Life in Community

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Life in Community

The Greatest Measure of a Society

Recalibrating my Views on Disability

January 31, 2020 by

My mother had more friends than anyone I’ve known. She was a spirited conversationalist, a raconteur. As kids we never tired of hearing her recount how she, “a little Jewish girl from Brooklyn,” stumbled into the Wheathill Bruderhof in England in 1953 and knew instantly that she was home. Visitors to our dinner table found themselves telling secrets, drawn out of themselves by her natural interest in their stories. She read voraciously in many genres: Dostoyevsky followed by Agatha Christie, J. D. Salinger, The New Yorker. And the poetry! Blake, Wordsworth, Rossetti, Frost – all generously represented in her huge spiral-bound collection. Did I mention Hopkins? She loved Gerard Manley Hopkins.

And yet my brilliant Mom spent the last fifteen years of her life in the grip of dementia and progressive physical disability. Mom and Dad lived next to us and we watched, dismayed, as her mental state declined. There’s no way to hide the ugliness of dementia and the pain it inflicts on the family, and I won’t try. Only the gradual nature of the descent can be called merciful, but even that is meager comfort. What I can say is that the experience of caring for her taught me something about community – about what it means to be human, and what it means (or doesn’t mean) to be disabled or weak. Most of this I learned from watching my wife and daughters bear the increasing load of care that accompanies this particular pathology.

 EllenEmbedMain

My mother in better days. Inexplicably, she loved winter, even in her last years.

That was my experience with disability close to home. But my work with Rifton over the last twelve years has provided me a wider lens through which to see the effects of disability on society. Rifton makes adaptive equipment for people with physical disabilities, and because my role has been primarily focused outward – with customers, caregivers, and clinicians – I’ve heard hundreds of stories. I know about the loneliness that accompanies the special needs family, the unrelenting fight against insurance companies, and the exhaustion that sets in after years of home care. And I know a bit about the painful choice that some families make to place their child in institutional care, unable to cope at home.

For all the gains we’ve made in the United States toward inclusion and community care, we still have far to go. Those with disabilities – and children and the elderly for that matter – are still too often viewed as a burden to be carried by society. Yet my own experience tells me that when we accept them as a gift from God who have a purpose to fulfill, we are the beneficiaries. God’s strength is made perfect in weakness, the Apostle Paul was told (2 Cor. 12:9). I believe this is true not just for weakness in our own bodies; the same holds true for a community and our whole society. Those among us whom we perceive as weak can reveal to us God’s power, if we allow them to. Even more, they will open our eyes to their inherent dignity, and, sometimes, even the blessing that disability obtains.

Rifton Patient

Those whom we perceive as weak can reveal to us God’s power if we allow them to.

To illustrate my point, there’s “Christine.” Since our youngest child left home, my wife and I have been providing care to a middle-aged single woman who joined our church fifteen years ago. Christine has multiple disabilities, both physical and intellectual, coupled with a history of equally crippling mental illness. Earlier in life she functioned independently, but her disease is progressive and her dependence grew. Today, by most standards, Christine would be seen as a burden. Even in our community she presents a considerable challenge. She needs a constant companion to meet her needs, and she tests her caregivers’ charity in countless ways. But I have come to believe – how, I still can’t quite articulate – that a community like ours is blessed by Christine in ways we can’t always see. The six or seven sisters who provide the bulk of her care often have bleak moments, even days, when no blessing is apparent. But their patience will be rewarded, of that I am certain. I believe they will also look back one day at lessons learned and thank God for Christine.


It was a wise person who once said that our society will be measured by how we care for our weakest members.

It was a wise person who once said that our society will be measured by how we care for our weakest members. After my own experiences with Mom, with Rifton, and with Christine, I think I can take that a step further: I don’t think our community will be all it can be unless we find a way to keep our weakest members – our children, our disabled, our elderly – in the mainstream of our communal experience; if they are sidelined or segregated, our community will be stifled. We will not experience the fullness of life God intended for us, with all its color and noise and, yes, pain. We can’t measure their contribution by any conventional yardstick; to do that requires a scale we haven’t yet calibrated. It’s the same measure Jesus used when he said, “Suffer little children, and forbid them not to come unto me: for of such is the kingdom of heaven,” (Matt. 19:14) and when he said that the last shall be first.

The rest of us – we “contributors” – are left to follow, hopefully.

 


Joe Keiderling lives with his wife Deborah at Woodcrest, a Bruderhof in Rifton, New York.

 

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