He has been raised

Posted on May 14, 2012 by jason

Do not be alarmed; you are looking for Jesus of Nazareth, who was crucified.  He has been raised; he is not here. (Mark 16:6)

In this Easter season we boldly and jubilantly proclaim Jesus as Risen Lord.  Through the resurrection the ultimate power of death has been undone and all things in heaven and on earth have been reconciled in Christ.  As Christians, we see all of history, both before and after this Event, through the life of the Risen Christ.  All Reality now shines with a new and radiant splendor.

These are all glorious images no doubt, fit for the season.  But what kind of image do they evoke in us of Jesus?  For most of my Christian life i have seen in the resurrection the active, victorious Christ which no one or thing can keep down.  This is a Jesus as heroic Savior, battling and winning against the “powers and principalities.”  For many centuries the church has proclaimed this biblical image of Jesus, and has called the church to walk in the way of the Risen Christ.

White statue of Christ with arms raised before a blue sky has hands broken off. Support wires stick out where hands should be.i have accepted this image of Jesus for many years, mostly without thinking about it.  After living in L’Arche, however, and being in relationship with people with intellectual disabilities, i began to ponder the Easter mystery anew.  Most of us probably imagine Jesus as the strong divine agent, and thus identify Christian discipleship as following in that way.  But what about those people who have very little agency or potential for agency?  Next to a Jesus who is binding the powers of the universe, people with profound disabilities look very anomalous.   The temptation to see them merely as helplessly incompetent recipients of someone else’s rescue become almost irresistible.

Then i looked at the resurrection passages again and saw something interesting.  In Mark (and Matthew) the young man in the tomb tells the woman that Jesus “has been raised” (16:6).  The Greek word here is ēgerthē, a passive and past form of the verb “to rise.”  Thus Jesus did not raise himself but actually was raised.  So the resurrection becomes an event that happens to Jesus rather than him initiating it.  Curious.  For if Jesus is God, then surely he could raise himself, right?

It appears that Mark and the early church believed that Jesus was dependent on God and the Holy Spirit to raise him from the dead.  In this context, Jesus is no rugged individualist whose final purpose lies in “doing things for himself.”  Instead, Jesus lives in total interdependence with the three persons of the Trinity.  Without his community, which included the Father and the Spirit, Jesus could not fulfill his mission and would have remained in the tomb.  Thus community, dependence, and relationship are essential qualities of the God in whose image and likeness we have been made.

With this image i began to see my friends with disabilities in a whole new way.  The Risen Christ became visible no longer only in active and able-bodied people but in all people, even those with the most profound disabilities.  Before this i would have looked at my friend Buddy as hopelessly abnormal because of his severe limitations.  But in the light of the interdependent Jesus i can now discern in him a mission to call others into relationship, and into real bodily living.

This often occurred to me when i would assist Buddy in getting ready for the day.  Even with his very wiry strength, Buddy still requires help in getting up.  Without my assistance Buddy could not fully exercise his mission to live in community and transform hearts.  Yet without Buddy’s presence, many of my own assumptions about what it means to be human and a Christian – which too often excluded people with intellectual disabilities – would never have been challenged and overturned.

In this dynamic of community, both Buddy and i “have been raised”; neither of us would be complete without the other.  Could this be something of what the Trinity is like?  If so, perhaps seeing someone like Buddy as made in the image of God might become less an anomaly, and more a basic dimension of Christian faith.  This seems the only real and hospitable response to someone with a disability because our God has been hosting since the beginning of time – indeed, it appears to be God’s very identity.

So let us go out not only seeking to “raise” others, but also let ourselves “be raised” by the Other.  By doing so may we begin to know who we are as people inherently created for community.  And may we recognize ourselves as made in the image of our interdependent and relational God who embodies himself through us, called to be his Body in the world.

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A Tribute

Posted on April 22, 2012 by Kathy

A Tribute

Written April 10, 2012. For Debbie, with love.

My Aunt Debbie died five years ago today. Aunt Debbie, who gave me a sliver of perspective into being yourself with a disability in an ableist world: the anniversary of her death always involves a sort of haunting for me.

