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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Should persons with disabilities live? This article nails it…

June 14, 2011 at 10:39 AM (Duty to Die Movement) (, , , , , , , )

Jack Kevorkian has left the planet.   I’ll say no more, on the grounds of  “if you can’t say something nice, don’t say anything at all.’

Maybe the Duty to Die advocates will be quieter now.

Via Stephen Drake and “Not Dead Yet.”

‘Even though the article is from 1993, it’s even more relevant now,as the “pull yourself up by your own bootstraps,” ideology is even more in evidence.

My favorite quote from this?

If people with disabilities know that they can rely on someone to get them out of bed in the morning, maybe more of us would find a productive reason to do so.

If we can be either conventionally “productive,” by working, or add something to our society by our talents, or by volunteering…um breaking news:  We still have to be here to do it.  With correct caregiving the productivity of persons with disabilities, working or not, would skyrocket, and at the same time the cost of the caregiving would have some offset because less medical expense would accrue, since you’re less likely to suffer from depression, and less likely to have medical issues  or accidents that cause further injury with proper care.

Not to mention the fact that nursing home care costs as much as twice what home care does.  (and yes, I’ll keep harping on this til the Tea Party, the Republicans, the Democrats,  and all the other smaller divisions in  all fifty states cop to the fact that this would save them a ****load of money without cutting benefits, and pass legislation modeled on community choice.)

Instead of having the worries and fears over being abandoned and getting sicker, over finances, over relatives that *want* us to do this… drive us to consider assisted suicide, we’d be considering our lives, and what’s up tomorrow.

As Not Dead Yet and other advocates for persons with disabilites to, ( oh, I don’t know, keep breathing?) often say:

Consideration of assisted suicide cannot be framed as  irrational for able-bodied people, but at the same time rational for persons with disabilities or our elders.

That is a falsehood with dire implications.

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Intersection of voters with disabilities

May 27, 2011 at 3:35 PM (Uncategorized) (, , , , )

and the new voting requirements that will make voting more problematic for PWD’s

Back in  April, the NYT did an article listing the parameters of the new requirements in general, and now AAPD is focusing in on just how the new rules undercut HAVA’s intent to make it easier for persons with disabilities to exercise their constitutional right to vote.

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HAVA and Tuesday.

October 28, 2010 at 7:54 PM (Uncategorized) (, , , , , )

I was told by a stranger, a gentleman I don’t know awhile back that I need to save the government money, and just off myself (because of being on disability.) I’m glad I wasn’t feeling vulnerable that day…or who knows what would have gone down…I said, “Well, sir, if you become a quadriplegic in an auto accident, or live to see old age I wonder if your view will change…”

I’d bet that stranger is all for either a temporary government shutdown that some in the Tea Party/GOP have been mumbling about…

Or standing by acting to privatize the above and gambling with it in the stock market….or, perhaps removing it altogether…

I know persons with disabilities or seniors you aren’t directly related to can become de facto invisible in legislative wrangling, political discourse or the public sphere…

I’d hope it does cross your mind, just enough to be one of the many reasons to vote vote vote.

… if anyone has physical issues in getting to the polls and haven’t had a response to a local query, check my profile and send me an email with your city and state (and preference of party to contact it you wish) and I’ll get them to email you… and set something up…The Help America Vote Act, HAVA is there to help out once you get to the polls.

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The 1/2 Compromise and Health Care (Updated)

July 17, 2009 at 11:05 AM (Uncategorized) (, , , , , , )

I hope you all will pardon me for the tone and lack of proofing in this diary.

Somebody at the NYT let this man write. That’s on their heads. But when Peter Singer starts babbling about the value of the lives of persons with disabilities, as it pertains to the health care debate…I have to speak. I am compelled to speak. Because this Princeton chair is, to put it mildly, full of  crap

I’ll preface this by two things. He is an advocate of rationing care, and that particular piece of it I’m not disputing. I also know that if care is cost/benefit rationed there are unfortunate formulae that must be used. Life insurers and attorneys do it all the time. It is the insidious nature of the examples he’s using — but as many in the disability community already know, this is the guy that opined that killing severely disabled infants after birth might be something society should look into, to save itself the burden.

I’m at the computer. I’m shaking with rage and it has to come out. Don’t bring us the formulae of economists and sociologists Mr. Singer, in the guise of stating in a mainstream newspaper that we should accept the idea that a person with a disability’s life is worth less than the famous 3/5ths compromise of the 18th century.

One common method is to describe medical conditions to people — let’s say being a quadriplegic — and tell them that they can choose between 10 years in that condition or some smaller number of years without it. If most would prefer, say, 10 years as a quadriplegic to 4 years of nondisabled life, but would choose 6 years of nondisabled life over 10 with quadriplegia, but have difficulty deciding between 5 years of nondisabled life or 10 years with quadriplegia, then they are, in effect, assessing life with quadriplegia as half as good as nondisabled life. (These are hypothetical figures, chosen to keep the math simple, and not based on any actual surveys.)

Put this in the New York Times? Get the idea out there that we’re worth less? My problem with this is that the idea is now out there. Pandora’s box has come open, and some able now get to nod in agreement over their orange juice.

But the few, the invisible, the ones with (gasp!) quality of life, understandably hold a different view.

Disability advocates might argue that such judgments, made by people without disabilities, merely reflect the ignorance and prejudice of people without disabilities when they think about people with disabilities. We should, they will very reasonably say, ask quadriplegics themselves to evaluate life with quadriplegia. If we do that, and we find that quadriplegics would not give up even one year of life as a quadriplegic in order to have their disability cured, then the QALY method does not justify giving preference to procedures that extend the lives of people without disabilities over procedures that extend the lives of people with disabilities.

Yes, we might. We just might.

This method of preserving our belief that everyone has an equal right to life is, however, a double-edged sword. If life with quadriplegia is as good as life without it, there is no health benefit to be gained by curing it.

He’s not talking about the Pro-lifers…it’s a different sort of right.

But, Mr. Singer (she said as the student at the feet of the Idiot Who Poses as a Wise Academic)

Have you, in your well known, vaunted, academic career ever come across such a thing as nuance?

Here, Let me demonstrate.

The disability community does not sit around and wait for cures in our day to day living because there is life to be lived, words to be said things to get done. We are not the perpetually abandoned prom date. We don’t need a cure to be valuable human beings. However if we and our allies choose to be a part of some of the many advocacy organizations and docs and scientists out there come up with a treatment or cure that would ameliorate some or all of the impairment…some of us may try it and benefit from it, and that is a good as well. We live lives as paras, quads, other kinds of gimps, etc, live life as it is given to us, and by that, demonstrate its value. And, I despise Mr. Singer, your particular brand of free speech, to even begin to let seep into the watertable of our minds that my life is only worth half of yours. The healthcare debate is one we have to have. But not in this sick little corner. Not with this man. Not me. I know my value, and you haven’t got a ****ing clue what it is Mr. Singer.

Update: Now, this would actually be fascinating if his philosophy didn’t remain so repugnant.

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