Keeping the Balance - for families

As parents of children with disabilities, one of the vulnerabilities we face is the prospect of personal isolation, a thinning out of ordinary relationships to the point where our family’s circle (and ultimately that of our child) narrows down to service providers and 'others like us' – other families who have children who live with disabilities.

This ‘narrowing’ stems from four sources:

First, it is an unhappy fact of contemporary North American life that people remain uncomfortable with disability in general.  People may be particularly uncomfortable when someone close to them is ‘struck by’ a disability. We ‘don’t know what to say’; we ‘don’t want to interfere’, and we are afraid that if we open up communication we will touch a thread of sorrow that may be uncontrollable:

Fear is the mind’s reaction against the inherent generosity of the heart.  Because the heart knows no bounds to its giving, the mind feels called upon to define limits.

-- Ram Dass

Second, because our society is uncomfortable, the family is likely to feel uncomfortable about the prospect of ‘being a burden’ to their friends; we become reluctant to ‘impose’, to ask our friends to extend practical assistance.

Third, the family may find themselves overwhelmed in terms of time, energy and attention by the child’s specific needs and the new demands of engaging with the service system.  Any parent can tell you that caring for a young child seems to take up all of your time.  Caring for a child with a significant disability is likely to be even more demanding, and the parents may find themselves swamped with disability-related appointments, meetings, support group gatherings, and so on.

Finally, in North America, family and community ties are fragmented at the best of times.  Our society prides itself on being highly mobile, independent, ready to ‘move on’ at the slightest whim or to relocate quickly in a search for solutions to economic, social or family problems. 

However (and this is a big however)…

If it is true that the quality of our child's life (and his family’s life) will be greatly enhanced by the presence of a large circle of people who know him, love him, aren't afraid to touch him or to be touched by him, and know that they will be part of his future and he will be part of their future, forever...

If it is true that our child’s opportunities will be greatly enhanced by long-term, thoughtful, on-purpose connections with many ordinary citizens – people whose lives are anchored in the larger world, the broader cultural, economic, congregational, and social environment...

If it is true that our child's development can be greatly enhanced by loving and enduring connections to other children and adults who help us define our identity – who shape our understanding, expectations, hopes, social expressions, etc....

Then it is important to focus at least as much of our effort, thinking, learning, and personal action in the direction of 'the boundary with community' as we invest in 'the boundary with the service system'.

What does this mean (and not-mean) in practice?

Working on 'the boundary with community' doesn't mean excursions to McDonalds.  It means an intentional pattern of invitation, conversation, deep listening, dreaming together, reflection, occasionally repentance and forgiveness, and always celebration.

Working on 'the boundary with community' doesn't mean recruiting community members into the world of disability.  It means remembering (which is another form of conversation) that we are all part of a larger world, and remembering together that a great community systematically identifies, mobilizes and celebrates the gifts of every one of its members.

It doesn’t mean just yearning for connection.  It means taking the difficult step of asking for involvement.  It means coming to terms with the fact that true friendship is active and that it is woven of threads of joy and threads of sorrow. 

It means taking the very difficult step of acknowledging our own self-isolating behavior.

It means recognizing and consciously resisting the powerful gravitational attraction of formal service system.  We see a pattern of professionals and other parents sending the message that "The most important work you can do as a parent is to get skilled at finding services, using services, advocating for services" – a regrettably consistent emphasis in early intervention programs, child guidance clinics, diagnostic and treatment centers, advocacy associations, and disability support groups.

Of course these conversations are difficult at first.  It is difficult to say to our old friends, "I need you more than ever now".  It is difficult to say to our church, "More than ever, we’re called to be community for each other".  The good news is that people are yearning to be asked.  So often we’ve heard people say, “We wanted to do something, but we didn’t know what to do”. 

Some time ago we developed a graphic of a 'family pattern' – an intentional pattern of thought and action that, ideally, should be 'there' for any child, in any family:

As we begin to navigate the boundary with the community (Faye suggests calling it a shoreline), we make a discovery.  Beyond the ‘sweet places’ of friendship and extended family life, there are other places in the community that can be particularly welcoming and fruitful.  Think about the places where people feel most deeply valued and deeply ‘at home’ – our churches, synagogues and mosques, places where a shared culture, or a shared passion for justice, for the environment, or for creating beauty draw people beyond the usual boundaries of age, economic status, and even disability.

If we pay close attention, we may discover that this is not only a place of hospitality and welcome, it is a place of abundance.  The congregation of a small church touches dozens, perhaps hundreds of other ‘places’ in our community.  Harry goes to work at the tractor plant. Tom prints the local newspaper. Laurie’s father belongs to a group that rebuilds antique airplanes.  Lillian is connected with the Swedish Cultural Society. Jack plays a great bluegrass banjo and has dozens of good friends in the music community. 

One of the gifts that these friends can offer is to look for our child’s gifts, delights, and interests, to introduce him to people whom they already know and trust, and build bridges to the ‘places’ where they already have a presence – places where those gifts and interests will be welcomed and celebrated. 

We live in an abundance of connections.  However, far too often we turn Harry, and Tom, and Lillian into fund-raisers for the service system, or recruit them into volunteer roles that are mere reflections of traditional ‘service’ roles, and we ask them to leave their real identities at the door.  We move from abundance to scarcity.

Our friend John McKnight has shared some ways of helping us recognize some of the sweet places in our communities.  John reminds us to look for places…

·        Where people come together by consent, rather than by control;

·        Where relationships are based on affiliation and shared interest, rather than exchange;

·        Where people are always identifying, inviting and mobilizing one another’s gifts;

·        Where the culture expresses itself in the form of stories, rather than data;

·        And where ‘we hear people singing’ because people are making music, rather than consuming music, making art rather than consuming art.

The reality is that even with children who do not live with disabilities, the family isn't 'big enough' to do everything alone.  Our highly mobile, fragmented society is living with the consequences of fragmentation as families become more and more separated from extended family, friends, congregational life, and community life. 

This is a far more pressing reality when a child lives with a disability – the ‘nuclear’ family simply isn't big enough.  We may try to fill the gap with 'services', but the truth is that our sons and daughters need the ongoing commitment, support, devotion and connections that can only be offered by true friends, and which can never really be 'delivered' by formal services.

Wendell Berry reminds us:

We hear again the voices out of our cultural tradition telling us that to have community people don't need a 'community center' or 'recreational facilities' or any of the rest of the paraphernalia of 'community improvement' that is always for sale. Instead, they need to love each other, trust each other, and help each other. That is hard. All of us know that no community is going to do these things easily or perfectly, and yet we know there is more hope in that difficulty and imperfection than in all the neat instructions for getting big and getting rich that have come out of the universities and … corporations in the past fifty years.

-- Wendell Berry, Home Economics

Just to be clear…  We are not saying that services are ‘bad' or irrelevant.  We are simply saying that they cannot be a sufficient foundation for a good life.  We need to do everything we can – which means taking action – to keep our lives in balance, our relationships in balance, and our hearts in balance.  Remembering to pay close attention to the shoreline with community and having the courage to call upon the bonds of friendship can play a big role.