From the bookshelf: Disabled man's life told with love, candor

Posted: Thursday, January 27, 2005

Onward, Crispy Shoulders: An Extraordinary Life with an Extra Chromosome

By Mary Haakenson Perry

Wizard Works


Many Alaska homesteaders have been profiled in print, but "Onward, Crispy Shoulders!" stands apart.

This humble little book chronicles the life of Jim Haakenson as told by his sister, Mary Haakenson Perry. Jim had Down syndrome but, with the aid of his loving family and supportive small town, led a happy and, by any but the most cynical standards, successful life.

The title and several cute anecdotes come from his imaginative mangling of the English language and misunderstandings of song titles.

Born in Anchorage in 1945, Jim was the first of seven children born to Lionel and Esther Haakenson.

At the time his condition, then called Mongolism, was a taboo topic. The nave young couple became progressively more concerned as their subsequent babies matured and caught up to their eldest brother in developmental skills. Yet professionals offered them no information or assistance. They had no idea what was wrong until they accidentally overheard two doctors discussing Jim when he was 3 years old.

When they took him to a pediatrician in Seattle, the specialist's advice was to put him in an institution and forget about him.

From the viewpoints of both the family and our own, more inclusive times, the attitudes of two generations ago seem cruel.

Mindful of how little help their parents received, Perry provides frank and straightforward descriptions of Down's Syndrome's origins and effects.

The Haakensons, horrified and angry, took the boy home to carry on raising him alongside their other children, teaching him patiently whatever skills he could handle. He grew up cheerful, fond of music and animals and determined to participate and help others.

Much of the story describes their home life, seen through the rosy hindsight of nostalgia. Scenes of the family gathering after dinner to sing hymns with Jim's enthusiastic, if off-key, participation, evoke a unique mood — kind of Norman-Rockwell-meets-special-education.

The illustrations, selected black-and-white family snapshots, reinforce the book's homey feel.

In 1955, the Haakensons moved to a then-remote homestead near Anchor Point. Perry's description of the spring move into a tiny, dank cabin is a perfect portrait of the times.

"It was mid-May, so breakup was well underway," she writes. "Breakup is a time of year that Alaskans anticipate with great ambivalence. We welcome it as the beginning of the end of winter, but dread it for the havoc it wreaks on our lives: rivers flood, houses moan and sag, and roads — well, roads have been known to disappear."

Much of Jim's upbringing was classic small-town Alaska. He had his moose encounters and took over the chores of caring for the family cow and chickens, while his siblings helped their parents run a summer setnet on a Cook Inlet beach. He was always active in family affairs and his church.

As his siblings passed him in skills and moved out into the world, he stayed with their parents and filled his lonely hours with parades, sing-a-longs, sermons and even arguments with imaginary playmates. But he resolved to follow his brothers and sister into town to pursue a career. How he succeeded is one of most remarkable parts of a remarkable life story.

Author Perry writes with a sister's intimacy, her fondness for her brother and the rest of her family shining through every page. She portrays Jim as a complex and loving person with strengths, weaknesses and sincere emotions.

Although she fills her narrative with sweetness, she does not sugar-coat it. We cheer when Jim, through his patience and perseverance, masters skills such as riding a bicycle or counting the eggs from the henhouse. We sympathize when he fails, as when his little sister determined to school him:

"Sadly, I soon found that good intentions were not enough to make my dreams of teaching Jim to read come true," she writes. "His speech challenges made the phonetic approach unusable, so he learned only words he could recognize by sight. Soon he began encountering words that were too similar in his eyes, such as 'family' and 'funny;' he was unable to distinguish between them, and we didn't know how to help him past this snag."

The book has its sad passages, especially at the end when his octogenarian parents struggled to continue caring for Jim as his health disintegrated.

Yet the overall effect is uplifting. Friends and family found Jim an inspiration for the childish delight and innocence he carried throughout his life, and for his devotion to helping others by taking on as many tasks as he could.

"All these chores were simple, but when Jim saw that he was able to do them, he went after them and made them his own," Perry writes. "Many of us have the ability to do much more, yet we leave our talents untapped, focusing instead on what we can't do, rather than finding out where our strengths lie. ... In spite of his limitations, he gave all he had, willingly, with all his heart, and considered himself privileged to serve."

Jim's story, buoyed by his sister's fluid and witty narrative, is a page-turner. Brief and upbeat, "Onward Crispy Shoulders!" is a heartwarming tale that reminds us of life's true priorities. It is a wonderful gift for anyone whose life has been touched by Down syndrome, and an entertaining read for all.

Shana Loshbaugh is a writer and former Clarion reporter who now lives near Fairbanks.

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