Personal Space

By Laurie Clements Lambeth

 

Houston, TX

 

I take my grocery shopping seriously. Lists derived from recipes, coupons, different stores mapped throughout the city for different items. Greek yogurt? Sure. The mega store actually has the kind I like best. You want coffee and artisan bread? Central Market. Tofu hot dogs and Tofurky slices? Whole Foods.

As a grocery store patron with multiple sclerosis, I use my blue disabled placard to park, especially when it’s hot outside, which is almost always the case in Houston, where I live. Heat slows nerve conduction. Any misdirected messages between the central nervous system and whatever it controls (walking, for instance) have a large chance of being further misdirected, a cell-level version of the time I received a card from England via Brazil, or most recently, my in-laws’ package of English tea which first stopped in Jakarta. I like to imagine a little conductor in my brain, with his little striped hat and overalls, getting sweaty and confused, and then the sparks catch light. Sensation alters. Fatigue sets in. In the period of an hour my legs can weaken to wobbling. So I plan ahead, even if I’m able to walk well. I’ve been doing this since I was first diagnosed at seventeen. Back then I grew accustomed to the stares—she’s not disabled enough; look, she can walk. What a cheat. Now that I’m older, it’s more believable, shall we say, that I might need that parking space. But I still try to look young and stylish, so some people still stare, shake their heads. In general they do not, however, pull into the striped zone alongside my car and wait for me to get out so I can prove it.

There’s always a first time. A few months ago a man pulled his black SUV up alongside my parking space and stayed there, engine running. I tried to tell myself he was simply waiting for a space, or maybe a person inside the store, but I was also afraid he had a gun, had a thing for brunettes, or was a stalker. He didn’t budge, and the weather inside the car got warmer. I gathered my things and opened the door. Once I stood and took a step, the SUV tipped around the corner, passenger window open, heading the wrong way down the lane. The driver hung his head out.

“Funny, you don’t look like a cripple,” he shouted.

Yes, he said the c-word, and not that other c-word, but one with the same intent. Actually, it would have been “funny” if he had used both. He could have used it on Inside the Actor’s Studio as his favorite curse word and audiences would applaud its originality. I wondered what century, or Faulkner novel, he’s from. And I responded with some rather unoriginal swearing of my own, demanding he donate to the MS Society, my throat going hoarse in the process.

More recently, well into my current MS exacerbation, legs shuffling, left hand unable to grip things like steering wheels, I looked the part. No question about it: exhausted but fabulous disabled woman. During some flares I use my cane for support and propulsion, and as a clue to those behind me that my gait is not because I am drunk or ornery, but because it’s the only way forward. With a weak left hand I worried that my one free hand would drop something in a crowded store, so I left the cane at home. Sans cane and other such helpful encumbrances, my husband and I headed to Central Market, known for all things gourmet. It is a tourist destination. People awe at the mushroom selection. Or the cheese department. For me, Central Market is the grocery store with the best fleet of mobility scooters. The best place to go when my legs aren’t doing what my brain is telling them to do.

Last weekend, though, the only scooter available was pretty old, wide and unwieldy, seat torn. The red paint had chipped on its edges, and additional metal bumpers protruded about six inches from the scooter body. I sat down, unplugged it, and flipped the switch. This was my ticket to chug through the store, charging cord swinging off the back like a tail. I was once able to steer a seventeen hundred pound untrained horse, but the scooter beast proved more rigid and stubborn. Trying to cultivate patience and temperance, I avoided the crowds around samples of salsa or olive oils. Too many boxes and bodies obstructing the path.

Each time I have an exacerbation and begin dabbling in what Nancy Mairs refers to as a “waist-high” existence, which I would say is really ass-height (don’t get too close), I measure the reactions of others. Once a man asked my husband, who has never driven a mobility scooter, what it was like to steer or brake. Checkout clerks have given him eye contact and conversation instead of speaking with me. Last weekend proved that for the most part this particular cross-section of humanity had evolved. They moved when I said excuse me, understood the struggles I had with steering, and didn’t seem to mind when I parked in the aisle, right in front of what they needed. And they actually spoke with me. I existed.

