Hidden in Plain Sight – Spirituality, Disability, and Wholeness

[music playing]>>DEAN THOMAS STEGMAN, S.J.:
Good morning, everyone– lovely, lovely day. I was in charge of
everything except the wind, so you can blame somebody else. So welcome to
today’s presentation. I do want to reaffirm
what Meghan said. Pyne Lecture is really a
big thing for us at the STM. And we brought it
from Weston, and we’re very proud and grateful
to be able to have a wonderful presentation
like we do today. And we have a great
history of this. Today’s presentation, “Hidden
in Plain Sight: Spirituality, Disability, and Wholeness”–
it’s my pleasure to introduce our speaker. Now, you always got to be
careful, when you say things. And I remember speaking,
I said, wait a minute, I know your wife. Now, that can be a little
bit of a dicey thing. But as I’ll point out, his
wife is a distinguished New Testament scholar, from
whom I’ve learned much. Bill Gaventa is the founder
of the Summer Institute on Theology and Disability. He’s now the Director Emeritus. He’s the co-ordinator
of the Collaborative on Faith and Disability, linking
a number of University Centers of Excellence in developmental
disabilities, who are addressing spirituality
through initiatives in training, technical
assistance, research, and dissemination. He was formerly director of
community and congregational supports at the
Elizabeth M. Boggs Center on Developmental
Disabilities in New Jersey. Bill’s primary areas of
expertise and experience are spiritual and
faith-based supports with peoples with
disabilities, training for clergy, seminarians,
and community services staff, aging and
end-of-life grief issues, and intellectual and
developmental disabilities, cultural competence,
and community building. He has served as the
president of the American Association of Intellectual
and Developmental Disabilities 2016, 2017. As a writer and editor,
he’s edited newsletters and several books. He’s written articles
and chapters, and served as the editor
of the Journal of Religion, Disability, and
Health for 14 years, now serving as an
associate editor. His book, Spirituality
and Disability: Recovering Wholeness, was
published by Baylor University Press in the spring of 2018. And as Meghan just
mentioned, that book is available to purchase– I think, a very good price– at the back of this room. Bill and his wife,
Beverly Roberts Gaventa, moved in 2013 to
Waco, Texas, where she serves as Professor of
New Testament interpretation at Baylor University– then on to Austin in 2018,
where their son Matthew, daughter-in-law Sarah, and
grandson Charlie are living. His career has been dedicated
to supporting the ministerial– I’m sorry– the ministry
of pastoral care among persons with developmental
and intellectual disabilities and their families. We are so honored to
have him join us today at Boston College. Please join me in giving a very
warm welcome to Reverend Bill Gaventa. [applause]>>REVEREND BILL GAVENTA: Well,
it’s a delight to be here. I hope you folks in Boston
will understand my accent. And it used to be
for a long time, when I’d be up in the
north, people would say, you’re not from here. Then I’d go back to
somewhere down in the south, and people would say,
you’re not from here. And finally, what I realized–
and what’s a guy in the Army once told me– he says,
you’re borderline south. That’s your accent. So you’re kind of in between. And that’s where I’ve been–
in between, all my life, which is part of what
this lecture is about, in terms of trying to be
bridging between the worlds– the secular world of
services and supports with people with
disabilities and faith communities, religion,
theology, and ministry. In 1995, I had an unexpected
experiential exercise in disability that I
would not recommend. Although, it’s much more common
now than is commonly believed. I ended up in a unit in a
private psychiatric hospital due to the first onset of a
major clinical depression. I didn’t recognize this
unwanted visitor in my life. It took the form of major
anxiety attacks, the inability to sleep, and ruminating
so much in my head and soul that I had little energy left to
interact with anybody around me in any kind of typical way. Once there in the
hospital, the rumination changed to try to figure
out what in God’s name had just happened. What had I done? What kind of secrets
needed to be uncovered? What was the thing there that,
somehow, if I got a hold of, I could fix it, or somebody
could help me fix it? My favorite staff person was a
psychiatric aide in that unit. His name was Conrad,
and I did a fair amount of talking with him. During one conversation
to me, as I was talking about trying
to figure all this out, he said, Bill, you
know, what you’re looking for may be
hidden in plain sight– may be hidden in plain sight. And that became one of the
phrases around which my psyche began eventually
to reorganize, as I got not out of the depression– Parker Palmer says,
you don’t get out of the depression–
you get through it and come out the other side. But it became one
of those key things that I thought about a
lot, in relation to that. It became a phrase
that I used to describe the importance of
spirituality, including spiritual assessments,
histories, needs, gifts, and community participation, and
the need in the lives of people with intellectual and
developmental disabilities and their families. Let me explain. In the Western
world, in particular, the models and
theories that drive services and supports
with people– oh, I forgot about my slides. Sorry. How many of you were here
last year for Erik Carter? Erik Carter is a
PowerPoint master, per se, and so it’s really risky
for me to follow him. But this point was
also one of the things that grabbed my experience. And I don’t know if you
know Michael Leunig, and it says something, and this
relates to our Western world and Western cultures. Michael Leunig
had– in Australia, had his own experience
of depression. And he wrote, “God bless
this tiny little boat and he who travels in it. It floats and floats
for years and years, and sinks within a minute. And so the soul
on which we sail, unknown by years of
thinking, is deeply felt and understood the
minute that it’s sinking”– the minute that it’s sinking– the thinking, the
sinking, and the soul. So in our Western world,
understanding disability has come from the medical
models and social models of disability. Scientific perspectives and
research have definitely shaped the medical model. The social model
of disability has taken on increased importance,
as people have talked about disability from a
variety of other disciplines and perspectives, and especially
interdisciplinary world of disability studies
and advocacy by people with disabilities
themselves, who say, the medical model
does not work for us. But neither theoretical
model pays much attention to spirituality or
theology, for sure, or the religious dimensions
of disability and inclusive community supports. I spent a huge number of
years reading articles in the professional
journals around disability, looking for any
words that I could link in to the whole
concept of spirituality. And if you know
those journals, they are mostly graphs, and
charts, and research studies, and quantified and
so on and so on. And unless you get to
the abstract and maybe the discussion at
the end, you can begin to think about, what
are the implications of this for people’s everyday lives? I’m just not the research
scientist that, that Erik was. And one of the great
ironies is that, in the world of
health care services– acute health and
psychiatric services– spirituality has been a
huge topic of research and of interest, and about its
role in helping people to cope, and resilience, and the kinds
of meaning that it enables people to find in their lives. In terms of what we
do in the IDD world, we talk about the
huge importance of natural and generic supports. How many of you know
that term, if you’re coming from the DD world? We really hope for natural
and generic supports. But we don’t often include
spiritual communities as one of those natural and
generic community supports. If I came to an agency
and said, let me tell you about a community support
organization of which there are about 350,000 of them
around the country, including a whole lot in this
community, they would say, what? Those are congregations
and faith communities. And the cultural
model of disability– it’s a variation on the model– social model– is
much more conducive to explorations of the
ways in which disability is shaped by identity,
and culture, and context. But the result of not taking
spirituality seriously, not unlike the– in other areas of health
and human services, is a fracturing of
theory, and of research, and services into
two separate worlds– one, almost disability here,
and over here, religion and spirituality. Two separate worlds with two
different languages often, in the past– a splitting that does
no service to people with intellectual and
developmental disabilities and their families who are
trying to lead holistic lives as part of inclusive
and whole communities. Let me share some
examples of that. Ellen Cook, a Roman Catholic
parent, long time ago, wrote one of the
first books on faith, and churches, and people with
intellectual and developmental disabilities– had
this wonderful quote. It said, “Parenting a
disabled child is forces living one day at a time. It places a family in the
middle of a measured scientific/ educational/ medical model”– hear that measured medical
scientific educational model– “while confronting
it with all the chaos that real life has to offer.” We go into service systems,
where things are planned, and there are processes
and assessments and all these kinds of things. And a plan may look great on
paper, or an IEP, or whatever, but people’s lives often
don’t follow those plans. At least mine
doesn’t follow mine. And I don’t know about yours. But that really
struck me early on. Early on in my career at the
Boggs Center in New Jersey, I met a woman with
psychiatric disorders– borderline personalities– who was also
studying in seminary and wanted to be a chaplain. And she said, when I go to
the psychiatric world and work in the psychiatric
world, my interest in spirituality and faith
is seen as a symptom, rather than as an asset. And when I go to the
faith communities, my experience with
mental illness is seen as a symptom and
a disability as well. So there she was, kind of
stuck between those two worlds that didn’t allow her
to claim her own identity. Erik Carter and his colleagues,
in a more recent research about– with 500
families in Tennessee, found that families
said that spirituality is a dimension of life for them,
an important dimension of life was incredibly important
to them in their families and at their home. But that dimension
of life was never addressed by service
or educational agencies as a resource, and
neither was it really recognized as important by
their religious communities, given the kind of barriers
that many people faced in trying to become
more included and participating
members of congregations. So families live in that
world, but people for some– it’s just taken– the
religious community is just beginning to recognize,
in many ways, and embrace the spiritual needs
of people with intellectual and development abilities
and their families– and their gifts, not
just their needs. We still got a ways to do before
most service systems begin to see that as a huge asset
and a part of people’s lives. With little
imagination– there’s not a lot of
imagination about how to do that out there– much
less the capacity for those two systems to collaborate
with one another. So what we need
is– you could say would be a tikkun olam, to
use the Jewish expression. We need a repairing of
the breach, a coming together, a making whole again. Our Jewish friends would call
it or some people might call– I love this word “re-membering.” Think about re-hyphen-membering,
when we are helping people to become members again. We are reconnecting people into
the wider sense of the body. It’s not just an
intellectual remembering, but helping people
to be connected. When I was a chaplain
in Rochester years ago, and worked with
faith communities on helping people from our
center and in group homes to become members of
their congregations, I sometimes
facetiously wanted to– somebody said, well,
what do you do? I wanted to call myself
an orthopedic surgeon on the body of Christ. What I meant by that was
you hear all these stories in those days about
somebody’s toe or finger being chopped off in
an accident, putting it in ice, and they go to the hospital,
and an orthopedic surgeon connects that toe or that
finger back to the body. And that– how do we then
get those connections back to the wider body of the
community and practice? Well, before I talk
about doing the bridging, let’s look at some of the– one of the premises–
let me say this– and one of the premises of
the lecture and of the book is that– and I’ll come back to this,
but to tease your mind a bit– if you start off trying
to understand disability and what it really
is, my premise is that you end up in the
world of spirituality. And I’ll explain
that a little bit. And if you start off trying to
understand what spirituality is, you end up in the
world of disability, or you end up in the world of
limitation and vulnerability. And so the question is,
how come these folks– how come these two systems
are not more integrated? But why the separation? You know some of the reasons. You may have your own. First, disability came to
be defined and understood through medical and
scientific models, and all the factors that
separate religion and science came into play. John Swinton– I hope you’ve
read some of his work and seen some of his work, because
he’s one of the best pastoral theologians in this area– notes that, in the
world of science, what is good is what’s
observable, what’s true is what’s measurable, and what’s
beautiful is what’s replicable. Think about that. In the world of science–
whereas in the world of spirituality and
faith in human life, we have many other standards for
what’s good, and what’s true, and what’s beautiful– ways of looking at what those
dimensions of people’s lives. Our processes in the faith
