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  • theologyanddisability 7:51 pm on July 6, 2012 Permalink | Reply  

    Summer Institute on Theology and Disability 

    An inter-faith perspective on topics related to developmental disabilities, including ethics, integration of science and religion, mental illness and dementia, will be discussed by international theologians, scholars and authors during the Third Annual Summer Institute on Theology and Disability, July 16-20, at the Catholic Theological Union.

    This is your opportunity to engage with presenters and attendees. Join in on the forums listed below, by clicking the ‘reply’ link next to your topic of interest, and sharing your comments and questions.

     
    • Sue Edison-Swift 9:24 pm on July 18, 2012 Permalink | Reply

      Find conference photos posted on http://smu.gs/PjReZ0.
      Blessings, Sue

      • Rev. Elizabeth "Betty" McManus 9:24 am on July 21, 2012 Permalink | Reply

        Great photos Sue! Thank you for posting these wonderful memories!

      • Sue Edison-Swift 8:54 am on July 22, 2012 Permalink | Reply

        Friday’s photos are now posted. There are 51 images from the conference. Use the link above or go to http://smu.gs/PnEaBZ (case senstive).

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  • theologyanddisability 8:16 pm on July 6, 2012 Permalink | Reply  

    Disability and Meaning 

    Featured Speaker:

    Hans Reinders, Ph.D.

     
    • Joanne Meyer 7:55 am on July 15, 2012 Permalink | Reply

      I look forward to your presentation and wonder if you personally knew the late theologian and author, Father Henri Nouwen. Henri laid the spiritual foundation for the Pathways to Worship ministry with his keynote address “The Vulnerable Journey” at our 1996 That All May Worship Conference cosponsored by Pathways Foundation and the Roman Catholic Archdiocese of Chicago. The 1996 conference inaugurated our ministry of providing information, education materials and cash grants to faith communities seeking practical ways congregations can welcome and include worshippers of all abilities. “The Vulnerable Journey” will be available on DVD at our booth at the Summer Institute on Theology and Disability.

      • hans reinders 3:21 pm on July 19, 2012 Permalink | Reply

        Hi Joanne,

        No I haven’t met Henri Nouwen personally, but I have studied his work and particularly his posthumously published book about his friendship with Adam, one of the core members of Daybreak. The results of this study appear in the last two chapters of my book ‘Receiving the Gift of Friendship’.

    • Joanne Meyer 11:46 pm on July 16, 2012 Permalink | Reply

      Thank you for the observation that the term “inclusion” insinuates “the other” and that we must go beyond inclusion to be truly welcoming worshipping communities.

    • hans reinders 1:49 pm on July 19, 2012 Permalink | Reply

      Please find the following link to download the paper I presented on Monday:
      https://dl.dropbox.com/u/44710577/Disability%20and%20Creation.doc

    • Christopher Phillips 1:15 am on July 20, 2012 Permalink | Reply

      I’ve made my notes from the morning and afternoon sessions with Hans available at: http://www.faithability.org/religiondisability/disability-and-creation-notes-from

      • Joanne Meyer 7:47 am on July 21, 2012 Permalink | Reply

        Christopher,

        Thank you for sharing your wonderful notes on Hans Reinders presentation.

        In your notes from the Hans Reinders discussion workshop after his presentation you mention the story of the man at the Bethesda pool, John 5:1-18. In the New American Bible and The Jerusalem Bible, Jesus asks the man “Do you want to be well again?” Jesus does not make the assumption that the man wants to be healed but instead asks the man what he wants. The man’s reply is a plea for access, not healing. Eric Carter’s research confirms that people with developmental disabilites and their families are still asking for access to faith communities.

    • Rev. Bill Gaventa 11:49 am on July 22, 2012 Permalink | Reply

      Short Notes by Bill Gaventa: (this was the first presentation of Monday’s five, all of which wove together in unexpected and wonderful ways) The videotapes to come out will make for an excellent seminar (s)
      Hans began by suggesting that the theology underlying most of our efforts in inclusive ministries has been that of redemption, helping people return, change, be included in the people of God, being transformed, etc.
      What if the underlying theology was creation. That all was created good, as in both Genesis and in first chapter of John and in many other parts of the Bible where all of creation is proclaimed as blessed, or that “all creation” will sing. If that is the perspective, then all creation is gift.
      If so, then the question is how to we help all of creation to flourish, just as we would with plants, trees, creatures. Nothing flourishes without the right kind of circumstances in its environment. So the question becomes how do we find the right environment, or create the right environment, for everyone to flourish. In nature, for example, what many gardeners might consider a weed can often be a plant with multiple values to other parts of the environment.
      Hans told a story from Angela Amado, about a young guy named Larry, whose “gift” was that he loved to scream. His supporters then looked for an environment in which screaming was a gift, and they found a retired men’s volley ball team that welcomed Larry as a fan. He loved to watch them, and he became their Number 1 fan…and, over time, the screaming diminished and became used at more appropriate times.
      (note, see Tom Reynolds’s talk in which he talks about interruption and provocation as invitation and invocation.)
      So, as one of the themes of the conference which emerged…what is beyond inclusion. How can we help people, with the variety of their gifts, flourish?

  • theologyanddisability 8:15 pm on July 6, 2012 Permalink | Reply  

    What Matters Most: Families, Disabilities, and Compelling Congregational Supports 

    Featured Speaker:

    Erik Carter, Ph.D.

     
    • Rev. Elizabeth "Betty" McManus 9:26 am on July 20, 2012 Permalink | Reply

      Erik – your presentation was compelling. I’m still struggling to wrap my brain around identifying markers for measurement of intangibles, but I’m looking forward to working with you on the development of a spiritual assessment tool! Thanks for all you do!

    • Christopher Phillips 8:24 am on July 23, 2012 Permalink | Reply

      A few thoughts from Eric’s Monday Presentation:

      Eric is doing research to look at practices of faith and the importance of congregational supports with a focus on gifts rather than on deficits.

      People with development disabilities are often not very known or understood.

      Professionals sometimes wonder if it is it really their role to support people with disabilities in this dimension of their lives and many congregation leaders struggle to provide needed welcome and support.

      Some background on the Youth and Families Flourishing Project:

      6 million people have the label of developmental disability in the United States (approximately 3%).
      30% of all families have a member of their immediate family or a relative who has a developmental disability.
      Developmental disabilities cuts across every demographic group.

      Although people with developmental disabilities have the right to attend public school, they do not necessarily have the right to worship on Sunday.

      Members of this group may exhibit challenging behavior and the presence of those behaviors often impact the worship experience.

      Using an assessment scale for positive strengths, the study works with individuals and families to identify strengths and gifts.

      Important to focus on gifts- we often introduce people with disabilities based on their deficits and how we introduce people really matters.

      Consider the difference:

      1. Jake would like to attend your congregation, but has autism and will needs some people to sit with him all of the time.

      2. Jake is a new member of your congregation, he’ll fit in well with the others in his youth group and is great at remembering names.

      Help people see gifts first!

      There is also a need to look at spirituality both within and without a congregation- both personal and private experiences.

      What kind of supports do families need? In general physical accessibility is the least important need that families express. Consider other ways to support a family such as disability awareness, having an advocate in the congregation or sponsoring a support group.

    • Christine Guth 7:09 am on July 30, 2012 Permalink | Reply

      Here are notes from the Monday afternoon discussion led by Erik:

      Erik is trying to provide data for the questions at intersection of faith and disability.
      1. How do we identify and support what matters most about young people with disabilities. How do we ask questions that will allow person with full and rich life. When you ask those questions, you inevitable year about faith and friendship. We do not fit people into programs, but we
      develop supports around people.
      2 How do we support families well?

      3. What does it look like to do these well?

      4.What does it take to mobilize congregational leaders to action?

      Congregation-wide disability awareness efforts – 76% of parents said this would be helpful. Top area of interest. For the population we surveyed, the physical barriers may not be the biggest.
      Stares not stairs.
      Group homes are notoriously short staffed. Transportation is biggest deficit. People want to come to our events, but Sunday events fall apart for lack of transportation. Even if you have well-meaning church members, can be barriers – requirements for background check. Have to jump through hoops.
      These were young people, mostly able-bodied. Transportation still an issue for 1/4 families.
      Someone coming to the home picking up the siblings. Helping them get to church. Helped get them in the car, took into Sunday school. Single mom with 3 kids, one with a disability.

      I was surprised that only 6 percent of churches were doing this well. (disability awareness). We started a disability awareness committee in church. Leadership of the church were most influential in providing education and awareness. We made some good progress at educating people. But dynamic occurred that people routed all their problems to disability committee. We phased out the committee so each aspect of church would take responsibility for inclusion. We have brought the larger disability community into the church. Disability community Open Mike – 100 people with disabilities come to share thoughts, writings, poetry, dance, etc. I was disappointed that few from congregation came. The marketing is hard. Congregation thinks it would be depressing.

      Steve: Moving beyond informational awareness. We instruct our consultants to focus on life-transformational presentations. WE are not just reaching the mind, but reaching the heart. Storytelling, testimonies, and the positives from people with disabilities and parents. Emphasis on positive. Accenting the capacities of a congregation, not the deficits.

      Creating a culture of inclusion. We had triplets with autism in congregation. We needed to do something. Presbyterian denomination has disability awareness Sunday. We compile a resource packet for congregations. Our church has a disability awareness Sunday. We do have a welcoming inclusive congregation. But new people need to still see this is a concern. Talk about our language. We started to partner with group homes, network of homes. One of young men joined the church. He is a master greeter. ” My job is to ruin your bad day”. We have once a month Rejoicing Spirits. Gets people in the door. It is a way of educating our congregation.

      Our pastors speak from the pulpit. People don’t stare at someone’s unusual behavior. There is something mentioned in the bulletin pretty continuously.

      Jenny: I did a survey of congregational leaders:
      Felt they were welcoming. Felt congregations were inclusive and had adequate programs. Most did not support people with disabilities separate worship service.
      Did not receive training about disabilities in training. Not sure about denomination resources. Most had not used any denominational resources. Agreed that religious training about inclusion would benefit congregation — 97 %. Recognized problem of transportation. I was surprised so many churches did not know if denomination provided resources.

      Clergy had little knowledge of disability services and little training.

      A church did not want to do an information presentation. Decided to host an annual arts show, done by people with disabilities in their congregation and beyond. Art was in congregation. People viewed art as part of service. Artist talked about art. Later-Dialogue about what are we doing well, what could we do better.

      Time for people with disabilities and families to tell their stories. Let the person with a disability speak from him/herself unless they are completely unable to do so. People with physical disabilities, mental health disabilities, need opportunity to tell who they are. “My church keeps thinking my husband is my caretaker” – yes he does take good care of me and I take good care of him too.

      Extravagant welcome – happens if top person says it is our ethos. I am counting not on a volunteer who signs up, I am counting on a friend.
      We have had special needs weekends – I did not want it to be disability on parade – it was the one time a year to showcase the strengths of people with disabilities. Must really empower families.

      High school reunion effect – they have shared history, but people are shuffled around. Friendship is shelved – disability awareness events are opportunities for people to bring people together.

      57 percent of youth had never participated in sacraments. – large percentage.

      Many of you have been involved in disability awareness on org level? What are smaller, subtle benefits as you do that work?
      Conversion. Everyone wants conversion for people of God. As people with disabilities are involved in life of faith communities, Spirit will move. Supporting families and encourage them to make needs known. It takes a lot of courage, raising awareness.

      Janice Duvall: We are 22 years after ADA – Church was not part of that movement. What made the civil rights movement was the fact that it was born out of the church. The Church was ABSENT largely from disability rights movement. We don’t have a Dr. King to put our message forth. Society has to do a work. We must do work I get frustrated. We did not do a work that now we have to do. Church can have great impact on getting that message forward.

      Churches: What all have you done to advocate for justice? I challenge them to stop complaining about Springfield, and take action.

      More we can do to bridge disability svc system with faith community. Many in social service world are uncomfortable talking about faith. With disability open mic we have been having, brought some people into church for first time in years. First time of welcome in a church. Our church worked with org called Erasing the Distance, a theater company. Performs the stories of members. Started a dialogue with congregation. We did customized show from stories of people from within congregation. Lead minister shared her story.

      We can listen someone into existence. Power of listening to stories.

      Erik Carter: We bridged these themes at my Wisconsin church – declared that we were a welcoming congregation, but many people were skeptical. We found that 1 out of 3 families had left congregations for lack of welcome. When a family expressed an interest in congregation, someone would invite parent out for coffee. We sat down and heard their story. Learn more about the family and their child. Ask, what would it look like if we were going to make worship day best day of the week. Our job was to go back to commissions, teachers, etc., to try to bring some of these things into being. We would always conclude, “We are going to mess this up, but we’re going to give it our best.”

      We don’t have to know everything, just know how to connect families to resources. A resource center in congregation in a congregation can provide information.

      Erik: So many inclusive ministries for elementary school. More difficult for folks in middle and high school. Then as adults, it falls off to nothing. Great needs there. Don’t see a lot of congregations making an effort for adults. Seniors with developmental disabilities live in all of our communities.

      Sustainability: (Steve) – monthly or periodic bible study model. May be non-inclusive but something a congregation can do. Music, talents of congregation. A variety of people can participate. Respite is a key area to focus on. To offer respite, must ask how to sustain. I don’t have a lot of wisdom. Hoping to help congregations share best practices.

      There are few stories out there of how a congregation moved from here to there. How do we identify congregations that are doing well. If program is dependent on one person, program goes away when person leaves or gets burned out.
      Ryan: parish I was in was doing bible study, more than that. Those who pioneered it had a personal connection with these individuals. A Catholic church in a small town. One person got chauffeur license to be able to pick up people in bus. Allowed individuals to form community. Found belonging in that community. I would see them come to Mass on weekends. Special Olympics. 30 individuals with disabilities, with facilitating role played by volunteers from congregation.

      Erik: in schools, when things are set up as stand-alone program for people with disabilities, they program comes and goes, depending on leaders. When program is inclusive, that all in school are encountering people with disabilities, becomes more self-sustaining. If embedded in what everyone does, people are known, it is people you know, easier to get volunteers. Peers are not the ones who question whether we should include. It is the adults who struggle it rather than the kids.

      The next generations are going to be more comfortable with this.

      I see a lot of people who are hurting at church. I see people who are scared if they are going to miss mass. I see a lot of stressed people in church. Ambivalence – people who need an hour for ME. Need to get away. The people who are still in church, indicative that they have a lot of stress in their own lives.

