What Does it Mean to Change a Healthcare Aide

A Healthcare aide is a person who allows us to keep our dignity, living in our own homes, tending to our gardens of food, friends, small money making hobbies, and social relationships within the community.  For some of us this person Is the primary social relationship we have.

The alternative?  An institution which is dehumanizing as all residents must be treated the same and expected to behave in particular ways at particular times, like machines.  Some institutions abuse disabled people and none of them can afford to provide enough room for gardens, of any kind inside the institution.



Healthcare aides are often underpaid, hard working people and if they can find better jobs it only makes sense for them to leave.

What Does it Mean to Change a Healthcare Aide?

I want to talk about one particular change which most of you have never had to make.  First, let me state clearly that I am Not complaining, either about the healthcare aide who made my life more fun and enriched it by her presence, Or the intelligent sensitive person who will be replacing her.

A friend once told me that change gets harder as you get older.  I wasn't sure I agreed with him at the time.  As a Buddhist, I know that the only thing I can count on is the impermanence, the changing, of everything.

But today I am thinking maybe he's right.  When you lose the help of someone who has made a huge difference for the better in your life it's hard.  I feel sad.

And when someone new comes to take their place, if they stay a while, it changes your life.  It changes what time you get up in the morning to be ready to begin working with the new person, and it changes what time you try to go to bed, whether or not you sleep.  I don't know how to arrange my schedule around these new, earlier hours.  I have been a night owl since childhood, but most business seems to be conducted during daylight hours.  Will I become more sleep deprived or figure out a good new schedule for myself.

If you respect a healthcare aide as a fellow human being with the same rights as you have, then switching to someone new is an investment.  It means learning what makes them laugh, laughter makes life easier for both of you.   It means listening to their troubles as you work together.  Since most of my troubles are rather obvious, I can't read flat shit, (print) and I can't drive, and sometimes I need a person to talk on the phone for me to someone who won't or can't raise their voice, I try not to afflict the person who works with me with any inner pain or turmoil I may be having.  But their problems are more likely to be financial and emotional and someone to listen can be helpful.

If a former aide has chosen to stick with you through a traumatic life change, (for me it was Ann's death) then loosing them is even more frightening. I do not know what I would do if I hadn't had the Great fortune to meet the lady who will be my new healthcare aide when she was working with another blind person I knew.  

In the past, when a new aide came to our home, Ann and I Both made it a point to be around, paying a lot of attention to what the person was doing.  I no longer have a back up. I was considering refusing any more healthcare aide hours and trying to cobble together a system of sporadic volunteer help, with me buying gas, treats the volunteer liked, etc.  But a regular schedule is usually much easier to work with, once you get used to it.

Also it means finding out what may offend the new person and working out a style of communication which is honest but doesn't hurt either of your feelings.  It means finding out jobs they enjoy and those they do not and trying, if possible, to take on some of those they do not.  Most of the time I can wash dishes.  But occasionally the tendonitis in my right hand and arm is so bad that this is an extremely painful activity.  Working with someone new means teaching them what you need, (help with ASL practice) and which things are usually but not always possible for you to do, (washing dishes, for example).  In other words, it means ending one relationship and beginning another overnight, or over the space of a couple of days.  It is painful and difficult.

But those who work as really good health care aides in one's life are Wonderful Gifts, they are not machines.  So it is only fair to treat them like the valuable people they are, whether their employers do or not.

This is a difficult change.

Help American Workers in Chicago

These workers aren't just fighting for their jobs. They want to buy the factory.

But the factory owners won't take them seriously.

Stand with these workers

Stand with workers in their fight to save the factory from being sold for scrap.

Click to Add Your Name

When the workers at a window and door factory in Chicago were told their factory

was closing and they would lose their jobs, they decided that instead of letting

the company's global investors determine their fate,

they would raise the money to buy the factory and save their jobs.

But they can’t do it, even though they’ve put in a competitive bid on the factory.

Why? Because the owner,

Serious Energy, and its global investors Mesirow Financial, are in a rush to sell

the factory

 to people who will sell it off for scrap instead.

We can help the workers save their jobs.

 Serious and Mesirow know pressure is mounting, which is why they are rushing to

sell the factory off. If we weigh in today, the workers believe Serious and Mesirow

will have to give them a fair shot at buying the factory and saving their jobs.

