Greeks they had a
(01:07:36):
story of the God showing up atsomebody's door and if the
people weren't hospitable, theywere ended.
They no longer were alive whenthey said no to Zeus when he was
(01:07:59):
knocking at the door and theguys of a beggar.
And obviously there's theJudeo-Christian injunctions to
welcome the stranger and therecognition that in the stranger
(01:08:19):
we may encounter, we mayentertain angels unaware.
So what if that were what wethought the problem was and we
needed to partner with peoplewho were at particular risk of
(01:08:46):
social exclusion because ofbeing seen as less than a person
or as other in some threateningor puzzling or dangerous ways,
and people who experienceimpairments that require some
accommodation in order toparticipate.
(01:09:08):
What if that was the problemand again that's where my
multiple failures come in istrying to figure out some way to
send that message that oursystems of social care could
(01:09:33):
respond to.
Dave Hasbury (01:09:39):
Well, I could go on on this and I am sure I will
call you again for moreconversations.
For example, in members of eachother, you actually go on to
bring up Ivan Ilych and JohnMcKnight and the whole systems
of social care and what happensto freely chosen relationship,
(01:10:05):
communal experiences, when thoseare interviewed.
It's kind of the equivalent ofWendell Berry's what happens
when we make all of our farmingmachine oriented and what
happens to all the relationships.
So I'd love to talk to you more.
You also, in that book, go onto talk about the linguistic
roots of friend, and I'd love tohave that conversation too,
(01:10:29):
just about friend, because it'slanguage that gets tossed around
all the time in a very thinveil kind of way, and yet it's a
deep concept of friendship thatactually has been a binding
force in our human experiment.
(01:10:50):
Well, john, thank you so muchfor spending this time and, like
I said, I can only imagine thatI'll be calling again for other
conversations along the way.
Thanks for listening.
Stay tuned for future episodesexploring more aspects of what
it takes to recreate a moreinclusive and dynamic experience
(01:11:15):
of us.
Please subscribe to our podcastat your favorite podcast outlet
.
Recreating us is a neighbor'sinternational production.
Recreating us is a neighbor's international
production.
Neighbor's international iscommitted to an asset-based
focus of co-creative change,developing the capacity to
welcome the diversity of gifts,knowledge and experiences
available in each one of us.
John O'Brien is a listener, awriter, a teacher and a
(00:25):
sense-maker.
For more than 50 years, johnhas been an ally, friend and
guide to people who care abouthow we can make it possible for
people with intellectual anddevelopmental disabilities to be
supported, to live as valuedmembers of family, neighborhood,
(00:45):
community and society.
John O'Brien (00:49):
When we introduce the idea of person, we introduce
the notion of mystery.
People are not problems to besolved, they're a mystery to
inspire wonder.
Dave Hasbury (01:06):
I'm Dave Hasbury and in this conversation we
explore the language we use toreflect the vitality of
experience and what happens whenlanguage loses its connection
with the experience and storiesthat inspire it.
We look deeper at the languageof person and the philosophy of
personalism and we discuss theexperiences that inspire John
(01:31):
and Connie Lyle O'Brien's bookMembers of Each Other.
You are one of the people whohas been more intentional and
more precise about language thanalmost anyone that I know.
(01:53):
It seems to be both an interestand an importance that you put
on the words that we use and whywe choose them, and all of that
In my view.
As somebody who's been readingand watching and listening for a
(02:14):
long time, I think I find thestuff that you write, unlike
things that other people maywrite, that there is a certain
timelessness to them.
They don't age in terms of,they don't seem like, oh, that's
kind of out of date now For me.
(02:35):
They actually kind of just holdit.
I think part of it is you payattention to where language
comes from and you bring us backto that Most of the stuff.
I remember being at a TorontoSummer Institute one year when
(03:02):
you actually just raised thewhole idea for the group about
the etymology of words andlooking up where word comes from
and finding out, like itsorigins.
Now I do that all the time.
I take a look at stuff and seewhere it comes from and what its
(03:22):
original connections were, andall that.
Anyway, I'm really glad thatyou're on this conversation
because I think it's animportant thing.
In fact, actually recently inone of our conversations you
talked about the whole idea ofendangered language.
(03:45):
I wonder if, before we even domuch else, you can just talk
about a little bit about whatyou were thinking when you
phrase that term for us in theconversation we were having with
others.
John O'Brien (04:11):
I think one aspect of being human is seeking
meaning and the ways that wemight express what's meaningful
to us.