Except at the bakery. We were testing the rosemary bread to imagine how it would pair with a summery yellow squash soup. Let me map out the scene: I sat parked next to the table where the loaves were set out. My husband stood facing me at the corner of the table, tasting a sample of the bread, trying to decide between rosemary or multigrain. Between us, the filled wire basket at the front of the scooter. Then from behind came a khaki-sleeved arm, over my head.

“Let me just get this loaf and get out of your way,” I said. It was meant to sound polite but with an edge. The bearer of the arm, who was reaching for a sample and stuffing her hands with more samples, said, “Oh, I didn’t realize this was yours.” I didn’t know what “this” was to her, or whether she felt awkward or just irritated by my presence that she hadn’t before noticed, so I clarified:

“I’m buying this,” I said, holding the bread. “This,” I said, swirling my useless left hand over the basket, “is mine. I am here,” meaning, you just reached over my head to get free food. I think I scared her away. She hurried off, fists full of bread. I hope the scare was the good kind, the kind that might make her think about people who live below her belly. I don’t think anyone likes being under someone’s armpit, crumbs from a hand falling onto your hair so that when you get home you mistake them for dandruff. That scooter, although it wasn’t mine, was part of me at that moment. It was my space.

My best friend, when she was pregnant, existed in excess, protruded into the world in a way that compelled strangers to reach out and touch her belly, as if they had divine permission. She noticed herself taking a step back as a hand approached. She became for them less human—less deserving of personal space—when her body took up more space. Sitting low in the supermarket, I existed in lack. But the wire basket and motor made me take up more space: excess. An extraordinary body whose space is denied because people don’t want to acknowledge its possibility. And I am only a tourist in this body, this hunk of metal, plastic handlebars (like horns) and torn cushion.

When I was visibly healthy, according to the man who said I didn’t look like a cripple, the space I parked in was legally mine to use, but that man, pulled uncomfortably close to my car, determined me unworthy and drove away. Shaken and hoarse, I headed toward the supermarket entrance. A woman stood waiting for me in the foyer. She smiled, benign, and I returned a grin. Wasn’t that weird, I thought, as I opened my eyes wide, blew my cheeks like I was relieved to survive or something. My leg was growing numb from the stress of the parking lot encounter. This woman seemed familiar with my experience, and she tilted her head warmly like the Virgin Mary does in religious paintings. As she drew out her shopping cart and offered me one, she leaned in close.

“Remarkable. Seeing you today is just like looking at a reflection of m
yself ten years ago,” she
said. Maybe she has MS or chronic fatigue or some invisible disability, I thought. A kindred spirit. We walked through the sliding electronic doors, approaching Mylar balloons and flowers. She went on: “before I had anger management meditation. That saved my life, oh yes.” Tears formed at the corners of her eyes.

I couldn’t say to her, “You’re mistaken. I’m usually a calm person. I am not your mirror. I’m nothing like you.” How could she believe me? As we pushed our carts side by side, she felt too close. Anger was the only disability she perceived. And because I could, at that time, walk a little faster than I do now, I leaned on the cart handle like I would a walker, and subtly pressed my trolley toward the free cookie samples, away from her. Soon my hands would be full of crumbs.

 

Laurie Clements Lambeth’s book of poems Veil and Burn was selected by Maxine Kumin as a National Poetry Series award winner in 2006. She lives in Houston, TX and she is the official Gulf Coast Correspondent for POTB.

Disabled Children Abandoned in Haiti

The following excerpted article comes to us from The Inclusion Daily Express. The full article can be found in The Miami Herald. The intersection between severe poverty and the devaluation of people with disabilities is one of the world’s oldest stories. We are tired of the old stories. So tired.

S.K.

In Haiti, Abandonment Of Disabled Babies A Growing Problem
(Miami Herald)
August 12, 2009
PORT-AU-PRINCE, HAITI — [Excerpt] Her frail body lies almost motionless inside a rusted metal crib. Her diaper is soiled, but she doesn’t cry. At 9 months old, she weighs just five pounds.

The staff inside the Abandoned Baby Unit at the government-run Hospital of the State University of Haiti call her Sarafina. She was dumped on the hospital’s front steps: No name, no note.

But doctors know her story all too well — like the dozens of other special needs babies crammed inside the unit, she was tossed out by parents who could not deal with her mental retardation.