      Let us focus on how we welcome well, then these are the same whether or not person has a disability. People with disabilities are made to feel like we are so needy. We are not helpless. Lady saw I came in taxi – offered a ride. Made to feel helpless, that they can’t take care of themselves.

      Question – ask what makes your child shine. Here are the gifts the child has to bring.

      Website Missouri Family
      Success in telling your story webinar story development worksheet. Can help a family tell story in a positive way. http://www.mofamilytofamily.org

      Scale of positive psychology: looks at what helps people thrive. Ask parents to say if this is really like your child. When we interview we will ask to expand on this.

      My field is very deficit minded. Looking at remediation. We wanted to abandon some of our label. Call someone – “profoundly happy.”

      ncpd.org has good mental health resources.

    • Christopher Phillips 12:14 pm on August 6, 2012 Permalink | Reply

    • Rev. lloyd blevins 11:19 pm on August 31, 2012 Permalink | Reply

      my name is Reverend Lloyd Blevins I am Baptist. I have a physical disability and I feel called to the pastorate I’m also in an adjunct professor at a Bible college in North Carolina, this form of ministry employment have been able to find. I’m unsure of God is calling me to souly work with disabilities. I was wondering if they were any assistance are pastors in my situation finding employment. I’ve yet to find a Christian organization that is willing to advocate for pastors who just happen to have a disability. I was also wondering if there were any internships available Christian groups that stress inclusiveness in Christian congregation? You may contact lloydblev3@gmail .com

  • theologyanddisability 8:15 pm on July 6, 2012 Permalink | Reply  

    Theology and Chronic Pain 

    Featured Speaker:

    Deborah Creamer, Ph.D.

     
    • Debbie Creamer 10:31 am on July 16, 2012 Permalink | Reply

      Here is a link to the text of my presentation from today: https://docs.google.com/open?id=0Bxngvdo3DaYWZE9UbmktaUI1UTA

      • David Morstad 2:32 pm on July 16, 2012 Permalink | Reply

        Thank you for posting your paper, Debbie. The concept of a God who feels pain brings such depth to the discussion of relationship.

      • Rev. Bill Gaventa 11:50 am on July 22, 2012 Permalink | Reply

        Notes on Monday Plenary by Deborah Creamer
        Limits are not deficit, but part of ordinary creation. I have been looking at issues related to pain, and chronic pain.
        Pain, in a medical view, needs to be fixed. How we treat pain is the question? Pain is messy, not tidy work of the body. Chaotic, messy.
        People dealing with chronic pain (as she has) are very tired of having others telling them how sorry they are, or how they are a hero, or that God won’t give them more than they can bear. Or that it will all be fixed in the life to come. And they very rarely offer something apart from this shallow theology. People don’t feel the same about the lottery. That God chose them, they know it is chance. Why explain pain differently?
        It is also very hard to talk about the shame around pain. Chronic pain cannot be seen, I have to trust my own body and what it is telling me. But in the health system, people are told to trust doctors’ views more than their own.
        Pain as sign of “service the engine soon.”
        Pain shatters language.
        Pain management is both science and art
        The social model of disability does not address pain, because it focuses the difficulties of the environment on environment and attitudes
        We will all experience more pain the longer we live. It is very hard to separate emotional and physical pain. We really do not want a life without pain, because it is also an indicator that something really maters, something is important, and sometimes necessary for some of the greatest miracles of life, e.g., childbirth.
        Rather, I want a God who feels pain, not just observes it. A God who imagines it, chronic pain. And, of course, all the major figures in the Bible know the world through pain. Just as pain cannot be fully articulated, neither can God. I want to be in a body that feels pain, that makes me pay attention. Pain may be sacred, not in the self harming way that some religions use, because it remakes us, transgresses space and time, and refuses to let itself be romanticized.
        Thus, is our theology of disability seen as deficit or defeat or contrary to God’s plan. Is pain wrong? Something to fix. Or is it a source of knowledge, about the design of life itself, something to be lived fully into, dived into, to learn from what pain may be telling and teaching us.

    • Debbie Creamer 9:19 pm on July 16, 2012 Permalink | Reply

      Here’s a different link (to the same paper), for those of you without google accounts:
      http://journey-questions.blogspot.com/2012/07/theology-and-chronic-pain.html

  • theologyanddisability 8:15 pm on July 6, 2012 Permalink | Reply  

    Theology and Dementia 

    Featured Speaker:

    John Swinton, Ph.D.

     
    • Christopher Phillips 11:42 am on July 16, 2012 Permalink | Reply

      There is a great post from John on his presentation posted at http://bethesdablog.wordpress.com/2012/07/05/what-does-it-look-like-to-be-remembered-by-god/

    • Rev. Elizabeth "Betty" McManus 9:36 am on July 20, 2012 Permalink | Reply

      Loved your blog on the Bethesda site. I’m so pleased to have met you!

    • Rev. Bill Gaventa 11:52 am on July 22, 2012 Permalink | Reply

      Notes on Monday plenary by John Swinton on dementia.
      The question in dementia is “Who will hold my soul?” Do you remain yourself or does it destroy you. How do you describe yourself? Your personhood? When you have forgotten who you are.
      Shared story of man called Peter with dementia. His wife was told by professionals that “you should just divorce him.” Or that “it was time for the blue pill,” ie assisted suicide. The implication of most perceptions about dementia is that you are better off dead. It is the most feared condition of older age.
      What does it mean to be “yourself?” The more I think about who I am, the more confused I get.
      Noted an author Steve ____, three levels of self:
      1. Our consciousness about being a person
      2. Our physical and mental attributes
      3. Our social self, which we need others to construct, to belong to community.
      Umbutu phrase: I am because we are.
      The dissolution of self thus involves a dissolution of community, revealing deep flaws in community when the community takes away someone’s self. Self 2 gets taken away in dementia. Self 3 becomes impossible. Is that a fault of the community? Can they still love who you are?
      Read Psalm 88, almost a perfect description of Alzheimer’s, a land of forgetfulness.
      They have forgotten, they have been forgotten. Bonhoeffer question, shaped by his early work as pastor in a town (Bethesda) where there were many institutions for people with disabilities, was “Who am I?” We forget more than we remember in our lives. I don’t know who I am, and never did. The one who knows is God.
      We are contingent. God tells people who they are in the Old Testament. OT figures are not “searching for themselves.” We are contingent creatures.
      Bonhoeffer notes we are creatures and persons, and that can change from moment to moment, as in epilepsy. Healthy one minute, very fragile the next. Change and decay is part of human life.
      Re-member: We are who God remembers us to be. We need to remember whose we are.
      To be disciple then means to remember others well. To be human is to be remembered well. Both a source of hope and of revelation.
      (presentation based on parts of a new book by John Swinton coming out from Eerdman’s Publishing. )

    • Christopher Phillips 5:49 pm on July 23, 2012 Permalink | Reply

  • theologyanddisability 8:14 pm on July 6, 2012 Permalink | Reply  

    Recovering Care in Theologies of Disability 

    Featured Speaker:

    Tom Reynolds, Ph.D.

     
    • Rev. Elizabeth "Betty" McManus 9:43 am on July 20, 2012 Permalink | Reply

      I have so enjoyed playing music with you and I look forward to listening to your CD on my drive back to Milwaukee. I will experience a sense of loss after a week of sharing a musical spirituality with you, Neil, and Brian. Thank you for the gift of belonging. God’s peace.

    • Bill Gaventa 3:41 pm on July 20, 2012 Permalink | Reply

      Thanks to Tom for the rough draft of his presentation, below.

      Recovering Care: Thoughts Toward a Practical Theology of Disability
      Thomas E. Reynolds
      Emmanuel College, Toronto
      (THIS IS A VERY ROUGH DRAFT—used to speak from for the Theology and Disability Institute, July 2012, Chicago. It is not very polished and so is not for publishing)

      We have gifts that differ according to the grace given to us. —ROMANS 12:6

      In journeying with my son, Chris, who is diagnosed with Asperger’s Syndrome, inclusion has been a buzz word. And it is commonly held up as an ideal by and for people with disabilities. However, in my experience, there are ways it can be problematic. I won’t detail those here because I’ve written on this elsewhere, and so instead want to press further. Let me begin with this: A community’s effort to include people with disabilities only succeeds if (1) there is an invitation, (2) there is access, and (3) there is welcome. This sounds trite and simplistic. But how often is this missed? Inclusion depends upon being noticed and invited, upon accessibility and upon welcoming hospitality. What I’d like us to notice today is how half-hearted these can be if not grounded intentionally in caring practices and values. Inclusion and access and hospitality are not one-time achievements, neither the first step nor the last step toward right relations with people with disabilities, but rather are parts of an ongoing—and never completed—process aimed at the full participation of all in sharing life together. They presume first that a community has registered there is need, that it is incomplete and missing something. And this itself presumes attentiveness and openness to people, a responsiveness that doesn’t merely “allow for” participation but actively invites and empowers it in relationships of mutual giving and receiving. Inclusion, invitation, access, and hospitality are features of caring communities. These kinds of communities exhibit a form of togetherness within which people bear witness to one another with caring regard. There is genuine sharing in life together. And more, there is fulsome belonging, a much richer word for me than “inclusion” because we become parts of one another.

      To think about care, I want to argue, somewhat counter-intuitively, that the famous aphorism of pre-Socratic philosopher, Empedocles, is accurate—that “like attracts like.” It seems counter-intuitive because a preoccupation with its own ‘likeness’ is precisely what leads a community to exclude others who are ‘different’ in so many cases. The insidious ‘we’ of group identity looms large in matter of disability. We tend to accept and care for those somehow like us, relating most comfortably with those with whom we share something, drawing together around that common flame.

      But what if ‘like’ can be reconsidered beyond horizons of sameness, beyond assimilating to become ‘like us’ or mainstreamed to function ‘normally’, or even ‘included’ through benevolent gestures of ‘granting’ space for those ‘weaker’ members, those ‘others’? What if ‘like’ comes not from what we ‘are’—as something defined and given in advance—but from divine love, which rises and refreshes itself in relationships as a grace received, a communion that is not an ‘identity’ of sameness but a web of togetherness and connection created in the sharing of differences as gifts?

      In my own journey, I have come to believe it is not possible even to begin imagining what this means without reconsidering the moral postures and practices that make fruitful life together possible. The term care seems appropriate, on many levels and in many registers, to speak of gift giving and receiving. I appreciate the work done by Nel Noddings and Virginia Held, among others, who seek in feminist terms to imagine an “ethics of care”. This has opened me to imagine wider ways of thinking about my relationship with my son, Chris, who is diagnosed with Asperger Syndrome. And in fact it has made me painfully aware of how often care is distorted and malformed, both in my own actions and within the caring communities around me, particularly the Church.

      So I wish to ‘recover’ care as an essential way of being human together, and more, as part of what it means to be a vulnerable communion called Church, the Body of Christ. To be a caring community is to be an emblem of God’s love in the world, giving and receiving as a people invested in each other as gifts of God. This is Incarnational: it embodies divine care.

      But recovering care first requires clearing a lot of ground. For the word has been used in ways that flatten or even distort a more textured meaning. A good start would be to unpack the negative side first, that is, what its absence means. If someone is “careless” they are not paying attention or not heeding directions. If someone is says “without a care” they may mean “without worry or concern”. Or if someone says “I couldn’t care less” they might mean “it doesn’t matter or is insignificant.” The absence of care is generally seen in terms of being insensitive or acting indifferent, as if one is not invested in something or someone. Looking at it from the negative side helps us a little, but it’s not enough to say what something “is not.”

      Even so, let me continue by highlighting a few common meanings of care that we should want to distance ourselves from here. Care, as I mean it here, is not just what “experts” or professionals do (providing a service), nor is it even reducible to what in often thought to happen in the many kinds of care-giving roles we find ourselves in throughout our lives, where we “take care of” another, like infants or elderly parents, or like I do with my son, Chris, by providing for them. Care is not merely administering or managing some form of beneficial assistance to another, a commodifiable activity. Neither is it an “industry”—as a care industry (e.g., customer care). Care is too easily reduced to an interest-driven economy of exchange if we think of it in these ways, as if care is a “doing for”, a technique, a technology, to master in order to produce a desired benefit for someone or some group (in which the care-giver stays in control and is not open or vulnerable to another). A similar dynamic occurs in other less calculative instances, and perhaps even with the best of intentions. Here, care can condescend as benevolent paternalism, a “charity” handed out from a distance, from a non-reflexive and detached privilege that can mask self-preoccupation and unjust power relations. More, care can be shallow when it is pity or it pretends to “know better” for another or strategically seeks to implement an agenda occupied more with serving self or the status quo than the good of another. All of these instances in themselves may not do ill or harm, and in fact may do genuine good; but they do show how care can be distorted, and even malformed. Something is missing when care becomes (1) a “doing for” (a service) and/or (2) a “know how” (a technique or technology—from the Greek, techne). Why? Because reciprocity is denied. In the fullest sense, care is a phronesis, the lived wisdom flowering from interdependent relationships of giving and receiving.

      Fundamentally, then, care is something inherent in the way we find ourselves among others. There is care in all kinds of relationships (such among family, friends, colleagues, lovers, etc.); it is defined by range of social domains (in institutions, communities, small group, face-to-face, and for oneself, as well); and it active in various modes (as supervisor, employee, daughter, student, spouse, counselor, pastor, etc.), the natures of which shift and change from context to context, conditioned by social and cultural frames of reference.

      Throughout each level and register, however, there exists a basic pattern of care as both a practice and value. As a practice, “care” is an action or gesture oriented toward the well-being of persons. This is usually what we mean by “caring for” others or oneself. There is an expenditure of energy for the benefit of someone or some group, providing something that is considered good by the ones cared for (or by a relevant advocate). This is important, for it implies a relational correlation that depends upon a connection of trust between parties. Issues of justice and equity, then, are intrinsic to care. In fact, care assumes the establishment of a covenantal relation. The act of caring is then never merely one-way. There is an exchange, which can be exploitative and unjust if the creaturely personhood of another is overlooked or mistreated. This is why care also involves value.