I call it a haunting because the day reminds me of profound loss and of traumatic, untimely, unexpected, and bloody death. Unlike the other 364 days of the year, when my life flows on with a constant knowing that she is gone, this day pulls together painful memories of her death and jumbles them all together with a sense of celebration and overwhelming gratitude for her life, with moments and stories, with the sounds of her laugh, her voice, with the sight of her smile, her orneriness . . . with her Debbie-ness.

As I told some friends, somewhere in my need to linger with the memory of her I discovered that I am weary of the word disability. Although having Down Syndrome was interwoven with the core of Debbie’s very identity, creating disabling realities that produced suffering, pain, and challenge on a daily basis in her life, I am finding the word disability wearisome.  The word, in how I think of it now, does not fit Debbie, because ordinary life with Debbie meant doing both the things that she could do and the things that we could share together. Weariness of the word might be, then, the very limits it implies.

For some, this idea may seem absolutely absurd. Of course disability ”fits” Debbie; it would not be right to imagine Debbie without Down Syndrome. In fact, her genetic make-up that produced differences and a concrete medical diagnosis cannot be separated from who Debbie was, nor should it.

But when I say I am weary of the word disability, I am weary of centuries of oppression that the word itself implies. I am weary of the attitudes it often produces in the minds of those to whom it does not so boldly or clearly apply: attitudes of absolute disregard, dehumanization. I am weary of all of the questions wrapped up in an understanding of “meaningful life” based solely on capacity and agency for all sorts of “typical,” “regular,” or “normative” things.

When I honor, celebrate, and remember Debbie, I call to mind a person, a face, and a hundred images and stories of moments spent in relationship. And when I think of Debbie, I am overwhelmed by how she accepted, included, and loved me, just as I am. There is nothing disabling in that. Through her love, I grew. I was able to serve a volleyball confidently with her all-believing shouts of “GO KATBABY. YOU CAN DO IT BABY!” over the noise of a tension-filled, crowded gym. I was able to take a break from studying because she had hidden my books in the laundry basket, and focus instead on a few hours of play and release.

Her love steadied me, centered me, and allowed me to be me. And I can only hope that she experienced my love, and the love of our family and friends, in a way that steadied, centered, and allowed her to be herself, just as she was: Debbie.

On this day, the anniversary of Debbie’s passing from life as we know it, I celebrate the gift of Debbie’s ordinary and beautiful life. On just this one day, I think, it’s ok to give thinking about disability a rest.

Tomorrow, though, I’ll plow forward, because this word disability is haunting, too. It will continue to haunt, as long as any one person living with a disability is denied status as a whole human being, named, called, and loved by God.

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A New Commandment

Posted on April 13, 2012 by jason

Peter said to him,”‘You will never wash my feet.” Jesus answered, “Unless I wash you, you have no share with me.” (John 13:8)

When i lived at the Green House – one of the homes at L’Arche Daybreak – i shared life with Bill.  A man who loved (really) old, dry jokes and a “real” breakfast (i.e. bacon and eggs), Bill also required assistance with some personal care due to a degenerative muscle condition.  As he had difficulty bending over, one way i could help Bill was in washing his feet.  So in the midst of our morning banter, i would routinely kneel down and wash Bill’s feet.

It was only some years after he died that i began to recognize the trust Bill placed in me the years i lived with him.   The sheer dailiness of the act – in the midst of so many other fundamentally important little tasks – (thankfully) prevented me from going off into spontaneous theological reflection.  But when Bill was gone i began to wonder about those very ordinary days and seemingly trivial moments of trust.  By letting me care for his body, Bill also let me into his life in a profound and intimate way.  This gave me the opportunity to recognize the brokenness and pain of his life, yet also give thanks for the God given gift that Bill was to so many.

Was this something that happened for Jesus’ disciples after he washed their feet?  This event probably appeared much less ordinary to the twelve than my washing of Bill’s feet.  Yet perhaps they too only realized the depth of what Jesus enacted for them on that night after his death and resurrection.  Only with the transformed eyes of the resurrection could the disciples recognize the full importance of this profound act of humility and communion.  This impression was so strong for John’s community that they kept the ritual of foot washing as a sign of Jesus’ presence among them as lord and servant.

