November 21, 2010 at 10:29 AM (Uncategorized)

The memories of some of my parents friends have been running around peskily in my head…for about a week now suggesting that I write about them…So.

The first grownups that took an interest in me, outside of the school for persons with disabilities that I went to, or my family, were two of my parent’s friends.

One of my father’s friends married a girl named Prentice (as a first name, could have been spelled Prentiss…I don’t remember.) All I know is from the time I was a toddler until she moved to Maryland, I remember her.

She would come by for some adult time with my mom.  Though I’m not a mom I get that when you are tending to the kids needs 24/7 in the early going, that adult time is a lifesaver.  Just to have lunch and talk out whatever.

But Prentice would also stake out some time with me, usually right at the beginning of her visits.  She seemed genuinely interested in my little stories and accomplishments.

I was also in awe of her, because she was beautiful in a very different way than my mother, although some of their individual characteristics may have matched up.

All the beauty magazines seem to exaggerate for celebrities “That porcelain skin, etc.”  She actually  had that as a base, and some freckles too. She had cropped, well cut,  black hair that  did the thing mine never does, laid calmly on her head, instead of some random explosion of waves and twists that made me look unkempt no matter how short I kept my hair.

Makeup clothes, all were well done, but she never paraded around in expensive looking stuff.  I got the feeling she didn’t like those kind of clothes much.

Looking back, from the way she sounded, interacted and her word choice…it felt like she came from a fairly well off background back East somewhere…

She was the most soft-spoken person, sometimes…but merry too, and could break out in laughter easily.

Whomever she was talking with, she made it a point to focus her attention on them, smile, make eye contact…like the best interviewers do.  So for our little conversations,  it felt to me like I was being listened to by a Very Important Person. From what I could tell, she was even more generous and supportive in her talks with my Mom (of course Mom let me know that this was grownup time to talk)  so I didn’t have a big window into what they discussed…and if she’d ever had a pity or aversion reaction to my disability, I’d never seen it.

My last memory of her is a visit to her home in Maryland in about 1970.  She was an outside person, deeply involved in working in the garden.

Looked like too much hard work to me, and I wasn’t fond of standing what seemed e a long while while her and my parents enthused over it…but I liked the idea that she wasn’t afraid to showcase her hobby as if it were the only hobby in the world.

She was the first person who I thought “Oh, I want to be just like her when I grow up.”

(Had I known how supremely unlikely that was going to be, I think I would have been better off.)

My parents were good-looking people and most of their friends were good-looking too…so, I had an impossible bar I set myself:  To be just like any of them was, in fact, impossible.

There was one friend from about four years later, quite a different person.

He was a small man.  He  met my parents through the (semi-professional?) bridge games that played in offices and other venues…I think my Mom told me that his style of play was like hers.  More deliberative and analyitcal…so when they were partners in a game, she was never verbally punished for taking her time.  A quiet pleasant guy whose unassuming look with the nerdy glasses concealed from any newcomers that he was a great player.

My father, on the other hand,  was almost inhumanly quick at figuring out how an individual round might go…and tried to find partners that could integrate that quickly

Sometimes, this bridge player would come to our house (I pestered, and he also came on his own…to make time to play games with me.  Cards. Monopoly, I think…)  It wasn’t a pity thing.  He liked and respected my Mom, took very little of my Dad’s crap, without raising his voice or actually fighting…and, I think he thought I was somebody worth saving.  Not from the disability at all, but from the difficult circumstances.

When I first knew him, he was alone.  He had had a very very difficult life as well, and I won’t breach his privacy except to say that as time went on, he did find companionship with a woman he met at the bridge games…his happy quotient went way up, and even at my age, I caught the better moods, and the increased use of a sense of humor.  He had spent so much time with me that I valued, I was glad to see him have good things in his life.

He was our friend during the disintegration of my family life, and so I  clung to any mental life rafts offered to me by my Mom, and by friends of hers who were not my father, the drunken screaming liar.

If you have a friend, give them your attention, and give them some decency, especially if you find it missing in other areas of their lives.

I believe that good friends, and friends that are good to you are  just as important as family.

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I’ll never get it…

November 19, 2010 at 9:49 PM (Uncategorized) (, , , , , , , , )

Via the Washington Post:

While anything else at all is still speculation and “alleged,”

There is no doubt that a young girl with disabilities is dead and her body parts scattered.

It is a profound violation whenever it happened and how it happened and whomever did it.