      Care is not merely a practice; it is also a moral posture and value, indexed by attentiveness and responsiveness to others, issuing in a concern for their good. It is compassionate solidarity. To care is to desire and be personally invested in another within what Martin Buber calls a “dialogical situation”—not that literal ‘dialogue’ is necessity, but that a communication of presence is at play. This involves sharing space in some way—through body gestures, touch, listening, speaking, etc.—so that a connective reciprocity emerges. As both practice and value, care is so much more than a “doing for”. It is, most profoundly, a “being with” that rises in connections of giving and receiving, of mutual vulnerability. Indeed, we only respond with care by first having received the presence of another, having been summoned into attentiveness and concern through a kind of call that enlivens response-ability. We come to “take care”…

      I want now to build upon this description and speak of recovering care as a way of being open to difference in form of disability—that is, more readily disposed to engage in relations of mutual welcoming and ongoing accommodation. But we must be “care-full” when we speak about care and engage in caring relations with persons with disabilities. First, non-reciprocal modes of care as charity and/or service should be challenged. Second, we must move beyond inclusion and move toward collaboration and interdependence. Part of this means moving beyond a discourse of what we “owe” each other by right, as a minimalist way of relating to insure justice as sameness—i.e., equality before the law. Equality can lump all together in a way that denies the diversity of disability experience. Thus, finally, it means paying attention to that which is different, bearing witness and receiving its provocation as an invocation to care. It is within connections of care—shaped by the dynamic interdependencies of offering and receiving gifts of presence—that trust and covenantal commitments to an ongoing togetherness are fostered. But such togetherness is not possible without difference.

      So rather than focus on what about people with disabilities ‘deserves’ inclusion as a quality of likeness or sameness shared by non-disabled and disabled persons alike—i.e., a fundamental humanity, imago Dei, personhood, etc.—I want to focus on difference as something that interrupts sameness, that provokes and disturbs. At the outset, this may seem an odd choice, and certainly I don’t mean to deny the importance of imago Dei and personhood; but my hope is that taking a different tack bears fruit, in fact, fruit that bears the Spirit (Gal. 5:22).

      Indeed, the togetherness of church, as the body of Christ, is a gift of the Spirit that trades upon bearing witness to differences, and in fact holds differences as gifts of grace. But, as in the earliest Christian communities knew, such grace is not an achievement but a discovery, and it comes through the practice of opening thresholds provoked into conversion, into transformation, through an invocation or calling. Invocation into what? My reading of the New Testament is that we are called into a “vulnerable communion,” summoned to be a church not ordered by human achievements of inclusion measured according to standards meted out by normalcy, but as a gift received, an after-effect of welcoming differences in caring relations as God loves the world. Our differences provoke us into recognizing not-sameness, and invoke response. Provocation is an invocation, an invitation into a relational liturgy of mutual care, a koinania fellowship outlining the shape of God’s presence. We only have to look at Jesus’ ministry in the Gospels and Paul’s theology of reconciliation to find ample support for this point.

      The grace I’m talking about here is an opening to God discovered when our preoccupation with control stops, when our efforts to manage or manufacture it become stilled. In fact, as many biblical stories of hospitality attest, divine presence and blessing comes as a surprise in welcoming others, loving one’s neighbor, indeed, welcoming the stranger as one’s neighbor. Differences may become “like”—close, as neighbors—in the spirit of open welcome.

      In his article on autism, care, and Christian hope, Brian Brock explores Jesus’ parable of the Good Samaritan (Lk 10:29–37) to suggest that Jesus’ interlocutor asks the wrong question by asking “Who is my neighbor?” which is a question of defining other humans and putting them into acceptable categories of “likeness”. Instead, Brock notes that Jesus inverts the inquiry to emphasize a focus on the perceiving and acting agent: “To whom have you been a neighbor?” This insinuates that we ought not expect Christian thinking about care to be oriented to or defined by a theological anthropology, an inquiry that easily tips into the register of defining who qualifies as a neighbor (and who does not). Christian anthropology ought, rather, to engender an emphasis on the character of an agent’s action in the present. He quotes Paul Ramsey to make the point: “Christian love does not mean discovering the essentially human underneath differences; it means detecting the neighbor underneath friendliness or hostility or any other qualities in which the agent takes special interest,” including, we might add, disability—my son, Chris, with autism.

      I am convinced that such love of neighbor, as hospitality, does not survive without the moral openness of care. Care attends to difference. Rooted in God’s incarnate attentiveness to humanity in Christ, churches can become transformed into caring communities that receive people with disabilities with love and respect, opened to unanticipated gifts. This is not to say that disability itself is a gift, rather that it is neither a deficit or lack nor did it exhaust all that a person is (as defined by normalcy); disability provokes and unsettles the low-expectations of communities. All people are gifts and have gifts. And communities often overlook this crucial point in people with disabilities because of their negative attention to what is perceived as a bodily flaw or deficit in need of remediation or “special” treatment tantamount to exclusion. If ignoring the giftedness and gifts of all, the community itself suffers from a deficit: carelessness. The community is disabled. Care’s attentiveness is wider than that of normalcy. It has a wide aperture, letting the Spirit in. I have learned this from my life with Chris. The aperture on my attentiveness has been widened. My son’s life calls out to me, “pay attention not to your way, but mine, and be with me.” The life in him confronts me outsides the boundaries of my expectations and ushers me into a relationship that I can’t control on my own terms but which has opened me up to new horizons of understanding, reshaping my perspective.

      Genuine care is about risking enough to receive the gift of another’s presence. It comes from attunement to another’s rhythm and cadences—that is to say, it is not about “my way,” but yours. This entails a hermeneutic readjustment, an attentiveness that bears witness to another in the shape of a vulnerable responsiveness. It is from such responsiveness that accommodation to difference moves beyond assimilation and becomes expansive and transformative. I am changed, the community is changed, by adjusting its way of being to another’s way of being. The story of a “we” shifts by attending to and entering the stories of persons with disabilities. Certainly the process requires humility and perhaps patience. Sometimes it involves deep disorientation and struggle, even anguish, as my own life as a parent testifies to. But it also cultivates, perhaps because of these, relationships of friendship and mutuality and care that are life changing and grace-filled. Such relation is a liturgy of love, a ritual welcoming of God amidst us in the lives of one another.

      If faith communities are about forming Christian care givers/receivers who reflect God’s compassionate and inclusive attentiveness, we need a radically different set of criteria to think about care than presently exists. We need communities cultivated by more than generous intentions and right beliefs. People of faith need apprenticeship into habits of care formed with people with disabilities and mental illnesses, habits that cultivate mutual partnerships of vulnerability open to the transformative power of God’s grace together. And such grace often surprises and disrupts on the way toward transformation, coming unexpected and in ways that are uncomfortable, dislodging the sway of what we might expect according to the standards of normalcy. Care risks exposure to something that calls “us” into question, undoing what has been taken for granted about “us”, in opening up something more than “we” were before. What would our faith communities look like within the arc of such care? In the end, “we” are all church, the Body of Christ with many gifts, each in fragile earthen vessels making present God’s loving solidarity with the world.

      I want to conclude by making several points about how our fragile earthen vessel “make present” God’s loving solidarity. First, it is the creaturely gift of life that takes priority. Life seeks life, and in different ways. The preciousness of another’s humanity is not limited to abilities or disabilities. It radiates its own beauty and intrinsic worth—in smiles, laughter, gestures, and even words, sometimes—as loved by God and as a gift of God. The presence of a human being is a reservoir of abundance exceeding ways we might attribute suffering, inability, or abnormality to it.

      So, second, our response (our response-ability) to this preciousness is to honor and respect—creating space for its own ways of flourishing (not based on predetermined ways) and giving (not based on what is pre-calculated as worthy of value…). This means risk, being vulnerable to another’s vulnerable life. Risking relationship to another requires opening to another’s way of being that challenges and changes me, that confronts me with my own inadequacy, and that even causes anguish. But it also allows me to receive the giftedness and gifts of another person.

      Receiving others via such attentiveness is, as Letty Russell would say, the practice of hospitality at its best. There is no inside/outside binary, but rather a roundtable gathering into which each guest is invited as hosts to one another, joined in relationships of mutual partnership and giving and receiving rather than dependency relationships of unilateral caring giving. An attentive practice listens and receives, letting-be the speaking voice of another and hearing how she or he perceives. In this way, the margins and the center, the guest and host, each circulates and shifts among the other, distinctions blurred. The listener comes to confront the biases, false assumptions, and unequal power quotients that obscure encountering the difference of another. Furthermore, the listener responds, adjusting to the way of another by entering into their story. And the speaking voice grows into itself and gains dignity by being heard and accommodated. The dynamic shifts, then, as each trades roles and becomes an other for and with the other in an ongoing exchange of mutual welcome. Communities of genuine partnership are built upon this transformational process. And these partnerships also entail a commitment to justice work –confronting enduring systems of power on micro and communal levels, because vulnerability is often not parceled out equally within such “ongoing exchanges of mutual welcome”.

      What is spiritual about this kind of attentiveness is that it welcomes others as loved by God, and indeed, as a way of loving God. Love of God and love of neighbor, the stranger, are twin elements wrapped in one dynamic. I’ll go further, and perhaps be more radical: Attentiveness to others in relationships of mutual care is attentiveness to God, a spiritual act. Put differently, conversion to one another is conversion to God. It is a divine liturgy of love.

      This all may sound a bit too extravagant and impractical. But let me point out that care in the shape of a spirituality of attentiveness can happen in ordinary and seemingly mundane ways in faith communities. For example, doing a “needs assessment” and community profile can be a way of listening and learning how to be response-able as a community, valuing differences by inviting the telling of stories, and subsequently discerning the needs and gifts of participants. This might mean forming “talking circles” or doing “interviews”. Analyzing resources available in the community and negotiating their allocation can be another way to practice attentiveness. Coordinating action to care for/with people, then, enacts response-ability. And the process cycles back to begin again, again and again, each step enlivening the community’s sense of itself as an ever-wider “us”. Perhaps this necessitates policy changes and redirection of mission. The key in it all, however, is a dynamic reciprocity of giving and receiving among all participants, so that inclusion—as invitation to, access for, and welcome by all—is enacted by all in matrixes of caring relationships. In my vision, this is an astonishing way our churches might actively anticipate the kingdom of God, that future time in which all will join together most fulsomely in God’s loving embrace.

    • Christopher Phillips 8:22 am on July 23, 2012 Permalink | Reply

      I’m not sure how helpful these are now that Tom has shared his notes above, but here are a few thoughts I gathered from Tom’s presentation:

      Tom has a son named Chris who is on the autism spectrum (Asperger’s syndrome).

      In his journey with Chris, inclusion is a buzzword that often leads to dead ends and frustration.

      Inclusion depends on hospitality and welcome, which can be half-hearted. What we need instead are intentional practices of care and remembering each other..

      To listen with the ears of God and to be a caring community-

      Care is often reduced to ‘exchanges’, it needs to be an action aimed at the well-being of another.

      Care is not just feelings, it is both a practice and a moral perspective.

      Careful about using the word “deserve” it can be rife with problems.

  • theologyanddisability 8:14 pm on July 6, 2012 Permalink | Reply  

    The Black Church, the Disability Rights Movement, and a Liberating Theology of Disability 

    Featured Speaker:

    Rev. Russell Ewell

     
  • theologyanddisability 8:14 pm on July 6, 2012 Permalink | Reply  

    Special Needs in Hebrew Scripture and Jewish Sacred Writings 

    Featured Speaker:

    Rabbi Dr. Bradley Shavit Artson

     
    • Bill Gaventa 9:58 am on July 19, 2012 Permalink | Reply

      NRabbi Artson:
      Introduction to Torah and Scripture.
      Leviticus…You cannot revere God if you are insulting the deaf. You cannot fashion a world where people are unsafe. “Revere” is the word “fear.” God is not the buddy who forgives your shortcomings while judging your enemies.
      Isaiah 35: 5-6
      At the coming redemption, everyone will be participate. But subversive, is universality equal to uniformity. Can’t imagine world in which people are who they are. Have to celebrate the vision and the text but recognize it is also oppressive.
      Jeremiah 31: 8-9
      Jeremiah gets it. We can level the roads, so that no one stumbles. God does that because God is our parent.
      Micah 4: 6-7
      In the great day of ingathering, none will be left. Out. They will be at the very center. Continuous with Jesus’s obsession with who is left out? Who is not there? With all their differences.
      Zephaniah 3: 19-20: None of us will leave this earth without “special needs.” No such thing as special needs, human needs, it is just how you get those needs accommodated.
      Jerusalem Talmud Pe’ah 8-9
      Blind man put at head of table, being the blesser. Recurrent theme, those who are often seen as recipients of blessings, become the blessers.
      Metzora: skin disease. Job of priest is regularize someone with a medical condition back into the community. Purification was to put blood behind ear and thumb. Etc. Rabbi then says that cannot be God’s intention. We do that all the time, look for the purpose, e.g., purpose of marriage. We can be who we are, and how then included with that difference.
      Deaf mute: First held, those who cannot speak could not learn. Rebbe, head rabbi, allowed two guys who could not hear. It is found they have been following everything.
      IEP, way for bureaucrats to torture innocent people.
      Son Jacob had taught himself to read. Jacob now speaks around country. Written very insightful essays.
      All time favorite Talmud story: Rebbe and rabbi (personal assistant) No actual name for the blind guy. Anonymous blind guy in some nowhere place may hold the blessing you need. If you do not go find him, you may live your life without the blessing you needed to have.
      In the book meant for the powerful and ordered, people with disabilities are the anonymous people who give the blessings to the rabbi. Gospel stories exemplify rabbinic norms.
      One of the ways to render someone invisible is to smother them with pity. True accommodation, here are the standards, how can we remove the impediments. They are responsible as well. Strictness of standards.
      Story with the demon who knows what is right, what God knows, what will bring comfort, give him chance at eternal life. Demon helped the blind guy because he would merit the world to come. Talmudic stories that just explode normal assumptions.
      One way world turns different people invisible is by turning people into oracles. We often treat people unfit or blemished. We do that with sheep, etc., but not for human beings.
      Poem, challenge is not to be defined by what you cannot do, but celebrate what you can.
      Living God poem
      Blessing by Judith Glass
      Way you become clergy now, is talent, merit, study. Call. Leviticus, it was by inheritance. Traditions do not practice what it says, changes over time. I am in no big rush to start sacrifices again. Nor rebuild temple. What does the ideal of a perfect religious leader imply?
      Pity is not the worst sin. Word most often translated as pity is compassion. Arabic, compassionate one. God, the “womb-like one” Ability to see me as your child. We are faced with an onslaught on nudnics. Cloying, annoying people…surround you. If I was this person’s dad, what would I notice? Don’t look down on me, as case, but see me as a parent would. Greatest commandment, follow them, you are a good Torah Jew. If you can truly see your neighbor as your self, you can see the divine.
      Thank you for challenging us to challenge our texts. Only fair, they challenge us all the time.
      I am too old to worry about sexual orientation…I just want a nap.
      Central metaphor of both sections of the Bible is a God who enters into relationship and you cannot enter into a relationship without change. “This time I know it wasn’t my fault
      Perfect: God is eternally self-surpassing. We are called to do the same. The thing that used to be a limit can be surpassed. If God can, so can we. God never says creation is perfect, it is “awesome good.” We are invited to be really good, but perfect is the enemy of the good.
      The easy OT talk: disabilities of the leaders. Moses would been shocked to receive handicapped parking stickers. Mephiboseth…greatness of character. I am motivated by more than wealth. Not born with special needs, imposed on him. David says he needs hesed elohim. Hesed is one of the words for love. Hesed is love that becomes manifest in action. If not showing the love, you are not doing hesed. I wanted your “hesed” and not your sacrifice. David says Mephiboseth deserves God’s hesed. What do you need me to do to make a world in which your humanity is clear.
      otes taken during Rabbi Artson’s plenary presentation:

  • theologyanddisability 8:13 pm on July 6, 2012 Permalink | Reply  

    Access and Inclusion: The Biblical Vision 

    Featured Speaker:

    Fr. Donald Senior, C.P.

