Saturday, October 25, 2008

McCain - Palin on Children and Adults with Disabilities

Nearly my entire adult life has been defined by my work in the disability field ~~ as a parent, advocate, volunteer, and professional in a variety of capacities related to children and adults with disabilities. My second child was born with Down Syndrome; I was an early advocate developing residential programs and liberating adults from the warehousing and inhumanity of state institutions, a program and agency director, and national-level consultant and trainer, and associate researcher at a university: nearly 40 years working at the local, county, regional, state and national level on issues related to quality of life for children and adults with congenital, familial and acquired disabilities; currently, I work in a school for children with special needs where all have multiple disabilities; some are medically fragile and require 24-hour nursing care; about 1/3 are diagnosed with autism.

Am I an expert? Would you be drawn to say, "she has more experience than nearly every other American on disability issues" after reading my resume?

Well, I heard John McCain use that qualifier when he introduced Sarah Palin to the American public. I listened in disbelief because I know that 3, 4, 6 months into one's exposure to the world of disabilities does not make one an expert. For me, that time was one of groping and grappling with the reality and enormity of the diagnosis .... of wonder and worry about what the future might hold for my child and my family. And let me add that we were not typical in terms of prior knowledge of families with children who have special needs: my husband was a special education teacher with a master's degree; since my high school days, I had volunteered in various community settings and in state institutions for the people with disabilities.

So, on what "my friends", do you imagine John McCain based his description of Sarah Palin as "more experienced than nearly every other American". For answers, we could look to her record as governor of Alaska. If we did, we'd find that programs for special needs children were level-funded or decreased during her two years in office. We'd see that she used a line-item veto on funding that would make improvements to municipal accessibility for people in wheelchairs, those who are blind or with low vision. We'd learn that Alaska lags far behind nearly every other state in educational opportunities for children with disabilities and in implementation of IDEA. We'd see that in her tenure, she again used the line-item veto against funding to provide community-based services for 1200 adults on waiting lists for such services.

Dial forward to the 2008 election season and see that even her own sister, who has a 13 year old child with autism, has written of Sarah that, "...... she has a lot to learn ......". We read the heartfelt words of an Alaskan resident who is the parent of child with disability and advocate who said she cried when she learned that Sarah was the VP pick. We observe that over and over - again and again across the country parents, professionals, academics and advocates at all levels have rallied against Sarah first as McCain's VP pick, then when McCain designated her 'more experienced', and at his announcement that he would appoint her national advocate on disability.

Follow Sarah around the country. In Colorado, she spoke against support of community-based services for 12,000 adults with disabilities. On the stump elsewhere, she said that more funding disability services is not needed. She talks about educational opportunities for children with disabilities as an "access" issue. And I say, come on, Sarah: we fought that battle and won in the nineteen-seventies. The issue isn't access anymore; the issue is getting appropriate services once in the door.

Does she know or care that IDEA has never been fully funded -- that funding to support individual state efforts is only at 17% of what was originally promised in the mid-nineteen seventies. Does she fully understand that the republican health care plan would eliminate coverage or drop children with disabilities because of the pre-existing condition exclusion in their plan.

John McCain has come up empty-handed on these critical issues. And, he has not put forth any real plans or position statements.

Are the 50 million people with disabilities even on his radar? Or only when their issues offer him a sound-bite or a photo-op or when he can showcase and pander to real people with real life problems as he has done with Sarah.

Friday, October 24, 2008

I want to believe again

I have been troubled by the comparisons made between Sarah and Bill Clinton, Ronald Reagan, and John Kennedy saying that they too were regarded as 'inexperienced' for the presidency.

How does one make the leap from Sarah to these men? A Rhodes Scholar? One devoted decades to the political process? Serious-thinkers? Well-educated and well-read? Intellectuals?

I am sorely troubled by the idea that John McCain will win the presidency. But more, I am distressed, frightened by the thought that Sarah Palin might succeed him. A woman who told Katie Couric that she didn't need to ponder the call to be McCain's running mate ~~ she knew immediately that the answer was, "yes". A woman who does not like to spend time focusing on issues ~~ her style is 'give me the essence and I'll run with it. A woman with whom he had spent a total of 3 hours in conversation. A woman he hadn't met face-to-face until he made the 'ask'.