“We find them on the streets, in the hospitals, in sewers,” Dr. Questly Bonne-Anne said amid the wails of bedridden, diaper-clad children confined two and three to small cribs. “We guess their age, we give them their names.”

Entire article:
In Haiti, abandonment of disabled babies a growing problem

http://www.miamiherald.com/582/story/1178073.html

On Self Happening

“It is not I who create myself, rather I happen to myself.”

–Carl Jung

 

You find that you’re singing. It’s a folk tune from Naples.

The little song heaves and winds like the gramophone or the human heart itself.

All songs are little streets in the mind. Look! Your heart is at the end of the road.

So you sing and the insolent day disappears.

The canvas and linen, the warped window, they recede like shorelines.

It’s a folk tune. A muted grin…

It’s just the middle of the day and you’re singing.

Piano laughter in your fingers.

You can feel a good song opening the doors of night…

 

S.K.

Truly Caring For Our Elders

By Laura Castle

Contributor to POTB

 

They live in nursing homes all over the country. Their frail bodies and often confused minds require expert care, both to avoid physical trauma to their easily bruised and cut skin and their delicate bones, but also to help them avoid the descent from confusion into despair and hopelessness.We who work with elders in care facilities (which go under all kinds of different names these days to avoid the dreaded term “nursing home”) need to acknowledge their decades of service to humanity, excelling at careers and raising children. They have earned all the kindness and comfort that we who are not there yet can provide. Why then must so many languish in under-staffed nursing facilities, barely receiving a minimum of physical care and suffering the indignity of emotional needs ignored?

Every working day, I find myself followed by a caravan of wheelchairs as soon as I arrive, the eager faces inside reaching out for a smile, a touch or just to be called by name. These faces tell me “I am still a human being, although I am very old. Please acknowledge me.”

The physical abuse and neglect of our elders has been fully researched and documented, and there are wonderful people who work around the clock to end these abuses of seniors. I wish to focus on one of the “little abuses” that can be equally hurtful.

The lack of greetings received by elders is disgraceful. So many times and in many facilities, I have seen an employee grab a wheelchair at mealtime and push it into the dining room without a “Good Morning” to the human seated inside or “It’s time for breakfast “(lunch or dinner.)  Would there,perhaps be less senior dementia,  angry behaviors and lack of appetite if more of us took the small step of greeting them when we transport them into another room for any purpose?

To transport a conscious person with no greeting is a violation of human dignity- an emotional slap on the face. It is to say “You are not a person. You are merely the baggage I work with, take to and from the dining room, and help with toileting, dressing and bathing. You are nothing but the means to my paycheck.”
I greeted a new resident many years ago in an understaffed facility who was sitting in her wheelchair crying as employees rushed past, ignoring her. Upon hearing “Good Morning Mrs. S— and welcome. We’re glad to have you here” her tears stopped. She gazed at me with wonder in her eyes and said “Now, I know I’m still alive. You said my name!”

Yes, there are times when we are too busy to stop when a resident calls out to us. But, we can always smile and call that person by name as we hurry by. Do we not realize that we will someday be that old and need the respect and kindness they seek?

When you make the decision to volunteer at a nursing home, you will do do much more than help with physical care and make life easier for the staff. Your smiles, greetings and interest may actually help restore the dignity and sense of humanity to an ignored, isolated person. This is no small achievement.

Laura Castle lives in Vero Beach, Florida. Laura is a survivor of severe, chronic child abuse and plans to write  about this in the future. She is an avid reader and walker. She is married to a sweet, gentle man whose love has helped her heal.

In Memoriam: Eunice Kennedy Shriver

The following article from the Christian Science Monitor comes to us from The Inclusion Daily Express. Eunice Kennedy Shriver will long be remembered by thoughtful folks in the disability rights community for her insistence that people with disabilities and in particular, people with intellectual disabilities be celebrated as citizens of this country. Because of this she will always be a champion in public memory for indeed, in her vision, “everybody wins”.

 

S.K.    

 

Life Of Eunice Kennedy Shriver Remembered, Honored
(Christian Science Monitor)
August 11, 2009
HYANNIS, MASSACHUSETTS– [Excerpt] Eunice Kennedy Shriver changed the way the world views people with intellectual disabilities, and she did it with a characteristic determination and humanity.