Stand with the factory workers in calling for Serious and Mesirow to discuss a fair deal that saves the factory and the workers’ jobs.

At the end of the day, this is about much more than saving one factory. This is a

chance to showcase an innovative model of American manufacturing -- worker-owned

cooperatives -- and deal another blow to the financial sector that relies on the

failure of these companies to line their pockets.

By saving this factory, we are helping to build a more just economy for all of us.

Thanks for joining us in fighting for good jobs,

Claiborne, Kaytee and the rest of us

Background story:

In February,

workers at an energy efficient-window and door factory in Chicago were told that

their plant -- owned by Serious Energy -- was about to be shut down

, sliced up and sold off for parts.

The workers staged a factory occupation and got an agreement from Serious to delay

the factory’s liquidation and

give workers the opportunity to buy the plant themselves, with their newly-formed

cooperative, New Era Windows

. With no overhead for executive salaries, and the potential for contracts with the

city of Chicago, which is gearing up for a big energy-efficiency campaign, New Era

Windows was looking at a bright future as a worker-run factory.

But then, after months of stalling by Serious,

the company suddenly announced on Sunday that all factory bids were due immediately,

and that it wouldn’t accept New Era’s offer

 of $1.2 million -- instead, it asked for more money than it bought the factory for

in 2009, and

rigged the process to ensure that New Era didn’t have a chance.

These workers want a solution. They have been scraping money together to afford the

factory and save their jobs. And they’ve fought like hell before -- back in 2008

they occupied their factory for six days and stood down their previous owner who

attempted to fire 250 workers without severance pay.

Part of the pressure to sell is coming from Serious Energy’s owners, including Chicago-based

Mesirow Financial. For Mesirow, selling the factory off to vultures means padding

its profit by a couple percentage points. For the workers at New Era, the factory’s

sale represents their livelihoods.

Stand with the workers at New Era Windows: Tell Serious Energy and Mesirow Financial to work with New Era Windows to find a reasonable solution.

*******************************

Further Reading:

Workers seek arbitration to save Goose Island window factory

, The Chicago Tribune, 3 July 2012

Workers vs. Investors: Chicago Window Factory in Danger of Liquidation

, The Nation, 5 July 2012

 SumOfUs is a world-wide movement of people like you, working together to hold corporations

accountable for their actions and forge a new, sustainable path for our global economy.

You can follow us on

Twitter

, and like us on

Facebook

I needed my Braille display to tell me the name of the second company Wasn't Mess Around.  I knew no company would call themselves that, yet somehow it Did seem appropriate, as in "Mess Around with your workers" or Mess Over, etc.

Whenever people complain about foreign aid they always say "No one is helping Our workers here at home."  So please forward this to your complaining friends.  You can also tell them that they may have the inconvenience of having to Unsubscribe from receiving further mail, but that this Pales in comparison to losing your job, maybe your house, and possibly having to go to a homeless shelter!

What Do You Drink, and a Thank You

What Do You Drink and Thank You

We have had unusually hot weather for June and the beginning of July.  The lakes are dropping and cities are warning people that a ban on washing cars and watering lawns may soon be in effect.  After that the car washes may close and burning bans seriously curtailed fireworks use for those smart enough to listen.

I have been praying for rain.  The way I do it, it's hard to pray for rain from indoors.  I go outside and talk to the Earth, the Sun, the Winds and Water Woman, said by one Cherokee elder to be similar to Kwan Yin, bringing rain in her vase of compassion, too.  I can't speak out loud, of course, I have neighbors.  And in some places they lock you up for such things as my kind of prayers.  I talk about the needs of the fish in drying creeks, the thirst of the trees, the plants, the birds, and insects.  I acknowledge that without any of the elements I call we would all be dead.  No Sun, dead.  No Earth, dead, of course. No atmosphere, (sky) dead again.  And no water, dead.  Then I talk about the needs of all for water.  The cattle, the deer, squirrels, they All depend on water, just like we do.

I try to send my mind up into the sky, to touch the winds, Sun, and Sky with it and my request on the behalf of all needing water.

Last Tuesday it rained in a small location, which, thankfully, included me.  It was a hard short rain, about an hour, but the run-off will feed lakes, rivers, and streams.