I am troubled that his decision-making style, as evidenced by his VP pick, is exactly wrong for the times. For the problems we face as a nation.

I am troubled that he is throwing old, tired and worn-out platitudes and ideas at entirely new and complex problems.

I am troubled when I see and hear words and actions that divide us.

I believe . . . that what we need now is someone to lift us us the way out of this maze of internal, domestic, and international problems.

Clothes, Hair and Make-up

You read about the $150,000 spent on clothes from hi-end stores?
You learned that costs for her stylist was over $30,000 for October and September.

How does knowing these things make you feel about the 'hockey-mom'?

. . . make you feel more connected to her, does it?

Thursday, October 23, 2008

Dear John McCain,

Dear John McCain,
Shame, shame on you for holding ordinary Americans in so little regard that you believe we could be lured by your sad and sorry VP pick ~~~ for thinking that she would appeal to thinking women ~~~~ that Americans in general would be seduced by her barbie-doll-flirtatious-behavior. By her stage-presence-facility-reading-lines-performance-on-the-stump.

Perhaps, you thought her inexperience would be obscured by winking and flirting. Perhaps you believed we wouldn't notice her shallow and narrow understanding of global political, economic and financial issues when we saw her suited and polished in $150,000 clothing.

Excuse me for asking. . . but did you really, I mean seriously engage in an honest reflection of the possibility that she was qualified to take charge of the national economy, the federal banking system, national security. Of domestic and international affairs? Do you seriously believe that she is equal to the task of managing our international relationships, two wars, global financial instability and threats and slams to capitalism.

Friday, October 17, 2008


You need a room with no view
so memory can meet imagination in the dark

Blooming all alone

The Last Rose of Summer
Thomas Moore
'Tis the last rose of summer,
Left blooming all alone,
All her lovely companions
Are faded and gone.
No flower of her kindred,
No rose bud is nigh,
To reflect back her blushes,
Or give sigh for sigh.

Tuesday, October 14, 2008

Bedside Books

Yesterday, I posted a quotation from Islands by Ann Rivers Siddons whose books I have enjoyed over the years. And, for the most part Islands was no exception. I liked the characters, especially Anny and Lewis, whom the story and other characters revolve around, while she tells the intertwining stories of the "Scrubs", a group of childhood friends and their spouse now middle aged.

The story evolves in Charleston and the Low Country of South Carolina; all of the characters are quite well-heeled and have multiple homes. But the action takes place at a beach house. Some are physicians, surgeons, successful real estate brokers. And, then there is Anny who grew up impoverished, the daughter of an alcoholic mother, a scrappy young girl and woman who made a success of her life in the nonprofit world. The characters seemed believable; the story was compelling -- until the end.

The plot line wanders in and out and around the lives of these 4 couples and their quite enviable lives. Some of them have known one another for most of their lives. And then the unthinkable begins to happen (and for me the story begins to unravel) when first one spouse dies, then a house fire takes the life of another, and another spouse dies on his boat. Enough, you say. Yes, I agree. But clearly, the author didn't agree with that sentiment because she dragged the story line out to an unbelievable and, I think, illogical conclusion.

Here it is, in a nutshell: one of the eight-some, it turns out, is a psychopathic killer who has been orchestrating these horrible events. We are asked to believe that this character, who has been 'best friends' with most of the eight, is actually a crazed woman scorned and waiting decades for vengeance.

Well, I am not such a believer.

And I was really disappointed in this writer. And asked myself: how could she have stooped so low as to manipulate the story line and her readers in so obvious a ploy (no, not plot).

Disappointed all the more because Siddons has been compared to Faulkner and other important southern writers.

And, I ask myself: how would I have brought this story to a more natural and believable conclusion?

Monday, October 13, 2008

The long sweet fall . . . .

"On a smoke gray afternoon in October, we sat on the porch, wrapped in sweaters against the stiff little wind out of the east. Soon it would bring rain; you could smell it coming, and there would be a big wind, because it was born in the east where all the changes get started.

It would be the end of the lingering, muted colors and probably the end of the long sweet fall. Already we lit the fire earlier, and came in out of the purpling twilight ready for heat and drinks and hot food. But on this afternoon, the sense of endings was powerful, and we shivered on the porch longer than we might have otherwise."