     
    • David Morstad 9:25 am on July 17, 2012 Permalink | Reply

      I was struck by the imagery presented. Access and inclusion. Reaching out and drawing in. Breathing out and breathing in – what a marvelous metaphor for the life of the church in the world. Thank you Father Don.

      • Bill Gaventa 3:49 pm on July 20, 2012 Permalink | Reply

        Fr. Senior could not be present for an afternoon discussion group. Below is the handout shared by Dr.Candida Moss, Notre Dame, who came to lead the discussion group.New Testament Studies and Disability
        Candida R. Moss
        University of Notre Dame

        Approaches to Disability in NT Scholarship

        1. Diagnostic
        Demonic Possession and Epilepsy
        2. Theological 1- Soteriology
        Relationship between Sin and Disability
        Metaphors of Healing – Jesus the Physician
        3. Theological 2 – Analogical
        Outsiders, Aliens, Sinners
        4. Functional / Historically Diagnostic

        (A) Matt. 13:15-16

        For this people’s heart has grown dull,
        and their ears are hard of hearing,
        and they have shut their eyes;
        so that they might not look with their eyes,
        and listen with their ears,
        and understand with their heart and turn—
        and I would heal them.’
        But blessed are your eyes, for they see, and your ears, for they hear.

        (B) Mark 5:25-33

        Now there was a woman who had been suffering from hemorrhages for twelve years. She had endured much under many physicians, and had spent all that she had; and she was no better, but rather grew worse. She had heard about Jesus, and came up behind him in the crowd and touched his cloak, for she said, “If I but touch his clothes, I will be made well.” Immediately her hemorrhage stopped; and she felt in her body that she was healed of her disease. Immediately aware that power had gone forth from him, Jesus turned about in the crowd and said, “Who touched my clothes?” And his disciples said to him, “You see the crowd pressing in on you; how can you say, ‘Who touched me?’” He looked all around to see who had done it. But the woman, knowing what had happened to her, came in fear and trembling, fell down before him, and told him the whole truth. He said to her, “Daughter, your faith has made you well; go in peace, and be healed of your disease.”

        (C) John 9:1-11

        As he walked along, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “Neither this man nor his parents sinned; he was born blind so that God’s works might be revealed in him. We must work the works of him who sent me while it is day; night is coming when no one can work. As long as I am in the world, I am the light of the world.” When he had said this, he spat on the ground and made mud with the saliva and spread the mud on the man’s eyes, saying to him, “Go, wash in the pool of Siloam” (which means Sent). Then he went and washed and came back able to see. The neighbors and those who had seen him before as a beggar began to ask, “Is this not the man who used to sit and beg?” Some were saying, “It is he.” Others were saying, “No, but it is someone like him.” He kept saying, “I am the man.” But they kept asking him, “Then how were your eyes opened?” He answered, “The man called Jesus made mud, spread it on my eyes, and said to me, ‘Go to Siloam and wash.’ Then I went and washed and received my sight.” They said to him, “Where is he?” He said, “I do not know.”

        (D) 2 Cor. 12:1-10

        It is necessary to boast; nothing is to be gained by it, but I will go on to visions and revelations of the Lord. I know a person in Christ who fourteen years ago was caught up to the third heaven—whether in the body or out of the body I do not know; God knows. And I know that such a person—whether in the body or out of the body I do not know; God knows— was caught up into Paradise and heard things that are not to be told, that no mortal is permitted to repeat. On behalf of such a one I will boast, but on my own behalf I will not boast, except of my weaknesses. But if I wish to boast, I will not be a fool, for I will be speaking the truth. But I refrain from it, so that no one may think better of me than what is seen in me or heard from me, even considering the exceptional character of the revelations. Therefore, to keep me from being too elated, a thorn was given me in the flesh, a messenger of Satan to torment me, to keep me from being too elated. Three times I appealed to the Lord about this, that it would leave me, but he said to me, “My grace is sufficient for you, for power is made perfect in weakness.” So, I will boast all the more gladly of my weaknesses, so that the power of Christ may dwell in me. Therefore I am content with weaknesses, insults, hardships, persecutions, and calamities for the sake of Christ; for whenever I am weak, then I am strong.

        (E) Revelation

        Rev. 21:1-3 Then I saw a new heaven and a new earth; for the first heaven and the first earth had passed away, and the sea was no more. And I saw the holy city, the new Jerusalem, coming down out of heaven from God, prepared as a bride adorned for her husband. And I heard a loud voice from the throne saying, “See, the home of God is among mortals. He will dwell with them as their God; they will be his peoples,
        and God himself will be with them; he will wipe every tear from their eyes.
        Death will be no more; mourning and crying and pain will be no more,
        for the first things have passed away.”

        Selected Bibliography

        Avalos, Hector. Healthcare and the Rise of Christianity. Peabody, MA: Hendrickson, 1999. Here Avalos offers an alternative vision of the spread of Christianity predicated on the free healthcare that it offered to the poor.
        Avalos, Hector, Jeremy Schipper, and Sarah Melcher, eds. This Abled Body: Rethinking Disabilities in Biblical Studies. Semeia Studies 55. Leiden, The Netherlands: Brill, 2007. The first collection of essays on disability in the Bible, this volume focuses more on the Old Testament than the New.
        Capps, Donald. Jesus the Village Psychiatrist. Louisville: Westminster John Knox Press, 2008. A pastoral analysis of the gospels which argues that Jesus’ healing stories are akin to the work of modern day psychiatrists. Employs a diagnostic model.
        Kelley, Nicole. “The Deformed Child in Ancient Christianity” in Children in Ancient Christianity. Edited by Cornelia B. Horn and Robert R. Phenix. STAC 58. Mohr Siebeck: Tübingen, 2009.
        Lawrence, Louise, “Exploring the Sense-scape of the Gospel of Mark.” Journal for the Study of New Testament 33:4 (2011): 387-397. Sensory-critical analysis of Mark which argues that the focus on audition is a deliberate effort to reject imperial values.
        Moss, Candida R. “The Man with the Flow of Power: Porous Bodies in Mark 5:25-34.” Journal of Biblical Literature 129:3 (2010): 507-519. Uses ancient medical theories of disease to argue that the body of Jesus is fundamentally weak.
        ——“Heavenly Healing: Eschatological Cleansing and the Resurrection of the Dead in the Early Church.” Journal of the American Academy of Religion 79: 3 (2011) 1-27. Discusses the eradication of disability in early Christian constructions of resurrected bodies.
        ——“Blurred Vision and Ethical Confusion: The Rhetorical Function of Matt 6:22-23,” Catholic Biblical Quarterly 73:4 (2011): 757-76. Examines the rhetorical function of imagery of blindness and medical conceptions of blindness in the ancient world.
        Moss, Candida R. and Jeremy Schipper. Disability Studies and Biblical Studies. New York, NY: Palgrave MacMillan, 2011. This collection of essays is a dialogue between disability studies and feminism, queer theory, Foucault, reception history, source criticism and ancient medicine.
        Parsons, Mikeal. Body and Character in Luke and Acts: The Subversion of Physiognomy in Early Christianity. Grand Rapids: Baker Books, 2006. Uses Greek Physiognomical treatises to analyze the healing miracles in the Luke-Acts.
        Pilch, John J. “Healing in Mark: A Social Science Analysis.” Biblical Theology Bulletin 15 (1985): 142-50.
        ——“The Health Care System in Matthew: A Social Science Analysis.” Biblical Theology Bulletin 16 (1986): 102-6.
        ——“Sickness and Healing in Luke-Acts.” Pages 181-209 in Jerome H. Neyrey, editor, The Social World of Luke-Acts: A Handbook of Models for Interpretation. Peabody, MA: Hendrickson, 1991.
        Rose, Martha A. The Staff of Oedipus: Transforming Disability in Ancient Greece. Corporealities. Ann Arbor: University of Michigan Press, 2003. One of the standard treatments of diability in classical literature, Rose uses blindness as her entrée into the positive and negative connotations of disability in the ancient world.

    • Bill Gaventa 3:47 pm on July 20, 2012 Permalink | Reply

      Notes of Fr.Senior’s talk taken by Bill Gaventa

      Don Senior
      Included, something included, encased in something….
      Access leans towards perspective of person on the outside. Inclusion the vantage point of the person on the inside..
      “Dancing as fast as I can.” Woman whose life fell apart, into depression. Doctor, “You do know how to breathe in and breathe out.” Later she saw that as a turning point. Image to use for this week.
      Ministry is something like breathing, extending of life to the farthest limits, and a drawing in. Reaching out and drawing in. Breathing out and drawing in. Wide embrace and drawing in the whole community, washed and unwashed. Outreach beyond the boundaries. Drawing in. Extraordinary rapport with those on the margins. Importance of the healing stories of people on the margins. Healing was physical transformation but also the dissolving of psychological isolation. Boundary breaking nature of the healing stories in the NT. Reach across the boundaries of life and death.
      Distinction between cure and healing. Healing more profound in psychological, social justice perspective.
      Lost sheep, son, coin…radical joy over the embrace of those on the outside. In many more stories, draws people in to community, and calls community to embrace. Defended their rights to belong. Those devalued by others were capable. Saw primary mission as “restoring Israel,” but when confronted with a Gentile, he showed compassion. Community later took that on as its mission.
      Drawing In, Breathing In
      Did not come to found a church. Saw vocation as restoration. Ragtag 12, will sit on the thrones of the House of Israel. “You can eat your way through the Gospels.” Evocative of meals in dessert with manna and quail. All signs of the communion, the gathering of everyone, Isaiah 25, set a banquet for Israel.
      Mission of breathing out and breathe in would lead to his death. Crossed many boundaries. Died because of the way he lived. A transcendent God. Ground of being and foundation of his mission.
      An intuition of the mission…God embodies the mission, love surging out into creation, into the life of the people and their history, and intent is draw all creation into God’s vitality and being. Ultimate life act. Divine rhythm of life. God of Israel, but also God of the nations. Stand over against in terms of purity, at other times absorbing parts of the nations, or their use in cleansing the nation of Israel. Jonah, gets depressed when the outcast, when they repent.
      Be careful and don’t try to make people happier than they want to be. Tension between identity and community, election as special people and yet the call to the nations, the children of Abraham. Election and call to mission.

      Paul: Practiced exclusion in a violent way at the beginning. Transformed by the vision. You do to them, you do to me. Blinded by love, he sees truth. Acute embarrassment of his early role in his letters. His account of the transformation is different than what Luke says. God had set him apart from his birth. Jeremiah, “the Lord called me from birth, to be a light to the nations.” All people, Jews and Gentiles, all embraced. God identified not only with the center but also those on the margins. Defining memories and symbols of the Bible, Paul saw anew in Jesus Christ.
      Paul had some physical disability, rejected by the leaders of his own community, held faith in a “fragile, earthen vessel.” Urge communities to avoid factions and divisions. I Corinthians 1:31. From the center of God’s love at the center, body of Christ would give its greatest honor to its weakest members. Christ is our peace, broken down the wall of enmity, create one new person in place of two, establishing peace, preaching peace to you far off and those near, where we both have access.”
      Breathing out, breathing in…Reaching out, drawing in, fundamental mission of the church. Reach out to include. Not optional views or choices, but the fundamental parts of the Christian mission.
      Experience of exclusion of so many people also illumines and provides wisdom for so many challenges of our time. Poor, ideology, social and religious prejudice, Islamophobia, anti-semiticism, abuse of children vs protection of power and role, Ability and strength that gives people strength to cross boundaries.
      We are human beings first, before Christian, Jewish, Islam.

  • theologyanddisability 8:13 pm on July 6, 2012 Permalink | Reply  

    Symposium on Research and Spiritual Supports 

    Featured Speaker:

    Erik Carter

     
    • David Morstad 3:59 pm on July 17, 2012 Permalink | Reply

      Erik,
      Thank you for closing this presentation with a fundamental question: How may we best stay informed of research that has been done/is being done in this very important but very specialized area? I would love to explore the possibility of a repository of information or, at the very least, a frequent update to a listserve on who’s doing what.

  • theologyanddisability 8:12 pm on July 6, 2012 Permalink | Reply  

    Theology/Ministry and Mental Illness 

    Featured Speaker:

    John Swinton, Ph.D.

     
    • Christine Guth 7:42 am on July 30, 2012 Permalink | Reply

      Notes from discussion with John Swinton on mental health and mental illness

      Tell me what mental health is?
      absence of symptoms of mental illness
      carrying out daily capacities
      To feel balanced, with forward movement
      ability to cope with stressors of everyday life. And to live well.
      Well-being. What does it mean?
      A continuum – good days and bad days, but getting through.
      Life and all of its fullness. What is that fullness?
      Mental health involves recognizing that person has an illness – when symptomatic
      What does it mean to be healthy in the midst of profound mental illness
      Balance
      measures of mental health are done in universal scales, but mental health is always personal. What is healthy in one culture is not the same as another culture.