world for understanding what’s good, and true, and
beautiful are much different. Perhaps the ultimate
expression of this rupture here is when people
go into science trying to prove the existence of God
by those objective or measurable kinds of things. Second, I might add
to the trio of what’s good, true, and beautiful
is a different perspective on power– is a different
perspective on power. And science, a goal
in research has been able to expand
knowledge, and therefore, enhance, and shape, and
help future treatments and help people. Arthur Frank, in his wonderful
book called The Wounded Storyteller, says that we have
three narratives for illness in our society, or
disease or something. One of them is that I’m
going along, I get cancer, I have depression or
whatever, fall into the pit, and the by the miracles
of modern medicine, I’m pulled out of that pit
and set back on my path on a– through being
healed, and on my way back as if nothing had happened. And we celebrate the
miracles of modern medicine and the latest cure for that. The other model is you’re going
along and fall into the pit, and you can’t get out, and
it blows your life to hell. It’s full of chaos,
and you start testing and start thinking
about, what maybe everything I believed in wasn’t true. And so you wonder where my
life is going to go from there. And that’s what sometimes
people often not in the world of disability
or psychiatric illness would think about disability. How could I live like that? But Arthur Frank
says the third one is that the metaphor of journey– that you go along, you
fall into something, you climbed back out,
and then you– or part way out– and then continue
on another journey, on what becomes for you
the new normal, or a way of restructuring, and
reclaiming, and reframing your life, and finding
hope, and meaning, and love, and purpose in other kinds of
ways than you did in the past. Many of you in this room are
here because you found that. You found how to do that
in the world of disability. You found how to do that. In the world of
spirituality and faith, there have also been efforts
to control and to fix what people believe in practice. And obviously, equating
cure with one’s faith– with one’s level of
faith is one of those. Scientific processes
can lead to caregiving processes that are, in fact,
sometimes called technologies of caring and helping, which
sends a shiver up my spine, as if this was a process,
and one, two, three, four, and you’ll get here– and if you just do
that process right. Which ends up separating people
from the real heart of care, and we end up with a system
that doesn’t know how to enhance caregiving capacity. Or as a chaplain and quality
care person once said to me, we end up with a
system that knows how– doesn’t know how to enhance
commitment and relationship, and therefore, relies
upon compliance with processes and regulations. Third, we’ve all seen and heard
the effects of bad religion and bad science on people. That’s probably the part of the
problem why spirituality is not embraced by many people
in the disability world– because of the oral tradition
of all the stories that have really wounded people
with disabilities and their families– people passing on
experiences and being asked to leave this church,
or asked to leave that church, or the pastor never
coming to see me. I’ve got a ton of those stories. I wish we had time for them. You’ve probably got your own. But those are still out
there, even though that’s begun to change in many ways. And churches are,
for the most part, really beginning to move towards
more hospitality– not always, but it’s beginning to change. Both are areas in bad
science and bad religion where families can end up
feeling victimized and judged. Historically, that happens
in the world of faith, like we said, when
the lack of a cure is being then blamed on
that person’s lack of faith, in terms of being
able to do that. And Harold Wilke
and others long ago said Jesus separated
that link in John 9, and that that was not a
question of that person’s sin or the family’s sin. It just separated that
from any concept of sin. It happens in human
services, when one of the latest
techniques will come along in the arena of human
services and people say, oh, that’s the answer– finally. Go back to the 1990s, when the
whole methodology of patterning came along, and people
worked with kids with multiple disabilities
and patterning. And you had 60 or
70 volunteers who had to be with a
family and the kid, with the premise
that, if you moved all the arms, and the muscles,
and the legs, and everything, that those patterns would be
rebuilt in somebody’s brain. And if it didn’t work,
the patterning folks said, well, you
didn’t do it right– which is the same
thing as saying, you didn’t have
enough faith, or you didn’t do it right in a
different kind of way. And then you also
then get people in the service system
saying, we don’t know how to deal
with spirituality, or we’re afraid of it. And if they say that,
that is, ironically, kind of an acknowledgment
of its power. And they may have seen
the power to hurt people, but they may have not
had much experience with sensing its power to be
able to help people as well. Bad science happened
with eugenics, which, of course, came out of
a world that was incredibly scared of immigrants
and all those others who threatened a
pure ethnic identity. Both science and
spirituality are arenas that can hurt
people by over-promising the success of particular
actions or treatments. And both the arenas of
science and spirituality have their own dogmas
and their own zealots. In the midst of battles,
and theory, and dogma, the real stories of individuals
and families often get missed, and they’re not heard,
or honored, and often completely ignored or lost. Fourth, one result has
been a great reluctance by anyone in humane
sciences to do anything that looks like proselytizing,
with good historical reasons for that. But it also makes people
working in the arena of intellectual and
developmental disabilities leery of doing anything
that someone then might accuse them of violating
church-state boundaries. We can’t do that, because
we’re funded by the state or by taxes, which is not true. You can pay attention
to spirituality. You just can’t proselytize. And while at the same
time, they’re saying, we are working towards
holistic services and supports to families and individuals. There’s been little opportunity
for training and spirituality for professionals in
multiple kinds of disciplines in the arena of intellectual
and developmental disabilities. Spirituality has not
often been included in any part of professional
formation and development. In fact, the prevalent model
still of being professional means you’ve got to separate
your professional practice from your personal
beliefs and values. Most families and
people that I know are not looking–
they don’t want people to be proselytizing,
but they sure want to know what the value
base is of the professionals who are working with them. What people want is a
value-clear professionals. They don’t want
value-free professionals. They want to
professionals are people who are committed to them
in multiple kinds of ways. And those are the people we
say, just like with teachers, are the good doctors, or
the good social workers, or the good
psychologists, or clergy– people who they know
have got a heart and are committed to them. Parker Palmer got at that
with his wonderful book on the courage to teach. And fifth, in the arena of
intellectual developmental disabilities, one
of the barriers to honoring spiritual needs,
interests, and supports is the equation with
faith with reason– the equation of
faith with reason. Religion too often
gets seen as something you have to be able to
understand intellectually. Therefore, how could people with
intellectual and developmental disabilities understand anything
related as part of that, so what do they know about
spirituality and faith? A similar question often gets
asked about their capacity to understand death. Oh, we shouldn’t tell
them about the death of their sister, or
brother, or mother, or let them participate
in the service, because how could
they understand? It might be upsetting to them. I would like people to ask,
how many people at that service understand what death
is, and how many people are there who are upset? That’s exactly what
grief is about. It’s not an
intellectual activity. If you go trying to say, I
understand death or understand why somebody died in
a tragic car accident, you’re going to have a hard
time coming up with an answer right away or for you in that. It’s an experiential exercise,
and which people then– as some of the writing
I and others have done around grief and loss– all of us quote, “act
out” our grief and loss through socially acceptable
processes of going to wakes, writing cards,
going to services, having services, going
to the cemetery– all of those kinds of
things by which we act out, in appropriate ways,
our loss and our attempt to comfort other people. And for us not to give
people with intellectual and developmental disabilities
or people on the spectrum the opportunity to do that, it’s
not an intellectual exercise. It’s an emotional exercise,
an experiential exercise, and an experiential
understanding. Religious leaders in
the past sometimes used this as an intellectual
barrier as well, with the classic question that
some Christian communities have asked about the
intellectual capacity to understand the
sacrament of communion– or in Jewish tradition,
being able to understand the
teachings of the Torah. How can they really understand
the Torah lesson for today, and can they really
say something about that in a
bar or bat mitzvah. Let me tell you one of my
favorite stories about this– comes out of the UK. A young guy with autism
was in the process of getting ready– being
trained for his first communion, and he just really
wanted to do that. I want to be part
of that communion. I want to receive can. Everybody else does. And think about it. It’s tactile. It’s a thing where you move. It’s a symbol. You’re doing something. It’s not an intellectual
exercise at all. It’s about being part of
what everybody else is doing. So before he went
through the ceremony, to allow that, the bishop came
to visit the church one day, and as people were
invited up for– to receive communion– as
you know what happens in many Catholic Churches– if you’re
not yet confirmed or whatever, or if you’re not– if you’re Baptist like me,
you can go through the line, but you then are asked to
cross your hands like this and get a blessing,
and then return. This young guy gets up
to the bishop like this, and then he looks at
the bishop and says, you know, you’re really greedy. You’ve got all those Jesuses in
you, and you won’t give me one. In a month or so
later, when he then was allowed and did
what he did to need to do to receive
communion, of course, that was just a huge
day of celebration. And all of you in
this room probably got your communion
stories coming out of this arena, about
what it means– like the young woman
in the reformed church, who came up with her
mother to the pastor to be part of the church. And the pastor did the
usual questions and– not quite the usual questions,
but the pastor says, so do you love Jesus? And she said, yes. And he says, do you
know Jesus loves you? She said yes. And do you know you want
to be part of this church? And he said yes, and then
she turns to her mom– she’s a young woman with
Down syndrome– and says, do I have to get a
physical for this too? That that’s where people are
used to asking questions– are people taking
people really seriously. So finally, as I’ve worked
with people with intellectual and development disabilities
and their families, I’ve seen and heard them express
great appreciation for the new ways that understanding
disability as causes and ways of supporting and
treating other people, like positive behavior
supports, self-determination, new technologies,
person-centered and family-centered planning– a real appreciation,
finally, for some things that are helping taking
people more seriously, and doing what essential
lifestyle planning does, which is asking people
what’s important to them, not just what’s
important for them. What’s important to
you, but what’s not just what’s important for you. Those origins of those new
kinds of strategies for helping are primarily in the worlds
of human sciences and secular policy development, but many
of those ways of understanding service and support
still have a hard time getting at the depth of
love, and hope, and despair, and meaning, and core values,
and motivation, and yearning for relationship and
community, or sense of purpose or
commitment that I hear, when you get to know and sit
with people with disabilities and their families–
that they hear what they yearn for at the level
of their soul, so to speak. The concepts and definitions
of disability and spirituality have both evolved over time,
and they’re– think about it– they’re both constructs. They’re both ways for trying
to understand something. We have a constructive
disability that tries to say, this is what– a way to understand
limitation or vulnerability. And so is spirituality. It’s not something I
can grab a hold of. It’s a construct, a way
of understanding parts of our human experience. Both are hard to do that in
any real objective sense. The search has been for
definitions and models that function effectively to
understand and address human needs and experiences. And I’ll go back and say, each
one is incomplete, I think, without the other. That unity hidden in plain
sight has profound implications for more holistic supports. So let’s get into that a bit. That’s further beyond. Look at your PowerPoint–
or your slides. I’m not going to try
to keep on doing this. I’ll try to catch up. So after the
Enlightenment, how did we begin to understand disability? Disability became
perceived as a defect and as a medical problem. There were huge advances in
health, scientific tangents and fads, such as eugenics,
that led to tragic consequences and isolated immoral
treatment based in institutions that
became warehouses, and sometimes killing fields. The first job I had–