In our experience, I think, weturn to language to help us sort
(04:42):
out situations when we get indifficulty, and vocabulary,
which is sort of what you'retalking about for me, is always
embedded in a story or anarrative or whatever word you
(05:07):
like to use for what helps you,what gives you context for the
struggle to find words forthings.
And there's a step before mycuriosity about the right words
that I think is really important.
(05:28):
I'm an amateur as far as thefield of developmental
disabilities go.
I was schooled as a philosopheror schooled in philosophy I
(05:50):
don't think I've ever made it tothe philosopher stage and I
found myself working with peoplewith disabilities by accident,
of circumstance.
So I'm not a researcher.
(06:16):
I wasn't trained to writepapers for the American Journal
of Intellectual andDevelopmental Disabilities.
I was taught to pay attentionto experience, and so the step
(06:43):
that comes before looking forthe right words is finding the
right people, and what I'venoticed is that almost anybody
can be the right person, butthat there are always
circumstances where people aremoving the edge of what we're
(07:10):
doing forward deeper into aterritory that I find valuable,
and so my first step is to findsomebody to listen to, and often
that's the place or alwaysthat's the place where the image
(07:37):
or the phrase or thepossibility comes alive, and so
lots of what I write isreflection on those generative
(08:05):
statements, images that comefrom the experience of people
who are living the struggle fora better life by all the
pressures of social devaluationand social exclusion.
So when the words have life,when they reflect actual
(08:32):
experience, they have power,which I'm trying to find a way
to reflect and reflect on.
(08:53):
What happens to lots of thosewords is they become abstract.
They're like a balloon thatgets blown up with too much
helium and starts to floataround and sound funny.
So words, like person-centeredplanning, have life in some
(09:23):
contexts, and in some contextsthey're just filling out a form,
and the more intentionmindfulness is lost from what
we're doing, the more strange,the more the word floats away
(09:53):
and then it kind of runs out ofsteam and it's like a balloon
that collapses and falls back toearth.
There's a German sociologistcalled Ui Puchsen who wrote a
lovely book called Plastic Words, and plastic words, in his
(10:20):
understanding, are words thatget taken up into bureaucratized
science that lose their lifeand turn into our now kind of
milled like, or extruded likebits of plastic, and I think
(10:45):
that's an easy thing to happen.
And so I keep looking forplaces that are alive and then
trying to listen into thoseplaces to discover people's
stories of their struggles, oftheir achievements, of their
(11:08):
puzzlements.
Dave Hasbury (11:11):
Well, and I think that's why so much of what
you've written actually remainsas reference points for a lot of
people who continue to try toexplore the edges, because it's
been rooted in the story of realpeople that becomes
(11:33):
recognizable to people.
People start to recognize thatthis is related to somebody that
they know or somebody that theylove or somebody that they
support.
But I wanted to just step backfor a second, because you
touched upon something that Iwas hoping to ask you about,
which is you have been committedto this journey of being a
(12:04):
novice or I forget the term thatyou used for the developmental
intellectual disabilityreference but you've stayed
paying attention for a very,very, very long time, and you're
somebody who could have chosenmany, many different places to
(12:26):
put your attention.
This is one, and I've actuallynoticed and watched over the
years how, as some of us get,our attention gets grabbed by
other things that seeminteresting.
You always bring yourself back.
You don't necessarily bringothers back, but you always
(12:47):
bring yourself back to whereyour commitment lies, and I
wonder if you could just say alittle bit about what was that
early accident that you ended upmaking a commitment to for
decades.
What was it that happened, thatyou found some vital experience
(13:12):
that kind of grabbed yourattention and said well, I'm
going to pay attention to this.
John O'Brien (13:33):
Denise Levertov.
The poet wrote a poem that ifI'd been prepared I would have
looked up, but the first line issomething like when we have
seen the worst that humans cando, it cracks the shell.
(14:00):
And I came into this work in1968 when the situation of
people with significantimpairments in institutional
(14:20):
settings were in the directionof the worst that we could do,
and I had a chance to be part ofsupporting some people to get
out of those circumstances andinto something that was
(14:45):
immeasurably better andimmeasurably short of the best
that we have done.
And I remain concerned abouthow easy it is to forget about
(15:11):
those people, to pretend thatthe institution no longer exists
, when in fact we have lots andlots of people, including
children, finding their way intoinstitutional settings.