      In relation to mental illness, who defines what it is?
      DSM is “gold standard’ of medical diagnosis
      Different subcultures define it differently.
      Psychiatric diagnoses are sticky. You are ex-mental patient. You are schizophrenic, your culture holds onto that label.

      What for pastoral theologians do you have to bring to the table that is unique?
      Framework from Walter Brueggemann. Lament psalms reflect movements in the experience of the people of God. They move person from orientation to disorientation to reorientation.
      Royal psalms talk about how wonderful the world is. A crisis hits. You get to process of disorientation. Everything changes. All the old maps change. Markers no longer enable you to make sense of the world. You become completely disoriented. From disorientation, psalm moves you to reorientation.
      Psalms convey language to move you to reorientation. Reorientation is different. You have changed. You have a new way of seeing the world. This three-part structure gives a useful way of viewing mental illness. You can be reoriented positively or negatively.

      Who determines the nature of the disorientation in mental illness? What is a diagnosis? When a mental health professional listens to the stories of a person’s experience. Mental health profession fits the stories into a particular diagnostic structure. Moves the person to reorientation. Mental health professionals MHP are there to move person. They focus on illness as problem. Their general ethos and goal is to identify and fix problem. Diagnosis is very useful for MHP. They are not designed for theologians. No reason theologian should start at same places as MHP. Diagnoses are created for a particular group. Pastoral theologians begin the journey in the wrong place. World began long before diagnoses were thought of.

      Mental healthcare is participating in the journey. Where do we begin the journey. People go to mental health provider, get their stories back from mental health provider in different form. There is more to mental health than what can be diagnosed from perspective of problems. Looking at the fragility and problems of diagnosis. Book: Crazy Like Us. Says, DSM criteria function are highly contested. DSM looks scientific. Groups of psychiatrists differ. There is a mode of negotiation within western, American culture. Ethan Waters notices that US has been exporting its criteria and its solutions for mental health problems all over the world. Example: US sent counselors. But this was not culturally informed, not the usual way of dealing ways of trauma. Natural local ways of dealing with trauma were lost. Anorexia in Japan, schizophrenia in Africa, also examined in this book. Suggest that there is more than one voice. There are other dimensions of mental health that need to be considered.

      Theologians coming to the situation have different voices. They can understand differently. WE can think about illness as having two stories, double narrative. First narrative: Biological narrative, the focus of current mental health professions. 2nd Narrative – personal , includes the spiritual. Western society takes the biological more seriously.

      Story: friend of mine was preaching sermon on healing. God does not cause suffering. God is redeeming creating. It is not caused by sin. You will experience redemption. Two sisters were angry at sermon. Elder sister had breast cancer and had few months to live. Both thought it was important that God had done this to them. If God did it, there was possibility of meaning in it, possibility of redemption.

      Pastoral theologians need to learn to see and narrate the second story well. Schizophrenia is one of the highly stigmatized illness. It has biological basis, and has social component. As soon as you have it you become it, and you can never cease being it. It is totalizing. A neurobiological condition that takes over whole life. Schizophrenia is a brain disease, scientific and biological entity. Probably has more than one cause. At one level, this is helpful. Draws schizophrenia into biomedical framework to destigmatize, compared with cancer or MS. Negative also. John Modrell writes: How to become a schizophrenic. To believe that the inner core of one is sick is devastating. Equates utterly worthless. Instead of having schizoprenia, you become it. No way to escape. Whole body is disturbed. People self-stigmatize. Have same thing through HIV.

      Clearly another story that needs to be told. Biomedical teaches us to look in particular ways.

      From Mental Patient to Person (Book) interviews with people with schizophrenia. One thing they point out is issue of noncompliance. Said to occur when person leaves institution and refuses to comply with drug regime. Authors asked why people did not take drugs. Mental patients take drugs. Citizens don’t take drug. To stop taking drugs meant you became a person. A reclaiming the sense of personhood, away from stigmatized condition.

      In second story is where you find peace, relationship, hope value, purpose.
      Pastoral theology begins:
      1. it is not one of the mental health professions.
      2. Theologically we have a different perspective on health and illness. Bible does not have a word for health. The nearest scripture has is shalom. more than peace. Core meaning is righteousness, holiness, and right relationship with God. Also friendship, community, and some version of health, justice and prosperity. But core meaning is right relationship with God. It has nothing to do with psychological health, but with spiritual condition. It means you can have health even in the midst of the wildest storms. But psychologists are among least spiritual of medical professions.
      3. Mental illness is a psychiatric term. In scripture and we use modern categories, problems arise.
      4. Recovery is learning to live well within the illness.
      5. It works with a different set of narratives. Begins with creation.

      Psychiatrists and psychologists tend to pathologize. They assume everything in person is due to illness. Religion superstitious and dangerous. Does religion cause pathology? no.

      Spirituality informs you of who you are, why am I here, where am I going, and Why?
      Spirituality gives you language to express these things. Provides a grammar to express your existential location in the world. If you are in turmoil of serious mental illness, what other language would you turn to – use that most powerful language available to you to express that. If spirituality is the grammar that people use to express pain and lostness, religion reflects, does not cause the pain and lostness.

      Anthropologists talk about interpathy. Anthropologists enters into strange culture. looks around. When he takes the aspects of culture that seem bizarre seriously. Strange landscape becomes familiar. Understanding begins, becomes familiar. This is the place from which we interpret all experience.

      Cultural broker accepts the skills of the culture, and interprets to the patient. A pastoral caregiver who can advocate the treatment to the patient in way she can accept. Pastoral caregiver moves empathically between these two worlds. We begin to see mental illness quite clearly. If cultural broker is present, possibility of finding new stories becomes a reality.

      Psychiatrists and pastors created coupling groups. Would meet over case study. Pastor would bring case study to interdisciplinary group. Pastor was enabled to bring story, get professional perspectives. Provides a structure for mental health ministry within your church.

      We need to reclaim certain practices. We need to reclaim lament. You notice quickly that we are taught how to suffer. Your culture tells you how to suffer, what is acceptable, what is unacceptable. Suffering has a shape. The lament psalms are designed to shape suffering. For small groups, where people had experienced profound suffering, were intended to give language to express that. To form suffering. Lament psalms have cathartic explosion of pain. Extreme violence. It all comes in prayer. For most of psalms there is a shift from rage, anger, distrust, you move to trust: despite it all I trust in you. Some stop dead. That is a place where you can find language for it.

      Nella: all psalm hymnal, some have more than one version to be sung. New hymnal.
      Moves beyond triumphalism into realism. To be able to express your lostness in a way that is faithful.

      As a priest, how do I give hope and support to person who says he knew Jesus? Literature on delusion – for someone to say this, it is funny and bizarre. But also a sense of self-esteem. It is not just grandiosity, it is a place of safety and security as to who you are. You may want to think if they have a significant mental health issue, you may want to seek help. Still, he is saying something. You would not confront, you would seek assistance, but hold on to the fact that there are things that can’t be seen, not to believe that it is nothing but a delusion.

      Friend name Neil who is schizophrenia, his church has told him to give up his pills. Has lost his job due to out of control anxiety. He is an adult who does not like how the pills make him different.

      This is an unsustainable theological position – not scriptural. Many pastors will say in some contexts. I saw him with higher quality of life. Now the farther away he gets from the medicine, he can’t function.

      He is an adult, he is not legally compelled to take meds. He must make decision by himself. Sometimes law compels. His choice has consequences. You can point out the consequences, accompany him through it.

      Mental Health First Aid is used extensively in the UK. Designed to have congregations raised consciousness about mental health. Ties in with suicide prevention. It is functioning well. It is destigmatizing mental health. Opening up stories. Can develop a culture in which mental health problems become acceptable.

      In my office lady attempted suicide in ladies bathroom. Shot gun. Not her first episode of complete breakdown. She was taken to hospital. Had isolated herself from friends. She was released from hospital prematurely. At first doctor’s appointment after hospital, she told doc that she had open cans of gasoline in her truck in church parking garage. People were deployed to check it out and found it was true. She had escalated the situation and would have created horror for others. When she was in the hospital the rector was overwhelmed she was banished from returning to church. Music department came to me saying He can’t kick her out of the church, this is her home, her community. We got creative — warden, choir master, they tweaked it. Vestry then invited her into a covenant of care and limited access. Trust had been broken. People were afraid of her. We had a pastorally worded covenant for her to follow her treatment regimen, is she ready to return with circle of care — accompanied but no one is placed at risk. Brought church to her in small groups – in coffee shop, park.

      People are able to do better when they have a community. She needed a way of incremental steps for returning to community. Enables community to be flexible enough to not let her go.

      What are specific issues you want to talk about?
      What about dementia and Alzheimer’s who develop mental illnesses on top of developmental disability. There is not going to be healing or cure.

      I think there can always be healing, though not cure. Joseph Pieper to love you say, it is good that you exist, I am glad that you are here. You have to make an effort to reach out. Difference between love and evil. To love, you need to reach out. To do evil, you don’t need to do anything. You slide into evil.

      All of us need to willfully reach out and love for individuals. People with dementia are profoundly lonely. There is connection with loneliness and neurological deterioration. people with profound intellectual disabilities, the thing carers wanted for them was friendship. Beginning to develop strategies for befriending one another can be step toward healing. Accompanying people through their loneliness.

      When dealing with developmental disability plus mental illness, the support is so important to be able to meet them. It is foundational.

      Son with schizophrenia came dressed as a king to worship. People talked about it. King decided he would address his subjects in worship. Whenever he stood up and talked to him. Ushers would say, someone will listen to you in the pastors office. Someone listened to him, they took him out. He was treated with respect and disruption was minimized.

  • theologyanddisability 8:12 pm on July 6, 2012 Permalink | Reply  

    Integrating Disability into Seminary Curriculum 

    Featured Speakers:

    Deborah Creamer and Bill Gaventa

     
    • Rev. Bill Gaventa 11:54 am on July 22, 2012 Permalink | Reply

      Theological Education Workshop

      Issues raised.
      • Disability studies and theological education
      • How to move it through the seminary
      • Access issues and supports (visible and invisible)
      • Seminary survey that Naomi Annandale is doing this year.
      • Theological education: Just what is effective theological education?
      • Not just in one discipline, but try to infuse in all.
      • On line options?
      • How to get a foot in the door into seminaries
      • Once a pastor gets behind something, it is a go.
      • Participant with disability: I was chastised by pastor, challenged for lack of belief.
      • Experiences with disability, e.g., L’Arche attendants, are bringing people to seminary
      • What are same curricula?
      • Remember Clinical Pastoral Education Programs and other training programs for religious leaders outside of the seminary
      • Families and churches- marginalized, peeled away, tired.
      Debbie Creamer:
      • Work at Iliff in three directions

      Association of Theological Schools has a policy on disability. Not a requirement or standard for accreditation but recommended best practice. That can be downloaded from the ATS website. It can be a tool to use when talking to a seminary about initiatives that would help a seminary demonstrate what it has done when it comes time for ten year reaccreditation.
      Recommended resource: series of videotape presentations by Wolf Wolfensberger.
      Bill Gaventa: Issue is trying to help infuse disability issues and perspectives into all of the theological disciplines. Part of the purpose of the Summer Institute is to build up library of audio and video resources that relate to a variety of disciplines. Seminary professors may not know of the work being done in their particular area. Key is show how their particular interests and work applies to, and can make a contribution to, the work being done in theology and disability. Or, in other words, use an asset based approach, not one criticizing seminary or faculty for what they are not doing. Lots of pressure in and on seminaries to include multiple things in what is really a short three year process.
      Available from Bill Gaventa: Samples of course curricula, resource lists for seminary libraries, online resources and lectures suitable for seminary and other training programs. All of the audiofiles from the first two Summer Institutes on Theology and Disability are downloadable from The Boggs Center’s website and both audio and videotapes of the plenary lectures for the SI in Chicago, 2012, will be online.
      There are multiple options within seminaries for infusion: a course, modules in courses, independent studies, continuing education events, summer institutes, seminary wide seminars outside of regular classes, guest lectures, field education placements that can be developed in agencies supporting people with disabilities, guest preachers in chapel, etc. Lancaster Theological Seminary does a Disability Awareness Week each year. The Reconstructionist Rabbinical College in Philadelphia has drafted outcomes in the area of inclusion for their seminary graduates.
      A key part of courses that Bill G has taught has been hearing from people with disabilities and their families, and having each student in a relationship with one person with a disability for the duration of the course in which the person with a disability serves as a mentor to the student, not someone to whom the student is supposed to minister unto.
      The Boggs Center (Bill) and Vanderbilt Kennedy Center (Erik Carter and Courtney Evans Taylor) have started a new national Collaborative on Disability, Religion, and Inclusive Spiritual Supports with nine other University Centers of Excellence in Developmental Disabilities who have done, are doing, or hope to do initiatives in spiritual supports and working with seminaries in their respective states. Those states include Texas, Colorado, Montana, Minnesota, Kentucky, Georgia, Maine, Missouri, and Virginia. This is just getting off the ground. If you are working with seminaries in your state or denomination, encourage them to be in touch with the UCEDD in their respective state to explore collaboration. Both seminaries and UCEDD’s have missions of training, technical assistance, research, product development, and dissemination (to use the UCEDD language) Our hope is that we can infuse disability in one direction and awareness and skills about spiritual and religious supports in the other. Contact Erik Carter or Bill Gaventa for more information. To see a listing of the UCEDD’s, go to http://www.AUCD.org

  • theologyanddisability 8:11 pm on July 6, 2012 Permalink | Reply  

    Identity and Ability: Why who you are is more important than what you do 

    Featured Speaker:

    Amy Julia Becker, M.Div.

     
    • Bethany 8:43 am on July 19, 2012 Permalink | Reply

      Here are the notes I took from the small group. Feel free to amend and add to as needed.🙂

      Small group – Amy Julia Becker: 7/18/12
      • Question: If I’m teaching a whole church community – what info can I give them about what to do/not to for a family or individual with disabilities?

      • Question: On the relationship between identity and ability.

       Abilities still bring great joy – it’s nice to get really good at some specific activity, and that enriches a human life, but that’s not what defines a human life as rich. So it’s about putting them in the proper order.
      • A question came up about whether there are aspects of disability that are to be deplored. A couple of parents mentioned things they wished their sons could do (call them father, the ability to see).

       Parents of children with autism also express that kind of separation that exists btw them and their kids, and between the child and herself.
       It’s that piece of separation that I think is deplorable. The whole Christian gospel is one of reconciliation.