real job I had– was as a Protestant
chaplain in one of the old hellhole
institutions that had 1,500 people in the same space. There had once
been 4,000 people. When the combined
advocacy of families, wounded veterans, people
with disabilities, and professionals
and human rights advocates led to increased
community-based supports and quote, “normalization,”
the definition of disability and medical
deficit began to change. Yeah, there it is. OK. Now if I can go back. OK. We all have our needs. In 1980, the World– I remember this, when
I was a chaplain, and the World
Health Organization came out with this new model of
disability in which disability or disorder could be
seen as happening here, that led to some kind
of impairment, that led to then a lack of
ability to do something that normal typical people can. And what we thought about it–
using the words of those days– became the handicap, the
social determinants of– the implications of having
those kinds of impairments. Now, people with
disabilities and advocates, especially in the UK,
said, wait a minute. That doesn’t work. It’s not a one, two, three,
four, linear progression, just like a grieving process
is not a one, two, three, four, linear progression. In about 2000, the World
Health Organization came up with this model of
understanding disability. And take a look at this, and
take a look at it carefully. So one’s disorder, or
disease, or one’s health– put yourself in this
position, not just a person with a disability. We all have body
structures and functions. We all may have some
kind of health condition that’s visible or not visible. That health condition
may impact our activity and our daily lives. And then that limitation in
activity and the body function health may impact
then our participation in community life, and
is called typical life. And that activity and
doing all that is also impacted by
environmental factors, which are, for people with
disabilities, barriers, stereotypes, policies–
all those kinds of barriers that get in people’s way. But it also is environment in
terms of culture, and beliefs, and attitudes, and stigma. And personal factors are what
do I think about my health condition? What do I think
about my disability? How do I think about that, and
how do I work with all this so that I move towards then
more holistic participation in community life? And in the World Health
Organization thing, the real disability
these days is what limits your participation– what limits your participation,
whatever it is, in community, or we could say
congregational life. Legal rights, and
scientific theory, and research have also gotten
at the importance of meaning. Through the disability
rights, human rights come along with these new
definitions that have been [inaudible] but we
also don’t recognize that human rights
have foundations and theological
concepts, like the value of each person, the Imago Dei
justice, and the Golden Rule. There are two or three
other models of disability. Two of the three leading
models of disability in the world, both
of them include spirituality– or models
of the quality of life include spirituality–
unfortunately, not the one that’s most use
here in the United States, which is kind of ironic. So an amazing amount of progress
has been made toward inclusion, since I started in the 1970s,
through channels of disability rights and justice. But we’ve not paid
as much attention to relationships and belonging. Hear that carefully. We’ve not paid as much attention
to relationships and belonging. In the world of
deinstitutionalization and community services, we
have said, what’s important? What’s the important
question is real estate– where? Where do people live? Do they live in the community? What kind of setting? Does it foster inclusion? It’s the “where” question. It’s the “where” question. It’s the “where” question. And the real
question– and we’ll get to this in a minute–
is the “who” question. Who are people connected to? Where are the relationships? Because you can
live in a community and be just as
isolated as you might have been in an institution. Or you can maybe have never
gotten into a community, and then– and still be isolated
in a community. Simply put, rights helps
people get through doors, into community, and maybe into
congregations, and many parts of the community. But rights don’t get
you relationships and a sense of belonging. Rights don’t get you
relationships and friendships. You get relationships
with other advocates, and they’re– profound
relationships have been built between advocates and
others working on inclusion. But rights don’t
lead necessarily to friendships and a
real sense of belonging. You might also say that
concepts and practices like person-centered planning,
and self-determination, and cultural competence
all lead logically to taking seriously the
spirituality of the people we serve. But in other words, the search
to understand disability ends up in the world of what people
think about disability– what their attitudes are,
what their values are– both in the environment,
and the individual, and in the community. And that’s where
I would say then disability ends up trying to
understand– disability ends up into the spirituality, and
what we think and belief from various ways about what
it means to be disabled. Now, take going in the
different direction– spirituality. Understanding and
definitions of spirituality have been around for centuries,
closely tied to religious life and practices– with a huge
tradition of that, as you know, in the Roman Catholic community. In the past decades there
have been increasing interest in research in health
and human services and the importance
of spirituality, as we’ve said before. And there’s a woman who’s
been a champion of this in the medical world and secular
world of human sciences, Dr. Christina Puchalski at the
George Washington Institute on Spirituality and Health. If you don’t know it,
it’s got a great website. But she defines spirituality
as “the dimension of a person that seeks to find meaning
in his or her life. It is also the quality
that supports connection to and relationship
with the sacred, as well as with each other.” A variety of strategies
have come out for doing spiritual assessments
and supports by health care professionals,
and chaplains, and other religious professionals. Most of them come from the arena
of acute care health services, but both traditional
writings on spirituality and this modern research
most often come out of people become aware of those
intense spiritual issues– out of times of
crisis, or out of times of feelings or situations
of extreme vulnerability, of illness, or
end-of-life issues, or out of the kinds of intense
isolation and loneliness of people. At times where those liminal
places between the Earth and whatever is beyond the Earth
and the Heavens, in which we can no longer avoid the
questions of human limitation. My own definition has
evolved in conversation with those theories, but
primarily by my experiences working with clergy, as a clergy
person in the world of people with intellectual and
developmental disabilities, on both the religious
and the secular sides. My first full-time job in
this area, like I told you– at this large, old institution
called Newark State School in upstate New York, which was
once called the Newark State School for Feeble-Minded Young
Women of Childbearing Age, coming out of the
’20s, when they tried to get any woman who was seen to
be promiscuous off the streets. So like the Buck versus
Bell decision came. Three generations is enough– all that kind of stuff. They would be put into
institutional settings. As I worked there,
it became clear to me very quickly that the
greatest spiritual needs in that place whereas
the need of celebration and belonging. Where does somebody
celebrate somebody’s lives, rather than be sent
away or seen as deficit? And where do people have a sense
of belonging other than to say, I belong here at Newark,
or I belong to Newark? There was just no
good answer for that there in that facility. One of my pastoral
care strategies, which I learned from
another chaplain early on, was I started trying to meet the
Protestants in that institution by taking around birthday
cards for people. And it felt like a
kind of act of protest against the institution,
because I’d sometimes go into wards where people
were severely disabled and say, where so-and-so? And they’d say, over there. And they’d say, why? And I said, it’s
their birthday today. And this amazement would come
over the face of the staff. Nobody had recognized that. And if it was somebody who
was in a couch or a bed, I tried– always tried to find
birthday cards that had color. And in those first years
when birthday cards came out that played “Happy Birthday,”
boy, I was really popular. You know, but I’d tape them
to a bed or to a wall, and– just as ways of
saying, on this day, this person was born
all a long time ago. And how do we
celebrate that person? One of my most
profound experiences came out of that– was one
day going to a guy and saying, where’s Charlie? And Charlie was sitting in a
wheelchair over by the window. And I went over to
the window and knelt– kind of squatted down– I could do it easier
in those days– and said, Charlie– and Charlie
was one of these older people who just had 1,000 wrinkles,
and they all kind of went like this. This was a unit where nobody
talked, as far as I knew. And I handed out– reached out
the card and said, Charlie, I’m Bill. I’m from church. Happy birthday. Today is your birthday. And all of a sudden, he started
to reach out, and he smiles. These frowns started to
gradually go up like this. Then he pulled his
hand back and he said, but I don’t have anything
to pay you for it. If that’s not a symbolic
story about living in a world where we think we have
to earn grace and have to earn some kind
of love, or that we have to do that to earn. I can think of most of us– most of you have friends
that, if they didn’t give you a birthday card, they’d be in
real trouble in your family– or if we forgot
somebody’s birthday. But that was one of
those profound moments that each of you in this
room have had of other kinds, where you see the core
of what grace, or value, or individuality, or connection
means in people’s lives. And as I worked toward moving to
build bridges of inclusion with faith communities, I began
to see that the spiritual questions– and
you all know this– it’s preaching to the choir– the spiritual questions about
what it means to be human are at the heart of the values
that drive public services and intellectual– around
intellectual and developmental disabilities in
the United States, codified in the Developmental
Disabilities Act. Oh, it got there by magic. Sorry– so the DD Act
and almost every agency has these values in
their mission statement. We’re here to help the
independence, productivity, inclusion, and
self-determination of people with intellectual and
developmental disabilities. And they will also
say, we try to serve with cultural competence. All of those are the big five. They’re in the DD Act. And what are those? Those are American
and Western answers to the questions of identity. Who am I? In America, what are
we supposed to be? Independent. And of course, it was
progress to say and believe that people who are seen
as dependent and not able to be independent at all
could become more independent. That was a huge step
in the right direction. But if that’s the be all and
end all of things, sometimes– and I think we’re trying to
help people be just as lonely and isolated as everybody
else is in the world, because we don’t know
how to deal with– we don’t know how to
deal with dependence, so we assert our independence. And we really need to work
out our interdependence, which is the lesson that we– is all over the map in
this country at this time, in this day and age. So independence–
what’s our core values, meaning what
what’s an identity? What’s sacred to you? What are the things you
most believe and value? Productivity– we say,
can we get people jobs? Employment becomes
the answer to that. But the productivity is the
American answer to the question of, why? Why is your life? What’s your purpose
of your life? What am I supposed to do? What kind of difference
do I want to make? Where do I make a
contribution in my life? Where can I do that? And we answer that
with employment, because by golly, we live
in a capitalist system, and that’s what
you’re supposed to do is be productive,
and be useful, and be a useful part of that system. But we haven’t really asked
people with intellectual and developmental disabilities,
yet it’s changing– thank God– it’s finally changing around
person-centered planning and employment– what do you really want to do? What do you like to do? And can we find a
way for you to do that in a way
that’s going to get you a job, or a way that
you can do something in the community, where
you’re contributing and doing something for people– to use the words of call and
vocation in a religious way? And not that it’s just your and
mine vocation to serve them. There’s a sense, what is
their vocation, their sense about how– what they want to do
with their lives in the world? And their vocation, I
think, is beyond just helping us so-called typical
people teach us something about what it means to be alive. They’ve got a bigger
vocation than that. A person with a disability
once said to me, my job is not to help
you get over your crap. I’ve got other
ideas about a job. You may need to do that, but I
prefer you not do it around me. Now, some people with
disabilities, of course, don’t have any control
about what we think or what we do around that, but
we never give them a chance to say, what do you
really want to do, and how can we help you do that? And the inclusion question– as
my wife, the biblical scholar, would say, the
question in the Bible is not who are you,
but whose are you? Whose are you? Who do you belong to? Who are you connected to? Whose are you? Connections and friendships
with self, with the sacred, with time, with place– we are pretty much
people of the present, but other cultures are
much more connected to a sense of
ancestry or to future. If I ask you the
question, what’s the sacred place for you in
