Down Syndrome and reading the language of the body

This note (from facebook, used with permission) is from Fr. Vincent Daily, brother to my friend Eileen Daily and both of them sister to Connie Daily, who has DS.  Connie is an adult, had a bad case of pneumonia last week, and is still in recovery...and Fr. Daily picks up the story there:

Just left my sister at the rehab hospital. She's got a roommate for a few days. Anyway, Connie just went out of her way to go over to this person whom she has never met ... Extends her hand and says, "Hi, I'm Connie". The poor lady says, "Sorry I'm not better company, I'm going through chemo". Connie hugs her and says "it's ok"... Con sat next to her for a few minutes holding her hand. The poor lady had a beaming smile on. An occasion of grace.

As I do my night prayers, I just thank God for my sister's greatness of heart and being an example of what it means to a genuine Christian.

This made a lot of people smile, but it's more than a nice story.  It reminds me of a question I raise in the manuscript, where I focus on what we think of the spiritual capabilities of people with Down Syndrome:

Vanier prods us continually: do we really believe in the holiness of people with disabilities? If we want to see a “sign” of witness that usually holds deep meaning to Catholics, there is a small order of religious sisters in France called the Little Sisters Disciples of the Lamb. It is a small contemplative community of nuns who have Down Syndrome in community with other nuns who do not. From their own literature:

Guided by the wisdom of St Benedict, we teach our little disabled sisters the manual labour necessary for their development. We live poverty in putting ourselves at their disposal. With them, we share the work of everyday life.

The office, adoration and the praying of the rosary are adapted to their rhythm and their capacities. In a spirit of silence, our prayer feeds every day on the Eucharist and on the meditation of the Gospel. ….

“We follow every day the ‘little way’ taught by Saint Therese; knowing that ‘great actions are forbidden to us’, we learn from her to receive everything from God, to ‘love for the brothers who fight’, to ‘scatter flowers for Jesus’, and to pray for the intentions entrusted to us.”^[i]

            It is striking, and produces a smile, to see the pictures associated with this small group of consecrated women: one never sees women with DS in a full habit. The description of their life together reminds one a bit of L’Arche. But perhaps the most salient reactions I have had are when I share this group with other Catholic women who have children with DS, or love someone with the diagnosis: they sometimes break down crying, with comments such as: “I would wish this so much for my daughter/niece/friend. I know she is so close to God. Why don’t other people see how holy these people can be?” Granted, a habit does not make one holy. And choosing the religious life needs to be a free choice, so I assume they practice ways of discernment that make certain that this calling is from God and a truly free choice for these women. But the habited nuns with DS stand as a stark visual reminder of the universal call to holiness. That indeed, regardless of any limitation, we are called to a spiritual infinite—we are called to union with God.

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[i] “Little Sisters of the Lamb,” Laodicea, Jan 11 2010, http://exlaodicea.wordpress.com/2010/01/11/little-sisters-disciples-of-the-lamb/. The order was established in 1985.

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If we do believe in the holiness of people with DS, that they bear witness to Christ through a theology of the body as well as anyone else, the first story should not surprise anyone at all.  Indeed, too much surprise should convict us.

 

What would a conversation between John Paul II and Jean Vanier be like?

Some welcome news this summer: Jean Vanier, the founder of the L'Arche intentional communities for people with and without intellectual disabilities, has been awarded the Pacem en Terris award (previous winners: Martin Luther King, Jr., Dorothy Day, Lech Walesa, etc.).

Jean Vanier pictured in 2008 (Photo: CNS)

 Jean Vanier, founder of L’Arche, an international federation of communities where people with and without intellectual disabilities share life together, is to receive the Pacem in Terris Peace and Freedom Award.

For the first time in its history the US-based award is being taken overseas, to France, where Bishop Martin Amos of Davenport, Iowa, will present the award to Vanier in the village where he founded L’Arche in 1964.

The award honours Pope John XXIII and commemorates his 1963 encyclical letter Pacem in Terris (“Peace on Earth”)....

(More of the news article here.)

I have joked to some people that the third chapter of this manuscript, on the sign of the impaired body, is pretty close to planting John Paul II and Jean Vanier in the same room and watching them have the conversation they should have had when both were alive.  They did meet--but as far as I know, no in depth conversation occurred.  Vanier's way of gentleness and openness to the other, and his focus on being an embodied ecclesial community, is lived out in L'Arche communities worldwide--and has points in common with the spirituality and phenomenology of the Theology of the Body.  Vanier and John Paul II both began as students of philosophy, and one sense that although they may be on different pages, they play from the same book.