      • Question: In the Charismatic tradition we pray for people to be healed, and sometimes that happens, and being in this disability conversation has made me think through my theology a lot more. My friend has CP and breast cancer, and she asks why doesn’t God heal me? Should we pray for both? Neither? Why not have God heal everything?

      • Question: What if Heaven looks different for all of us, and is what each of us needs most?

       AJB: If someone has an identity that is not based on ability but that is given by God, received by others, and central to who he is – then someone changing over time is seen differently than a “negative disruption.”

      • Paul Miller wrote a book that is helpful.
      • Question: What is the role of grandparents in your family?

      • Question: Revelation 21 says No More Pain – so what kind of pain won’t still exist?

      • Question: Reciprocal benefits of Inclusive Community. I think a lot about the presupposition of normalcy – and to expose that so it can be shown as a sham. I am a parent of children with disabilities, and I run an organization to bring in secular social service approach into the faith community world. With this work, 98% of the time I’m in the faith community trying to promote a culture change to be more inclusive. So I am wrestling against a dominant culture, presuppositions – they focus on architecture and not attitudes, not seeing the big picture, looking programmatically and not relationally, etc. I wonder about the best way to engage congregations and how to create a paradigm shift in congregations. What are practical things that can be done that expose the idea of normalcy and create a paradigm shift that changes the way the community works.

      • Question: Can anybody recommend a book that goes more deeply into the fact that we don’t see with God’s eyes but that God sees creation as good?

    • Bill Gaventa 4:02 pm on July 20, 2012 Permalink | Reply

      This is the draft text of Amy Julia’s presentation. The final version will be on the video and audio recordings to be available in the next few months. Raising Children with Disabilities in an Age of Achievement
      Thanks
      Two lies
      Read prologue and opening scene
      narrate birth
      read “he was a gift” 27
      In many ways, the rest of this book is my attempt to understand what that nurse meant when she uttered those four words. It was hard to understand Penny as a gift for a couple of reasons. First of all, generally when I am given a gift, I feel excited and thankful, but I didn’t feel either of those things when I thought about Penny. I don’t mean to say I didn’t love her. I did, fiercely. But in those early days and months, I felt really sad and afraid about the fact that she had Down syndrome. Some of that sadness and fear was on her behalf—I worried about how she would respond to people who made fun of her when she was older, I worried that she wouldn’t get to do things she wanted to do—but much of the sadness and fear was about me. I didn’t want Penny to have a disability, sure, but perhaps even more, I didn’t want to be the mother of a child with a disability. So how could I see her as a gift?
      Secondly, I wondered how it could ever be a gift to have a child who would suffer, or, in the nurse’s case, die young? I wondered if this language of “gift” was a saccharine attempt to make something sound positive that was really just hard.
      As I look back on it, I see that there was a larger cultural narrative that also made it difficult for me to understand Penny as a gift. At that point in my life, I had a sort of willful ignorance about what it meant, what it felt like, to be a person with a disability, especially with an intellectual disability. Before Penny came into my life, I didn’t know anyone with an intellectual disability. And I wasn’t interested in knowing people with disabilities. My younger sister Kate participated in a program called Best Buddies in college, where she was paired up with a woman with Down syndrome. I remember when Kate used to tell me about her friend Sandra. Kate would talk and talk and talk about her—about going to McDonald’s together or shopping at the mall or Sandra telling stories about her friends and her boyfriend. Kate told me that Sandra was the best part of a difficult first year of college. And as much as I admired Kate for her ability to relate to Sandra, I was also a little puzzled by it. And I certainly wasn’t interested in having a similar friendship myself.
      Back then, I used politically correct language and I didn’t laugh at jokes or watch movies that mocked people with disabilities, but I did have a sort of careless indifference and almost an intentional ignorance about people with disabilities. In the hours and days that followed Penny’s birth I realized, not only was I utterly ignorant about what Down syndrome was, but I also had avoided people with Down syndrome and other disabilities my whole life. Only because our daughter had Down syndrome did I realize that I had come into the hospital with a set of expectations about who she would be and about who our family would be, and those expectations left no room for a child with an extra chromosome.
      This realization of my ignorance led me to ask myself a lot of questions, and ultimately to question many of our cultural assumptions about what our lives are “supposed” to look like. I began to recognize the ways I had believed that people could be measured by what they could do, by what they could accomplish. I had bought into a cultural narrative that says Ability leads to Identity. Ability leads to Identity. And so, having been given a child with a disability, not only was I confused about who she was, I was also confused about who I was and about who we would become as a family.
      I started to think about this subtle, often unspoken, but very real assumption that our lives are measured by accomplishment and achievement, and I started to think about what that assumption does to us personally and as a society.
      Although I was raised in the church and have been intentionally following Jesus since the middle of high school, my life was marked by a very un-Christian belief that I needed to do everything right in order to be acceptable. And I came very close to applying that same belief to my children. When Penny was born, at first it was really hard to acknowledge that I had a set of expectations for her that she wouldn’t be able to achieve. It was hard to acknowledge how much I had bought into the images of supermodels on the covers of glossy magazines and the idea that our worth as human beings can be measured by the SAT scores of our children or by economic productivity or athletic ability.
      Parents magazine
      But coming face to face with those expectations also allowed me to see them for what they were—a false and shallow conception of what it means to be human, of what it means to understand our identity as human beings.
      To put some religious language to this, our culture idolizes achievement. We not only hold it up as a standard, but we falsely assume that if we can only work a little harder or do a little more, we will be satisfied. But there will always be something more to do, more money to earn, more awards to win. There will always be someone else who does it better. Achievement is like any other false god—it demands our worship and gives us emptiness and longing in return.
      As it turned out, loving my child with a disability meant that I needed to smash an idol.
      When Penny was just a few days old, a friend called. I’m going to pick up reading with that conversation:
      Read passage about receiving the child 67-68
      Virginia’s words stuck with me, and I knew that she was right. To the degree that we could receive Penny into our lives, we would be receiving God’s work in our lives. It all sounded good in theory, but putting it into practice was another story.
      I’m going to read another scene that comes from A Good and Perfect Gift when Penny was about 13 months old:
      Read 183-185
      So on the one hand, I couldn’t have been more delighted in who Penny was. When I was home with her, I wasn’t looking up her accomplishments or comparing her milestones to the charts in baby books. But when I found myself in the context of other kids, this whole experience of ability determining identity smacked me in the face gain. And I realized again that understanding identity as something based upon ability leads us all to feel inadequate. Whether we are typically-developing or with disabilities, we can never measure up.
      The first major problem that follows the idea that ability determines identity is our own sense of insecurity. But this idea leads to a second problem in that we try to figure out who we are not only based upon our personal abilities but also in relation to the abilities of others. So we inevitably make comparisons—whether of ourselves or of our children. And this type of comparison leads us in two directions—either to judgment or to jealousy. In the scene I just read, there was jealousy every time I saw another child doing something Penny couldn’t, and there was judgment when I compared myself to the other moms and thought I had the harder row to hoe. This plays itself out throughout our lives as parents—“I wish I could get my kids to listen to me the way she does…” “I’m glad I don’t let my kids stay up as late as they want…” I’m sure you could fill in the list with other statements.
      Either way, judgment or jealousy, the impact is for relationships to be severed, or at least, impeded.
      Is there any other way to understand ourselves and our children?
      Read 184-186
      If we can start to see our children, and ourselves, for who we are instead of for what we can accomplish, comparisons take on an entirely different tone, and we can be drawn toward one another in our diversity of abilities instead of pushed away from one another. If we start to understand identity not as a reflection of our abilities but as a reflection of our relationships, of the reality that we are people who love and who are loved in return, then our lives begin to be marked by love instead of performance, by freedom to enjoy one another rather than the constraints and competition of achievement.
      Conversation with Sarah Widmer
      All parents face these problems of comparisons. Parents of typically developing children have a set of pressures about whether you’re giving your children enough stimulation and enriching opportunities and pushing them hard enough so that they’ll get into a good college.
      New Yorker article
      Parents of children with disabilities face a set of pressures about getting the proper therapies and advocating with school bureaucracies and having super endearing stories to tell of how amazing their brave journey has been. Across the board, we face the problem of comparisons.
      I was talking about similar themes with a parenting class a few months ago, and one of the parents said, “I’m tracking with you in theory, but it’s so much easier to tell you what my child can do than it is to tell you who he is.” She’s right. Measurements are easier. More precise. More concrete. But some other ways to think about this question of who our children are is to begin with the love we have for them. First of all, your child is your child. Your son or daughter. And she or he is loved. But second of all, your child is a child who loves in return. Their love begins with other people, but it also extends to experiences and activities. It might be, for those of you with babies, love for splashing in the bath or cuddling or spit bubbles. For those of you with toddlers and pre-schoolers, it might be a love for animals or listening to stories or chicken nuggets. For those of you with older children, it might be a love for dancing or music or climbing on the playground or going to work in the morning.
      Here’s the thing. If ability is our measure for identity, for belovedness, for our worth as human beings, every one of us falls short. Every one of us fails. None of us can ever achieve perfection. None of us can ever do everything right all the time. All of us, no matter what our genetic makeup, have needs and limitations. All of us are human. And if who we are is based upon what we can do, then any time we are unable to achieve or perform, we no longer have an identity.
      But if our identity arises from the fact that we are loved, then, again, the diversity of our abilities becomes not an opportunity to measure and judge but rather to celebrate, to give to and receive from one another.
      In some ways, I’m making a case for the value of love between a parent and child, and yet all of us know—both in our experiences as children and, for those of you who are parents, from that experience as well—that human love fails. Parental love gets us a lot farther than identity based upon achievement, but it still ultimately leaves us wanting. And yet Christians follow a God whose love never fails, a God who is defined as love. A God who exists in a Trinity, Father, Son, and Spirit, a relationship that is fueled by love, by mutual giving and receiving. The whole Christian story is a story of God inviting us into that love fest, inviting us to understand our belovedness and the belovedness of those around us, and to participate in God’s work of demonstrating that love to the world. So for Christians, knowing ourselves first and foremost as God’s beloved, gives us a bedrock for our identity, and it enables us to extend that love to and see the belovedness of others.

      I’ve spoken about one lie I believed in the hospital when Penny was born. I believed that her identity was determined by her abilities, and so I entered into an identity crisis on her behalf. Thankfully, I’ve come out of that crisis with a better understanding not only of who Penny is, but also of who I am, who my other children are, and really who every human being I encounter is.
      But I also believed anther lie when I found out that Penny had Down syndrome. I also believed that because she had received a label of “disability,” she would not be able to offer much to the world around her. I thought her limitations meant she was incapable of contributing, that she would be someone who was needy but unable to give back. But I was wrong about Penny, and I was wrong about people with disabilities more generally.
      I can’t tell you what exactly your children are capable of doing or what their strengths or weaknesses will be. What I can say is that every person in this room has limitations. And every person in this room has possibilities for growth, for learning. We all have limitations. We all have possibilities.
      Perhaps a better way to say this is to return to the language of gifts. Not only do I now believe that every human being is a gift to others, but I also believe that every human being has particular gifts within their being. Sometimes our gifts can be measured, as in the person who has a gift with numbers and can get an 800 on her SAT, or the person who has a gift with basketball and can score 3-pointers all day long. But oftentimes our gifts are immeasurable, and oftentimes they go unnoticed.
      I was with a young woman with Down syndrome—she was about 16—a few years ago. Maggie wasn’t able to speak very many words, and she used a few signs to communicate her needs and wants. She carried a doll around with her wherever she went. She was very polite. As I interacted with her throughout the evening, I wondered, “Who is she?” What makes her unique, and what makes her particularly valuable? She can’t do many things. She can’t read. She can’t drive a car. She can’t have a conversation. I know what she can’t do. But who is she?
      About two hours into our time together, our two families were sitting in our playroom. And this young woman sat on the floor. Our son William was about six months old at the time. William was, and is, an intense little boy. He was a really tough baby. He cried a lot. He squirmed a lot. He never cuddled and his body was rarely, if ever, calm. But when Maggie sat down with him, his whole body quieted. He lay there, as content as I had ever seen him, as she gently stroked his cheek and smiled at him. Her presence was a gift to him, and to me.
      I talked with her mother later about that interaction, and her mother said, matter-of-factly, “Oh yes, that’s Maggie’s gift.” She went on to tell me a series of stories of times when Maggie’s gentle and persistent presence had helped to calm someone else down.
      Years earlier, I don’t know that I would have been able to see Maggie’s value. I assume that I would have seen her as someone who needed me. I don’t think I would have known that I needed her too. But having Penny in my life has taught me how to look for gifts in every person I encounter. Having Penny in my life has helped me to understand the truth that our identity comes from being loved and not from being able to achieve or perform.
      According to the dictionary, a gift is “something bestowed or acquired without any particular effort by the recipient or without its being earned” or “a special ability or capacity; natural endowment; talent.”
      Maggie’s gift is her presence. There’s something about her that calms people down—from a woman in a nursing home to my fussy son to countless other hurting people her mom could tell us about. I suspect that many people in this room could tell stories about the gifts their children bring, and I suspect that many of those gifts would be intangible ones, the gift of laughter or patience or compassion.
      When people ask me about Penny now that she’s 6-years old, I can speak about = her struggles. I usually say that her biggest challenges are behavioral—she’s really impulsive so every day includes conversations about “quiet hands” and “listening ears.” Her skills include being able to read and write and doing a great job in her ballet class. But her gifts are probably what make me feel the most joy, and again, they are somewhat intangible. Her gifts have to do with relationships, with making people feel loved and cared for. They sound almost trivial when I try to put them on paper, and they wouldn’t translate well on a standardized test. For instance, a few months back our babysitter broke her foot. A few weeks later, Penny woke up and marched to the kitchen without coming in to our bedroom to say hello. A few minutes later she was back, with a paper in hand that read, “Dear Shannon I hope your foot feels better. Love Penny.” What struck me was the fact that the first thing on Penny’s mind when she woke up was Shannon. She didn’t need to be reminded or prompted. She has a natural ability to think about other people and express her genuine care and concern for them. I just love that about her.
      Penny has gifts that others need, as does every individual in this room, and every child represented by a parent in this room. Those gifts are easy to overlook in a society that focuses on abilities and achievements, but they are easy to see and receive when we are able to look at each other through the eyes of love.
      The nurse in the hospital was right. Her son was a gift, just as our daughter, and your sons and daughters are gifts. I mentioned earlier that I was neither grateful nor excited about having a child with Down syndrome. I now can say with great certainty that I am excited about watching Penny’s life unfold and I am incredibly grateful for it. I am also eternally grateful for the many surprises Penny’s life has contained, including the gift of my own gradual transformation from one who sees the world through the lens of achievement to one who sees the world through the lens of love.