your life, or the sacred places, you could probably name some
things that– where you go. Where are those places for you? Who are the people? And we’ll come back
to that in a minute. And self-determination is really
what kind of power or ability. Who’s going to
listen to my voice? What kind of agency do I
have as a person to help, who will honor my decisions
and who will honor my preferences in the world? And we’re beginning
in the system to learn a lot about that–
about just because you can’t legally make a
decision doesn’t mean we can’t honor
preferences, and wishes, and things that
people like to do. And then cultural
competence– will my personal uniqueness and
cultural heritage be respected? I’m going to go back to that
self-determination for a bit– no, the productivity
of the “why” question. Most people who see
somebody with a disability or intellectual
disability, what’s the first question they ask? What’s wrong, or
why did it happen? It’s the “why” question. People are trying
to figure out why. How did this happen? What happened? Any time some crisis
happens in our family, that’s part of the process. Somebody dies, has an accident,
we start saying why right away. And it either goes in to
it’s somebody else’s fault or it’s my fault. It’s
anger or guilt often, in relation to that–
but that why question. And I think people
get so caught up trying to figure out why
people with disabilities are in the world in their
lives that they forget about that their question is
a different kind of why. Most people with
disabilities are not sitting around trying to figure
out why I have a disability. They, in fact, are figuring
out how to have a better life, and how to get more connected,
and how to do things and so on. And so that’s where the
so-called typical “why” gets in the way of people
and our helping people ask a “why” for them. So it should come
as no surprise that the core spiritual questions
about personhood, community, and purpose, and the
divine are raised in the context of disability. Why? Although, more typical and
traditional explorations of spirituality have rarely
focused on disability, they have experience. They are experienced and
expressed most clearly in human situations of
vulnerability and limitation, or times of great celebration,
or dealing with death, and suffering, and disease,
dealing with the unusual. The same questions of identity,
purpose, and connections, and control, and respect
for cultural identity are raised by those
experiences of being on the margins of life– those liminal moments,
times and places where the present
and the eternal seemed to collapse
to that moment and crystallize questions
and answers for meaning, and what do we make
of this in our lives. Or said another way, leading– seeking to understand
spirituality leads to a place where many people with
disabilities and their families would say, welcome to our world. Welcome to our world, trying
to figure all of this out. So there are two ways
to think about looking at this, a model of this. We often see Venn
diagrams something like this, where you’ve got
families, faith communities, service systems all impacting
people with disabilities– individuals with disabilities. And then maybe, right
in the middle there, people from all of
those dimensions pay attention to spiritual
needs, and gifts, and supports. It’s still not honored by
lots of faith communities and services. I’d propose a little bit
different kind of a model that looks a little bit like this– that spirituality is
really at the heart of who we are as people, whether
you’re a client, consumer, family, person with a
disability, professor, social worker, whoever– that we all have at
the core of however we define our spirituality for us. And that’s part of who
we are and our families, and that we are parts
of wider systems– faith communities, services,
supports, government systems, civic systems. And then we’re all part of that
wider community as a whole– that somewhere at the
heart of all of that is something about what
it means to be individual, what it means to be human,
connected to one another, to belong– all those kinds of things. And how can we get to the
point where then spirituality are seen as some of
the questions that need to drive what we
try to do and how we try to help from multiple
kinds of sides, and from multiple
kinds of perspectives? So start off looking
at trying to define spirituality–
disability, you end up looking at all the beliefs,
and practices, and images, and values, and so on
that we have about what it means to be human. And you start off trying
to define spirituality, and you end up looking at– end up in the world of where
vulnerability and limitations– it’s no surprise that most–
many of the Catholic Saints, who are known for being
spiritual masters– either women or
men– were people who dealt with some
kind of chronic illness or some kind of
limitation in other ways. If you’re a veteran, you
know the old expression that says there’s no
atheist in foxholes. And I think many
families and people with disabilities kind
of find themselves in perpetual foxholes– or at least one could
say perpetual potholes– on the journey, as we try
to go through a more– try to find a more
meaningful part of what it means to be
part of community, and to be recognized
as valued and worthy. So I’m going to stop right
here with enough theory for a minute. And I could tell
stories some more, but what we’re going to do in
just a moment is take a break, and then we’re going to come
back and say, all right– and answer the question that
may be in some of your heads. Oh, Bill, this is really
nice and I like that model, but what do we do with it? How do we make this work? So we’re going to do
that, but for right now, any questions before we break? Susan. You’ve got a mic coming.>>PARTICIPANT: Thank you. Welcome, Bill. Here’s my question. You talked earlier about the
professional and the personal, and bringing– I heard you say about
bringing our full selves into our relationships. But as people who
serve, perhaps, as chaplains, or
ministers, or professors, or whatever, how do we do that? In my ministry with
folks with disabilities, how do I bring my whole
self into that relationship without crossing any–>>REV. GAVENTA: Boundary.>>PARTICIPANT:
–boundaries, right. Thank you.>>REV. GAVENTA: That’s an
area that I’m fascinated with lately– and let me tell you
how I got there. It came out of dealing
with issues of grief, and loss, and end-of-life
issues for people with intellectual and
developmental disabilities. Some of the stuff that’s
in the book that is– my book is partly
classic Stan Hauerwas. You’re creative by stealing
stuff from other people and forgetting where you got it. There’s a model on
aging, about the six– five or six tasks of aging. And one of the tasks of aging– one of them is an interfaith
model that came out of Chicago. And it’s in the chapter on
end-of-life issues there, but one of the values of
aging and task of aging is getting reconnected to
community, because you’ve been working so much. How do you get
reconnected to community? That was at the Nancy Lurie
Marks Foundation yesterday. And one of the head staff used
to work in lawyer, accounting, financial world, and he said,
I got a second vocation now. And that’s my new life– a different kind of life
and a way of contributing to the community. Another one of the
challenges is the challenge of keeping one’s faith
in times of crisis. Another one is being
able to say goodbye to people, as you get older. But one of the challenges
that fascinated me was the challenge of blessing–
the task of blessing. Where do we, as people,
allow older people to give their blessing to
the younger generations, or to receive a blessing, as
an elder, for who they are and what they have
given to other people? In the Bible, that
was a part of– natural part of human life. Think about the Jacob story
and the power of that blessing, in many ways. So as I began to ask
questions about– so when people with intellectual
development disabilities, who’ve been served by
an agency for years– and hopefully, some of
the staff has been with– in their lives for a long time– and they move towards the end
of their life, who in their life is going to say to them– if they don’t have multiple
other friends, and many don’t, who’s going to say to
them, you have really given– taught me a lot, by virtue
of being your pastor, your chaplain,
your social worker? We put people with
disabilities in the position of saying thank you to us,
the helpers, all the time. Especially towards
the end of life, where do we turn around
and say, thank you for what you’ve
taught us over time? That’s only
professionally honest, because most of us who’ve
worked in this field derive our own sense
of vocation and meaning out of what we’ve found there. There’s a wonderful article by
Samuel Wells in the Christian Century this week,
that essentially says, what use are boundaries, when
a friend of yours is dying? Now, the question
about friendship raises those questions
of boundaries in the world of disabilities. If you’ve worked with
people and they’ve been– you’ve been part of their
lives for a long time, I’m not going to call
that person a client, or a consumer, or whatever. And there are boundaries. There are surely
professional boundaries. I should never abuse somebody,
in terms of intimacy, or some kind of
other– there are ways that I can observe
those boundaries. But if I, as a
professional, take the power and say, no, I can’t
be your friend, then it’s kind of ironic, in
an age of self-determination and speaking for
yourself, that then we’ve taken the power to define
what that relationship means to the other person. So there are clearly people who
I would say are my friends now, even though they
would also see me as their pastor for a long time. Now, it doesn’t mean you
take away the boundaries. Trace Haythorn dealt with
this at an AAIDD Conference on a panel in Atlanta
a few years ago. The question came up, and
he said, what a professional should be able to do? A professional is
somebody who knows how to navigate boundaries– not just to hold them
like their walls, but to be able to navigate. And you know when
there are times that– just throw out your professional
stuff and sit with somebody. They don’t need you fixing
or trying to do your stuff. They need you to fix and listen. So it’s navigating that and
getting some skills in that. There’s a new kind of ethics
called for professionals. If people are living
in our communities now, they may– the people we support
may be going to our church, going to our grocery
store, maybe living next to us on the street. Then wait a minute– that’s a
different kind of relationship than just being the patient
who comes to the office, or somebody going for
therapy somewhere. What is this
community all about? In the back.>>PARTICIPANT: Hi, Bill. My name is Dennis Heathey. We’ve communicated a few times.>>REV. GAVENTA: Yeah.>>PARTICIPANT: How are you?>>REV. GAVENTA: Good.>>PARTICIPANT: I’ve got a
question about several things. One is when you look around this
room, most folks are 50-plus. And we’re living in
a post-Christian era, and we’re looking at things– how do you justify
chaplaincy, in terms of return on investment? What does a chaplain
provide, beyond relationship, that a social worker, or
a nurse, or someone else can provide? How do you actually put, in a
quantifiable way medicalizing what chaplains provide in a
manner that makes it actually sellable to– actually
sellable’s not the right word– make it something that’s of
value to the medical insurance industry or the
hospital industry?>>REV. GAVENTA: Behind
that is the question of, how do you evaluate
spirituality? How do you see that as important
and put some money behind it, so to speak? And there certainly are
people who work in acute care chaplaincy who’ve– there’s a lot of writing
on that, because you can use Medicare funds
and other kinds of funds to help pay for
pastoral services. And we’ve, in our
correspondence– I know of three, or
four, five, six– growing numbers now a
secular-based agencies who’ve decided to put
together a role of what they would call a coordinator
of spiritual supports. And what those folks do
is really get to use– as a friend of mine said,
person-centered planning that doesn’t
include spirituality is not good
person-centered planning. So if you really take–
pay attention to what people’s culture is, what their
dreams, and desires, or hopes, or connections might have been,
and then that person not only helps the staff and the
agency to listen to that part of somebody’s life, but then
helps to build connections where they– with other people
who share that, then it becomes ways of
community connection, of belonging in the community. It comes ways of acting
out cultural competence as an agency. It becomes ways of living
out self-determination. Whatever I think
about spirituality, if it’s your choice that you
want to go to church, well, by golly, I’m supposed
to help you do that, if that’s self-determination. And I know those
agencies are– begun to look at quantifying
that, and they will say. But then it gets hard,
because a lot of that’s around quality of life
kinds of measurements, and quality of life measurements
that we have in this country look for objective
stuff, which are really hard to find in areas
such as identity, and a sense of belonging, and a
sense of purpose in one’s life. You can say whether
somebody got a job, but you may not be able
to talk about whether they like that job or whether
it’s their sense of vocation. Now, the HSRI here in Boston and
their national core indicators research that they’ve
done with all the states, there is a higher correlation,
just between the data, on people who go to
a faith community at least once a
month and employment. I’m not sure what that means. It may mean that those are
people who we would call people with less significant
disabilities, and they have an easier time
getting a job or whatever. But we’ll come back to
looking at that whole issue of employment afterwards. I think we need to look
out of the acute care and see how people have
tried to quantify it. We had a CPE program
in New Jersey, and we put clinical
pastoral education students at a Kessler Rehab
