The first web post is about a ministry to young people with disabilities. Featured is Sarah, a child who is developing her abilities at the Al-Kafaat Foundation in the country of Lebanon. Sara’s story and Al-Kafaat can be found on Page 33-35 of the June 2011 edition of The Word Magazine, which is published by the Antiochian Orthodox Christian Archdiocese of North America: Al-Kafaat: Giving People with Special Needs the Ability to Live, by Andrew Dalack
Grasping for straws is easier;
You can see the straws.
This most excellent canopy, the air, look you,
Presses down upon me
At fifteen pounds per square inch,
A dense, heavy, blue glowing ocean,
Supporting the weight of condors
That swim its churning currents.
All I get is a thin stream of it,
A finger’s width of the rope that ties me to life
As I labor like a stevedore to keep the connection.
“From “Breathing”, a book of poetry by Mark O’Brien
Mark O’Brien, poet, journalist and inspirational voice in the movement of disabled people to lead independent lives, died early Sunday morning, July 3, in his home in Berkeley, Calif. Mr. O’Brien was 49 years old.
Born in Boston and raised in Sacramento, Calif., O’Brien was six years old when he contracted polio which left him paralyzed from the neck down. At the time of his death, he was one of some 100 polio survivors in the United States who still used an iron lung to breathe. The 1997 Academy Award-winning documentary, “Breathing Lessons,” directed by Jessica Yu, described O’Brien’s long struggle to escape hospitalization and his often comic determination to live on his own and work as a writer.
In 1978 O’Brien moved from Fairmont State Hospital to Berkeley, after being accepted as a freshman at the University of California. He became a familiar figure on the streets of Berkeley, navigating his motorized guerney between the campus and his tiny apartment which housed his iron lung.O’Brien received his BA in English literature in 1982 with the support of note takers, home health-care attendants and the then-fledgling Center for Independent Living. After repeated efforts, O’Brien gained admission to UC’s Graduate School of Journalism, helping to set a precedent for severely disabled applicants to state universities. Although a serious health setback prevented him from pursuing his graduate degree, O’Brien began his career as a journalist with the publication of an essay on what leading an independent life means in Co-Evolution Quarterly in 1979.
Initially, he composed his pieces by dictation, then he learned how to type with a mouth stick, first on an electric typewriter, later on a word processor.His first collection of poems, “Breathing”, was published by Little Dog Press in 1990. O’Brien considered it one of his proudest accomplishments. He completed two later volumes of poetry — “The Man in the Iron Lung” (1997) and “Love and Baseball” (1998), both published by Lemonade Factory, an independent small press he co-founded in Berkeley with Susan Fernbach..A long-time editor of Pacific News Service, O’Brien published essays, book reviews, news stories for the San Francisco Chronicle, the Examiner, and the National Catholic Reporter. He wrote about sports, religion (he was an ardent opponent of euthanasia), and the culture and politics of being disabled. (In one piece he writes about coping with the fleas from an alley cat that shared his one-room apartment for many years.)
His twin passions, according to film-maker Jessica Yu, were baseball (specifically the San Francisco Giants), which gave him entree to the sports culture of his peers, and Shakespeare. O’Brien delivered the 1998 commencement address to graduates of Berkeley’s English Department.
As an advocate of the “independent living” movement, O’Brien emphasized the universal need for human beings to have a measure of control over their own lives. “I want people to think of disability as a social problem…Everyone becomes disabled unless they die first.”
O’Brien spoke candidly on film of his struggle to overcome loneliness. “You can’t make someone love you — you have to be lovable yourself,” he said, adding that he wasn’t convinced he knew how to do that.
By the late 1990’s, O’Brien’s failing health restricted him to the iron lung for all but a few hours of the week. But he continued a correspondence through Email and regular postings on The Well with a world-wide circle of friends and admirers.
It was his sense of longing that connected him so powerfully with others, said PNS executive editor Sandy Close. “He demanded and expected very little, and maintained a sense of wonder about everything good that came to him.”
In “Breathing Lessons,” O’Brien acknowledged his gratitude to his parents, Helen and Walter O’Brien, for the care and love they gave him. He remained at home until he was 27.