A clip from the manuscript on Vanier and the Theology of the Body:

Vanier (and others) exemplify the phenomenological attitude when they affirm that  L’Arche is “a sign, not a solution.”....

The sign of  L’Arche fleshes out the shared reality of limitation and weakness and the common reliance on the unlimited strength of God, and points to the divine call to love as God loves. The mission of  L’Arche, as stated in its charter, is simultaneously ambitious yet humble: “Our mission is to create homes where faithful relationships based on forgiveness and celebration are nurtured. We want to reveal the unique value and vocation of each person, and to live relationships in community as a sign of hope and love.”^[3] The process of living in community together involves acknowledging weakness, and confronting fear with the concrete power of love. The end of the lived experience is celebration and joy: not that every moment is joyful, or a celebration, but that the lived experience is a real gift of life shared.

But Vanier also says that community is not achieved but received, not a goal but a gift. Living together, guided by the above mission, opens our hands to receive that gift. And in doing so, he undercuts what I think can be a subtle temptation: the purpose of welcoming people with disabilities into small community, into the Church, into our families, is not first and foremost to witness. It is a response to a call from God to love as God loves. It requires a “spiritual seeing,” as Scheler would say, that all human beings are our brothers and sisters, called in Christ to be adopted sons and daughters of God. In doing so, Vanier clarifies what seems to be a temptation among first readers of the Theology of the Body literature: as central as the doctrines of Incarnation and incarnation are, the audiences are not about seeing the body of oneself or another in isolation. It is about the visible lived experience of call to love and response to love, of relationship to God and others. It is about the divinely ordained witness to love. This is seen in a powerful way by the union of a man and woman in sacramental marriage, and as John Paul II argues, was given to us at the dawn of creation as a sign of how we are called to be in union with God. I argue this can be seen in a woman giving birth, yielding to the work of the Holy Spirit, living out the “pre-given language of self-giving and fruitfulness” through answering the call to motherhood.  The relationship of those who are obviously impaired to those of us who are less obviously impaired gives us practice in loving one another without preconditions, in accepting our identity as beloved children of the Father, and in sensing how our mutually sensed limitation and weakness points to God as our fulfillment. The sign is fully manifest in the finite human being’s relationship to the infinite God and each finite other.

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[1] A good summary of this notion is provided by John Swinton, in the preface of Living Gently in a Violent World, 17.

[2] Living Gently in a Violent World, 34.

[3] The Paradox of Disability, 60.

Congratulations to Vanier and L'Arche for this well deserved award!

A Flattering Review (Blush)

Chelsea Zimmerman, the young writer behind the blog "Reflections of a Paralytic" and editor in chief of Catholic Lane, offered a very kind and positive review of the manuscript as a reflection she used for World Down Syndrome Day this year.  She also quotes the manuscript quite a bit, so if you want a sneak peak, please, click here.  Some of her commentary:

...Then she does a masterful job of going deep into the history of the eugenics movement of the late 19th, early 20th century focusing not just on Europe, where this movement was brought to its natural and horrific conclusion, but also spending a great deal of time, once again, on how eugenic thought and practices were common and widespread throughout the United States. Something that is often forgotten when we think about the history of eugenics.

I hope her book gets published for this chapter alone....

(She also offers a snippet in a blog post for Good Friday here.)

I especially appreciate Chelsea's kind words because she is close to the material discussed, Catholic to beat the band, a Theology of the Body enthusiast, and a very fine writer.  Thanks, Chelsea.  It means a lot to hear positives about the argument and presentation from a writer such as yourself.

Corpus Christi and the Theology of the Body

A little late for the feast of Corpus Christi, but reflections on the eucharist are always on time....

From the the chapter on impairment as sign, in a reflection on the Incarnation as love, gift, and self-limitation of God:

...An even more exacting reality is the Eucharist as the chosen self-limitation of God. As modern desert father Carlo Carreto said, “Either Christ is a raving madman, or He is truly omnipotent and merciful Love, who has found the most direct road to our hearts, a road that will not frighten or scare us, a road that is as simple as could be.” Sharing his very life—body and soul, humanity and divinity--through the humble, sustaining consumption of transubstantiated bread and wine is as divinely self-limiting as one can possibly imagine. But do imagine, as Carlo Caretto does, what that tells us about God:

Why do you find it strange that I should have wanted to become bread through love?

Have you no experience of love?

When you have loved, really loved, have you not wanted to become bread for your beloved? …

You can argue about the Eucharist as much as you like, but on the day love really takes hold of you, perhaps you will understand that Jesus is not a fool or a madman.

To be able to become bread! To be able to nourish the whole world with his flesh and blood!

I am terribly selfish and fearful when faced with suffering, but it I could become bread to save all humanity, I would do it. If I could become bread to feed all the poor, I would throw myself into the fire at once.