We have all manner of servicesthat are immeasurably better
(15:37):
than the old fashionedinstitution, but galactically
far away from what is reallypossible and achievable, and
people keep their minds to it,and so I have been stuck in that
(16:03):
way.
The other way, I suppose, isthat I have probably found more
ways to fail at influencingpeople than anybody else or
anywhere else and I am obsessedabout this pretty consistent
(16:34):
failure.
People are sometimescomplimentary about what I have
got to say, but if you look atthe actual impact of lots of it,
I have done that up to verymuch.
That doesn't bother me,probably as much as it should.
As much as it should so much asit keeps me curious.
(16:58):
And so I keep looking around tosee who else is doing something
that might help, that mightreduce my next failure, make my
next failure more interesting.
So that brought Connie and meinto contact with John McKnight
(17:20):
way back in 1973 or so.
I think that has turned intoquite a fruitful relationship
for lots and lots of people.
So I am always looking for whois trying to understand the way
(17:44):
organizations work and change tosee does any of that have a
place?
If I were a more giftedstoryteller, if I didn't have
all this complex stuff runningaround in my head that finds its
way out onto the paper, I wouldprobably be more influential
(18:10):
and have.
If it wasn't hard to read whatI wrote, I would probably be
more influential and have fewerfailures.
But given that that's what I amcursed with I keep looking for,
is there another angle on thisthat would give us a little bit
(18:34):
more purchase Sure.
And that's what part of whatbrings me to my fascination with
.
What is the power in this word?
Where is the?
Is there any source of life inthese words?
Dave Hasbury (18:58):
Well, I know that because I've heard you share
before about the failure toinfluence and, at the same time
as all of that, there are manypeople who have been influenced
by the way you think.
John O'Brien (19:19):
Oh sure, I don't discount that.
My point is only the actualimpact on the lives of people
with disabilities.
That's where the failurehappens.
It's not so hard for people tosay that's a really good idea,
but when it actually comes downto figuring out how to translate
(19:39):
that into something, yeah, and.
Dave Hasbury (19:44):
I stuck, yeah, and I see that, and so what I kind
of hear and what you're sayingis the worst of situations that
you visibly and viscerallyexperienced in those early
institutional experiences thatyou had.
It was very vital and you canstill see the resonance of it.
John O'Brien (20:13):
It's not just the bad part.
Yeah, it's witnessing whathappens when people even have a
minimum of human connectednessand the minimum of environmental
(20:43):
conditions that allow a personto act like a human being.
Yeah, yeah.
It's in an odd way, it's howeasy it is.
Yeah, there are obviously somepeople that struggle with
impairments that are verycomplex and difficult, but it is
remarkable.
(21:03):
And so it's that flash, it'sthat moment when things shift
for a person that hooked me.
Hmm, not just the awfulness ofit, sure, and if I think it was,
(21:24):
I think if it had been just theawfulness, I don't think I
could have lasted.
Dave Hasbury (21:31):
Hmm, it's really interesting.
I was in a conversation earliertoday with somebody who works in
a support organization and hadbeen working side by side with
somebody to prepare apresentation on natural language
(21:56):
speaking so that it's not aboutspecial and disabled and all
that kind of stuff, but justordinary language to describe
people's lives.
And they were working alongsideand invited somebody who
experienced that part of life toparticipate in making this.
And at the end of it the personsaid, um, he looked at her and
(22:30):
said did you know that I'm aperson?
And she kind of was taken abackby it and said of course I know
you're a person.
But she said in the middle ofit all she realized that this
was an 80 year old man who hadspent the bulk of his life under
(22:56):
care systems and that no onehad actually spoken of him or
treated him in that ordinary wayas a side by side person to
(23:16):
person experience.
And it was a real wake up callfor her to kind of go wow.
And for me it kind of resonateswith what you're saying about
how small and simple things arethat can make huge amounts of
difference.
John O'Brien (23:34):
But just having the attention to, to pay
attention differently and to actout of that attention
differently so and that's theother thing that you see or that
we saw a couple generations agoin the experience of
institution survivors.
(23:55):
The people who survived hadsomebody who recognized them as
a person.
And for the more, for the lessimpaired people, the people that
kind of wound up in theinstitution for who knows why,
(24:17):
not doing very well in schooland having a difficult family or
get in trouble with a law orwhatever, people bonded with
each other.
People came together and kindof formed gangs, people that
treated each other like peopleand the hell with the rest of
the people that don't see usthat way.