This past Maunday Thursday i took part in this tradition with the congregation i attend when i participated in the act of washing one other’s feet.  While i am deeply grateful that my church has kept alive this ritual in its lenten worship, i must admit that it does not come close to the meaning i found in foot washing when i lived in L’Arche.

The Christian ritual of foot washing that traditionally happens on Maunday Thursday is perhaps the most universally enacted religious tradition in all the L’Arche communities throughout the world.  On this day foot washing occurs in L’Arche whether the community exists in the United States or Slovakia or Japan or Australia.  In communities that struggle ecumenically around who can and cannot receive communion, the tradition of washing one another’s feet has become a sign of true Christian unity.  It seems that even in places where L’Arche attempts to live a reality which includes more than one faith, foot washing remains a ritual that everyone can participate in.

i deeply miss not being a part of the ritual of foot washing in L’Arche.

For there is something in this tradition that has both profound meaning and universal significance.  In a way, people in L’Arche participate in foot washing every day: in the midst of daily life personal care and service happen continually.  Yet when that habitual care is placed within the setting of the church and worship, one’s “ordinary” experience becomes transformed into the work of grace and the Holy Spirit that it truly is.  One realizes that God has been communicating and healing and working in all our daily life.  Even through the most humble acts of care and compassion Christ is present to us and desiring communion.

Perhaps the most meaningful aspect of this tradition for me always occured when core members – those in L’Arche with developmental disabilities – washed my feet.  In a visceral way this always embodied the “great reversal” that Jesus inaugurated when he proclaimed the kingdom of God among us.

So often it was tempting – and still is tempting – to think that i was the one serving and the core members the ones receiving.  But when Bill stooped down to wash my feet i had to recognize this as nothing less than an illusion.  For all of Bill’s trust beckoned me to not just serve him but to actually become his friend, someone who i could honour as a fellow child of God and thus intimately let into my life.  As Jesus might say to people with intellectual disabilities today, “I no longer call you clients/residents/patients/children but friends” (see John 15:15).  And the friendship that Bill called me to was one where he also could extend compassion and grace to me through the daily acts of sharing life together.

Thus i realized that not only did Bill need me to flourish, but i needed him just as much (or even more) to be a fully alive human being.  Without him i could continue to go on believing that my strength and ability made me a person acceptable to God and society.  With him in my life, however, i had to realize that i could only become a follower of Jesus through mutual trust and community.

Can we take the time to listen to the Bills in our own churches, communities and cities?  Will we let people with cognitive disabilities wash our feet and transform our conceptions of what it means to be a Christian and what it means to be human?  Can we make the conversion to see Bill not as a client but as a friend?

May we be open to the Holy Spirit to begin this Christian journey of peace and reconciliation today, and to embody Christ’s command: “For I have set you an example, that you also should do as I have done to you” (John 13:15).

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The Peace of Christ

Posted on March 15, 2012 by jason

We all want “world peace,” don’t we?  Yet it continually proves so very, very elusive.

In our world of division and conflict, it is a continual temptation to think that real peace is not or never will be truly possible on this earth.  Nations still war, people with disabilities (and others who are radically “different”) continue to be marginalized and excluded, the poor die from starvation and malnutrition, the earth languishes under our compulsive consumerism.

Perhaps the best we can hope for is a kind of “inner peace” that begins and ends with us as individuals, and which helps us cope with the chaos around us.  If a broader transformation of society lies outside of the realm of our effort, then at least we can work for an interior one that brings enough personal happiness to help us feel that life is worth living for us and those close to us.

But this is not the peace of Jesus.  Shalom, the biblical word for peace, means much more than an absence of conflict or an inner equilibrium.  For Jesus (in continuity with the entire Jewish tradition), shalom consists of a right relationship with all things.  This peace begins with God but is inseparable from a peace with neighbor and the whole creation.  Certainly we can always strive for a peace with one’s truest and most intimate self.  Yet the goal of God’s shalom does not end with our inner lives, but the reconciliation of all things in Christ.

This is God’s kingdom, inaugurated by Jesus and given as a mission to the church to enact through the power of the Holy Spirit.  Not content to simply zap all things into a spiritual and heavenly reality, God chooses to embody his kingdom, giving it flesh and bone in a people.  It is these people, broken and blessed, vulnerable and divinized, who will be not the answer to the question of peace on earth, but the saving community which makes a space for the Trinity to do their redemptive work in the world.