“His Catholic faith — a portrait of the Virgin of Guadalupe hung always within sight — sharpened his humor and left visitors wondering who was crippled, Mark or themselves,” said Close.
Mark O’Briens’s efforts demonstrate that persons with profound disabilities have gifts to give that enrich humanity. We are all the image of God together. Another poem:
The Rower
Upon hearing what had happened,
Jesus withdrew privately by boat to a
solitary place.–Matthew 14:13 Bad news for sure,
John’s stern, wild-maned head chopped off
And left gasping on the straw
By Herod, that baffled, frightened, smalltime king.
If John could see the swift, hard ax descend,
Feel it slice through his neck-hair, skin, windpipe, and spine,
And in his rag of dying time
Think about it,
Consider Herod with amusement, contempt, rage,
Whatever tempers were available to him,
Then perhaps I could do the same
In the event that this sly bloodhound
Should favor me with such royal hospitality.
Not now, I thought, not now,
I muttered to myself, walking quickly, nervously,
To this lake, to this dock,
Where this sullen, bored man rents boats for cheap,
Even to the crazy-but-harmless,
To push out upon the flat water.
I push these heavy oars down and through
Dark, rippling reflections of sky,
Oars not as heavy as grief or fear, let alone death.
They give a lasting ache to my arms,
An excuse to complain about something unimportant.
Here, in this old boat,
With its mean splinters biting into my thighs,
I rent a few hours of peace and solitude,
Two things I’ll never own.
Summer Kinard, a mother of autistic children and who is on the autism spectrum herself, wrote a series of four posts offering practical insights on living with and relating to persons on the autism spectrum.
These posts cover . . . (1) regulating the home for the appropriate amount of sensory input; . . . .. (2) providing tools for simplifying (reducing) cognitive input so that attention will be focused on the necessary and important things in an autistic person’s life; (3) the ordering and processing of sensory input in the right order – feelings, images, and then thinking and language; (4) dealing with autistic child’s “back to school” struggles.
” … Xenia Grant, a woman with autism articulates the
incense
importance of finding a spiritual home in the Orthodox Church:
‘ … as a person with autism, the Liturgy appealed to all my senses. For my eyes, there were icons of the saints, the Theotokos, and Jesus. For my nose, there was the incense that the priest used. For my eyes, there was the music, because the entire service is sung. And for my mind, there was the theology, history, and lives of the saints, the Theotokos, the apostles, Jesus, and the Bible. I also like the vestment the priest wears.‘ (Grant, 2000, p. 245)”
The folks in the group home where we are advisors have brothers and sisters whose lives, from childhood, are obviously different from those who have no siblings with disabilities. The day-to-day needs of a child with disabilities can require a lot more attention than those without disabilities, and that extra attention can mean all the less attention for their brothers and sisters. But they also have an opportunity to develop an awareness of life’s varied gifts and challenges that is greater than “normal,” as well.
We find that these brothers and sisters maintain involvement with their sibling with disabilities to varying degrees. Friendship Community has had a “home weekend” each month, in which our individuals, if at all possible, go home with their families for the weekend. But as parents grow older and become unable to do this, some of the brothers and sisters (and even nieces and nephews) will take turns sharing this opportunity to keep up the ties.
The Sibling Support Project is an organization which focuses on supporting the brothers and sisters of disabled siblings.
You might want to explore their Sibshops (in their own words, “Sibshops are pedal-to-the-metal celebrations of the many contributions made by brothers and sisters of kids with special needs.”), workshops, and publications, listed prominently on their homepage. Also, both young and adult siblings have internet sites and special gatherings where they can connect, which is listed under Connect with other Sibs.
This post consists of a 37 minute podcast, two short You Tube videos – 0:47 (seconds) & 1:35 – are short windows into the first birthdays of Mary Evelyn Smith’s two children, Simeon, who has spina bifida and Franny Lou, who doesn’t have a disability, and two more You Tube videos starring Simeon.
Mary Evelyn Smith is an Orthodox Christian.
In the Podcast Mary Evelyn shares her experience of having a second child that does not have a disability. The podcast will be very beneficial to mothers in the same situation. And it will also help fathers, parish priests, family and friends understand these mothers’ perspective.