On discouraging dark days, which this has been…I feel like the invisible “vulnerable” tag that many of us seem to wear will never come off…that we are seen as prey for the unbalanced to use….or the accountants to target, as below…

And, via cable news

Poor people with chronic illness whose transplants are too expensive to pay for…98 Arizonians who have committed the cardinal sin of becoming poor and qualifying for Medicaid/Access… waiting on the transplant list have been completely cut off, in one case just as the patient was being prepped for surgery… If those patients do not get those transplants they will die, leaving wives and children behind.  A true ‘death panel.’ stemming from legislation passed earlier this year.

We deserve to be safe in our own homes.  We deserve to have every chance to have more birthdays, that a transplant or other life saving procedure would give to us.  My cousin was a Medicaid eligible transplant recipient, and that transplant very nearly changed her back (on the inside) to the merry person I had met when I was 15. No longer the desperately ill, despairing, stretched beyond her limits person she had been for six years prior to the transplant.

Making sacrifices for our country’s economic health is something we should all do…but partial cuts in service, not eliminations…lose part, rather than the whole…

But no state in this country should require it’s citizens to die, so that a budget may get balanced.

Let me get this straight.  98  poor people should die that will save 4 million, (roughly 40k for each person whose transplant was denied)…and by the way the wealthiest among us need an extension of a tax cut they agreed to end at this time when it was put into place.

D@mmit!  Stop it people!  Stop!


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Uh, well D@mn! or In Which I win 1/350th of an award

November 18, 2010 at 11:48 AM (Uncategorized)

The Encyclopedia of Disability History, a library reference tool I contributed to, has just won an award:

Booklist, the publication of the American Library Association annually
honors top reference works through their “Editors’ Choice: Reference
Sources” award. Qualifying reference sources must be accessible to a
wide audience, including high-school level readers and above. The
publisher Facts on File has just sent word that the  Encyclopedia of
American Disability History is one of this year’s recipients.  This
3-volume Encyclopedia benefited from the work of more than 350 authors.

It still feels very bizarre to me that this happened.


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November 16, 2010 at 7:38 PM (Uncategorized)

1. “The Biggest Loser” is a really flawed place to discuss weight issues…I could list all the show’s flaws,  but I won’t.  I do watch this every week to see the folks and how they handle it.

But aside from my problems with the show, something happened on tonight’s show that I found appalling.

There is a segment where the family of the contestant sends a video from home, to encourage the contestant…

One woman’s family declined to send her a video, and according to her, when she left home for the show, their attitude was, lose 100 pounds or don’t come back…

I figure all that non-support may have played into her weight issues, duh?

And one word for that family:



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Even the homebound have movie stars.

November 11, 2010 at 8:49 PM (film) (, , , , , , )

Myself and three of my blog-aquaintances (blogquaintances?) have dealt past and/or present with the soul-stifling reality of being homebound…where along with any other mantras one chants, I think a necessity is this one: “it’s-better-than-an- institution,it’s-better-than-an-institution-it’s-better-than-an-institution…

I love Turner Classic Movies.  In the last five years I’ve seen at least 15 films that meet the “Buy the DVD when you have money again and watch it obsessively,” threshold for me and scores more that I love watching, but don’t feel the need to keep.

And one  that despite the melodrama, hammish acting by the male lead and unabashed sentimentality, that has been instrumental in keeping me mentally moving forward.

The Barretts of Wimpole Street. The beginning of the story of Elizabeth Barrett and Robert Browning

I don’t contend it’s historically accurate.  I don’t watch for that.  But…

The plot goes that a woman with  chronic illnesses a friendly attentive dog. and a dysfunctional family manages to become a nationally known poet from home, living in her bedroom.

There’s this one annoying cousin that  pushes the “sick person as saint,” line, but her immediate brothers and sisters don’t. She falls into the unfortunate role of ‘sick person as confidante in the beginning, as many of us do, when the able come to us with angst in their lives, about things we think we ourselves will never get to experience.

But soon, another poet meets her, rather suddenly falls for her and offers the very real possibility of a life beyond the walls. (Frederic March who played Robert Browning was apparently very embarrassed at how “hammy” he was.)  I’m ok with impulsive, brash, ridiculously cheery and loud.  I was married to a guy that acted like that sometimes.

I like that fact that although Norma Shearer’s Elizabeth improves, her getting completely ‘healed’ is not the main  point of the movie.   It drives home the point that it’s the dysfunctional family, a dynamic beyond her control, is limiting her far more than living in an upstairs bedroom is.

Her father is played to creepy effect by Charles Laughton.

The film ends with a list of positives, and hints of something Robert Browning may have given up himself, in order to commit to Elizabeth.  It’s sentimentalist , overacted by today’s standards, but the steady upward path of her progress, moving against more than one difficult tide of her life, with her talents as the springboard…I love it.

It’s a real chick flick guys, so avoid it if you can.  But it’s a pointer…for a way to have more good days, more hopeful days…At home.

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