This certainly was Jean Vanier’s vision when he began the L’Arche communities.  Vanier began L’Arche as a way of liberating people from the horrors of institutional life.  Yet gradually he discovered that God had plans for this adventure in faith that extended far beyond the confines of the homes where people with and without disabilities shared life.  L’Arche was to be a “sign” for the world that through the help of the Holy Spirit humanity could ultimately choose life over death.  “L’Arche is not a solution to a social problem, but a sign that love is possible, and that we are not condemned to live in a state of war and conflict where the strong crush the weak.”  

my own time in L’Arche helped me see how this shalom is truly possible here and now.  And it was those persons with developmental disabilities, “core members” as they are called in L’Arche, who led me to see how this peace can be embodied in our world.  One of those people is May, someone who i used to live with in L’Arche Daybreak.

Now, if you would have told me twelve years ago that May was eventually going to be my teacher in manifesting God’s shalom, i would have laughed in shock at you.  For May was someone very hard for me to live with, primarily because her personality was so different than mine.  i could (and too often would) get highly annoyed by practically everything that she reveled in.  And she knew it too!  i could not help but believe that she drew much delight in recognizing when her behavior would drive me crazy.

Yet May was also capable of kindness and compassion toward others.  And it was at those moments that i could see a possibility for communion with the “other” more powerful than the conflicts which so often marked our lives together.

Let me tell you about one day at the supper table.  It was Lent, and as a spiritual discipline all the L’Arche Daybreak houses were asked to spend some time each day that year praying and reflecting on the conflict between Jews and Muslims in the Middle East.  After reading part of a story on violence in Palestine, i could see in May’s face the pained expression she reveals when she hears about situations of suffering. 

She then asked me a question: “Why do people in the Middle East fight so much?”  Perhaps naively taking a stab at an answer i replied, “Maybe because they are so different, May.  They cannot recognize the other person as a member of their group, so they perceive them as a threat which they need to get rid of in order to feel secure.”

From this (all too) simple answer i then realized that this same threat from the “different one” so often marked the conflict between myself and May.  Yet we could still sit down at the table together (with others very different from us) and share a meal together.  Every time that we ate with one another we committed ourselves to building and fostering God’s shalom, reconciling with those who live across the “dividing wall.”  In this way, L’Arche embodies in a very real way through its “culture” how enemies become friends and strangers neighbors.

So then maybe peace is truly possible after all.  If May and i, so utterly different and strange to each other, can sit down at the banquet table, perhaps Jews and Muslims (and everyone else radically different from us) can too.  Can we open our hearts and lives to let the Mays of our communities in so that they can transform our vision about what it means to be a Christian or a citizen or a human?  As a church, may we let God make us to be a “sign” for the world that love truly is possible, and that without honoring the lives of the most vulnerable among us we ultimately betray our own humanity.

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Parable IV

Posted on March 6, 2012 by jason

To what can i compare God’s Reality, or how shall i describe it?

God’s kingdom is like a young man and an older woman, sitting together at a table, sharing a can of Ensure with one another.

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Parable III

Posted on February 28, 2012 by jason

With what can we compare the kingdom of God, or what parable will we use for it?

It is like a certain man with Down’s syndrome serving communion to an undocumented Latina woman.  “The body and blood of Christ,” the man proclaims.  “Amen,” the woman replies.

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To Stare or to Gaze

Posted on February 17, 2012 by jason

The eye is the lamp of the body. So, if your eye is healthy, your whole body will be full of light; but if your eye is unhealthy, your whole body will be full of darkness. If then the light in you is darkness, how great is the darkness! (Matthew 6:22, 23)

Have you ever felt like you are being stared at?  You know, you are waiting in the line at the grocery store, or perusing the shelves at the library, or sitting in the subway, and you sense that someone is looking at you from a distance.  Then you turn your head and realize – Aha! you were right!  Someone was looking at you.