But more impaired people whowere more dependent, where the
(24:43):
death rates were frighteninglyhigh, the people who survived
had somebody who saw them as aperson and treated them as the
person.
Even within the terrible limitsof the understaffed,
(25:05):
underresourced, not enough toeat too cold in the winter to
about in the summer, maybe noclothes that are reliable.
Even in those circumstances,what comes up is somebody saw
the person, somebody saw theperson's face.
Dave Hasbury (25:30):
And even without language.
At that point it's just anexperience of being treated in a
way that recognizes somethingcalled personhood or humanity or
whatever.
That is so almost entirelypreverbal.
John O'Brien (25:52):
Regardless of whether we're capable of speech
or not.
That speech is an alternativeto some kind of more embodied
set of channels to recognizeeach other.
It comes before words, notinstead.
Dave Hasbury (26:21):
Yeah, well, this whole idea of person is one of
the things.
I was hoping to have aconversation with you Because of
something that recently came upthat you were involved in.
You got invited by folks inSouth Korea to do some thinking
about person-centered planningand all of that kind of stuff,
(26:43):
and you wrote a little paperabout the language of person and
person-centered and I wonder ifyou want to.
So you say in that paper thatfor me, person takes its meaning
from the philosophicaltradition of personalism and
(27:03):
then you list some of what thatmeans.
Could you talk a little bitabout that, about what
personalism is and thephilosophy of personalism, and
what are some of those coreelements that you were bringing
forward to the South Koreanfolks as they were thinking
about person-centeredness,person-centered work?
John O'Brien (27:25):
Well, personalism as a philosophy is a movement in
European philosophy that beginsto develop when the world is
(27:49):
beginning to experience theconsequences of the rise of
fascism and up through theperiod after the Second World
War, when the world has beenturned upside down and inside
(28:11):
out by World War One and so muchof what people had imagined was
the case about humanity wasdestroyed and people were trying
(28:32):
to figure out what has meaning.
What is the human project allabout?
How do we get in these?
How did these terrible thingshappen?
And so a number of philosopherslots of French, at least the
(28:58):
ones that I learned from fromdifferent angles began to try to
appreciate what was distinctiveto humans, not distinctive in
(29:21):
the sense that it sets us aboveeach other or the planet and its
creatures, but what is the giftof personhood and what
conditions allow the person tothrive.
(29:46):
And a lot of this was developedin Catholic social teaching,
and the current hope continuesto work from that point of view.
And so, as I think I said aswell in the little paper, not
(30:10):
everybody would agree with mysource for this or where I
learned about it, but where Ilearned about it was by no means
exclusively religious root, butwas the root in who are we
(30:33):
really and what do we owe eachother, and those seem to be
questions that concern all of usand that people with
disabilities and other peoplewho are vulnerable to social
(30:54):
exclusion are particularlyvulnerable to or particularly at
risk of.
And that doesn't mean thatpeople don't find effective ways
to resist.
People do.
That's one of the amazingthings about us as humans is, no
(31:16):
matter what we have to workwith, we can find a way to make
a life, and make a life that hasgood in it, much good in it,
sometimes, even when the outsidecircumstances look bad.
(31:38):
So there's a substantial body ofthinking about personalism.
For me, it boils down tosomething in practical terms
that's pretty simple and thatdoes run against the grain of a
(32:03):
lot that is common in ourculture, because ours is a
culture that, from my point ofview, greatly values autonomy,
the single person by themselvesmaking it or not making it in
(32:24):
competition with others, andthat gets expressed in things
like a desire for independenceand choice.
(32:45):
That translates into a prettysuperficial understanding of
what choice is what autonomyreally means, and so you end up
with the person-centeredplanning as make a wish activity
(33:08):
, looking for things that aregood things to look for trip to
Disneyland, a chance to go tothe beach, whatever good
experiences, good things to bedoing but not anywhere near the
(33:29):
depth of who any person is andwe don't.
We spend our lives, I think,trying to work out who we are
and what our contributions canbe and what it is that brings
(33:50):
meaning to our lives, and Ithink one of the hallmarks of
truly excellent supports forpeople is that the same idea
(34:10):
animates relationships there.
We're looking for, for yourgifts, for your potential
contributions to the common good, and so we believe that there
is a common good, not just asort of odd lot of atomistic
(34:36):
individuals fighting for theirshare of consumption.