from September to May. Every time we put
a student there, their patient satisfaction
scales went up on leaving. When the students left,
they went back down. And we kept on using that to
say, you should get a chaplain. You’re big enough. You say you’re a
model rehab center. The other model
rehab centers have got pastoral care departments. Get a chaplain. But they couldn’t figure a
way to fund it, supposedly. But patient satisfaction
is one of the ways that people do that. But it’s not easy,
in terms of that, and in community services. One of the people who’s here– you might want to talk to Frank. Talk to Dennis during the break. Frank works for an
ARC where that’s a large part of his role,
an ARC in New York State. And that’s one of the agencies
where they’ve begun to do that, and I’ve shared with
you some others. Heritage Christian
Homes in Rochester area really does that
well, and they’ve got a department of
three or four people. Because what they know is
that, by getting connected– people connected to
faith communities, if that’s what they want to
do, it opens all kinds of other doors to friendships, to
ways to serve, to fun stuff, to recreation things, to other– so it’s like a study done
a long time ago in Ohio about older people coming
out of institutions back into the community, and they
called congregations ports of entry into the community. That’s what it is
for a lot of us. If we go to a new town, and
if you’re a person of faith, you start church shopping
or synagogue shopping– not just because you’re–
that’s part of who you are, but you know there’s
possibilities of finding community there. But it’s a great question,
and I look forward to talking to you some more. Dennis has worked with the
Department of Health here, public health here, and I
know a lot of people who– your ears should
have been ringing the last couple of days.>>PARTICIPANT: How much
is the book on the table?>>REV. GAVENTA: How much is
that child in the window? You’ll have to ask them. I think they got
a good discount, and cheaper than you
can get it online. I’m not selling it. The BC College Bookstore is.>>PARTICIPANT: OK, thank you.>>REV. GAVENTA: But it’s
going to be cheaper here than if you order it online. It is available electronically
a bit cheaper through Amazon, but I don’t like
to order anything through Amazon these days. They’re the devil. Any other questions? One of the questions raised one
of my stories that many of you have heard, and
I’ll just tell it. I went to speak with the two
group of families with Down syndrome in South Carolina– the
Down Syndrome Association once. And I did my talk,
and afterwards, I said– we had time. I said, OK, tell me
your church stories. This is South Carolina. There are not many
synagogues, or mosques. And all the families
started getting up, and every one of them
had some kind of story about how they’re related
with their faith communities. One mom got up and said– this
is one of my favorite stories. Two favorite stories out of
this– one good and one hard. One mom got up and
said, my minister went with us to our IEP. It was wonderful. We got everything we wanted. They thought he was our lawyer. And it always gets
a laugh, especially from many family group
or professional group. But think about
it more carefully. If families knew that
they could ask their– or churches knew
enough to say, could we go with you to your IEP– and if you want to
talk about a situation a power imbalance, for most
families, to go with them, sit with them, help
to articulate issues or just listen in– and people from the school
might say, why are you here? Well, we want to know
what you’re doing, so we can know what we might
do back in church school or whatever. But just think
about the difference it would change the
balance of what happens, and the communication that
could happen in that room. And there was a story
about– another story that related to that. I said that– told
that story once. And so we started
doing that, and we went to IEP of a
young man with autism. And the big question
in the IEP was why he wasn’t talking in school. And yet, they knew
he could talk, but he wasn’t talking at school. And the people from
the congregation were able to say, well, that’s
really interesting, because he just sang in our
Christmas pageant. So the question
becomes, then how does– why does he
feel safe enough to use his voice there
in the faith community, but not at school? And what’s going on beyond that? The other story was a mom
came up to me at the break, like we’re going to do
right now, and said, I couldn’t get up
and tell you this because it’s still too raw. They had moved from
Pennsylvania to South Carolina. Their daughter was
“microcephalic,” quote, unquote– had been in supported employment
at McDonald’s in Pennsylvania, had a uniform, went to
work, pride of employee. Got to South Carolina, and
no supported employment program in that
part of the state– she ended back up in a sheltered
workshop with 70 other people. And then, of course,
she began to act like the people around you,
begin to act– sometimes catch behaviors or habits
that are not so good. And they started
church shopping, I guess because they had
been part of something in Pennsylvania. And they kept looking,
because they didn’t really have any good experiences. And there wasn’t, in those
days, the kind of resources or whatever that would kind
of pave the way– or faith communities knowing enough
to say, you’re welcome here. They went to one
where they tried to get her involved with some
kind of young adult group, and it just didn’t work. And they got home that
night, and the young girl– the young woman
said, no more church. No church, mom. No church. And the mom got into being
a mom and said, well, we’ve got to go to church. We’re part of God’s family. It’s God’s house. We need to find a place where
we can be part of God’s family. And this young microcephalic,
moderately disabled young woman said, well, it may be God’s
house, but He’s not home. It’s one of those stories
that goes right through you, and keeps on going right through
me, and one of the things that fuels– that’s fueled my work for years. But the struggle and the
blessings of working in this area, because there
are just so many way– things that we have been taught
in unexpected and moments of revelation– and some hellish moments,
but that’s the way it is. All right, let’s take
a break, and we’ll come back and put some
of this to practice. All right, so let’s
try to put some of this into action a little
bit, and to think about how we might do that. How do you operationalize this? Again, my premise is twofold. Faith communities can use these
core dimensions of spirituality to help understand somebody. And it’s non-sectarian,
so you could use this in a way that put into
any kind of faith tradition– about my identities, and sense
of purpose, or community. How do you do that? How might you do that
within your own community, if you did it on yourself? And then secondly,
hopefully, it’s a model that secular
services and agencies can use to explore those core
dimensions of spirituality and practices for doing so. So the spirituality language, I
think– not just in this arena, but another arenas– provides a language that
enables people coming out of the scientifically-based,
supposedly secular services, and religious communities
to talk to each other– to talk to each other
in ways that maybe they can begin to understand
each other around the people they support. So the first part
of this, identity– who are you? Who am I? Who am I? It involves asking
about people’s values, their religious and
cultural identities, what brings meaning to somebody’s
life, their preferences and passions. It’s more than what
do you believe. It’s more, what’s
most important to me? What are the most important
things to me in my life? Another lens might be, what’s
most central or most sacred to somebody’s identity? Core values– sense of who
I am, including the sacred– so let’s set this up
with a simple exercise, and we’ll go from
here and start this. I’d like you all to
take the backside of one of those pieces of paper
or something you brought, and I want you to write “I
am” on it, and put 10 blanks– in a line, column, or
row– your choice– 10 blanks. And I want you to say– use words that you might
use to say who you are, and you cannot use your job. You cannot use your job, the way
so many of us define our worth. You can use roles, affiliations,
relationships, passions, hobbies, memberships,
qualities, things you love, anything like that,
but you can’t use your job. And just fill in those blanks. Fill in those 10 blanks. I’ll tell you another
favorite one of my stories from Garrison
Keillor, who said– because I hate to interrupt
the energetic talking– Garrison Keillor once spoke
to a group of young clergy or seminarians and
said to them, remember, when you get up on Sunday
morning, be very, very careful, because you’re interrupting
why people came to church. The whole meeting with
friends, connecting, talking– that that’s so often
what we’re doing. Alright, what did you
notice by sharing this? What happened? If we had time, we’d get
everybody to tell their 10, but we don’t. What did you notice?>>PARTICIPANT: Lot
of relationships.>>REV. GAVENTA: Lot of
relationships, great.>>PARTICIPANT: I just
noticed that every person who was a parent, that
was the first thing.>>REV. GAVENTA: Every
person was a parent?>>PARTICIPANT: Parent is the
first thing on the list–>>REV. GAVENTA: First thing– all right. Were there other
common denominators?>>PARTICIPANT: Shared
interests [inaudible]>>REV. GAVENTA: Like?>>PARTICIPANT: Reader,
blogger, mother, church-goer.>>REV. GAVENTA: OK. OK.>>PARTICIPANT: A
sense of community.>>REV. GAVENTA:
Sense of community. Any other kinds of things? But it became a way for people
to start connecting with– the questions we usually get
to after the conversation on the plane that says, who
are you, where are you from, and what do you do– when you begin to start looking
for those points of connection with people. All right, one of the things,
when you do this with a group of people– and we’re going to
use it for some other stuff– is that you notice– that I
notice is very, very rarely does anybody, in doing
this kind of thing quickly, say anything about any
part of their lives that they would
consider a deficit. Think about it.>>PARTICIPANT: I
said challenged.>>REV. GAVENTA:
Challenged– OK, great. I was talking to Dennis
earlier, because he was talking about
appreciating my saying something about my depression. I don’t go around
sort of broadcasting– I’d worked in this
field too long before it happened that, once
I got through it, I had to say, if I want to hide
this, that’s crazy. That’s what I’ve been
fighting against all my life. And then secondly, it was– but I don’t want
people, when I say– if I say something like that,
to interpret it as meaning, oh, wow, see Gaventa, he got–
he really conquered that depression– which is a bunch of baloney. That’s usually the
kind of story– the kind of faith story
that people would say, because of my strong faith or
something, I conquered that. That was not the case at all. I’m totally lucky and
grateful, since, to be alive. But usually, we don’t say those
kinds of things to begin with. I wanted to because
that’s the origin of hidden in plain sight, that
phrase, for me this morning. And there may be important
parts of people’s identities– cancer survivor,
maybe recovery– in recovery. There are just multiple
kinds of things like that. Now, how many of you
have had the experience of having others
define you through one of those characteristics only? Such as–>>PARTICIPANT: When you’re
a mother, when you’re an at-home mother, particularly,
people don’t give you credit for much else.>>REV. GAVENTA: Right, OK. One– others? There were some other hands. Where’d they go?>>PARTICIPANT: As a person
who has birth defects and can speak and think
why people on principle think that I am imperfect
and stupid [inaudible]>>REV. GAVENTA: I’ve
forgotten his name, but you know the guy who– one of the great guys who’s
also an advocate and humorist with facial difficulty? He’s got a little wonderful
little book called The Church of 99% Sincerity– or something like insincerity
is just kind of play with some of the ways
people use attitudes. Any other ones?>>PARTICIPANT: You’re religious.>>REV. GAVENTA: You’re
religious, yeah– in this society sometimes, yep– even though we’re not persecuted
for it, though people would say we are– sometimes are. Yes?>>PARTICIPANT: Gender.>>REV. GAVENTA: Gender? Yeah, told our gender. Yep. OK, in the back?>>PARTICIPANT: People
told me that I’m not a believer in Christ, and I am. I gave my life to Christ
a very long time ago.>>REV. GAVENTA: Well, let
me quickly tell you all, because it’s one of my
other favorite stories– it doesn’t quite deal
with this, but goes back to the healing stuff. There was a guy with a
disability in New York who got really tired of people
coming up to him and saying, can I pray over you? And if your faith was strong
enough, you could be healed. And somebody did that to
him once unsuspecting, and the guy shot right
back to him and said, well, if your faith was strong
enough, you could cure me– which is, in fact, more
biblically accurate than the other. All right, so all of us have
had that experience of that one part of our identity that
carries negative assumptions or connotations– assumptions about what it
means to be man, woman, stay-at-home mom, minister,
priest, Southern Baptist. If I told you Southern
Baptist background, you’d all of a sudden
start thinking, oh my god, one of those? You know, or could. I would too, given the way
some of our Baptist friends have gone. I’ve got that old high school
friend of mine who’s here– but Roman Catholic,
pastor, professor, student– we make
all kinds of things. The key lesson
here is that we are more than one story or thing. We like to think in
our country that we’re the masters of our
own stories, but no. So many of our stories
depend upon what you all said over here– relationships. So much of our identity is tied
up not just by me being me, but my identities comes
from multiple kinds of relationships. Are we still there? Oh, this is moving
along by magic. I don’t know how it’s happening. But I don’t know if
