Archive for the 'gifts' Category

The Struggle for the Right to Life and Home Care for Persons with Disabilities

Imagine –  you’ve reached the age when you need help with daily living tasks, and you either don’t want to be a burden on your family or

Not Dead Yet UK

your family isn’t available to help you; would you prefer to have a person come to your home to assist you, or would you prefer to be placed in a nursing home? Most older people dread the thought of being placed in a nursing home. Unfortunately, many insurance companies will not pay for home assistance. And so there is no choice. People with disabilities are in the same predicament. 

But this may change, The Disability Integration Act, which has been introduced in the U.S. House of Representatives, would require insurance companies to pay for both nursing home care and home assistance. It has 232 co-sponsors, but the Chair of the Energy and Commerce Committee, Frank Pallone (D), is blocking the Act. The following article is a call enlist the support of your local U.S. representative, and also  to change Frank Pallone’s mind.

To access the article:

Anita Cameron: Not Dead Yet Supports the Disability Integration Act 

Two more articles by NDY:

The Quality Adjusted Life Year calculates the value of disabled life as a percentage of the value of the life of a non-disabled person. This is blatant discrimination against people with disabilities! It has been rejected by the state of Oregon and by the Affordable Care Act, but New York State has allowed it’s use in a roundabout way. This article explains the situation in more detail:

NDY Demands Prohibition On Use of QALYs To Limit Health Coverage

NDY (Not Dead Yet) is a news source for the Disability Resistance Movement (DRM). One of it’s major goals is to fight against the

Euthanasia advocacy in the halls of government.  Some hospitals have been using their view of “Quality of Life” so that they can save money by “pulling the plug” on people with disabilities. Their argument is that people with severe disabilities do not have quality of life, and are not worth the effort and subsequent costs of the continued use of life-saving treatments.  So when a disabled person’s desire to live is weighed against these costs to the hospital, the pleas of the person as well as those of their family and friends are overruled by a hospital committee! 

This NDY article by Diane Coleman call for this resistance to sustained!

We Call It the “DRM” – And It’s Needed More Than Ever

Welcoming and Incorporating Persons with Disability into the Parish

Summer Kinard, an Orthodox Christian with autistic children, shares 7 ways that parishioners can support autistic people in Church.

To access:

7 Ways to Act on Your Autism Awareness in Church

Faithtree is an Orthodox Christian organization which seeks to help and enable priests and lay leaders for the ministries of the parish church. This article deals with our attitudes toward people with disability and questions we need to ask ourselves in order to prepare ourselves to love people with disabilities and their families, while at the same time beginning our approach by seeing the personhood rather than their disability. If we see them as a helpless charity case they will realize that they are being looked down upon. We all yearn to be treated with dignity and respect, and so do they. 

The article:

How Words Can Make a Difference in Your Church

A post along the same lines, by Ellen Stumbo . . . .

Disability Etiquette When Meeting Kids With Disabilities and Their Parents

A review of a book addressing these matters from Faithtree, by Anna-Sarah Farha

To access:

Removing Barriers: A Step-By-Step Guide to Making Your Parish More Disability Friendly (a Faithtree Resource)

A Short Video:

From the Greek Orthodox Archdiocese Website: A Webinar 

The Struggles of Mothers with Children who have Disabilities

Mary Evelyn, a Greek Orthodox Christian mother of children with disabilities, shares her stories and her heart. Kate Sytsma

and Ellen Stumbo also share their stories in the posts below, as well as the stories of some other mothers on You Tube videos.

 

To access:

Want to know what it’s like to go out in public when your child uses a wheelchair?

Embracing my daughter’s autism, not overcoming it. (Guest Post by Kate Sytsma)

Don’t Panic

Expectations and IEPs // Episode #16

My son doesn’t want to say hello: disability awareness and taking the day off

You Tube Videos on the same theme:

“… the Mighty One entered, and put on insecurity …”

 Syriac Nativity Icon

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An excerpt from St. Ephrem the Syrian’s Nativity Hymn 11, translated by Sebastian Brock, the distinguished Oxford Syriac scholar (The Harp of the Spirit, Fellowship of St Alban and St Sergius, 1983).

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< from Iconography of the western Syriac Churches

Your mother is a cause of wonder:
the Lord entered into her
and became a servant; he who is the Word entered–
and became silent within her;
Thunder entered her and made no sounds;
there entered The Shepherd of all,
and in her He became the Lamb, bleating as He comes forth.
Praise to You to whom all things are easy, for You are almighty.

Your mother’s womb has reversed the roles:
the Establisher of all entered into His richness,
but came forth poor; the Exalted one entered her,
but came forth meek; the Splendrous one entered her,
but came forth having put on a lowly hue.
Praise to You to whom all things are easy, for You are almighty.

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The Mighty one entered, and put on insecurity
from her womb; the Provisioner of all entered–
and experienced hunger; He who gives drink to all entered–
and experienced thirst; naked and stripped
there came forth from her He who clothes all!
Praise to You to whom all things are easy, for You are almighty.

 Saint Ephrem the Syrian

Mark O’Brien

Mark O’Brien

1949 – 1999

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.

A Webpage: The Poetry Foundation: Mark O’Brien

A Video (1 min., 43 sec.):

To the Siblings of a Child With Autism

From the MIGHTY
By Jamie England, a mother of two boys, one on the autism spectrum and one who is not. (Richie)

To access Jamie, Richie, and Mason’s story:

To the Siblings of a Child With Autism

More from You Tube:

siblings of children and adults with Disabilities

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.

Here is the site, with some of their stories: Sibling Support Spotlight

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.

See also: Sibling Support Project


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