Dave Hasbury (34:45):
Well, in your paper you, coming out of the
personalism thing, you say theperson is a word that points to
these aspects of being human,which are we're inviolably
dignified by our existence, notby what we do or what interests
(35:11):
we serve.
We're relational beings, we'reirreplaceable in our uniqueness,
we're moral actors and wethrive when we can be
responsible for our freedom.
What was the importance ofsharing that perspective with
(35:34):
the folks in South Korea whowere asking you about
person-centered planning?
John O'Brien (35:42):
Well, if we're looking for what we mean by
person, if that's what we meanby person, then we will be
trying to figure out how toorder our place in people's
lives.
If we are committing aperson-centered plan, conspiring
(36:05):
to commit a person-centeredplan, will, when we come out of
it, look back and wonder whatwas the relational dimension of
this?
Did we do this as if this wasjust a personal lump, as seen
(36:27):
through the eyes of a group ofpeople who are authorized agents
of the system?
Or, and in some places thatgroup of system agents is called
a circle of support.
Right, and that's okay.
(36:51):
Except those people aren'tgoing to help you move house you
know when you're and they maynot even align with helping you
get your own house because theygot other things to connect to.
So we commit offenses againstthe reality of our
(37:14):
interdependency and we pretendthat if you are in some sense
dependent, you're less than uswho are independent, who can
check all the boxes on the skillof skills for independent
living list.
(37:35):
And if we are serious about theconcept of person, or the idea
of person incorporating thenotion of uniqueness, then what
(38:00):
have we discovered?
Even a little tiny bit aboutwhat this move, what makes this
person themselves as distinct?
from everybody else, or are wejust kind of filling in the form
(38:20):
on somebody that we figurewe've got figured out?
We know who you are, we knowwhat you need.
You are transparent to us, thenotion of when we introduce the
idea of person, we introduce thenotion of mystery.
(38:46):
People are not problems to besolved, they're a mystery to
inspire, wonder.
So where's the moment?
If we've had a good experiencewith our planet, there'll be a
(39:07):
moment of wonder, of awesomenessa word that's completely
destroyed now, but awe is whatperson inspires, right?
If I catch a glimpse of aperson, that is an awesome
(39:28):
mystery.
That's there sitting with usand we have the privilege to
appreciate what that uniquenessmight mean.
We're moral actors in terms ofthe common good, and so, again,
(39:55):
if we're planning doingsomething called person-centered
, planning with a consciousnessof person, this consciousness of
person, then we're looking forthat person's obligation to the
common good.
It really isn't okay if theperson's current situation is
(40:18):
one in which they're withdrawn,in which they're disconnected,
in which they're not a part ofanything, in which they're not
belonging to any effort to makethings better, and that doesn't
have to mean people are spendinghours and hours slaving away at
(40:43):
something.
It means very simple thingsabout the way people are with
the people that support them andthe way that everyday
relationship goes.
It means what difference are wemaking in our neighborhood?
And it introduces the idea thatwe actually have an obligation
(41:06):
to the common good and that'snot something that you pronounce
on, wave your finger at orwhatever.
It's just if we're not seeingpeople feeling their gift with
(41:26):
the confidence and the supportthat they require to act on that
gift, then we're nowhere nearperson-centered planning.
Anyway, that was a sort of.
That's the sort of thing thatgoes on in my head when you ask
me why I did that.
Dave Hasbury (41:48):
So what?
For me there's kind of a flowto this that brings me to one of
my favorite works that youpublished with Connie, called
Members of Each Other.
It is really one of myfavorites in what you've written
(42:12):
and again I feel thatparticularly the first good part
of the book actually remainswith that kind of timeless
quality to it.
And I love one of your openingsfrom Wendell Berry's character,
(42:33):
burley Coulter.
He says the way we are, we aremembers of each other, all of us
, everything.
The difference ain't in who's amember and who's not, but in
who knows it and who don't.
And for me the word person onlymakes sense in the context of
(43:00):
member, like there is obviouslya solo existence.
I mean there are peoplealthough we're not social.
We're not solo beings, we'resocial beings as humans.
And so this whole notion ofmember for me is another concept
(43:22):
because another realm ofthinking about, and I use as a
reference point whenever I dosomething like a person-centered
plan with a group of people.
It's always about who are yourpeople, however small that body
(43:43):
of people is and however strongor fragile the bonds are between
people who are those people.