(From Islands by Ann Rivers Siddons, 2004

Friday, October 10, 2008

Not wasted time

The time you enjoy wasting ........ is not wasted time.
Bertrand Russell

Monday, October 6, 2008

Things, Stuff and Clutter - Part 3

“Simplicity is the examined life richly lived.
It is asking ourselves what’s important, what matters.
We all think that someday we’ll start living
But few of us feel fully alive.”
Cecile Andrews

Today, as I continue to pursue the 100 things challenge, I am creating a value-based list of MUST-HAVE things to identify what is MOST important to me in my life of things.

I don't expect this list to add up to 100 because these are among my most favorite possessions and are things I really want to have in my life. Not because they are essential to every-day-living but because they touch my heart or my soul in different ways.

In this go-round, I am not counting furniture or books or tableware; I am counting collections as one thing.

Clothes, shoes, boots and accessories
Winter boots (3); my shoe size is only a 5; shoes and boots are difficult to find. These, I keep, until they are no longer wearable
Silk and wool jacket (1); Not new, made in a sewing loft in Greenwich Village by an older gentleman who created only a few each year, but surely loved for the last 15 years
Hand-loomed woolen shawl (1) in the various colors of autumn that I have owned for about 30 years and is still pristine in every way

Crafts, Sewing
Sewing machines (2); the Featherweight and the Pfaff, of course
Japanese imported fabric
African imported fabric

Art Pottery Platter (1) from artstream that Larry bought for me last year
Japanese Pottery (5) a tea pot, winter tea bowls, summer tea bowls from St. Andrew's By the Sea, Canada; the potter, Tom Smith, has been awarded honors by the Japanese for faithfulness to Japanese traditions
Seattle Pottery (6) gifts from Stephen and Joanne, one large spaghetti serving bowl, one small serving bowl, 2 large mugs and three fish serving platters, all in various shades of green with some grey tones

Dolls, Yes Dolls!
Molly Doll (1);
Yes, I have an American Girl doll gifted to me by Amy and Victoria a few Christmases ago
P.E.I. Soldier Doll (1); Canadian; doll Larry bought for me with hand-made costume
Quilts, Antique (1) circa 1810 of French imported fabric called pillar fabric but probably made in Maine
Quilts, made by me (3)
small mariner's compass, wallhanging
bedsize, hand-sewn, Monkey Wrench with an Attitude
the Egglady, wallhanging

The quote with started off this post is from

Saturday, October 4, 2008

Things, Stuff and Clutter - Part 2

I am taking this topic of stuff and clutter very seriously.

Today, I cleaned and organized my closet and bureau - - clearly, I would have done this any way in preparation for cooler weather and the need for warmer clothes.

But today, I approached the job with a different mission for the task and looked at the 'stuff' through a different lens. And the result is that I brought two large bags to the Planet Aid box around the corner --- things from last autumn and winter that didn't fit then, don't fit now, and probably won't fit next year either.

But what about the real job of paring down to a reasonable number of other things?

I've been thinking about that question as I've gone about my day today. For example, I have four - yes, four - sewing machines. How many sewing machines does a person really need, any way?

First, I have a Singer Featherweight circa 1951 and frankly the workhouse of all sewing machines. This little beauty was made from 1933 until the late 1950s or maybe early 1960s and in all that time the design was changed very little. Oh, there was some scaling down during the war but nothing that impacted its functionality. It is the kind of machine that has a very simple structure; even I can troubleshoot problems -- and when I can't, Larry can. No, it doesn't sew in reverse. It doesn't do any fancy stitches, either. But it is a classic. A collectible. I have to keep it. I don't use it every day, or even every month but I would be bereft without it. Truly.

Then there is the New Home sewing machine circa late 1930s. Made in Orange, Massachusetts (Larry and I lived in New Salem, Massachusetts for 13 years just up the road from the old New Home factory). Well, I could live without the New Home and if truth be told, I always found the bobbin mechanism difficult to use. I could put it on Craigslist. Yes. Great idea.