Since then I've been trying to think of each bit of water I drink as Rain.  When I drink water I'm more apt to be careless with it.  Fill the cup and dump half of it back down the drain,run the water to rinse dishes instead of scrubbing out the sink and filling it with hot rinse water.

But when I drink Rain, I put into the cup only what I want to drink.  If there is a swallow or two extra, I drink it.  I try to remember how much rain I waste running water to rinse dishes, etc.

It makes a mental difference whether I drink water or Rain.

When it rains well I used to go outside and spin in a Happy Dance of Thanks! But now since I have moved after Ann's death, neighbors can see me.   Now I stand on my front stoop edge and stare straight up into the sky, smiling like I just won the lottery, and trying to touch the sky, the thunder and lightning, the clouds, and of course the Rain, with my relief, joy, and Thankfulness.

I thank the Sun for allowing the clouds to hide her so that we can all drink rain!  Since I don't talk or dance no one can call the authorities to take a look.  And if people stare, so what, I don't have to see them.  I don't know that it's logical, but when it is needed, I am Truly Joyful in the Rain.  And I don't know much about happiness. 

An important person in my life who has helped Ann and me, then just me, for two years is leaving regular visits to my house to go to a better job.  Yeah for Her!  I am truly Glad.

But it's a bit scary to lose a healthcare aide who has become a friend.  Wendi, I want to Thank you for your kindness, your laughter, your extremely hard work,your flexibility in helping me with everything from computer problems to showing me where someone's dog had made deposits in my yard so I could clean them up and Not have to find them the Hard way!  Thank you for sticking with me after Ann's unexpected death and for helping me set up a Great Memorial display of the things she did and loved at our rent house.  I haven't forgotten your work, sorting through Mountains of paperwork, (a job I Couldn't do) and pictures, which I couldn't see.  Thank you for delivering donations of Ann's things to people who had nothing.  You were a part of why I'm still as sane as I am.  Thank you for sharing hysterical E-mails, some of which I have kept.  You could have left after Ann died, but you stayed and took on Her work, like helping me pay bills, deal with print junk mail, and you helped me Find and put away things after I moved.  You have done so much more by just being You that it would take many pages to thank you properly for your cheerful taking on of so much hard work.

But since you do me the honor of reading this blog, I want to say the most Public Thank You I can.  It's not enough, but I cannot think of anything to do which Would be.

May you have happiness and the Best of fortunes!

Should we "Invest in Burma?"

It was refusal to invest in South Africa which helped to bring white minority rule to an nd.  The state of the daily stock market may have little or Nothing to do with the lives of most or at least Many ordinary working people.  But it has a Lot to do with the success of multi-national corporations and their large share holders.

Since Secretary of State Hilary Clinton made her much publicized tatement, urging American businesses to "Invest in Burma" the US. Campaign for Burma has reported intimidation by rape, farmers being forced by the military to leave resource rich land and become internally displaced refugees, torture of political prisoners and ordinary people for non-compliance with military orders, etc.

I sent the following mail to the BBC which has waxed optimistic about investing in Burma, only sayin there are "ethnic tensions" between  the Rohinga Muslim people and Buddhists. 

The US. Campaign for Burma wants the People of Burma to have their Own Independence Day.  They are asking everyone to call their Federal Senators and urge renewal of the "Burmese Freedom and Democracy Act" Including Renewing sanctions against the Burmese military junta.

Below is my letter to the BBC.

The BBC and other news organizations are singing the praises of "invest in Burma" and saying the only difficulties are between Muslim and Buddhist people.  Then why do I keep receiving E-mails such as the material copied below Directly from an E-mail from the US. Campaign for Burma?  Could it be that both the US. And Europe hope to boost their flagging economies through "investing in Burma" which has exploitable natural resources, at the expense of More people whose human rights are being violated on a daily basis?  Please have the courage to do a bit of research or put this on your Facebook page so Others can.

Teresa Myeers, from the USA.

"While the international community, according to Aung San Suu Kyi, has expressed reckless

optimism, the situation has not gotten any better outside big cities like Rangoon

and Naypyitaw.  As you are reading this, Burma’s military is violating the basic

human rights of ethnic people, particularly the Kachin. Burma’s regime still refuses

to admit there are hundreds of political prisoners behind bars.  With the lifting

of the US investment ban, interest in development has spiked.