you know the quote or have heard this TED Talk. If not, go look it up. It’s short– less
than 20 minutes. Chimamanda Ngozi
Adichle from Nigeria. Just the the danger
of a single story– the danger of a single story. “All of these stories
make me who I am, but to insist on only one
of those negative stories is to flatten my
experience and to overlook my many other
stories that form me. The single story
creates stereotypes, and the problem with stereotypes
is not that they’re not true, but that they are incomplete. They make one story
become the only story. Hear this– power is
the ability to not just to tell the story
of the other person, but to make that the
definitive story.” Something like this
ought to be the jumping off places for both faith
communities and agencies. Good person-centered
processes can get it at least 10 qualities
about somebody– anybody– roles, relationships,
preferences, or whatever. But it could be done
in a planning meeting, but it can also be done over
coffee, and meals, and simply a shared conversation. Why? You know the answer to this. Too often, the
identity of people with intellectual and
developmental disabilities is determined by one
story and by one label. Too often, they are seen as only
part of the disability story, whether we think–
whatever we think that is. So not only is it wrong– we are also taking
the power to define– say who somebody is, rather
than using our ability to find out who
somebody really is, and the multiple
dimensions of their lives. So once we do that,
the possibilities for honoring multiple dimensions
of identity are endless. First, a common task is helping
people with disabilities or people who’ve been
labeled with a single story to tell their own story. You want to do something
effective in a congregation for education? Get people with disabilities
or their family just to tell the story. They don’t have to do a lecture. Just tell their story
or their faith journey. Tell their story, and all
of a sudden, this person– people become alive in multiple
dimensions there’s nothing more powerful than that. This is who I am. This is not who I think
I’m supposed to be or who you think I am. It begins when congregations in
the public square with a simple question– not just,
what’s your name– or to a parent of a child
with disabilities, to say, tell me about your child. We got in a discussion
earlier at our institute this year that was a
discussion that became a podcast from the Mormons. And one of the
theologians, who’s also a parent, talked
about various things people had said to her as a parent. And somebody said,
what’s the question that you want people to ask you? And the question was,
tell me about your child, or tell me about
your son or daughter. Don’t put any kind
of meaning on that. It’s practicing the most
ancient form of assessment. The word assessment in Latin
means “to sit next to.” We use assessment as a way of
objectifying and moving apart from, but assessment at its
root means to sit next to– over a cup of coffee, over– everybody ended up with the
same table out of Boston College Continuing Ed event– whatever. You begin to know each other. So in terms of faith
identity, think of how this reinforces
the importance of– think about how this reinforces
the importance of growing up in a faith community and
absorbing a sense of identity through doing so– not just through the
official rites of passage, like first communion,
or multiple forms of worship or ritual, or
education, or recreation, or service, or
experience of learning. Think of the
stories you’ve heard and the experiences you’ve had
about the transforming quality of those rites of passage for
people, children and adults, with intellectual and
developmental disabilities– how that inclusive
rite becomes something that is not only meaningful
to the individual, but transforms a
whole community. How many of you have seen
the movie Praying with Lior? Yeah. Look it up sometime. Find it somewhere– 25
minutes, 30 minutes. It’s about Lior Liebling, who’s
a young Jewish man with Down syndrome in Philadelphia, who
grew up in a congregation. His mom was rabbi. She died– dad got remarried. But Lior has– his gift
is davening, the capacity to lead in prayer, and to pray
with ways of moving in others. It’s an incredible film. You really see the power
of that kind of community. And then think of
what people then have the chance to
experience and grow up in a faith community. Then they’ve got the chance
to practice all this stuff. So often, people with– people say to people with
intellectual development abilities– they go to a
congregation for the first time and they don’t know what
we in the autism world call the hidden
curriculum that’s part of every congregation. Each one of your congregations
has a hidden curriculum, and you don’t know what that
is until you do something that steps over the line, right? And that’s what families
are so afraid of. It’s the hidden curriculum. And we need to make that
hidden curriculum explicit. But the way you learn
a hidden curriculum is not through intellect, but
practice, practice, practice. Jenny and I grew up
as Southern Baptists. We had multiple
opportunities to practice– going to church, I say,
as a missionary kid, more times a week than I ate. You learn that through osmosis,
and you knew what to do when. Think about when you go to
a faith community that’s radically different than
something you’ve grown up to. When I first went to a Catholic
Mass or an Episcopal service, I was what I would label
liturgical challenged, because of not knowing what
to do, and when, and looking desperately
for the guide to do that. But think about also
the way that somebody begins to be able to say,
I am John, or I am Mary, and by golly, I am Catholic. And I go to this
parish, and Father Tom is my priest, and
sister so-and-so. I’m an acolyte, and then all
these other parts of things start adding to
people’s identities. So our challenge these days
is, how do we create and help people have multiple stories,
starting from the things where they already are,
and going from that. So give people more
than one story. So secondly, think about
who are you, the question. We’ve answered that for
people with disabilities and ourselves through the
single channel of employment– or not who are you, but
why are you– sorry. But the deeper question is,
what do you really like to do? What do you want to be? What do you want
to do in the world? What do you think
your purpose is? What’s your sense of
vocation or calling? What are your gifts? What kind of difference would
you like to make in the world? So starting from passions, and
experiences, and interests, and then moving into roles where
you can share those passions and interests, that is the
beginning of helping people find a sense of purpose. And that sense of purpose can
be lived out through employment. How many of you know people
with intellectual developmental disabilities who, like
some restaurant owners, have probably got their first
paycheck nailed to the wall? They’re so proud to
have earned that money. But there are also
so many other ways that we express our
sense of purpose and can make a difference. How do we find– the
question is– for people to have opportunities to
give as well as receive? For service agencies,
and transition planners, and employment programs, how
do we give chances for people to test out their interests
to do something meaningful, and in spite of the tons of
money poured into employment for people with IDD? And there are lots of
creative things are going on, but the rate is still
pretty terrible– the unemployment rate. But you know the stories. Bill Kiernan, I think,
told me about the story about young woman with Down
syndrome who started the cookie company in Boston. [inaudible] Yeah. And that’s happening in baking. You see all these
things on Facebook about coffee shops
being run by people that are shaping employment
opportunities around what people like to do, or
finding something like to do. And for faith
communities, how do we help people with intellectual
and developmental disabilities, or any kind of
stigmatized identity, have a sense of identity, have
a sense of doing something in the faith community
that they are giving as well as receiving– that they are being disciples,
that they are doing mitzvah, that they are following the
laws, if you’re coming out of the Islamic tradition? We say, in our
Christian tradition, that it’s more blessed
to give than receive. It’s also a whole lot easier. None of us are very good
receivers at asking for help. That quandary of most
pastors is that people come to church hurting, but most
people have got on their Sunday best, and the pastor
never gets told what’s going on somebody’s life. And therefore,
they– because we’re all supposed to be showing our
Sunday best and our strength. Our identity is so wrapped up
in our sense of independence and of not needing others,
that we often ache for support. And in that capacity,
and the irony is, that we think people with
autism are socially inept. Hear that carefully. We think people with
autism are socially– if we can’t figure out ways
to say something about places where we need some help or
support, then we’re not– we’re kind of socially
inept as well, if you want to talk about
that in a different way. How many of us
sing, as Christians, “Just As I Am,” but nope,
we don’t really want to show people just who I am? so the danger of people with
disabilities in the terms is the danger of being
seen as a single story. And we make them the designated
receivers in our congregation, and being like a
designated driver. Or to use the lingo
of a service system that once meant equality–
the word that I hate– that people we
serve our consumers, that that’s our only
role is to consume. The reason I hate that term
is because it makes it– it portrays an image of
people with disabilities as being people who
consume what society gives without any production
or sense of giving coming back out of that. So in a congregation,
the quickest path to inclusive supports
in a congregation for a person with intellectual
and developmental disabilities is for the church, or parish,
or synagogue is to find somebody a job in the congregation. Find a way that they can
make a contribution– to be an acolyte,
to be an usher, to be– put up the chairs,
to help with coffee hour, to clean, dust something, to be
part of work days, to do this, to be a teacher’s aide. If we can’t find somebody with
an intellectual disability something to do in
the congregation, it says more about our lack
of imagination and creativity than it does about
their ability. They may need to do
it with somebody else, do it together, but let
people see people acting out their faith as believers and
as parts of this congregation, that they’re not just
there to receive– they’re also actively
doing something and giving. I got a bunch of favorite
stories about that. I’ll tell my Roman
Catholic story. It was about the young
man with Down syndrome down at the Jersey Shore
who became an acolyte. And his mom took him to mass so
he could be an acolyte one day, and after Mass, a young man– the mother couldn’t find him. Mom goes to temple,
can’t find young son. There’s some kind of story here. And she finally did
found him, and he was talking with an older couple. And it turned out
that older couple had come to parish, the church
that day full of questions, and uncertainty, and kind
of hurt in their heart because their first
grandchild had just been born, and the grandchild
had Down syndrome. And think of what it meant for
them to walk into that parish and see this young man
in a socially-valued role in that parish, who took
pride in what he was doing. It’s no wonder they wanted
to talk to him about, so who are you? And think about
the power of that– not just for the
individual, but for others. And think about trying to marry
the potential of employers and faith communities
to one another. It’s one of the projects
that Erik Carter, and I, and some others did
about six years ago, and the model is out there. We did a project
called Putting Faith to Work based on a simple
idea from the Old Testament, that your farmer
was not supposed to harvest all of the crops,
but to leave 1/10 of the field so that the widows
and the orphans could pick their own food
and have the dignity of work, and thereby, not just
have it given to them. So the idea in our project
was the one magical component of most congregations is the
capacity of a congregation to get a group of
people around somebody who has a need and a group
of people to support. It can happen for a short time. It can happen for a longer time. Could happen
through a committee, or it could be kind of
a flash mob of help, to help somebody do that. But what we did was get a
group of people together, person with a disability
who wants a job, have a chance to get to know
that person with a disability– part of their congregation. And then figure
out what they need might need to help get them
better prepared for the job, but then use the social capital
the rest of the congregation to find– to say, Ralph, this guy
we’re trying to help find a job– you all know him. He’s grown up here. This is what he loves
to do, and we’re trying to find a place for
him to have a job– get a job. Tell the whole
congregation that. Think of all of
the roles that they have out in the
community in contacts. Think about all the
potential places. Oh, I know somebody who
might be interested. Oh, we could think about that. Think about that. And that’s how most
of us get our own jobs anyhow is through
contacts and networking. It’s not through bulletin
boards and through– use the power of
that networking. And then, if it’s somebody who
has grown up in a congregation, it’s about getting Ralph a job. It’s not but it’s
not about starting to support an employment
ministry– although, that’s what they’re doing. So the power of to think
about having to do something, or if not a job,
somewhere where they can use their interests,
and their gifts, and passions in volunteer
ways, or others as well. Putting Faith to
Work– it’s online. You can download the manual. It’s non-sectarian. You can adapt it to
any of your theologies. I think there’s some
really powerful stuff about what it means to work. Third, the value of