The biologist Rupert Sheldrake has come up with a scientific theory proving that humans have an inherent “sense of being stared at.”  Sheldrake claims that our minds can “extend” toward others through “morphic fields” which can connect people (including animals) at a distance.  He even set up an experiment where tens of thousands of people were blindfolded and asked to discern whether they believed that someone was actually staring at them.

i have no qualifications to judge the scientific claims Sheldrake makes.  (He certainly has a lot of critics in the scientific community.)  Yet i cannot help but wonder if there really is something to a “sense of being stared at.”  If i previously had any doubts, living in L’Arche proved this intuition to me in a profound way.

i remember the first time i went out with Buddy, a person with a disability who lives at L’Arche Cape Breton.  We were going out for dinner, a very special occasion in rural Nova Scotia.  The restaurant was connected to a mall, and so because we had some time we took a brief stroll to look at the stores, an activity Buddy enjoys.

i will never forget the stares that came our way – it was like the feelings of fear, shock, and disgust truly “extended” from the consciousnesses of people in the mall.  The strength of those visceral reactions meant that they felt almost physical and tangible.

For you see, Buddy is someone who is different.  And not just someone who thinks differently than most of us, or has strange political views, or wears eccentric clothes.  Buddy has a radically different body than most of us, and there is no way for him to avoid making it seem less odd.  And if i or Buddy ever forgot this, the reactions we received acted as a constant and stark reminder of it.

Let’s call this look the “stare.”  It is what Jesus spoke about when he taught about the “unhealthy” or “evil” eye (Matt 6:23).  If the healthy eye sees “single” (Matt 6:22) or with oneness, then the “evil” eye sees “double.”   When our eyes are unhealthy they see not one but two, looking upon someone as an “other” completely separated from us.  The foreigner becomes the “abject,” the one we “cast off” because their difference frightens and disturbs us.  Through his travels throughout the world, L’Arche founder Jean Vanier asserts that this fear of people with developmental disabilities is deeply “imprinted” in every human culture.  Jesus calls this “othering” nothing less than “darkness” that fills the whole body.

While i remember this moment with Buddy particularly well, i experienced it many times with other people i lived with in L’Arche.  And while i learned to love going out to places with my friends with disabilities, i never fully got used to the “stare.”  For all of those looks of fear and revulsion reminded me that i too had given those same stares to those i considered “others.”  i also had been infected with the “evil eye” before i came to L’Arche and was transformed through my relationships with core members.

But there is another way of looking that does not “cast off” but brings near in love and friendship.  Let us call this the “gaze.”  This is the healthy or single eye, the one that Jesus calls “full of light.”  It is the eye which looks at the rich young man “and loved him” (Mark 10:21), or the one which looks upon Jerusalem and weeps for it (Luke 19:41).  In his experience of encountering God in prayer, the poet John of the Cross wrote about the how God’s gaze fundamentally changed him through an indescribably mysterious love.  “When you looked at me your eyes imprinted grace in me….you have looked and left in me grace and beauty” (“Spiritual Canticle,” stanza 32, 33).

These are the kinds of eyes i found in Angela, another core member from L’Arche Cape Breton.  A deeply contemplative woman, the community had helped discern with her a calling to pray for L’Arche and the world.  In that contemplative vocation, Angela’s vision had been so transformed by God’s gaze that she could sometimes look with God’s eyes on the “other,” the person no one else could truly see.

One Sunday morning Angela was caught in the middle of a violent outburst by another core member in her home.  Although she was unhurt in the incident, the harm that Bob threatened Angela with made her (understandably) very shaken and afraid.  When the immediate crisis had passed the assistants present wondered what they should do next.  It was Angela who then said, “We should pray for Bob.”  In disbelief the assistants asked how she could do such a thing.  All she said was, “We should pray for Bob.”

Even in her fear and vulnerability Angela could gaze upon Bob with God’s eyes, seeing him not as incorrigibly evil but fundamentally as someone in need of Christ’s love.  Bob was unfortunately not able to stay in L’Arche.  But Angela’s non-violent intention of prayer for him remained a witness not long forgotten, and even became an intercession taken up by other core members in the community.

So how will we look at people with intellectual disabilities, with a stare or with a gaze?  May we as a community of God’s people learn how to receive that imprint of grace which Jesus continually showers upon us. And through the power of the Holy Spirit may we then pass on that gaze of communion and friendship to all whom society marginalizes and despises.