More and more farmers are in danger of being forced off their land to make way for foreign investment

or subjected to forced labor, crop burnings, and extortion.

Some farmers have been arrested for refusing to leave their land

. We must send a strong signal that real reform respects rights for all, not profits

for the few. The import ban in the Burmese Freedom and Democracy Act is the last

piece of leverage the U.S. has to push Burma's military and government towards real

reform.

Please call your Senators and ask them to cosponsor the renewal of sanctions against

Burma's regime before they expire this summer. Click here for detailed instructions.

Presently five Senators have agreed to cosponsor the renewal! We need to keep the

momentum going, emails will not be enough,

we need you to call your Senators.

The Burmese Freedom and Democracy Act denies hundreds of millions of American dollars

from getting into the hands of the Burmese junta and its cronies. Now more than ever,

the Kachin and Burma's marginalized communities need our help to sustain strong U.S.

pressure on the regime . . ."

Egg Missles and Booze Breakers

Egg Missles

A friend from our deaf-blind listserv sent the "Egg Missles" story and it reminded me of a funny thing which happened to me.  This is Sunday's post, early.

The Eastern Seaboard ain't the only ones frying.  We have fire hazard warnings out and it was 100 today.  I know, you guys had higher temperatures.  But out watering the garden it's hard to tell sweat from humidity or accidental self-dousing with the garden hose sometimes.  Can't get my hearing aids wet, or I'd go soak my head!

Hey Sheila

This reminds me Very much of something which happened to me years ago when I had

more hearing.  It would be more dangerous now, but I think it's funny.

A friend gave me a small bottle of raspberry liqueur for a Christmas present.  It

went up in the cabinet.

One night I was making Indian fry bread in deep fryer.  I reached into the cabinet

to get something, Splash went the bottle of booze into deep fryer.  Uh-oh!

Grab scoop to fish it out, I heard a distinct  little " Plink," unlike any noise I've Ever  heard before.   I know glass is about to shatter.

Rush to sink, deposit bottle as fast and gently as possible, bottle says "crack!"   My Seeing Eye dog Always follows me into the kitchen to hoover up any crumbs dropped.  She's Right behind me.  I drop on her with my whole body, covering my head with my arms, BOOM! Bottle blows.  We're both ok, but glass shards and hot sticky booze scattered around.  When I first

told a blind hearing friend about it his first words were, "oo, cool!  What kind

of a Noise did it make?"

When Ann came to live at my mobile home one of her first questions was, "What's that

big brown stain on your ceiling,  above the sink?"

Not as well told as your story, but still funny.

I gave away the deep fryer when I decided fry bread wasn't good for me anyway.

----- Original Message -----

From:  Sheila

Sent: Friday, June 29, 2012 2:07 PM

Subject:  EGG MISSILES

get ready to laugh!

First time it ever happened...I put eggs on to boil...forgot about them...went to

my office. Later...POP! POP!! Hey what's that? Sniff..sniff..oh crap the eggs! Running

to kitchen...missiles eggs flying...DUCK!! Run....grab pan..throw into sink..duck

another missile! Whew...sweep up...let dogs in to find the missing yolks.  Now a  couple weeks later..this morning I was in the kitchen talking to my

partner. Suddenly she says.."why are there eggshells stuck on the ceiling?" ROFL!!!!

Food Nazi and Other Divides

Food Nazi?

A friend was talking about recipes and described some neighbors as "food Nazis".  Nazis,  she was very embarrassed about using the term, not politically correct.

I said I was rather picky about what I ate and was I a "food nazi?" she said yes.

So I asked what a food nazi was.  Evidently it is someone who makes their food preferences known and then either They expect others to abide by them at social gatherings, OR, (and this may have been my friend's problem) Others think that to be seen as "good people" They must Only bring foods to communal gatherings which those they call "food Nazis" would like.

So who has the problem?  Our world is terribly divided over many issues to the point that we hate one another Personally, for disagreeing with our views, religion or denomination, sexual orientation, voting choices,  and now food?

