Two deaths, one love

Jean Vanier died on May 7th.  He was a gentle presence who moved people to significant action and life changes.  I was privileged to hear him speak about twenty years ago in Southern California.

Vanier founded L’Arche and Faith and Light,  now more than 1,500 communities in which “people with and without intellectual disabilities” live more as families than as professional caregivers and patients.  As Vanier said of L’Arche,

Genuine healing happens here, not in miraculous cures, but through mutual respect, care, and love. Paradoxically, vulnerability becomes a source of strength and wholeness, a place of reconciliation and communion with others.

He translated family-style care giving into “institutions,”  encouraging vulnerable amateurs to practice companionship and respect rather than technique.  His approach has been replicated in communities around the world, and to needs beyond intellectual disabilities.

Today…

Bill… I went to the conference center at the community agency that is the home for our son with autism.  They were holding a memorial service for Bill, one of the four other men with whom our son shares a group home.  Bill died late last month.

The seats of the ample conference hall were filled.

The current staff and residents, including our son Joey, were all there.

Other employees of the agency were there.

Other recipients of agency services came.

Former employees who knew Bill, including the Pastor who led the service, were there.

When given an opportunity to share memories of Bill, there was no lack of speakers, prepared and impromptu.

A message that echoed through the memories recalled the values that Jean Vanier carried in his work and that many caregivers who’ve never heard of him carry in theirs:

We’re not staff and clients, we are more like family.

There was a slide show of Bill’s life and a display of his favorite things.  The whole event reflected “person centered care,” valuing Bill not only as part of the community, but as an enrichment of it.

Bill’s warmth – manifested notably in a thunderous Hi! and sweeping wave of his hand to group home visitors  – was a gift to our family as we went through the emotional time of transitioning our son into his new house.  We trusted the staff and liked the house’s set up, but to experience immediate warmth like Bill’s was an extra that softened the big change in our family’s life.

Bill’s loved ones donated his belongings to the home to use as needed, and Joey inherited a recliner chair that he’d coveted and attempted more than once to occupy.  We will still think of it as “Bill’s chair.”

Jean Vanier, known around the world, and Bill, loved locally, merge into one.  Both reflect a community of love – relationships entered into vulnerably – as the model for care giving.

I came away from Bill’s service red eyed but uplifted.  The community is diminished, temporarily, yet lives in love.

Whatever their gifts, or their limitations, people are all bound together in a common humanity. Everyone is of unique and sacred value and everyone has the same dignity and the same rights.  (Jean Vanier)

…we are to grow up in every way into him who is the head, into Christ, from whom the whole body, joined and held together by every joint with which it is equipped, when each part is working properly, makes the body grow so that it builds itself up in love. (Ephesians 4:15-16)

Hi!  (Bill Wilde)

 

Quicker to hear, slower to speak

In Raising a Child With Autism, I wrote,

Joey is not what we made or failed to make him.  He’s always carried strengths of his own that we can admire as precious gifts from God.

More people with autism are expressing their own points of view.  For caregivers, these can be challenging but are precious to our efforts to provide care that is loving as well as “effective.”

Dan Jones is an adult with autism who shares his experience and insight via books and articles.  In a blog piece on Applied Behaviour Analysis, he praises ABA for providing tools that give people with autism behavior choices in school, the workplace, and other social settings.  At the same time, he raises a caution,

Another issue with ABA is that it is just ‘identify the behaviours that we don’t want the child to do and change them, identify the behaviours we want the child to do and get them doing those behaviours’. As mentioned, it misses the ‘love’ element, the respect for the child and what they are communicating by their behaviour and their inner world and emotions.

Care giving needs that love element.  There are all kinds of efforts we apply to teach skills and eliminate unpleasant and even dangerous behaviors, but we should not overlook the day to day relationship exchanges that can help those in our care express and embrace things that enrich their lives.  In another bit of Raising a Child With Autism, I recall how

Several doctors praised us for our son’s emotional connection, affection and happiness. Those who live with autism, whatever they might feel within, are challenged in their ability to express it and seem aloof if not completely detached from the feelings of those around them.    We didn’t have special knowledge or strategy to cultivate Joey’s warmth toward us. We just stayed close to him early on.

Melissa sang to him on days when he didn’t seem to hear a note; as a young adult he can enjoy an entire musical at the local playhouse.  We talked to him as though part of our conversations even when he didn’t make eye contact or walked away; now he can attend social events even if he just stands smiling on the edge of the party.  We made his place at the dinner table even when he had the habit of taking a bite and then running a repetitive pattern around the house (we would shrug and say, “Hate to eat and run…”); now he eats in restaurants.

There’s a nugget of spiritual insight in play here.  In the New Testament, the Letter of James encourages those who would be loving people to

…be quick to hear, slow to speak… (1:19)

Those in our care might not be able to express their hopes and disappointments, joys and hurts, dreams and fears with words.  But their’s is a language of the heart that can be shared over time if we slow our anxious antics enough to hear it.