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The Feast of the Incarnation

Posted on January 2, 2012 by jason

“And the Word became flesh and lived among us.”  (John 1:14)

If there is something that L’Arche taught me a great deal about it is the importance of celebration.  While previously i often looked at gratuitous feasting as a waste or interruption, my time at L’Arche helped me see how essential it is to celebrate all of life.  For many of my friends with intellectual disabilities – whose lives our culture does anything but celebrates and honors – the community feasts often became the highlights of the year.

Christmas was certainly no exception.  The energy and preparations that go into celebrating the season in L’Arche are momentous and even (relatively) luxurious.  Whether it be the community’s worship or eating life, Christmas felt like a time to pull out all the stops in gratitude and joy for life, and love, and God.

Minimalist that i am, i often struggled with the gaudiness of this “materiality.”  It all seemed too much of everything: food, energy, people, work.  The hoopla felt like a noisy hindrance to a deeper reflection upon God’s radical identification with the lowliest and most vulnerable among us.  Most of the time, i secretly wished for a more “toned down” season.

Yet upon further reflection i began to wonder whether all of my friends were on to something.  Could the love that so many core members – those in L’Arche who have intellectual disabilities – shared in the festivities of Christmas not point to the goodness of creation expressed in the birth of Christ?  Is this not the mystery of the Incarnation, that God – the Almighty, Sovereign, and Omnipresent Creator of the Cosmos – would choose to embody himself in the one of us, bones, muscle and food that we are?  And by doing so, does God not proclaim once and for all how much he delights in the material and earthy works of his hands?

In the words of the Gospel of John, the Word that existed before time and was there when the world was created became flesh.  Perhaps we have heard this passage many times and no longer think about it.  But can we see something marvelously scandalous here?

The word “flesh” has had a rather torturous history in the Christian tradition.  Like the novelist Nikos Kazantzakis – most well-known for his (controversial) novels Zorba the Greek and the Last Temptation of Christ – most of the past 2000 years has been a “battle between the spirit and the flesh.”  While we hear Ezekiel speak of God giving the people a “heart of flesh” (11:19), we also hear Paul say that “those who are in the flesh cannot please God” (Rom 8:8).  While Paul uses “flesh” as a synonym for what we might call the “false self” or the “ego” alienated from God, too often it has been equated with the body.  And much confusion and harm has come as a result.

The first verses of John’s Gospel, however, tell us something very different.  Here “flesh” becomes the medium for God to enter into the world and reconcile all things to himself.  God did not choose to enter into the world solely by way of people’s “minds” but through contact with their bodies.  Jesus even makes the continually radical suggestion that “those who eat my flesh and drink my blood abide in me, and I in them” (6:56).  Far from being a symbol of the baser dimensions of the human condition, here Jesus uses flesh as the means for his most intimate communion with us.  It is as if Jesus is demanding that we have faith in his whole person, utterly divine and utterly human and material.

This is the kind of faith that so many of my friends in L’Arche relate to.  In my (limited) experience, people with intellectual disabilities want reality “with flesh on it.”  They do not wish to relate to a Facebook page but a body next to them.  Most cannot share a highly abstract theological conversation with me, but can heartily share food and drink.  my L’Arche friends usually do not pray for world peace or the eradication of poverty, but for “my friend” or “sister/brother/parent.”  People like Susan and Brian and Michael generally find the beautiful prayers of worship less inspiring than the bread and cup of communion, and the bodies of their friends by their side.

And so they love to celebrate and feast, never alone but together.  In this way, people with developmental disabilities have taught me what the church has taught all throughout  history: the life of faith can never be lived in isolation but must always be shared with others.  And not just “virtual” others but with material and fleshly bodies.  In this way we can continue Jesus’ giving of his body to us through one another.  We are the body of Christ (1 Cor. 12:27) and thus called to become bread for each other.  So many times in L’Arche i experienced how the core members truly understood this reality, and embodied Paul’s words on how the members who seem the weakest actually become the most indispensable (1 Cor. 12:22).

