Two things that make me angry

September 17, 2013 at 10:00 PM (Uncategorized) (, , , , , )

One personal one not, seem to have converged under “Background check consequences.”

I have a good friend whose medical status caused her to have to resign  her last position ( due to a painful, ongoing  disability) without notice. She has another job, but it’s part time no benefits. I firmly believe that when she applied for more than 100 jobs over the spring and summer, the reason she did not get a single one of  them has to do with her credit score and her last employers admission that she is not eligible for rehire. (to protect themselves, of course they do not go into *why* ) Was she an extremely competent, well liked and award winning employee at her last job? Yes she was. But all that goes out the window because she committed the unpardonable sin of leaving without notice.

She’s living in one room in a rooming house. Has been for two years, and she cannot even use the kitchen there because it is one floor above her (thank God she’s on the same floor as the shower and laundry)  She needs health insurance and at present cannot get it, and may not even be able to get anything affordable on the exchanges because there will be no Medicaid expansion in this state. Her car has died because she hadn’t the funds to repair it. She has type two diabetes, and uses busses and walks with crutches. She has lost the padding on the bottom of her feet for some reason and is literally skin and bone with every step. She also has severe diabetic neuropathy with no way to afford the Lyrica that would ameliorate that portion of her chronic pain.

Her disability claim was denied (!) so she keeps working, with the chronic pain that is constant and also keeps her dealing with insomnia, not to mention that fall and winter are coming and they will make bus travel extremely dangerous for her. Essentially, the consequences of a correctly run background check for her mean no chance to get a real apartment, a full time job, or healthcare at this time. All for the crime of leaving a job without notice because she was dealing with painful ongoing impairment.

Then there’s Aaron Alexis, the shooter in DC.
The consequences of the background check run on him for his contracting firm by another contracting firm, (Source: The Rachel Maddow Show), is that no one found or acted upon his history of mental health problems…so not only did he get to keep a job he never should have had access to without managing his mental health…the end result has been the deaths in DC.

Screw up with [your personal] money and leave a job too quickly and you never get a decent job again, apparently.

Have a visible ongoing record of mental health issues that made you a danger to yourself and others?

Work on, dude. Work on.

That’s fucking wrong. I don’t know how it can be fixed but it’s fucking wrong.

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How to Label this one…or Immune System Follies

February 25, 2012 at 10:59 AM (Uncategorized) (, , , , , , , )

In addition to my cerebral Palsy, Asthma, Carpal Tunnel, Depression…Theres this new thing, lymphadema I don’t know. But I’ve received confirmation from a medical source I trust that my case of lymphedema has a bit of a different twist than others.

It’s an illness common to cancer survivors…breast cancer patients are the most common recipients of this sort of consolation prize.

But in my case, my original cancer was cancer of the lymph nodes. Because my lymphatic system was weakened in the first place, it makes the lymphedema more dangerous to me in particular.
While the cancer has not returned, per a medical professional I trust, this is a sign that the whole lymphatic system is weakening. Lymphadema is not curable, and will not go away.

With the agressive therapy, I can hold the line on this for a time, against progression to congestive heart failure. My heart is in good shape at this time.

(One really annoying thing about the therapy. ) in addition to all the time working physically I *have* to lie in bed and keep my legs up for at least two hours during the day. *That’s* not going to help any weight loss goal 😦

One thing the docs don’t know is how much or how little time it can be held off. Could be twenty or thirty years. Could be six months.

One thing the docs do know: Barring some other intervening illness or injury…eventually my lymphatic system will shut down, and that…will be my endgame.

So, betwixtandbetween. Not directly terminal…but it feels pretty odd to have a likely ending scenario mapped out already.

But dumber still. Someone said I ought to be pissed at my oncologist.

WTF? The guy gave me *twenty years* and however many more i’ve got!

I’m not going to ‘get mad’ at him.

Sure, 85 % of me is peeved at The Universe for handing me this.

(14% shrugs like a Frenchman and says c’est la vie. The remaining 1% says it’s been a damn long wait to see my husband, and if that’s how it’s going to roll, well then that’s it.)

And it’s so darn nebulous, I forget about it sometimes. When I do think of it I don’t know how to feel about it from day to day.

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January 18, 2011 at 12:27 PM (Uncategorized) (, , , )

Hey! Legislators!

You know your repeal won’t get through the Senate, right?  And even if it did, President Obama would veto any such attempt at repeal?

So this vaudeville act is more important than getting the economy moving?

Oh, it’s a “job killing” bill alright.  The longer you waste time on a bill you admit is going nowhere,  the more jobs get killed.

I don’t even care if you push *your* version of what you believe will create jobs.  I don’t like it, but it’s just a smidgen better than wasting time on nothing.

Look.  Just because *you* don’t need a job doesn’t mean there aren’t many many people out there — a significant percentage of whom *voted* for the new Republican Majority.

Who *do* need jobs.

So they can spend money to buy stuff made by corporations.  Who give you money to run your campaigns…

And presumably get re-elected.

Good God, you people are deaf.



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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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The Basics

June 17, 2009 at 8:42 AM (Uncategorized) (, , , , )

Dear Left:

From our understanding, you are our ally.  But like many other “Othered” it seems like unless you have a ______ in the family, your vision of civil rights, or your sense of urgency about a particular set of civil rights is limited.  The LBGT community is feeling a lot of this right now about DADT and DOMA.

Then there are “our” issues, some of which, someday as you age will affect many of you. For those few that will read this diary,  I feel strongly that you should ponder the following questions. It’s why I put them out here.

With this economy, many of you now know what it feels like to lose a job.

How would your self esteem be doing if you’d never worked at all, even with the skillsets to handle some sort of work?

We’d like to work for a living.  Many can, but don’t have the opportunity for the dignity of work.  Vocational Rehabilitation was gutted under the last administration and the disability community folks that seek work must do so through less welcoming, less accessible channels  (workforce centers for the unemployed, etc.)

We’d like to  live in our home.  It’s cheaper than institutionalization (better named “warehousing.”)  $1000  a day of taxpayers money is paying for institutionalization when in home care could be handled for much less. With the economy as it is, why in the **** are we *throwing away money* and doing it in such a way that it halts the greater good?   (The Community Choice Act, which addresses this discrepancy is currently ‘off the table,’ in the healthcare debate.)

We’d like to be able to have workarounds to handle personal care and breathe well, throughout our day. (competent available nursing care for vent dependent folk, and others.)

What would your life be like if you couldn’t access the items below?

Eating home cooked food.  Having some dominion over what tech you use to access to the internet, (or access to it at all! ) and a choice via the TV remote for what you watch.  We often have little or none of the above if institutionalized.

We’d like freedom to socialize, see friends, maybe more than friends.  Attend concerts. Hit a movie.Nothing like being institutionalized to limit your social life.  (And gods forbid, travel occasionally.)

What would your life be like without this stuff?

So many of us are in a kind of existence-stasis.

I submit that these issues don’t have the rhetorical punch of marriage rights, opposition to wars, concern over wiretaps and torture.

I submit that many of us have known the feel of prison, neglect, and even abuse, long before the debate surrounding our country’s  responses to 9/11 began.

And those with the least physical, mental, financial and emotional resources for ‘being patient’ and ‘waiting,’

Are being told to do that very thing.

Just ‘hope.’

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