And I remember being at TorontoSummer Institute again one year
(44:05):
that Connie was with us and sheshared a story of a woman that
she had just met.
I think it might have been at aconference or something, I
can't even remember exactly.
And it gets back to the earlierthing.
We talked about how small stuffthings can be, and Connie
(44:26):
simply treated the person with agenerous honoring you know just
the kind of openness to her asa person and it almost
immediately became Conniebecoming her friend because of
(44:49):
this experience.
And so there's for me, there'sthis thing about not only is
personhood an important elementof who we are, but membership is
as important as the person, andit's actually where the mystery
(45:10):
plays out.
You know it's like the mysteryplays out between us.
You know it's that kind ofthing.
So I wonder if you could talk alittle bit about what brought
you to the place of that wholeframing of that.
The title of the book hasalways stayed with me members of
each other.
And just what were the, whatwas going on at the time that
(45:32):
led you to the idea that thiswould be something that would be
worth sharing with the world?
John O'Brien (45:41):
Well, we have to acknowledge St Paul as one of
the sources of the concept ofmembers of each other.
Burley is quoting the epistlesof the Ephesians pretty much in
rural Kentucky tobacco farmlanguage.
(46:14):
Right now we're.
It's an interesting time rightnow because we're we're
interested from the point ofview of public policy.
We've gotten interested inloneliness.
We've gotten interested inpeople who aren't members.
Right, the surgeon general ofthe United States a couple
(46:36):
months ago issued advisory aboutloneliness and how to overcome
it, and one of the concerns thathas been very lively in the
(47:01):
developmental disabilities worldhas been the question of
people's relationships and for awhile we framed it exclusively
in terms of loneliness and theregot to be some debates and
things that were puzzling toConnie and me.
(47:22):
Could a paid person be aperson's friend, for example?
That to be a still is sometimessomething people worry about.
That notion that I talked aboutbefore of starting from
(47:47):
experience makes.
That puts that question in adifferent light, because in fact
there are friendships betweenpeople and people who are paid
to support them, and whetherthere should be or shouldn't be
(48:09):
it doesn't matter, becausethat's not what a friendship is.
And of course that takesnothing away from the potential
for people being abusive friendsor for people being artificial
friends or for people topretending I'm your friend and
(48:33):
not having that be a realfriendship.
So we were looking in thatmembers of each other book.
In the various chapters of it,we were looking at this question
of membership from differentangles and in the context not
(48:56):
just of friendship as atreatment for loneliness or
friendship as a good, as part ofwhat us humans need in order to
(49:19):
thrive, and as something that'scontextual in terms of what's
how you're seen, how you'retreated, what you have access to
.
We can identify a lot of thingsthat make people with
disabilities hard to meet orhard to pursue a friendship with
(49:44):
right, and the first one is ifpeople believe it's impossible,
right, if people just and therewas a time that there was a
there were several controversialpublications that in the
(50:05):
editing process, were reallyhard to get through because
reviewers would say this iscompletely fair, a fairy tale.
This presumes that thisnon-disabled, this severely
impaired person and this, youknow, sort of upscale person
(50:27):
could be friends.
That can't be, that they can'treciprocate, they can't.
You know, there's so manythings getting away and part of
what we were trying to do isjust find some angles to look at
the thing so that we could geta little bit different handle on
it, and one of the mostpowerful things that we explore
(50:51):
in some of that book is thepower and the terror of asking
(51:17):
so we looked at some of the workthat had been done with
rescuers of Jews in the secondworld war and the sociologists
who had studied many of thepeople who were memorialized in
(51:43):
Yad Vashem the people that thatsaved people, the Gentiles that
saved people discovered whenthey listened to the stories
that the most common reason thatpeople did it was that somebody
that people took people in atthe risk of their own lives was
(52:03):
somebody asked, somebody justsaid would you help this person
or would you help me?
And not everybody said yes, butpeople said yes, and people
remained many times faithful tothat, to that response, and so
(52:27):
we began to think about how tobe sure that we recognize the
power that people withdisabilities have to recruit
people into their lives if wecan figure out how to get them
in contact.
So we both know people withsignificant impairments in
(52:53):
verbal communication and soforth who are powerful
recruiters of other people, whowho can bring people in if you
can just get all the stuff outof the way that keeps their
(53:14):
keeps them from making contactwith somebody.
And I think what's particularlybeautiful is that it isn't
necessarily will you help me,it's will you join me?
Can we do this together?
Can we get involved in this?