inclusion– and the question is around connection and
belonging– not who am I, but whose am I? That’s the major identity
question in the Bible, and the Quran, and the Torah. In some parts of the country, we
might say, who are your people? Who are your people who are? Family, home is the place you go
where they got to take you in– or the Friends song, why
so many of us know it– where everybody knows my name. Not just where do you
come from or where do you come from multiple
forms of connection. You think about connection,
those connections can be– sorry– to the natural
world, connect around nature, around pets. Walking a dog is one of the most
socially connecting activities for anybody in a neighborhood,
because people want– come together around
pets and animals, and start conversations. Connections to time, connections
to places, connections to ourselves, to
others, and to whatever it is we define as sacred– and through those
connections, we gradually build a sense of belonging. Those of you who were here last
year, I hope heard Erik Carter, but what he’s done now,
out of talking to families and individuals with
developmental– intellectual and developmental
disabilities, is come up with a model of what
it means to belong, as spoken by families
and individuals. And if you haven’t
seen the model, this is not just a spiritual
or religious model. It is– kind of goes everywhere. 10 aspects of belonging– to belong, you’ve
got to be present. You may need to be invited. You want to be welcomed. You want to be known. Robert Raines had this
wonderful quote which said, we all think we want
to be well-known, when what we really want
to be is known well– that we really want
to be is known well. To be accepted, to be
supported, to be cared for– congregations do that
with each other– to be befriended, to be needed– people need me here
to do something– and to be loved. And that is not just faith
communities, but faith– that’s what faith communities
can do par excellence, that many other
places cannot do. But that’s why congregations
are so important in this. So there are lots of
resources out there for faith communities and
community building resources. I’m not going to try
to list them all. And I’d also want to
say before we get away that there are people in
Boston beginning to do more on interfaith connection
around building inclusive congregations. Some of that’s coming out
of the Jewish Federation. Molly Silver runs one of those. There’s a conference in
December that they’re going to invite
people to, and there’s going to be a bigger
one next spring funded by the
Ruderman Foundation. But it’s becoming
not just Jewish, but becoming gradually
more interfaith. And Molly was supposed
to be here this morning, but part of the value in this– I’m a firm believer
in connecting with people who are
doing this, because you get to see other people
and what they’re doing. Yes?>>PARTICIPANT: I just
want to invite anybody who wants to come visit a 37
year old community for people of all abilities
in west Concord. You’re totally welcome
to come visit some day. Fellowship, it’s
Christian perspective and it’s Sunday afternoons. And if you want to visit and
see how it works itself out, there are some folks
who also identify with the church
in close ministry, so they’re inclusive and
some disability community specifically. If you want to check that
out, please let me know.>>REV. GAVENTA: Are you
a L’Arche community?>>PARTICIPANT: No.>>REV. GAVENTA: You’re not.>>PARTICIPANT: We’re
just a UCC Church.>>REV. GAVENTA; Oh, OK, cool.>>PARTICIPANT: A group
home started opening up in the ’80s–>>REV. GAVENTA: Well, that’s the
connection and people building this kind of
interfaith coalition, because it’s happening in
different parts of the country. And you begin to
say, wait a minute, that’s what we’d like to do, and
you go do it from other people. And that’s the value. It’s one of the skills and
community building, which is that little skill that we
say never happens in churches, but it happens in
human services, which is the value of
friendly competition. Well, if our UCC
can do it, how come First Methodists can’t do it? We do that in all
kinds of other ways, and let’s see how to do that. But let’s go back a minute
and start say something about expanding this from
those dimensions of who you said you are– I am. For years, literally 25 years
working on connecting people with disabilities with others,
I worked on this kind of model. How do I connect people with
disabilities with somebody who’s not disabled? Through churches,
through friendships, or volunteers– whatever. And you know in that one-to-one
connection like that, and you’re inviting people
to come to your community. And people who’ve never had
an experience in disability might have all kinds of
questions and uncertainties, and all kinds of stuff going on. And sometimes the people
with– then with disabilities have also got all kinds
of questions going on, like is this person going
to really talk to me, or they’re going to
just pat me on the head? Or are they going to talk to
the parent or somebody else, and not to me? There are all these
kinds of questions, all these spiritual and
psychological things swirling around in that. And then, with the
best of community building theories and
practices, I finally got it. It looks like this– that what you do– think about the 10
things you listed– is we start connecting people
through common passions, or interests, or roles,
or things that you do, or relationships, and
start working through there and finding out what people like
to do together so that then, you can– If you know a person with an
intellectual disability who loves to do something,
you go looking not just– you go looking for somebody
who loves to do that thing too, even if they don’t know
anything about disability. You go looking for another
person who shares that passion, and invite them
into a relationship where– to come meet somebody
who shares that passion, but never has a chance to
express that in community, or talk with other
people about it, or other kinds of friendships. Let me tell you one
story Erik Carter tells in Madison, Wisconsin. He was part of a church. Think about this–
Madison, Wisconsin. A group home opened near
them, and they found that out, and they decided, let’s try to
get some men in the church– it was men in the
group home– let’s try to get some men to go
over and meet these guys, and get to know them
and befriend them. So they put a notice
in the bulletin. They advertised for a couple
of weeks for a meeting after church. How many people showed
up on that meeting? Zero. So they say, well,
that didn’t work, and so they thought some
more about it, and thought. And about a month
later, they put together a bulletin that
said, we’re thinking about starting that
event on Sunday afternoon so all the men who
are Packer fans can get together and
watch Packer games, and drink some beer, and
have a good time as part of church fellowship. How many showed up? 50. Yeah, 50 people. And then they said,
and by the way, we’ve got some guys
up the street who live in a home who’ve
got some disabilities. We could help you with that,
but they’re all Packer fans and they never get a chance
to be with other Packer fans, or go to a bar, or watch a game,
or have a beer or anything. And for genuine Packer fans,
what’s the bigger tragedy– the disability or
the lack of being able to do that
with Packer fans? The tragedy is they can’t get to
live out that kind of interest in their life. And so they got that going,
and the guy, the connector could say, I’ll teach you
about the disability stuff, but I don’t know
the Packer stuff. You guys are the experts
on the Packer stuff. Out of that shared interest,
then people got connected. And people were beginning to
do that in a variety of ways. Young guy with– severe
on the autism spectrum who loved to break glass
and New Jersey, he finally got a job
at a recycling center. He could break all
the glass he wanted. And there’s a story in
the book, and I’m not going to give it away. You got to read the book from
Australia that’s even better. But it may not be quite
proper for a religious setting to tell it. I say facetiously sometimes,
the question about the challenge here is, quote, “reversing the
tragedy”– what people think is a tragedy. People think disability
sometimes is that. Bob Persky had a wonderful
quote from a husband– a father who said
to another father, can’t you see it’s we who tell
other people they’re a tragedy? It’s we who tell other people
they’re a tragedy by the way we relate or don’t relate? And to change the
need or the deficit from anything having to
do with an impairment to the deficit of experience. Chaplain student of mine
went to a group home near Atlantic City was
trying to figure out what religious
connections there were. The staff people said,
oh, they’re all Christian. We love to watch the church
on TV on Sunday morning, and everybody joins in. And the chaplain said,
well, wait a minute. One of these guy’s name
sounds awfully Jewish. You sure he’s not Jewish? And she said, no,
he’s not Jewish. He loves to be–
watch that service. And so she went up
to the guy and said– Scott, I think his name was– Shabbat, and he said, shalom. And all of a sudden,
of course, that came right out of this tradition. There was something
there, and they found out that that was his tradition. And lo and behold, as
grace would have it, there was a synagogue
about a half a mile away that was just starting
to work on inclusion, and a match got made in
relationship to that. The tragedy is the
lack of experience in the things or opportunity
to express the things that are most important to you. And the most important
question is the “why”– why we do all this. And you’ve got your
own answers for that. The why question may
be because we’re all created in God’s
image, that we all belong to God’s family,
to the people of God, to the ummah, the people of– the body of Christ. We all believe in some
of the core things that have come up to me. And bubbling up and
all this is what’s talked a lot about these days
is hospitality to the stranger, and people with disabilities
are the quintessential strangers in our communities. The irony is a lot
of congregations who work very hard on diversity
don’t include disability in that diversity,
and haven’t caught yet that the definition
of disability is evolving from a disability
issue to a diversity issue. People with
disabilities are going to be with us and part
of us, and some people are beginning to
say from the very– theologically, to think about
how people with disabilities were there, in a
sense, at creation, or things with
disabilities were there– that disability is not a
sign of the brokenness. And that’s one of the things
that gets me really up the wall when, people say
disability is evidence of our brokenness
of the human kind. Well, you may believe that Adam
and Eve, by their disobedience, broke something, but don’t
put that on somebody else. If you want to talk about
evidence of brokenness, let’s talk about me or you
in relationship to that. Then also, the ways
to begin to do this– think about what
doing spiritual– oh, so anyway, again, you
connect through the “who.” Who are the people? What is the thing
that connects people? Where does that happen? Where does that happen? Think about where
those people gather. When do they happen? How do you get to be there? Who gets invited? How could you come to get
to know some people there? And then the why
question about why this is so important to
people in people’s lives– you can also begin
in secular services. Talk about spiritual
assessments and helping to capture through
person-centered planning. And this whole thing
about connection goes back to the sense
of the third thing. What’s the third thing
that connects us? And the third places– there’s a concept in sociology
about the third places where we gather. And my experience this week in
Boston for the last few days is that the third
place where I have had the most interesting
conversations with people is with my Lyft
drivers, taxi drivers. I have connected with
people who I never would have connected
with because we were in the same place, and they
happened to be friendly people, and we had marvelous stories
together, and then shared commonalities. But third places are
congregations, saloons, farmers markets, schools,
educational places. Where are those third
places where we– besides work and home– where we can connect
to each other? And how do we make sure that
people are visible there, especially when there’s
something around a shared passion? The other piece about
the spirituality piece is that this is a thing
that’s across the lifespan. It’s not just for adults. There are spiritual dimensions
and experiences at birth, at the onset of
diagnosis, in early years. Think about the power of
faith-based early intervention, getting kids involved in
nurseries and Sunday schools early on. Inclusion in a
religious education, walking with people through
the journey of adolescence– I had a Methodist guy say at a
church where their youth group had really worked
on being inclusive, and he was beginning
to get kickback, blowback from some
parents saying, my kid– who didn’t have a disability– I’m not sure my kid
can handle that. And you want to
say, well, they’re going to need to be
able to handle stuff like this in the future. And what would be a
better place in the world than for a youth
group, where you learn how to connect with
people around differences and to see one another? And if you want a
ministry by youth groups, it’s to be inclusive of
people who, at their schools, get bullied, and
stigmatized, and teased during that time of
life when all of us are trying to figure out
who’s the “in” group, and what do you have
to do to be cool, and all those kinds of
things that are going on. With adults, with getting
to transition to adulthood and work, adult
relationships, grief, loss, and end-of-life issues– all of these involve
spirituality and spiritual dimensions in our lives. So my hope is that this
understanding that spirituality is hidden in plain sight
can help faith communities and support agencies, that
collaborative efforts can begin to work with each other
