I need my able bodied friends/family to read this…

March 24, 2012 at 6:35 AM (Uncategorized) (, , , )

and try to understand why persons with disabilities get to a point where they do not trust any of you.

Peripheral details have been changed here…but this really happened. [ my friend from high school. Michelle S From Florida passed this on]

Anna and her daughter Molly live in a building for people with disabilities in the sunny state of Florida…

They are really generous folks and pass on good advice and help to anyone who comes to them…

They met a young fella with disabilities, who was visiting someone else in the building..he was 35 or so…He lived with his mother.

Over time, he trusted them and would rather visit them, than his own cousin.  And told them what his home life was like…

The house was cluttered enough for the parents to be called ‘hoarders.’

He never saw his disability check, because his parents used it all….

They had a spare apartment for him…and had told his doctors years ago that he was living in that, when in fact, the hoarding blocked it…and he lived on the couch downstairs…

Anna and Molly knew that things could be better for the young man, so explained how to get on a waiting list for their building…and the young man did so.

Furniture and household goods were purchased for him…kept in waiting at Anna and Molly’s, a grand Christmas party was thrown by Anna and Molly, and he and his mom had a great time.

Two days before his move in date…the complex got a call.  Someone claiming to be the young man himself, and sounding enough like him to fool the office staff…called and said he would decline the apartment.

The young man came two days later….and was told by his cousin the apartment was no longer available.

Of course…the parents weren’t going to let go of that money.  Not for anything. Even the difficulties of caregiving (such as it must have been) in the middle of a hoard wouldn’t pry their hands off that young man’s disability check.

Sometimes  we have loving family and friends that help us too much…they’re overprotective out of concern.

Sometimes, we have loving family and friends who consciously try to strike a balance between help and support and helping us handle a lot of things on our own.

And much more often than anyone knows…we cannot trust those with our DNA. We cannot trust those we believe to be our friends.

When I heard this one, it made me sick.  My hands shook for two hours. My stomach was a mess.

I’ve never been comfortable with ‘separatist’ movements among minority groups…it just always seemed like you’d miss too much, knowing only your own identity and no others…

But now, I begin to get it.  Not like I’m signing up…but there is a powerful attractive pull after hearing stuff like this.

I now understand better than ever persons with disabilities’ wish that  we could get the care we need, socialize and relate and count on those like us…and bond amongst ourselves….and handle every societal need without ever having to count on the abled. Not friends, not family, not aides or other professional caregivers.

…and lock those who would be predators out of our society…even as we’d have to lock out genuine able bodied allies at the same time.

We live among cavemen…the law of the jungle…can be acted out just down the street.

They didn’t just take his money.  They take his freedom every day, his thought, his spirit, and the hope of independence…

Someday, I truly hope they get called out for the way he has to live.


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No Honor Among Thieves

May 14, 2010 at 6:25 AM (Uncategorized) (, , )

Stealing from teachers with different points of view, now are they?

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Another thing the able just don’t get….

April 19, 2009 at 12:17 PM (Uncategorized) (, , )

Why it is so important to trust your caregiver, and why even that isn’t enough….

I’ve read on other blogs about doctors assumptions about non-verbal patients, about so-called caregivers stealing personal effects right in front of their owners…

When I discuss this with the able, they say “Do you *really* think that happens? Oh I can’t believe *that?*

The level of denial just astounds me:

So I’ll share a story about a ‘caregiver’ to my perfectly able cousin….It can happen to the able too….

When we were teenagers it was a huge deal to record popular songs we loved…boxes and boxes of cassettes, testifying to waiting tensely in front of the stereo and pouncing on the record button when the good stuff came on.

My cousin was childlike. Not childish and not impaired. She just never lost the love of the things she loved when she was a girl or a teen. Loved Christmas carols so much, she’d pull them out and play them in July, if she got sad or blue.

Her musical taste I guess was Top 40 + . She liked all the stuff that was played endlessly….but she also had a nose for the AOR (Album Oriented Rock) stations that *stayed away from disco* Thank God.

We both did massive recording, but she numbered each of her completed tapes, and made a list in an old greensheet notebook of each song in order on each numbered tape, so that if she wanted a specific batch of songs or a single one she could go right to it.

Even near the end of her life, in a nursing home, she called the local oldies station every Saturday night and requested a bunch of songs….They knew her trouble and played as many as they could….

Her family was a dark place. Drugs were around, and alchohol at a very young age.

Everyone was using, including her next youngest sister (except her youngest sister, who would take it up in a year or so anyway and her father, and he could or would ? do nothing to stop it.) I stopped going to that house shortly thereafter when a dispute settled with kitchen knives landed her in the ER….

In 1982 she had a full time job at as a fast food manager. She bought the most crazed tricked out stereo system I had ever seen….and would demand time in the attic alone, without anyone else high or drunk in the mix to flip through her list and replay the best.

Then she went to work one afternoon about three months into the job…

And came home… The dog and the house were quiet. Everyone was there.

Headed upstairs to hear some tunes…

And every part of that stereo system was gone.

(this next is the truly nasty part)

Every single homemade tape was also gone.

She knew it was her mother and her mother’s boyfriend, or her sister (s)….All of them cried and denied and lied so she never knew which for sure….

She called me, crying and told me what was up….

So I got my spare, pathetic little manual tape recorder, and four of my homemade compilations that had stuff she liked, and hit the bus that night.

I said it was a loaner, until she got some real stuff again.

I couldn’t believe it. All that hard work….all that painstaking listening and writing and numbering and storing…..

Sure, the stereo itself would have gotten a bit of moneyfordrugs…and that was bad, because she’d worked some serious overtime quickly when hired to get the system

But the time to take to bulk erase and possibly resell the ‘blank’ cassettes….” That was just personal and mean spirited and cruel….

After all, she’d been so “mean” to her mother…

Cooking and Cleaning and raising her sisters so her mom could waste her days with candy and romance novels through the smoke and surrounded by dust and dirt….

Shoveling the driveway because her father was too far gone with COPD to do it.

Her notebook with the lists had not been stolen… So, incredibly… She renamed it her ‘sob’ list (sob for crying, not for the B word.) and began again, in her time off….she bought a cheap system, gave me back the loaner while actually crying with gratitude and made it clear she’d go to the cops and turn her *entire* family in if they pulled a repeat burglary…

Once she married, (1985) her new husband having heard of this f***ing disaster, bought a truly amazing system for her so she could continue the restoration in high style.

It took her seven years.

She called me in 1989 to tell me her list was again completed (although in a different order…there were all these arrows in the notes now, and conversions from one numbering system to another)

Ok able….now here’s my point.

This happens to your disabled friends and family *all the time* in the care of strangers.

Stuff gets taken by caregivers, because part of the reason the nasty ones join the racket is to see if they can steal anything worth selling.– a similar motive to the soulless ***** that stole my cousin’s stuff.

And people with impairments generally don’t have the bucks to replace what gets taken.

If you’re helping a friend or family member set caregiving up….

If there’s a way to run a backround check…do it.

Take note of the things in the home and check when you visit to see if all looks ok…

Because the person with the impairments might be too scared to tell you, or unaware that something is gone….

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