No, the eucharist is not something strange: It is the most logical thing in the world, it is the story of the greatest love ever lived in the world, by a man named Jesus.*

If we cannot understand the eucharist through the strange logic of love, we cannot understand the incarnation. The eucharist is a natural extension of the Incarnation of God. It is also an extension of the law of love: “You shall not … stand by idly when your neighbor's life is at stake” (Lev 19:16).

If love is to offer oneself to the other, the Eucharist makes perfect sense. The hermeneutic of the gift reaches its pinnacle in this reality, and it is why we organize our entire faith around it. The law of the gift is presented, taught, and realized in our offering and participation in the Eucharist.


*  Carlo Caretto, The God Who Comes (Maryknoll, NY: Orbis Books, 1974), pg. 115-6.

What does it mean to be human? Look to Christ--not the prevailing "cult of normalcy"

Antonio Ciseri, Ecce Homo

Reynolds offers pointed analysis on the touted benevolence of tolerance and assimilation, which can “[grant] differences a share of the public space only so long as they do not disrupt or cause inconveniences to a dominant group’s way of life.”^[1]  That doesn’t mean all tolerance is bad.  But it does mean that when tolerance becomes the prime ethical law, there is an inevitable consequence: toleration is granted by those in power, that is, those who set the identity of the group.  Reynolds doesn’t hold back: “Normalcy operates as a cultural system of social control.  On one account, it is simply a way of ordering and bringing meaning to the everyday world shared by a group.  It is unavoidable and itself good.  There is, however, an insidious undertow that accompanies it, working to draw all into a certain caste or type….To state it plainly, the 'normal’ is relative to a group’s values and aspirations, and conversely so, what is attributed ‘abnormal’ (disease, disability, etc.).”^[2]

The cult of normalcy is a real challenge, because we human beings are by nature social beings: we want to belong.  The Theology of the Body audiences are structured on the very idea that “it is not good for man to be alone.”  As such, we are created with a powerful desire to belong to another.  When children are separated from consistent caregivers at a young age, when their belonging is thwarted, the evidence is overwhelming: they do not learn to attach, and they do not thrive.  Basically, they die a slow death less because of lack of food or shelter, and more because they do not belong—the cult of normalcy has made no room for them.  They grow in an environment is not trustworthy, and they respond by withering and dying.^[3]  In a (sometimes) less dramatic example, we see the incredible formative influence of peer pressure--and not just in junior high school.  We see the giddy rush to identify ourselves through social networking’s circles, friends, and followers.^[4]  We must belong, and crave to find our identity through a social group.

Hauerwas: “Christian humanism is determined by the Father’s sending of the Son to be one of us. So humanism must always begin with Jesus’ humanity. When that isn’t the case…compassion becomes a way to say certain people would be better off dead.”

There is a way to avoid the social temptation to define reality through normative groupings and the extension of tolerance, a way given to us in Scripture and revelation: we can look to how God defines what it means to be human through the revealed humanity of Jesus Christ.  And if one thinks that to speak of impairment and disability makes no sense given the life of Christ, one needs to look more closely at both his ministry and the reality of the incarnation and crucifixion--allowing those realities to inform how we learn to see the present.^[5]  It is only then that we can release the impulse to belong from the bondage of the cult of normalcy, and place it where it was meant to be. 

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[1] Ibid.

[2] Ibid., 48.

[3] There is a persistent urban legend about a mid-20^th century Russian experiment that involved institutionalized infants being raised without any human touch or interaction, and half of the group dying as a result.  The 1998 Human Rights Watch report “Abandoned to the State: Cruelty and Neglect in Russian Orphanages” indicates the fabled “experiment” is uncomfortably close to the ongoing truth for special needs children in institutions: children (and later adults, should they live that long), left in cribs all 24 hours of the day, only fed and changed.  However, the story of the experiment likely came from Harry Harlow’s experiments in social isolation of rhesus monkeys, in which isolation left the young monkeys severely disturbed.  The 1960s studies, which would be considered unethical science today, are used to help understand the experience and behavior of children who have been abused or have suffered neglect.  Harlow HF, Dodsworth RO, Harlow MK. "Total social isolation in monkeys," Proc Natl Acad Sci U S A. 1965.

[4] Google plus, facebook, and Twitter.

[5] To quote Hauerwas: “Christian humanism is determined by the Father’s sending of the Son to be one of us.  So humanism must always begin with Jesus’ humanity.  When that isn’t the case…compassion becomes a way to say certain people would be better off dead.” Hauerwas and Vanier, Living Gently in a Violent World: the prophetic witness of weakness, 53.