I think we cannot afford such divisions and survive as a people, a nation, or a human race.  This doesn't mean you have to like me or agree with me.  It hopefully Does mean you can restrain yourself from calling me naves in public for the purpose of humiliating me.  I wish it meant you wouldn't discard me from your mind as trash because of our differences, and it Shouldn't mean that you have to physically injure or kill me because of them.

My friend did not use the term "food nazi" in public.  But I got to thinking about it anyway. I remember once at a women's gathering an African American woman came in and spoke.  She said she was sick and tired of people judging her for who she was and dividing up into little factions.  She said she ate meat, wore perfume, and liked chains.  And her conclusion was that people were just too damned picky about who they considered to be Good or Acceptable people.

If perfume makes a person physically ill they have the Need to request that the people they meet with use unscented products.  If scented products make someone uncomfortable but not ill, they may want to consider the consequences of requesting that those they meet with use only unscented products.

I do not like smoke.  In a closed in space it makes me physically ill.  I choke, and my eyes and nose won't stop running.  But I have friends who smoke.  When we are together my friends smoke either outside and with the wind blowing their smoke away from me whenever possible, or they arrange the air flow in a vehicle so that I can breathe without pain and they can smoke.  The smoke still makes me uncomfortable, I still do Not like it.  But I choose to keep my friends over demanding that they don't smoke in my presence.  If I made this demand I would probably see a lot less of them.

At family gatherins most of the food was something Ann couldn't eat.  It either had lots of sugar, (Ann was diabetic) or it had gluten and Ann had Celiac Disease, gluten intolerance.  But we went anyway.  There was a combination of accomodaation to Ann's needs and we also brought foods she could eat.  If an important part of the meal was bread, we brought gluten free bread.  If there was a sugar-filled sweet potato casserole, we brought baked sweet potatoes.  It was a combination arrangement.

I don''t eat much meat.  If someone is having steak I might eat a very small piece or just eat veggie. Dishes.  I will Not demand that others adhere to my food preferences.

I have had vegan friends who always brought something they could eat to communal potlucks.  This is what Ann and I did at family gatherings.

Bottom line:  people deserve to have medical needs respected; but whenever possible I think we who have differing preferences than the majority of Americans can either make compromises or choose not to attend gatherings where we cannot physically stand the offending circumstances.  We Cannot All have Everything we want.  If we want to survive and have friends, we need to remember how to compromise when compromise is possible.

Sounds simple, doesn't it?  But you might be surprised how much anger there is between smokers and non-smokers, vegetarians and veagan vegetarians, vegetarians and those who eat meat, Muslims, Christians, and Jews, LBGT people and heterosexuals, and on and on and on.

Two books have been important to me when considering these things.  One is "The Filter Bubble" by Eli Perrizer, which points out that people who get their news from "liberal" sources never listen to "conservative" news sources, and vies versa.  The other, which I just recently read is "Half the Sky." 

This book discusses gender discrimination across the world and its effects, economic, health,  social, and cultural.  It points out that "Feminists" and missionaries are often working toward the same goals while they battle one another in the developing world.  And the book points out many issues on which these two groups can cooperate, If they would.  No one wants mothers to die in obstructed labor.  No one wants women who suffer obstructed labor or rape to have to live with fistulas. As a part of general maternal health education, the dangers of female genital cutting can be discussed with women and men.    Cooperation to iodize salt is Very cheap and would raise IQ.'s, especially for female fetuses.  De-worming communities has proven to be of great benefit in helping children learn.  This is also inexpensive.

I personally do not believe in missionaries.  But I respect the fact that many give their whole lives not only to spreading their faith, but to treating the sick, educating children and adults in basic literacy, starting vocational training programs, etc.  But instead of cooperating where we can, we battle one another over abortion, LBGT rights, and other political issues which Are of Vital importance.  But doesn't it make more sense to work Together where possible and Not work together where we disagree?  I won't support a religious education program.  I will support feeding and re-hydration therapy, basic literacy efforts, and the other causes listed above.  If I know most of my money is going where I choose, then I can ignore a bit of religious teaching, so long as it isn't about discriminating against others.  Most religions Do discriminate against Some group, but there Are  missionaries who focus on love and acceptance rather than separateness.

To quote the Stones, "We can't always have what we want, but sometimes we get what we need."  The more we learn or are Foorced to learn to work together, the better off we will be as human kind. 