      This is not for publishing or use other than on this blog site.

  • theologyanddisability 8:11 pm on July 6, 2012 Permalink | Reply  

    Jay’s Life and Faith Journey….and Mine 

    Featured Speaker:

    H. Rud Turnbull

     
    • Christine G 9:26 pm on July 18, 2012 Permalink | Reply

      My inadequate knowledge of how to use my new iPad means that the notes I took from the discussion section vanished. Sorry I have nothing to post.

    • Bill Gaventa 3:54 pm on July 20, 2012 Permalink | Reply

      A few notes from Rud Turnbull’s wonderful presentation. To read a lot of the poetry he read from his book, look up The Exceptional Life of Jay Turnbull on Amazaon.

      Rud Turnbull
      Access, inclusion, community, friendship, faith, wholeness, anger, telos, death, self description, topsy turvy.
      Jay: a bit of history, delightful when happey, terror when angry.
      Corporation: full unadulterated citizenship for young people opposed to employment. We lived in a home where there was domestic violence. How to create an enviable life?
      1987-1988 In DC, Jay at Walt Whitman High School in D.C. Teacher, went to coach, “You need a manager?” Manager handed out towels. Gets letter, gets up on the platform. Three moms, one of our sons will give Jay his letter jacket.
      Lawrence: Musician therapist. The J-T shuffle. Who led that dance? The least among them.
      Story “Don’t touch your penis in public.” Jay has such good manners.
      Greatest social security program is networks of friends. One day, he did not get the right bus. “Jay was not lost, he was misplaced. “
      I never spoke the Lord’s Prayer because I wanted to hear Jay say it.
      He did not know the value of money, but he knew everything about giving.
      January 7, 2009: poem about death. “Breathing in his death as we breathed in his life”
      Being whole: Being whole means accepting all parts of one’s life, strengths and imperfections.
      Ability to be, not to do: Jay’s gifts, to be, let me be, all the songs were about the largeness of spirit and gift of self.
      Death as gift to me? Merciful to him, but why do I feel so conflicted.
      The Best Professor: Ann and I were the instruments of his life. He was our best professor, but never gave us this final examination. He was in ways our creator, teach us, and cause us to teach. Follow me, and you and I will find life together, an enviable life.
      The Origins of Peace: Peace comes to me from multiple sources. Does it come with resignation. But his death is still objectionable. Time now to celebrate Jay’s life, let the learning begin. Hard work, slow to mature.
      Death dismembers: Not of semen alone. A disemboweling, taking away a vital organ.
      Evidence of heaven: If heaven transforms Jay, is that what he wants, or what we want. Joyful presence, light not dark, Heaven is what we wish for our departed, what we want for ourselves.
      Grandpa in heaven smoking a pipe with baby Jesus.
      The losses of loved ones brings my faith.
      Power of faith…faith sustains, makes bearable the otherwise unbearable.

  • theologyanddisability 8:10 pm on July 6, 2012 Permalink | Reply  

    Sibling Support and Spirituality 

    Featured Speaker:

    Katie Arnold

     

     
    • Christine G 9:30 pm on July 18, 2012 Permalink | Reply

      I greatly appreciated your team presentation. One significant gap I have observed in the literature about siblings, is the situation where more than one sibling has a disability. In the autism world, multiple siblings with the disability are common. I hope someone will begin to address this gap.

    • Rev. Elizabeth "Betty" McManus 9:44 am on July 20, 2012 Permalink | Reply

      Awesome presentation and invaluable resources. Thank you!

  • theologyanddisability 8:10 pm on July 6, 2012 Permalink | Reply  

    Hard Choices: The Promises and Perils of Screening for Disability Using Reproductive Technologies 

    Featured Speaker:

    Ellen Painter Dollar

     

     
  • theologyanddisability 8:10 pm on July 6, 2012 Permalink | Reply  

    The Spiritual Lives of People with Profound Intellectual Disabilities 

    Featured Speaker:

    John Swinton, Ph.D.

     
    • Bill Gaventa 11:18 am on July 19, 2012 Permalink | Reply

      Notes during the current talk: Theology that underlies their research and work in theology and disability.

      Disability and the strange new world of the Bible. God who says to people in the Bible with disability….use your disability/whole self. Not healed, use it. Do what I have commanded.

      A disabled body is the source of our salvation.

      Disability does something different in the Bible, not the way healing ministries see it. Many not healed.
      Motto of Olympics: spirit in motion. Bodies are soulful. Genesis 2:7. God breathing into dust and became a living soul. Animated earth. We are our bodies and we are our souls. We have the “nephesh” of God within us.

      Every human encounter is a holy moment, engaging with God’s nephesh. Earth animated by the breath of God, human beings are hoy creatures among otheers in a holy world. Attending to God’s creatures is a way of attending to God. Recognize who we are and whose we are.

      John Hull…Touching the Rock. Describes experience of becoming blind. His understanding of knowledge begins to change. Body is a source of epistemology. Generates knowledge as well as processing from the outside. As he begins to lose his sight, the world changes. Moves from outside to inside. Experience the world from inside his own body. Could have been trapped, but once he was comfortable there, he could then move back out and experience a new world. World began to change because a new world was being opened up. None of us encounter the world in the same way.

      We all create worlds, live in multiple worlds. No place of normality. There are multiple worlds. In Bible, we are called to love and to listen.

      How do you develop the right method of research for the right world. If I impose my world, colonialism.

      Stories…importance of listening.

      How does LArche communities understand profound intellectual disabilities. Ask anyone there a question and they will tell you a story. Came back with stories and no facts.

      Jean Paul with profound disability and heart condition. Jean Paul, where were you. At the doctor? What did the doctor? He looked into my heart. What did he see? Jesus. What was Jesus doing? He was rresting. “Indwelling of the Holy Spirit” “Temple of the Holy Spirit”

      Katie: Praying without words. Katie has no words. Learned some signs. Uses sign of prayer to say “Thank you.” What does it mean to pray when you have no words/

      Sensing the gospel: Elizabeth’s story. Mom told her, Katie you have leukemia. Did not understand words. But why did she cry. In Quaker community, when they went into their silence, she became peaceful and silent. In the first story, she could experience her Mother’s anxiety. In worship, drawn into the silence.
      Maybe spirituality is always communal thing.

      Communal nature of spirituality:
      Jesus is encountered in relationships
      Necessary to feel the gospel.
      Not something one has, but something one encounters. Jeremish, to know God, is to know and encounter the poor, outcast.

      Knowing God is a social practice. Underpinning all the work we do is be included. Need to be there, but to belong, you need to be missed. To be included, you just need to be there, but to belong, you need to be missed. Paul: All of you together are the temple of God.

    • Holly Soul 9:16 pm on April 14, 2014 Permalink | Reply

      Hi Sir!
      I Would like to Know if you beleive in exorcism and in Catholic Rome.
      Thank you!

  • theologyanddisability 8:09 pm on July 6, 2012 Permalink | Reply  

    Everybody has a Story 

    Featured Speaker:

    Cristina Gangemi

     

     
    • Bill Gaventa 12:07 pm on July 19, 2012 Permalink | Reply

      Notes as she is talking following John Swinton.

      I am Italian. Our organization is Kairos, born out of friendship. Fostering communities of belonging through attention to the spiritual.

      How about if God is doing something amazing in inclusion, and that we who think we are doing it are the ones who need to be included.

      Project just completed. In our work with faith communities, we really did not have a voice of the people with intellectual disabilities.

      Outcomes and Paradoxes.

      Breaking down barriers. Knowing what and how to do it. Many people in secular world know how to make make things accessible, but did not know why spiriutlaity was important. Churches, knew why spirituality was important, but did not know how to translate complex ideas into understandable communication.

      EveryBody has a Story: Capital B is intentional. 30 people. TCLE, the cycle of life experience. Invited people from families, from schools, a college, residentail, day center, and faith community.

      Every single person had an intuitive sense of their inner being. The more people joined in the focus groups, through pictures, etc., outpouring in response to “somebody wants to hear.” Story to tell, someone to receive it –sense of belonging.

      Found utter poverty of space for this to occur, even in faith community. Life was planned and prescribed. Poverty of places to outpour their story.

      In residential home, required to honor spirituality…Homes felt they were doing right, church felt they were, but there was no space for meeting. One person, “I want to go to church” said so quietly, as if afraid.”

      Staff said, “He has autonomy. He can choose.” So autonomy for home and in church became form of denial.

      Lack of opportunity to choose authentic settings and relationships andpeople with whom individuals wish to relate. Always going in and doing to. Found incredible stories of hope. We also found heightened loneliness. Feeling different. Even in body language. A need to please and always be happy. If someone was sad, someone would said, “Now come on. Be happy.” Do something to be happy.

      A Paradox…

      Agreement-Relationship. To have a relationship, it is indespensable to have an agreement before the relationship occurs. By agreement, we intent the consent of both parties, not enforced embrace.

      To have an agreement could seem almost impossible because of differening language, Barriers of communication. Some difficulites in empathizing. Relationships are based on need, not will. People know how, but not why. Functional relationships.

      This could leave person with intellectual disability searching. I don’t have space to tell people who I am. If people are needy, vulnerable, lonely, reach out. very vulnerable. Invitation could be abused. Forced hospitality? Being given too much to do. Need to slow down, listen to my story, pay attention to me, take some notice of me.

      Paradox of Effective Agreement:

      Found incredible stories. Hope for change. Joy for life. Constant need to narrate the story of the person.

      Research shows people with intellectual disabiltieis often excluded from religous and spiritual Paradox exists in our structures and rituals. Barries are made of words, familiar ways of doing things, the need to achieve a “learning outcome..”

      Who is autistic? How authentic is our theology.

      Effective relationships was born through hospitality. A possible solution to breaking down barriers of words and usual ways of doing things, Religious community can be a place to be. When will people lever really come together? Create a space for the story. Where in the community do we provide space for the story to disappear and the paradox begins to disappear.

      Training for bishop, on effective agreement. Bishop decided to learn. Paradigm shift, what it means to be human, all are speakers.

      What is the solution to the paradox?

      How to stop the how and why? Facilitate a meeting of people. so the “dis” could be dissolved. Every action a human understakes has the potential to communicate informatino to another person under the right circumstances. Most communicate verbally. 80% of communication is non-verbal sensory human communication.

      We therefore very often listen and do not look, or look and do not listen. Jesus: Eyes and ears, but do not see and hear. We think we are creating a space for story to be told, but often a prescribed way of being and doing things. So we do miss out on important people and people who belong to the human story. Without them, our community and body is incomplete.

      P- Perceive the language of the body, how a person relates to environment, peers and team
      P-Pay attention to how communication was initiated, sounds, words, movements. How did they initiate communication.
      A – Absorb, learn from gaining new information as to transcend ourselves and change. The ever self transcending God.
      C- Communicate effectively in tune with the way of being.

      “PPAC” it all in.

      Incarnation theology, creation theology. Learning the language of the Body, Its about belonging. What does the breathing in and breathing out of God (see Don Senior’s presentation) …Re-turn to the self.
      Not a reaching for God, With God all the time, God is with us all the time.

      “Jesus with me all the time, talks to me. Sometimes, someone else is talking but I know it is him.”

      An experience of Kenosis. Empty self completely to take on form of servant. Just keeps on growing. Work in progress. New resource coming out: Everybody has a story. DVD…encourage peole wiht intellectual disabiltieis to reflect spiritually and theologically on what is important in their lives. To release the voice and bring it to the front.

      Intentional space for freedom of expression, so as to help people to develop perspectives on their lives that are spiritual and for some, deeply religious.

      Jesus did that. Amazing story telling and sharing. Living together well and allwong each others story to inspire. Love paid out in action: Hesed.

      Why do you think you are in this world? Because I am. If God is the “I Am,” then every body is.

    • Bill Gaventa 4:33 pm on July 20, 2012 Permalink | Reply

      Cristina Gangemi’s handout

      Enabling Communities to Meet the Spiritual and Religious Needs of People with Learning Disabilities: Cristina Gangemi, Vincenzi and Harris

      Approaching disability from the viewpoint of relational philosophy and an educative approach, one which explores spiritual development through a relational model, we have discovered that people with an intellectual disability are not enabled by society and institutions to choose the kind of relationships, activities and people with whom they wish to relate.
      This situation occurs for two different reasons:
      1. People with learning disability often have differing language and cognitive skills. This could lead to barriers of communication and to possible inabilities to empathise or discover different forms of communication and language.
      2. People with an intellectual disability can therefore; enter into relationships that are based on needs and not on will. This situation could create the need for authentic friendships. This neediness could place them in a vulnerable position.
      Therefore, to enter into an effective agreement and an authentic relationship, one would need to develop new communication skills. This, coupled with empathy and a deeper understanding of the spiritual, inner self of people, will create a space for sharing life stories and a possible solution to the paradox.
      To achieve this, a paradigm shift must occur:
      From a culture of care to a culture of effective and authentic relationship, that is based on understanding and respecting difference. It is important that differences are not deleted but that they are accepted and respected within the human story.

      Every action a human being undertakes has the potential to communicate information to another person or persons under the right circumstances. The greatest majority of humanity is able to competently communicate verbally. We very often do not consciously recognise and/or pay attention to the approximate 80% of human communication that is non verbal and is perceived by the visual sense and not the auditory.
      We therefore very often listen and look but do not see. As a consequence, we ‘miss’ important communicative information and understanding.
      During the process of our research, we begin the very necessary journey of looking and seeing, so as to develop an empathic appreciation and understanding of how a person with an intellectual disability (LD) with limited or no verbal skills, communicates.