So let us truly celebrate this feast of the Incarnation of God as a sign that our salvation comes through the earthly and material reality that we are.  And may those prophets among us, who demand that our faith takes on human flesh, lead us in the delight and joy of matter that God has done ever since he looked at the world and proclaimed, “It is good” (Gen. 1).

 

 

 

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A Matter of Dignity

Posted on December 20, 2011 by Christine Guth

“In a powerful and inspiring book about unflamboyant heroes, Andrew Potok creates extraordinary portraits of men and women who are changing the world not just for those with disabilities but for us all.” (From the book jacket, A Matter of Dignity: Changing the World of the Disabled).

Book cover shows lone person kayaking on lakeIn A Matter of Dignity: Changing the World of the Disabled, by Andrew Potok (Bantam Books, 2002), Potok takes us along on a personal journey in which he is learning to live with a degenerative condition that is leading him into increasing disability. His quest to come to terms with his own advancing stages of blindness due to retinitis pigmentosa finds guidance from an impressive collection of mentors, whose stories he chronicles. Many of those he writes about have disabilities themselves. All care passionately  about quality of life for persons with disabilities, to the extent that they have invested years of their lives pursuing excellence in a particular aspect of improving the lives of people with disabilities.

Over the past five and a half years that I have been involved with disability advocacy through ADNet, I have experienced a slow transformation of my attitudes toward disability—my own disability and that of others. From first going public with my mental health history in a storytelling chapel at Associated Mennonite Biblical Seminary, through recognizing that my passion for disability advocacy has deep roots in my experience of oppressive stigma, and on toward realizing how much my friends with disabilities continue to teach me,  I have come to embrace and even feel thankful for the presence of disability in my life. My history of mental illness is no longer a point of shame, it is a part of the identity I claim with pride (humble Mennonite pride, of course).

How did I come to this new place, and where might I point others struggling to come to peace with their own diminishing faculties or a child’s new diagnosis? I hope that someday I may be able to piece together some of the stories that contribute to my changing attitude. In the meantime, I invite you to obtain a copy of A Matter of Dignity and learn from Potok. Through his storytelling about passionate disabilities advocates, assistive technology experts, guide dog trainers, and others, Potok shows by example that disability is not a fate worse than death.

Although Potok does not speak explicitly about faith, his stories have the power to fire the imaginations of people of faith to see the essential dignity of all people, including people with disabilities. ADNet is in the business of supporting families and equipping the church for inclusive communities. As part of that equipping, I continue to invite us all toward new understandings of disability in the church. We need to see our sisters and brothers with disabilities not as perpetual objects of charity, nor signs that someone somewhere sinned. All of us, if we live long enough, will become people with disabilities. They are—we are—indispensable, contributing members of Christ’s body, the church. Let us not miss out on all that people with disabilities have to teach us.

With all the strengths of Potok’s book, it is worth noting that some language in the ten-year-old book is no longer well accepted among people with disabilities. Rather than identifying people by their deficit,( “the disabled,”  ”the mentally ill,” etc.), many people with disabilities appreciate “people first” language, that is, “people with disabilities,” “people with mental illness, etc. Since mental illnesses account for more disability worldwide than any other disability category, I welcomed Potok’s final chapter on mental illness, though for me it did not quite make up for the absence of mental illness from all earlier chapters. Other aspects of the chapter that troubled me: Potok seems to count autism as a mental illness, ignores all other developmental disabilities, and allows family members and professionals to do all the speaking for people with mental illness. Yet these shortcomings were not a great distraction from the overarching theme of the book, the dignity inherent in persons with disabilities, as in all people.

Thanks to Don Kauffman (Newton, KS) for calling this book to my attention and sending me quotes from the book jacket. Don wrote, “Mr. Potok’s explanation helped me to understand that most of us at some point are required to deal with disabilities in our own life-long journeys.  As Susan Sontag wrote:  ‘We are all a little bit ablebodied and a little bit disabled.  The degree to which we are one or the other shifts throughout life.’”