Affordable Care Act Upheld by Supreme Court

Many people were enraged by this decision, which  upheld the votes of the Federal House and Senate.  But they Don't want anyone bumping into their car who isn't Legally Mandated to carry Car insurance.  Why don't they object to That legal mandate?  It makes Money for Insurance Companies but infringes on Every driver's "right to say No" is It an unconstitutional law?  Nope.

There is the to me more real concern about how to pay for the Needed changes.  But in part, I believe it's a matter of priorities, and Not just for people with disabilities. 

Disability Rights Education and Defense Fund. Advocating for Disability Civil Rights

since 1979

Supreme Court Upholds Affordable Care Act

June 28, 2012

DREDF celebrates the US Supreme Court's ruling today that upholds the constitutionality

of the individual mandate in the Affordable Care Act (ACA)!

The US Supreme Court Rules on the Constitutionality of the Affordable Care Act—What

was at Stake?

This historic decision means that people with disabilities will continue to benefit

from the profound impact of the landmark law. By affirming the individual mandate,

the Court ensured that private insurers will have access to the largest possible

pool of enrollees, thus holding costs down. In combination with market reforms prohibiting

discrimination against people with pre-existing conditions, this affirmation will

make it possible for everyone, including an estimated 3.5 million uninsured people

with disabilities, to benefit from more affordable insurance prices.

A majority of the Court did strike down the provision in the law that would allow

the federal government to penalize any state that does not expand their Medicaid

program by withholding all of that state's existing Medicaid funding. However, as

the Court's minority decision pointed out, the majority struck down the authority

to withhold, not the authority to grant. While the full impact of this part of the

holding remains to be seen, it is likely that some states may choose to expand Medicaid

in exchange for additional federal funding, which will benefit millions more low-income

adults with disabilities.

Key Provisions of the Law for People with Disabilities

Individual Mandate

The ACA requires most U.S. citizens and legal residents to have health insurance

and includes penalties for those who do not. It also provides for cost sharing and

premium credits for low-income families and establishes Health Benefit Exchanges

through which individuals can purchase coverage.

Low-Income Medicaid Expansion

States have the option to open Medicaid eligibility to all individuals and families

with income up to 133 percent of the federal poverty level. In 2010, as many as 3.5

million adults with disabilities living in the community have household incomes between

100 and 133% of poverty and therefore may qualify for Medicaid under the expansion.

Insurance Market Reform

An estimated 3.5 million people between the ages of 16 and 65 with pre-existing medical

conditions or disabilities who are currently uninsured will no longer be shut out

of the private insurance market as of 2014.

Temporary coverage is available for people with pre-existing medical conditions or

disabilities until 2014 through state-run high-risk pools.

Dependent children under the age of 26, including those with disabilities, can remain

on their family's health policy. An estimated 4.1 million young people aged 15 to

24 have disabilities. An additional 500,000 reach adulthood each year and face loosing

health coverage.

Insurers may no longer cancel a health policy because the policyholder develops a

serious medical condition.

Discrimination on the basis of health status is prohibited.

Improvements to Public Programs

Long Term Services and Supports

The ACA created new and extended existing programs to help people with disabilities

avoid institutionalization and remain in their homes and in the community:

States may now cover comprehensive community attendant care services under their

optional Medicaid service plan.

Home and community based services (HCBS) are strengthened.

States can receive a Medicaid incentive payment if they increase spending on community-based

long term services and supports and reduce support for institutions.

A demonstration program ("Money Follows the Person") that helps people move from

institutional settings to the community is extended.

Healthcare Provider Training and Research

Increases opportunities for training of health care providers (including dentists)

on the needs of people with developmental and other disabilities.

Authorizes new training programs for direct support workers who provide long term

services and supports.

Comparative effectiveness research, which will eventually influence the treatments

insurers will cover, will take into account potential differences in the effectiveness

of healthcare treatments and services for people with various disabilities, their

quality of life preferences, and also include representatives from these groups in

research.

Data Collection

Requires collection of data on where people with disabilities access health services

and where accessible facilities can be found.

Adds disability status as a bona fide health disparities in population and health

care quality reporting surveys.

Accessible Diagnostic Equipment

Requires that access standards be established for medical diagnostic equipment such

as exam tables and weigh scales and mammography equipment

© 2012

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