      Armed with this empathic understanding and knowledge of an individual, we are now better informed and can begin to develop a ‘shared medium of communication’ (SMC) with that person. A SMC is the judicious use of communication practice, principals and methods that are understood by that person and their interactive partners.
      Many professionals and others who work with or spend many hours in the company of individuals who present with a ID, develop this empathic approach to communication. The same are usually able to then develop and sustain the necessary SMC. This process is not so easy for the person who has not had the benefit of specialist training and/or long term exposure to, or experience of the ID person/s That being said there is ‘middle ground’ whereby an empathic, equal and humanistic situation in respect of a naturalistic SMC can develop between interactor and person with Learning Disabilities. It is the development of this situation that is most important for the success of achieving effective agreement
      Our research has discovered that people with an intellectual disability have an intuitive sense of their inner being and an urgency to narrate their life story to others. Our research partners, with intellectual disabilities of varying nature, showed a natural and contemplative approach to life. The expression of one’s inner spirit, we have discovered, is fundamental to their psychological and spiritual wellbeing. It has also been evident that they experience a poverty of opportunity in finding places and people with whom they can express their spirituality, in a way that is both meaningful and authentic. One of the reasons that this poverty exists could be that, whilst some people may know how to achieve an effective agreement and practice a Shared Medium of Communication (SMC), they may not fully understand why Spirituality and Religious Practice are important for their lives. It may appear that religious communities are able to meet special needs within their particular settings and that facilitating attendance fulfils a duty of care. In turn we have found that religious communities may ‘understand why’ spirituality and religion are important but may not ‘know how’ to make their services accessible to people with intellectual Disabilities. An outcome of our research has been the development of a practical resource/ programme, which seeks to create opportunities for the development of effective agreement and authentic, hospitable relationships. This practical course provides space for spiritual expression, builds self esteem, tackles loneliness and fosters communities where all people belong, no matter their ability or cognitive skills. Opportunities to engage in the life stories of people with disabilities therefore, leads to a spirituality ‘of being’ rather than ‘of mind’, ‘of presence’ rather than ‘of ability’ and provides an opportunity to be attentive to the other, reciprocal in exchange ad to engage in a real, authentic encounter,

  • theologyanddisability 8:08 pm on July 6, 2012 Permalink | Reply  

    Amplifying our Witness: Giving Voice to Adolescents with Developmental Disabilities 

    Featured Speaker:

    Benjamin Conner, Ph.D.

     
    • Christine G 3:20 pm on July 19, 2012 Permalink | Reply

      Ben Connor discussion

      Ben: One boy who graduated, all kids stood up and clapped for him. He was on the team, with the jersey. But once practice was over, he was never invited to anyone’s house. It was sad for me. In my mind, it was inexpensive to clap at graduation. Not extravagant. He deserved more. 

      We were at a camp. Another child was trying to get into the ball game, he had a diferent game in mind that he wanted them to play. He yells at them, “you guys are a bunch of retards.” He has no idea that he is perpetuating the same thing that was excluding him.

      In 2012 there is a strong effort for inclusion of people with autism. Let me put a plug in for a child with Down Syndrome. The same challenges affect individuals of all disabilities. I hope we can look at these strategies as working for many different kinds of disabilities. 

      What happens is that people with autism have social disability. But even the “more social” disabilities have incredible social disability. The same things, same tools, can work for other conditions than autism. 

      Ben: The first thing happened a long time ago when I was leading an apologetics seminar. It was a good old-fashioned apologetics seminar. Appealing to mind, history of the Bible, why you should believe it. I felt good about the seminar. A girl with Down Syndrome greeted me outside the seminar. She wanted to hug me. I hugged her. It was more effective to her than the seminar. This was first thing that got me outside of thinking of myself as a mind with legs. I went to princeton. I was reading to my son when he had a seizure. It freaked me out more than it did him. We were part of all the testing, cat scans, MRI. He turned out to have had a stroke at birth. He never would draw a picture to show it to you; he did it for himself. His play was directing us. When I hung out with the kids with Asperger’s who were playing Mario. He picked up my character up and threw it. To him I was not part of a team, I was an object to be used. We decided to homeschool our son since he would not do well at a traditional school. Melissa needed the support of a community. I stayed in Princeton to finish exams, then we moved into our home in Williamsburg. 

      Melissa had been volunteering with therapeutic horseback riding program. I was hearing parents telling very difficult stories. I heard, “Craig used to have friends, then they grew apart. One boy asked his friend, why are you friends with a retard.” One mom planned a birthday party for son, and no one ws coming. I got a dozen high school kids to show up. Practice of faith shaped my dissertation, my theology. My theology was changing which took me into conversation with different partners. This is how I got involved in this ministyr. Primary goal can’t be just to teach the kids social skills if they have no social group to fit in with. 

      For this ministry to really take off, it can’t just provide social opportunities for kids with disabilities, it needs to have a network. To socialize them to befriend them. To go to his games, to send them text messages. Many of oure kids have photos on Facebook profile in a photo  with another one of our kids. These kids have pictures of themselves with the picture of a kid with disabilities. Creating a culture where you can have friends who are different. 

      Second question was how do you disciple persons with limited intellectual abilities. 

      The biggest ministry has been a ministry to paretns. It is a system. It is important to reach parents who are looking to network with other parents. Parent network we have created, has impacted any other ministry in the area. Has provided respite and friendship. Mother wrote me a letter: “I want you to know that fior the firt time in seven years, I have been invited to dinner at someone’s home.” She could not believe it. She also said, my son after today’s event (cookout with families), I was putting spencer to bed. You got invited to a sleepover with one of your friends. He said, “That’s what it’s like to have a friend.”

      What do you mean by the term disciple as a verb? Leading someone in the life of faith. Showing how they are connected to God’s story, how do I engage in practices of faith. 

      Talk more about work with horses: Wife rode horses when younger. The horse part of her I did not know anything about it. When she met me, all I did was play sports and work out. Then I ended up getting a PhD. I came back and she was involved with horses, volunteering three days a week. Now she is the director! What brought us to see that as valuable from being human standpoint. There is not a disabled rider. Either you are a rider or not a rider. After you are on the horse, the horse has the legs. Incredible benefits to the rider. You must have course strength. Horse movement is soothing. Great benefits physically. It is a great place to have people without disabilities to encounter people with disabilities in a positive light. The ministry I do and the center have a great partnership. We both care for the humanity and dignity of people. We use horseback riding to teach faith and trust, collaboration. 

      When you decided you would move into a more aggressive involvement with pwds, had you already been in church work?

      I am 43 now. After college I worked with youth in a church. Then I worked for Young Life. Nondenominational youth ministry. Got MDiv, then doctorate. Wife encouraged me to float my idea with Young Life, and they approved it. Capernaum is the name of the project. 

      None of us are youth pastors. How do we approach youth ministers/pastors to start looking at this? 

      I have tried to make the book accessible to youth pastors. Most youth pastors connect with larger conversation. Youth Worker Journal is going to run an article on me. Immerse is another youth worker journal that will run an article. 17% under age of 18 have a disability. Approximately 1/5 of youth. If they are not in our church, they should be.

      How old is your son now? 16. We are in the throes of it. We did what we needed to so he can have a successful high school experience. He was homeschooled, now in public school.

      Where is the best place to connect? Parents have a difficult time either because time management or do not have enough connections with community to allow child to connect. School connections do not naturally flow out of school. 

      The buddies or student leaders have to take the initiative to make it happen. Xavier has autism, does not speak much. His mom is exhausted. She makes sure he is at our events. One time Xavier got sick right before our weekend event. Mom was weeping that he could not go. Took him to camp, he shook my seat on bus out of excitement. These kids get connected with their peers. Ricky takes Xavier regularly to get chicken nuggets. 

      Can you talk about bullying and what churches can do? 

      My son is meekest kid at school. School called me. I was worried. Principal said, your son came into the office. He had taken another kid’s french fries. He snitched a fry. He is as honest as could be. He had skipped a class, confessed that too. Heightened awareness now if taking a french fry could get you a day of in-school suspension. Best way to prevent bullying is to have people around them. When Matt is sitting at table by himself, he is more likely to be made fun of than when he has people around him. To have someone stand up for you is powerful. 

      What is it about people that they feel free to stare or single out an individual by themselves. If with a group they can be ignored. 

      Fundamental question is, why does anyone pick on anyone. In high school, identities are forming, shifting. You area listening to other voices. Some are trying hard to demonstrate that they are not a person with a disaibility. 

      I commented on Facebook: If we as a society can learn it is wrong to say a racial slur, we can learn that it is wrong to put down an individual because we perceive them to be weaker than us. Those who grow up with disability, we remember that a good day was when no one picked on you at school. If we can create an environment, it is about self esteem, regardless of what disability you have. I see people with disabilities not pursuing employment because they don’t believe in themselves, low self-esteem. 

      Pathways did a series of lesson plans designed for helping regular ed students accept a student with disabilities in religious education class. “Different Gifts but Same Spirit”. It was amazing to do this with group of sixth grader, allowing them to talk about disabilities that had once been taboo. If we can let kids talk about it, it helps. These lessons are on http://www.inclusioninworship.org.  

      Gay son was getting on bus to go to work. Black teens started yelling faggot at him. It felt to him like the civil rights movement of 2012. Much work to do. 

      One thing we notice in media is that this particular group is getting more attention: kids who are gay. Media themselves – feel uncomfortable talking about disability. So they go to children who are gay. This issue is just as important, but disability is never addressed head on. I commented to journalist that they are leaving out students with disabilities. 

      You don’t learn from being persecuted, you learn from being justified in faith. 

      The “higher functioning” kids are the more vulnerable they can be to bullying if they are unot understood ot have a disability. 

      Do you have children iwth mental health problems.? I sometimes need to pull him aside to calm down. Need to make sure the meds are given at proper times when we are away on weekends.

      How do you advise parents to find the right churches? 
      Erik Carter’s book is good for asking the right kinds of questions. Including People with Disabilities in Faith Communities. 

      Are you familiar with churches that have specific ministries to the DD population? In Williamsburg, I am aware of one. Most youth groups feel – we don’t have any kids with disabilities that come, I ask why do you think that is? Getting kids with disabilities together with others with disabilities, they often do form friendships. The ways we work at understanding faith together involved people at all levels. To teach prayer, we made string of ten beads. Ten things you want to pray for, ten people you want to pray for. We made bowl of scented oil that smoked, These are the prayers pleasing to god. Dipped written prayer into bowl to take along. 

      Rocks symbolize grudges. Put them in a backpack. Feel the weight of them.

      Story tiles have a picture on them. Each kid would have to contribute to story with the object on the tile. Then used tiles with pictures from shared events. Then connected story that your pictures are in to God’s stories. A story we built, a story God built, a story we are in together. Are there connections?

      Played Jenga – each piece is dependent on other pieces. We do many things with full bodies. Some of ideas I make up. This is why Erik Carter wants me to list some of these resources. I may make a companion volume. 

      With your work to stop bullying of pwds, is this crossing over to affect whole school? 

      I can’t imagine a time when there won’t be bullying. It is a big thing in school systems. 

      Kids who I have seen as very successful socially, it is the families that foster the social togetherness. Without that, it does not happen. Parents are exhausted.

    • Sue Edison-Swift 5:48 pm on July 19, 2012 Permalink | Reply

      For a reprise of the opening exercise (dahm-dahm-daughty-daughty) visit http://smu.gs/PnGgS6.

  • theologyanddisability 8:07 pm on July 6, 2012 Permalink | Reply  

    Symposium on qualitative research and people with profound disabilities 

    Featured Speaker:

    John Swinton, Ph.D.

     
  • theologyanddisability 8:07 pm on July 6, 2012 Permalink | Reply  

    Discussion on inclusive religious education 

    Featured Speaker:

    Erik Carter, Ph.D.

     
  • theologyanddisability 8:06 pm on July 6, 2012 Permalink | Reply  

    Building Communities from the Inside Out Respondent: Bill Gaventa 

    Featured Speaker:

    John McKnight

     

    Respondent:

    Bill Gaventa

     
    • Bill Gaventa 7:51 am on July 21, 2012 Permalink | Reply

      These are some of the notes from John McKnight’s presentation; For more writings and resources, go to http://www.abcdinstitute.org. The handout for today was Community Building in Logan Square, a free resource under their downloadable resources.

      Origin of the word hospitality is hostile but it evolved to mean stranger and then to welcome the stranger.
      Hospitality is critical at the edge of every community for the sake of stronger and more inclusive communities.

      In their initial research, they began to ask what have people done to make things better in their community. They came with 3000 stories. From them, they found five key resources that people had used, which their team then called “assets.” One of the tools from the Institiute is an asset mapping tool.

      The five:
      1. People, and their gifts. Symbol…stick figures of people

      2. Voluntary associations of all kinds, most without paid staff. In the stories of how things got better, more than half of them were started in community associations. Associations are networks where people gather by consent, eg, clubs, civic groups, cokngregations, hobby groups, advocacy groups, support groups, etc. Associations magnify and amplify the gifts of individuals. symbol….triangle

      3. Groups and organizations where people are paid. Businesses, nonprofits, government. The symbol was an organizational chart. A few people can then control a lot of people. The glue is money. Associations are held together by care. Institutions do not care. Medicare does not care. People in organizations and institutions may care deeply as individuals, but the institution itself is not the caring force.

      4. Lands and assets and how they are used.
      5. Exchanges, where things, goods and services are shared, traded, bartered, bought, and sold.

      Good community builders”broke the lines.” Three key things in improvements.

      1. A combination in different forms of the assets above.
      2. Assets connected, created connections.
      3. Connectors. Vital. May or may not be the leader. Skill: host, hostess, bring people together.

      Question from audience about role of technology. John noted that in research like Robert Putnam’s “Bowling Alone”, associational life began to decline in 1969, when first wave of baby boomers who had watched TV reached adulthood.. Technology can precipitate real life, face to face relationships, which are key for community building.

      Care is freely givencommitment for another, not managed or provided. Managers cannot make care happen.

      In efforts in Logan Square related to disability, inclusion happened by someone being welcomed or adopted by an existing association or organization. It wass something new. Civically centered. Find people in an association who can lead people on the fringe back in.

      Training staff in an agency to do this does not ultimately work. The key people involved are the connectors..
      Four traits of connectors:

      1. Gift centered, not deficit focused. See the potential in everyone. (glass half full)
      2. Well connected.
      3. Trusted
      4. Believe their community is welcoming.

      The best connecting organizations are associations. John showed an example of the Prince George, Canada, community associatin guidebook. Thousands of them in one community. Associations come together around something they care about. Example, the Anti Gravity Association. (jugglers) You don’t have to be a juggler to belong, but would you like to…? That.s where you go.

      The issue with human service organizations is that they label people and then everyone has to spend enormous effort getting away from the label as the key identity, rather than gifts and interests.

      Major resource from ABCD: Building Communities from the Inside Out.

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