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Making Friends with Time

Posted on December 10, 2011 by jason

“Wait for the Lord.  Be strong, take heart.”  (Songs of Taizé)

Advent is probably my favorite season of the church year.  The story  of the Annunciation – the angel Gabriel coming to meet Mary – has always struck me as a profound theological and spiritual image of the Christian life.  It is Mary, poor and marginalized girl from Nazareth, who God chooses to give birth to the Savior of the world.  By her “yes” to God, Mary calls us as a church to learn how to wait in longing and expectation for the Lord, which also prepares us to also give birth to Christ within us.  And the Gospel story shows us how this waiting was not accompanied by anxiety or fear (even if she did appear somewhat confused).  Instead we see her filled with gratitude for God, and eager to share her joy with others near and far.

It is in Mary’s confident waiting that i find so much power and inspiration.  As a culture we have a very difficult time to wait for things.  Sometimes i wonder if we even secretly loathe the idea.  Do we see having to stand in line as times of dread and annoyance?  Or do we get annoyed if our web browser takes ten seconds to load rather than five?  Our technology, the thing that was going to give us more “time” for leisure and others, in fact creates more space which we continually fill up with more tasks and activities.  Life gets faster and faster, but does that necessarily make it better?

Perhaps we want our lives to slow down.  But then we wonder how to do it.  We can feel caught up in the whirlwind that is our culture with no way to get out.  So we just “give in” to the craziness of it and cope the best we can.  Maybe we even try to rationalize it by saying (as good Anabaptists) that there is so much work to be done for the Kingdom, and therefore we must press on.  Besides, Jesus looked like a pretty busy guy from what the Gospels tell us.  Who has time to sit and around and wait when there were all those people looking for healing?

i must be honest and say that sometimes  i use this argument.  But i know that it is a sham – Jesus not only spent time just with his disciples sharing life (e.g. the Transfiguration), but Mark’s Gospel even tells us that he tried several times to go off “to a deserted place” to pray (1:35; 6:46).  Waiting for God in prayer and meeting the needs of the poor and sick were not opposite poles for Jesus, but seemed to be integrated dimensions of his life and ministry.  Do we have the courage to try to do the same?

One of the places where i was forced to work at that integration was during my time in L’Arche.  In L’Arche, life is lived slowly and deliberately.  In this way those with disabilities can not only participate in community life but also lead others in what it means to live together.  And this requires a great deal of waiting.  One of the people who taught me this the best was a man named Michael, someone who i lived in community with in L’Arche Cape Breton.

i did not know Michael well, but we were on some community committees together and so would occasionally have the opportunity to see each other more formally.  This would sometimes require me to pick Michael up at this house.  i will never forget the times – particularly on cold winter days! – when i would wait for Michael to walk from his house to the car.

You see when Michael walked, he walked slowly.  (Unless there was a line for rum and Cokes in sight!)  How many times i wanted to (and probably did) tell him to hurry up!  (Or want to physically and literally pick him up myself!)  But instead i (usually) waited for him to get there on his own time and in his own way.  This always felt like the way i could truly honor Michael simply for who he was rather than what i wanted him to be.  Yet i believe that he also taught me, and i would guess many others, the practice of learning how to wait for another in openness of heart.

This even included the journey of Michael’s death.  The community had walked with him for about a year while his health deteriorated, always trying to wait and be present with Michael.  And in the last few days as we sat with his family by his bedside, he taught us to wait for him as he passed over into the arms of God.  For many of us this felt like a time of great sadness, yet also a time of profound gratitude for the gift of Michael’s life and all that he taught us.

In this way Michael exemplified what L’Arche founder Jean Vanier meant when he writes in his book Community and Growth that being part of a community requires being a “friend of time” (124-5).  Without this kind of patience community becomes frustrating or even intolerable because it seems that “nothing” happens.  Yet only by learning how to wait for another can we learn how to wait for God, and realize that the salvation of the world is God’s job and not ours.  Our task is to be faithful to the relationships which will sustain and transform us.  In this way time no longer needs to be our enemy – constantly living to “beat the clock” or “turn back the clock” – but can be our friend who leads us to growth and wholeness.

This is what the story of the Annunciation and the whole season of Advent can lead us toward.  And i will now always think also of Michael in this time of waiting for the birth of Jesus.  He indeed was one of those who helped me to become a “friend of time” and thus helped me prepare for the one who comes in the “fullness of time” (Gal. 4:4; Eph. 1:10) to usher in the Kingdom of peace, joy, and luxurious hospitality.

 

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