I don't know the surgicaldancing thing together, or sure
(53:37):
project to close theinstitutions together or
whatever it is.
And we've done such a poor jobat pushing back at this, these
disconnecting forces that we've,that many, many, many people
(54:01):
with disabilities have justgotten on with creating their
own memberships with each other.
Sure the hell with the rest ofus in a sense and I think that's
a good thing that has a realdownside, and the downside is it
(54:24):
takes away the reminders ofinterdependency, the reminders
of the power of undoing otherring.
That happens when peoplestruggle to create inclusive
settings right.
So to me, the only thing that'sproblematic about people coming
(54:50):
up with their own connectionswith other people that are like
them in the sense of sharing asimilar experience of disability
, is, I mean, to me that againis another testimony to the to
the power of relationship andthe need for it and the desire
(55:13):
to reach out for it, but it alsodisadvantages the rest of us.
No particular reason thatpeople with disability should be
doing the hard work, but, onthe other hand, the common good,
the journey to the belovedcommunity, requires the courage
(55:38):
for people to put themselves innew and different situations and
relationships.
Dave Hasbury (55:50):
I think of.
I mean, like there was justsomething about this phrase
members of each other and theway Burley Coulter references it
and you speak of St Paul's,it's almost like a pre-existing
condition.
The membership is actually.
That's the starting place, andthese invitations into things
(56:15):
are actually opportunities tomanifest it, to actually
experience what already existsand has this kind of mystery
quality to it because wewouldn't have thought about it.
(56:39):
But there is an experience whenyou can come together in
difference and uniqueness andall that kind of stuff and come
to a realization that we are,we're just members of each other
, like there's a visceral thingthat happens in those moments
(57:00):
that you can.
So I can only imagine that thepeople who said yes to the
invitation found themselves inthe reality of members of each
other kind of thing, and thatfuels that One of the things
that you said in that book.
(57:25):
It says unless citizens exercisecaution, the concept of social
support will obscure a necessaryfact about the foundations of
civil life.
We will forget that we aremembers of each other and that
the quality of our lives dependson remembering this in daily
(57:47):
action.
Do you want to say a little bitabout that and what you see in
terms of, because some of thisis we've set up these systems of
social care which are adifferent form of relationship.
There are people within thatwho form just genuine
(58:09):
relationships, but the systemhas got its own structures and
definitions about whatrelationships are all about.
So do you want to just say alittle bit about this kind of
social support.
John O'Brien (58:20):
Well, I think it's part of the what some people
are now calling the poly crisisthat we're in right now.
And to go back for a minute tobully Burley Coulter, his
(58:40):
creator, wendell Berry, haswritten a series now it's, I
think, upwards of 17 or 18 booksabout what he calls the Port
William membership, which is afictionalized version of this
(59:01):
part of Kentucky where peoplefarmed, grew tobacco, and part
of what those books are about isthe loss of context.
Right, that changes inagriculture, changes in scale
(59:26):
and method of agriculture,create situations that don't
bring people together, thatdon't create membership.
You could not farm in this partof the world before machinery
showed up without neighborshelping each other out, right?
(59:48):
If you didn't do that, you wereclearly an outsider.
Right?
You showed up for each other inall kinds of ways in the
context of daily life and whatWendell Berry has written about
(01:00:08):
in several books of quitebeautiful essays.
He's a kind of controversialguy, but I think he's got.
He writes beautifully and hasreally powerful points about
what we've lost, what we'vetaken away with industrialized
agriculture, with policies thatdrive people off the land, and
(01:00:41):
so what he's trying to figureout with some of his characters
in his books is.
Can you even think about thisprecondition that you're
speaking of when people are so,when things are so derationated,
(01:01:03):
when people are so atomized,when people's connections, when
the church is increasinglysmaller the church buildings
might be big but the occupancyis really small and is trending
(01:01:25):
down when we've got this oddcrisis of caring right culture
of rejection of caring?
Washington Post yesterday, daybefore yesterday, article about
we can't find volunteers now tohelp operate children's
(01:01:48):
nutrition programs, we can'tfind nurses, we can't find
teachers, we can't findteachers' aides, we can't find
people in the field of socialcare.
Doctors are quitting left,right and center.
People seem to be in flightalmost from being in situations
(01:02:15):
where they're called on to,where we're called on to care
for each other, and that seemsto me to be a really significant
dilemma.
And part of what we were tryingto do was to learn something
(01:02:37):
about by writing that book.