across those areas of service– that people, instead
of having their lives dissected into
different sectors, that we can begin to surround
people and more holistic ways, and that for professionals
in the world of disability, we could begin to
pay more attention to the role and power
of spirituality, as well as paying attention
to professionals– our own spirituality, and
what drives our commitment to be professional. You know where the word
professional came from? Professing vows to
a religious order. You professed your vows. And I say to people sometimes
facetiously these days, The professed vows
in a religious order and made vows of poverty,
chastity, and obedience. In these time and days,
most professionals would not make vows of
chastity and poverty. They may make
values to obedience, because too often, most of
our human service systems are run on fear, and on
doing the right thing, and making sure you
don’t make any mistakes. But can we make
other kinds of vows, like the vow to be more
mutual in our relationships, and share power, rather
than holding all the power, and to be able to walk with
people through people’s lives? And for spiritual
leaders, can we begin to see that the
core spiritual values are at the heart of good practices? And together, if we can
get systems of support around people to unite
and work together, then perhaps people can begin
to feel like there’s a uniting center, and you repair
that breach and help people to have more
holistic lives, with people around them who will
talk to each other, and work with each other, and
then keep on learning together. That’s what I have to say, and
there’s a lot more about it in the book, if you want to. [applause] Let me say to you– We copied this thing about
being interested in keeping in touch with what’s
going on, there’s a bunch of websites, and
listservs, and things to do. We’ve got this Institute
on Theology and Disability that’ll go into its 11th year
next summer in June and May. It’s great community. I am– finally learned how
to let go of something, and there’s a new group
of people taking it over. Old dogs can learn new tricks. But there’s interfaith
effort beginning to happen here in Boston,
like around the country. So there’s a
question or comment. Yes?>>PARTICIPANT: I’m going to
try and make this make sense. I was lucky to
get to meet Judith Heumann, a great advocate and
leader in the disability rights movement, this week. And I was so
excited to meet her. The congregation
where I work, we’ve been trying to learn about
the disability rights movement and its heroes, and
where we’re teaching that is through the
concept of saints. Now, I know Judith Heumann
is not part of a church, and so it’s a very
loose definition. And we’re not the
only church that has–>>REV. GAVENTA:
But she is Jewish.>>PARTICIPANT: Yes, I know. So we’re not the only
church– well, I don’t know. I’m going to try to
not ADD this question. So I realize how, when I
shared with her excited I was to meet her, what
that must have sounded like. I shared a little bit
about our community, and that we call it a community
of friendship and worship for people of all abilities. Well, my question is around
this idea of identity. It was very important
to her, and I can understand why, that– to define disability
community, and that disability, not ability, it needs
to be the defining word. So I guess it felt like
she and I, in particular, had a disconnect, and
there’s maybe some– perhaps a disconnect
between when we are, as a
religious community, trying to form
inclusive community, and we don’t want to
talk about broken– we talk about common brokenness. But we don’t want to talk
about needing to change, and that we are
whole as we are– that can feel erasing for
some folks with disability, and I think that’s how
she was– the point she was trying to make. And so I just wondered if you
have any comments on that, rethinking professional
ethics and thinking about how these
questions around identity work themselves out in the
progression of the movement and change in society. Could you say
anything about that?>>REV. GAVENTA: Sure. As you know, there
are just all kinds of issues around labels
and things like that. And there’s a new sense of
people in the disability advocacy community that
say to claim disabled not because they’re sick
and tired of equally challenged, or equally
able, or are challenged– ability challenged, or
those kind of euphemisms. They say, no, this is what I am. This is what it is. And there’s a parallel
in the same way with people– other groups
and movements who’ve been on the margins, who
take the very identity that’s been used to exclude or
minimalize, and turn that into a notion of power. Black power, women’s power– you get that same kind of
thing that begins to happen. And so you get that thing. The key thing, I think,
when a community is then begin to say to the
people who are involved is, how do you want
me to refer to this? And let them tell you,
rather than our telling that. At one of our institutes,
a pastoral counselor said he works with people
with psychiatric illnesses and other things. And he starts off the
sessions by saying, you know I’ve got to put down
something for the insurance, and I’ve got to use a label. But in our sessions together,
what do you want me to use? And give people then
the power to name that part of themselves
that– in a way that they can begin to use that. Now, it also used
to be that there’s a little Methodist book from
30 years ago that is entitled– about the early
ministries– it was entitled We Don’t Have Any
Here, dealing with, I think, you ask a congregation,
do you have any people with disability? No, we don’t have any here. And they were trying to
say– refute that and show some creative ways of doing it. I’m waiting for the
we don’t have any here to be the sign that we’ve
almost reached the kingdom in this kind of way. And I’ve heard this from a
parent in Canada, where some– where they had a congregation
that was very inclusive. Somebody asked them
about disabilities, and the person in
that congregation said, oh, we don’t
have any here. And the person said,
well, wait a minute. No, there is people– there’s a
guy over there in a wheelchair. There’s this young man
with Down syndrome. There’s this other older
person who uses a cane. Oh, that’s just Jim. And that’s just Jane. And that’s Bill. I don’t know think about
them as a disability. I think about them
from their name, and that they’re part
of this congregation. So one of my versions
of reaching the kingdom is that we don’t have any
here, because we are all known in ways that
are important to us. But it’s a very loaded area. It’s a loaded area in lots
of other areas of life too. It talks about the
power of language, just like the old Down syndrome
thing about sticks and stones can break my bones, but
names can really hurt me. Any other questions or comments?>>PARTICIPANT:
Thank you so much. My name is Sheila, and I am
a chaplain at the Dana-Farber Institute for Cancer in Boston. And I wanted to respond
to the gentleman’s comment earlier on how chaplaincy
can be measured or valued. So in my role, I participate in
a lot of stem cell blessings. So stem cells come from
either the patient or a donor, and they are often the last
resort for people in treatment for cancer. And so it’s a long
process to both donate and to receive stem cells. And these cells can come
from all over the world, and they have to be
injected almost immediately into the patient. And so we bless the stem
cells before they’re put into the patient. And I’ve been told by
the clinical staff that stem cells are more readily
accepted into the body– they can be rejected,
which is devastating– if they’ve been blessed. They’ve actually measured
this and done studies on it. And so this actually affirms
the chaplains in the hospital, because we spend a
lot of time blessing both the patient and the cells.>>REV. GAVENTA: Well,
that says something to me about the attitude of
the center towards all of that, and that they– all
of them recognize we’re walking in holy ground. And that, I imagine, would
feel very healing to people. Any other questions? Back in the back.>>PARTICIPANT: It’s a
pleasure being here today, and thank you. I could feel the higher
realm all around me, and I’m sure I was
not the only one. I’m looking for more
of a feedback from you. I’m a special mom. My daughter has special needs. And often, in talking
to other parents, they do feel that their children
come from a higher ground a realm of spirituality. And somebody who
is not spiritual may think this is crazy, but
I know mine come from there. So for someone like you, and
so many of us that are here, can you give us some feedback? I know it’s not
from the mind, and I know it’s there, because
it’s connecting me and her and so higher up. Anything you can
add to that, please?>>REV. GAVENTA: Well, here’s
a way I would respond to that. I would say there’s all kinds
of layers in response to that. I could say that
it’s through people– friends of mine and
people I’ve worked with that I’ve certainly become
more aware of higher realms myself. I’m very careful about making
a designation about saying God sent– or some higher realm
sent this child to be, because there was– once upon a time, there
was a terrible poem that used to float around called
something like a meeting– started off like, “A meeting was
held quite far from the Earth. It’s time again
for another birth.” And God and His angels
are figuring out, who can we send this child to? Because they’re special parents. And most parents would say,
when somebody says, oh, you’re so special, their first
response, if they’re honest, is to gag. Now, their child may
feel it’s special to come from another realm,
and what I would mostly say to that is then
you, as a family– and thank God,
about 30 years ago, people began to talk
about the sense of– Ann and Rud Turnbull began
to talk about and research the positive contributions
that children with disabilities made to families and
people with disability. Because before that, of course,
that professional assumption was a family had a child– send him away– going
to be a complete burden. And it took heroic people
to stand up against that. What I would say is you,
and you found other parents, for whom that sense
or that belief has been a core meaning– come to be a core
meaning for you at the core of all those
questions about being parent, and about what all this
means for you, and so on. And I may not be
able to prove that in any kind of scientific
way, because they won’t ask the questions. But by golly, I’m not
going to come in and take that foundation out
from underneath you unless I think there’s something
better to take its place. The beliefs that we have around
core things in our lives, we so too quickly say,
oh, that can’t be true. You can’t really believe that. The importance is, how does that
belief function in your life, and how does that function? And the way it functions is for
the good, as best I can see it. Some of you who are
old enough, like me, did you ever see the
little 12-minute movie called Mother
Tiger, Mother Tiger? I’ve got it on tape. I’d be glad to put it
on Dropbox and let you– I could do it illegally. I can’t find the people
who own the copyright. But it was done by
the same guy who did the movie called
The Parable, Forsberg, a long time ago. I’m really dating myself. But it’s a 12-minute
story about the birth of a child with
multiple disabilities to a particular family. And it starts off with the
husband and a very pregnant wife playing around
in the nursery, which they are decorating. And she’s on our knees
and says, I can’t get up. And husband comes over
to help her get up, and she looks
playfully and said, God, why’d you do this to me? And her husband, or
somebody, said, no, He didn’t do it to you. He did it for you. Then the child is born, and very
dramatically, in five minutes, they go through all
these horrible things about diagnoses, and
getting diagnoses on paper, and nobody around
to support them, and ending up with her older,
multiply disabled mom at home, child in a crib crying,
and a lot of noise, and the mother at
the end of her wits. And she goes over to the
crib and yells, and just say, why all this? Why it happened– and
then she goes downstairs– this is very dramatic– very
dramatic, maybe overly– goes to their safe and
pulls out a pistol, comes back upstairs,
and for a moment, pulls a blanket over
the daughter’s head. And for a minute, you
think she’s– oh my god, this mom’s going
to kill her child– which has happened
before, and sometimes has happened in the past. But that’s not what happened. She does fire after
she’s said some things, and she hits three things. She hits a mirror,
she hits a picture of a parent with
a child, and she hits this doll that’s in a
Russian doll kind of form up on a shelf– and falls into a swoon. Now, the symbolic piece of
that, what she’s hitting is this clown up on the shelf– a la my image of God– this picture in the mirror– I am not who I think
I am, but different– and this other picture of
a family with a child– this is going to be different. She falls into a swoon, and
her waking up from that, she remembers that experience
in the nursery before the child was born, where she said–
they said playfully, oh, He didn’t do this to you,
He did it for you. And that became her rallying
cry, and the brick on which she began to rebuild her life– and then became an advocate. And then all of these– some
pictures about all the things that have flown out– come grown out of that. As a pastor, I would never
walk into a situation like that and say, oh, God did
it for you, not to you. That’s not for me to say. That’s not for me to say,
but if a family comes to– usually, the long time in that
crucible to figure out what the meaning of this for them
is, and that’s what it is, as part of their spiritual or
faith tradition, then by golly, I’m going to support
that and say, I’m so delighted that that’s– and that means something to me. And tell me more about it,
so I can learn from you. Then I’m going to be on
holy ground with you, because you’ll be
telling me about what means the most to you. Think we better stop or it. [applause] [music playing]

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