Today, people who work in the field, which exists in part because of the work of Ms. Shriver, who died Tuesday, are pausing to recognize her.

“There’s no doubt that Mrs. Shriver, her husband, and the entire Shriver and Kennedy families have played instrumental roles over the last 50-plus years of advancing society’s views of people with intellectual disabilities,” says Paul Marchand, a staff director at The Arc, America’s largest parent-controlled organization working on behalf of children and adults with intellectual disabilities and their families.

Shriver’s accomplishments range from helping to establish the National Institute of Child Health and Human Development to founding the Special Olympics to establishing major centers to study medical ethics.

“While clearly associated with the Special Olympics, Mrs. Shriver also played a significant role in helping to create opportunities for people with intellectual disabilities to live and thrive in their home communities through advances like making [federal] funding available to finance housing opportunities,” Mr. Marchand says.

Entire article:
Eunice Shriver changed views on intellectual disability

http://www.csmonitor.com/2009/0811/p02s19-ussc.html
Related:
Eunice Kennedy Shriver Dies At Age 88 (National Public Radio)

http://www.inclusiondaily.com/news/2009/red/0811q.htm
Eunice Kennedy Shriver remembered as ‘an example to others’ (Boston Globe)
http://www.inclusiondaily.com/news/2009/red/0811p.htm
Eunice Kennedy Shriver, Special Olympics founder and sister of JFK, dies at 88 (Los Angeles Times)
http://www.inclusiondaily.com/news/2009/red/0811n.htm
Eunice Kennedy Shriver: A Gladiator for the Voiceless (Washington Post)
http://www.inclusiondaily.com/news/2009/red/0811r.htm
Statement from Special Olympics on death of Eunice Kennedy Shriver (Boston Globe)
http://www.inclusiondaily.com/news/2009/red/0811k.htm
Statement from the President on the Passing of Eunice Kennedy Shriver (The White House)
http://www.inclusiondaily.com/news/2009/red/0811h.htm
Statement from the Vice President on the Passing of Eunice Kennedy Shriver (The White House)
http://www.inclusiondaily.com/news/2009/red/0811g.htm
Mass. Special Olympics mourns their founder (Boston Globe)
http://www.inclusiondaily.com/news/2009/red/0811m.htm
“Rosemary Kennedy Dies At Age 86” January ! 7, 2005 (Inclusion Daily Express Archives)
http://www.inclusiondaily.com/archives/05/01/07/010705wikennedy.htm

# Share your thoughts or memories of Eunice Kennedy Shriver on our Inclusion Daily Express Discussion Board:
http://members5.boardhost.com/InclusionDaily

Stars at the Lake

Last night around 10 pm I went down to the dock and swam alone as I often do in the summer when I’m on the island. I floated on my back and saw for the first time in twenty years the swaying summer constellations spread out like living cups. I saw the big dipper and felt the shy,  mortal thrill of taking pleasure in place–in all places. I swam around in joyous and shivering circles. With my left eye I could make out the stars! I may be blind in the right eye still but “lefty” was feeling like old Carl Sagan.

 

S.K.

La Vida Continua

 

This morning I was tired, angry, confused. I thought to myself about the soul and its obligations. I drank strong coffee under a birch tree and considered how I am kind to others and seldom kind to myself. I am a western man. I am weak in the soulful warrens of self-kindness. Some mornings, exhausted from dreams and worrying in the green language of stars and all the psyche’s shipwrecks I can’t find a way to be kind to myself. I have to wonder if this is genetic.

My paternal grandfather was a Finnish Lutheran minister. I have some of his sermons preserved, their quaint, 19th century Finnish almost unrecognizable compared with the language of 21st century Suomi. One of the sermons is entitled: “What Does God Demand of You Now?” I hear that voice early, around sunrise, the coffee steaming in my cup. I feel the bifurcation of soul that so many insecure Christians know–I have not lived and loved with my whole heart; I have not been a good disciple; and in turn this is how I browbeat myself. The implicit and never ending demand is that I must become good. I am not good now.