To learn something about, tolearn something about what are
people doing about this.
So some of the book is kind ofmore conceptual, or words, words
, words, words.
Some of it is.
Here's what some people aredoing.
Here's what some people inPennsylvania were doing back
(01:03:00):
when we wrote the book to bringpeople together, to gather
people on purpose, to see agathered circle of support as
the foundation for any kind ofsignificant improvement in
people's quality of life.
(01:03:20):
Here's what some people aredoing around citizen advocacy.
Here's what options incommunity living is doing about
having a community builder.
And here's what John McKnightand Kathy Larimer are up to in
South Chicago with trying tobuild off a neighborhood
(01:03:46):
organization base.
Dave Hasbury (01:03:49):
What are your thoughts about that whole idea
of what people have done?
And, again, the getting back tothe awesomeness of who a person
is and the member precondition.
(01:04:12):
So often these things get donebecause somebody is seen to be
outside of community culture,all this kind of stuff, and it
often can get translated into adoing for somebody who's less
fortunate kind of thing.
But it always strikes me thatthe we who are inside, not the
(01:04:41):
outsider we're actually missingsomething.
We're actually missing, and Iwonder if you could just talk a
little bit about that in termsof the orientation to what this
(01:05:02):
work is.
If it's really about kind ofrealizing the members of each
other precondition, how do wehave to think and act
differently in that, given thatwe have these systems?
Like, one of the things aboutthe systems of social care is
(01:05:25):
that they are entirely builtaround the notion of increasing
the perception of someone'sdeficit, of what they don't have
, in order for them to besupported.
And so how do we approach this?
In a way, that's about the getsmore at this mystery element,
(01:05:50):
gets more at this members ofeach other element that changes
the way we see and thereforechanges the way we act.
John O'Brien (01:06:02):
I wish I knew, but I do have a thought or two.
One of them is part of what wewere up to with the members of
each other book, and probablyalmost everything else I've ever
put in words on paper is tochange our perception of purpose
(01:06:26):
.
What if it weren't remediatingor caring for deficiency?
What if the problem we weretrying to solve was was moving
(01:06:48):
toward the beloved community?
What if our purpose was tobuild community?
And what if we recognized thatone of the fundamentals of
building community ishospitality, that hospitality is
(01:07:08):
a fundamental virtue that makesit possible for us to be human,
be persons.
What if we took it seriouslythat we should welcome strangers
?
As for the Greeks, you know theclassical Greeks they had a
(01:07:36):
story of the God showing up atsomebody's door and if the
people weren't hospitable, theywere ended.
They no longer were alive whenthey said no to Zeus when he was
(01:07:59):
knocking at the door and theguys of a beggar.
And obviously there's theJudeo-Christian injunctions to
welcome the stranger and therecognition that in the stranger
(01:08:19):
we may encounter, we mayentertain angels unaware.
So what if that were what wethought the problem was and we
needed to partner with peoplewho were at particular risk of
(01:08:46):
social exclusion because ofbeing seen as less than a person
or as other in some threateningor puzzling or dangerous ways,
and people who experienceimpairments that require some
accommodation in order toparticipate.
(01:09:08):
What if that was the problemand again that's where my
multiple failures come in istrying to figure out some way to
send that message that oursystems of social care could
(01:09:33):
respond to.
Dave Hasbury (01:09:39):
Well, I could go on on this and I am sure I will
call you again for moreconversations.
For example, in members of eachother, you actually go on to
bring up Ivan Ilych and JohnMcKnight and the whole systems
of social care and what happensto freely chosen relationship,
(01:10:05):
communal experiences, when thoseare interviewed.
It's kind of the equivalent ofWendell Berry's what happens
when we make all of our farmingmachine oriented and what
happens to all the relationships.
So I'd love to talk to you more.
You also, in that book, go onto talk about the linguistic
roots of friend, and I'd love tohave that conversation too,
(01:10:29):
just about friend, because it'slanguage that gets tossed around
all the time in a very thinveil kind of way, and yet it's a
deep concept of friendship thatactually has been a binding
force in our human experiment.
(01:10:50):
Well, john, thank you so muchfor spending this time and, like
I said, I can only imagine thatI'll be calling again for other
conversations along the way.
Thanks for listening.
Stay tuned for future episodesexploring more aspects of what
it takes to recreate a moreinclusive and dynamic experience
(01:11:15):
of us.
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