I have a Singer sewing machine from the 1960s, I think, that belonged to my husband's great Aunt Mildred. It really needs a LOT of work and I'd like to get rid of it ---- I mean, 'pass it on to someone who would appreciate it!' Frankly, I'd give it away. In fact, one year Larry and I had a big yard sale and I sold it. I was very frank with the woman who bought it saying that it would need servicing before she could run it. She was fine with that and paid, $50, I think for the pleasure of taking it away. Then, some weeks later she called to say that she'd brought it to her friendly sew and vac shop for servicing and was told that, yes, it did need some work but it was worth a lot more than $50. She, being a stalwart Christian, returned the damnable thing, feeling guilty! OMG. OMG. And, I still have it 7 years later!!!!! PLEASE, please, take this sewing machine off my hands!!!!! Craigslist????? Maybe.

And, then there is my Pfaff. About 8 years old and a faithful machine. A gift from Larry who said he would purchase a new machine for me and it took me at least three years to choose between a Pfaff, a Viking and a Bernina. It was the built in walking foot that caught me!! It does lots of things but is not one of those show-ey computerized machines. I love it and wouldn't part with for anything.

So, there.

Two out of four. Not bad.

Friday, October 3, 2008

Things, Stuff and Clutter

Last week, we were riding to the Deerfield Fair. I was driving; Larry was snoozing. On the radio there an interview with Dave Michael Bruno, 37, was airing. Dave has created quite a stir with his personal challenge to pare down to 100 things by a date certain in November.

I was immediately intrigued by his challenge and over the next few days the thought of owning only 100 personal things kept re-surfacing -- but with questions.

How was he doing it? Was he counting every item in his possession? Like flatware? Dishes? Pots and pans? Surely, it would not take long to reach 100 by that method. Was he using categories and counting, for example, all flatware in the house as "1" item.

What with weekend quests, work and other obligations, I hadn't a chance to google Dave for the answers to these questions but the concept and his challenge kept my interest peeked. And I kept thinking about stuff and things and how it becomes CLUTTER in our lives.

We know about Clutter. It's the stuff we are stuck in. That fills our rooms, basements, attics and garages. That's stacked in boxes. Stuffed into drawers, bags and containers. Hangs in closets. That stuff we spend money to acquire and then spend more money to house and contain.

We spend our life's energy paying for it (you remember that great book from about 15 years ago, Your Money Or Your Life! --- I've forgotten the author's name), working for and working at purchasing, collecting; housing, containing, dusting and cleaning and repairing these things!

I think clutter starts as a must-have -- a gift to ourselves or our kids that we believe will fill a hole, comfort a need, make us happier, feel sexier, be more joyful or content with our lot in life. It does not, of course, do these things and is soon relegated to all the corners of our lives.

But I admit to it! I am one of those!

I am a collector of things: I love to read; my collection of books is varied and way too large; I have a passion for dishes. I love scarves. I quilt, sew, make altered books, fabric art journals and have a stash of supplies, equipment and tools for these crafts. And, truth to tell, I have way more than I need. I collect antique linen and lace and quilts. And CDs. Jewelry. Shoes and pocketbooks?

What exactly is Dave doing?
And what is his 100 Things Challenge?

Well Dave's goal is to have pared down to 100 personal things by November 12 --- that's this year, --- and to live with only those 100 things for one year. By his definition, personal things are not family-shared or household items.

Also, in pursuing his challenge, he says he will keep family memorabilia pared down to one small storage container and will not open it for one year.

Further, by way of qualification, Dave is sort-of-but-not-quite eliminating books from his challenge: he is "considering getting books down to 100".

And, he notes that, "some things will be counted in groups like underwear and socks" but that he is not keeping a lot of either of these items.

And, to be clear, his wife and children are not participating in his challenge.

But I might.
I am sympathetic. But could I do it? How would I do it? I don't think I'd use Dave's rules entirely. I'd have to 'start small' -- and begin by thinking in terms of overall categories rather than individual items because I surely could not pare down to just 100 things in such rapid-fire fashion.

I suppose I could think in categories such as books and clothing, cosmetics, jewelry and accessories. Magazines. And craft stuff.

Craft stuff? Yikes!

We live in a world . . . .

"We live, in fact,in a world starved for solitude,
silence, and privacy:
and therefore
starved for meditation and true friendship."