Of the soul I can say that it lives or manifests itself in a whirl of exile. One is lonely with a soul. The damned thing needs connection but Eros won’t suffice. Wealth can’t fix it. Buying and selling can’t do the job. Building a tower won’t help. The soul feels time in its measure and moves inside us like the sea. It has the secret gold of creation. It cannot love us. In effect, the soul can only reflect or absorb divine love and the energies of creation. We carry it. The fuel for this flame is our very lives.  This is the bifurcation I mentioned above: I am not good now; there’s something inside me that moves like wings over the sea…

These are simply my thoughts over morning coffee. Kindness to the living man or woman is an opportunity for the soul to call upon divine strength. The scouring and scourging of the phrase: “I have not loved you with my whole heart” is devastating to human beings who do not understand that you or “thou” (which is stronger I think) means that we have not been aware of the gifts God has given us. Become aware of the gifts. Do not despair of the treasures of consciousness and of dreams. Pass along self-forgiveness. That is the work of the New Testament.

So I was up early. Angry. Hard on myself. Its taken me all day to work this simple purification.

The mysterious and intangible waves of the soul wash over us, work in us, when we are kindest to the poor men and women we find ourselves to be.

Morning coffee. A blue jay in a near maple shouts about the thread of life…

 

S.K. 

Blogging from the Island

My wife Connie and I own a small cabin on Rattlesnake Island in Lake Winnipesaukee in central New Hampshire and each summer I come back here to write and swim and walk in the woods. Connie has now joined me for a weeklong getaway from the midwest and we’re fixing to power wash our deck which is green in several places owing to the effects of winter snow. But somehow relaxing is a prologue to the work and we find that letting go of the worldly cares remains a near impossibility. While swimming I find myself thinking of Ohio’s acid rain which washes over the New England states. While walking in downtown Wolfeboro I wonder about the kids who are following their parents up and down the quaint shopping district–will those kids inherit a nation that guarantees affordable healthcare for all? Will there be a new era of energy friendly jobs and industries for them to work in? I think about these things as I note the incredible wealth of the nouveau rich home owners who have built startlingly spacious and expensive lakeshore places in a landscape where I grew up and where the lakeshore properties were mostly blue collar places. Are these young, wealthy, showy new consumers the last gold diggers from the era of gasoline engines? Will there be new kinds of wealth in America? Will there be a middle class at all?

And so I find that I’m not a relaxer by nature. I slow down. I swim under the full moon. Will the future of this nation be a noble or tragic affair? Will power washing the green innocent stains of last winter’s snow help me out?

I think I’ll go rowing and imagine a warless, free society.

And how about some fried clams?

 

S.K.

To the Planet

 

–after Pablo Neruda

 

1.

I have questions

Like a soldier or a boy

 

Since each says goodbye

To the land he loves

 

& it doesn’t matter

Night or day—

 

My questions

Stitched

 

From rising hills…

 

2.

 

How do you clothe yourself

After so many wars?

 

How do you stand

In glass and oil?

 

How do you carry

A rich man’s blade

 

Inside

Your secret places?

 

3.

 

I know

Time

 

Is running out

In your eyes.

 

I know

The sun

 

Cannot save you.

I see you have no share of heaven.

 

4.

 

Foolish to talk in this manner…

To say I tremble

 

In your dense blue air…

To ask things of you…

 

But tell me again

About the ruthless beauty of your blood?

 

 

S.K.

Where All the Fish are Gathered

“Perhaps it’s what happens to a blind man

Who from so much not seeing then sees everything

And in a single focusing

Sees

With all the intensity of a diver

Who descends one single well in the whole ocean

And in that place all the fish are gathered.”

–Pablo Neruda

**

After cataract surgery on my left eye I am now nosing over strange objects, moving persistently from place to place like a half-blind surveyor, hungry for the knowings…

**

Two days ago while swimming in the lake I discovered a yellow orb on the bottom. It was down there with the lacerated stones and broken branches. I dove down and retrieved it. A yellow golf ball! I felt as though I had plucked a shrouded apple from a tree!

**

I do not want to write the poetry of eyes. But the mind’s dark channels, briefly illuminated by sparks…

**

The purpose of eyes, of course, is to strip away leaves.

**

My wayward delicate eye, that tiny cup. How it keeps slowly opening!

& so I am diving, like a whale in its course of ocean. Look at those fish swimming without direction.

Every fish shakes its own geometry…

 

S.K.