Black Girls and White Women (Part III)


A couple weeks ago, a new aide and the director of her agency sat in my living room for the first time and the director said the aide and I “needed to learn each other.” I agreed, but didn’t have the wisdom to ask “How?”

A young black woman—a complete stranger—is put into my home to work. She listens to how I talk, sees how I dress, looks at the furnishings of my apartment, hears how I talk to people on the phone. She learns me.

I, on the other hand, have no context in which to understand who this woman is, what her values are, or how she relates to other people. For years I have wished that, before I hired an aide, I could visit her home. What level of housekeeping does she maintain in her own home? How does she talk to her friends and relatives? What do her home decorations say about who she is? Is she really like me?

Yesterday a black man was doing maintenance in my apartment and he started snapping at me. A couple minutes later, he was using kind words to me. Did the snapping not mean what I thought it meant? In the world I come from if you snap like that at someone then you’ve got a serious relationship problem. Is that true in the world he comes from? Or is the snapping just the same as scratching a minor itch?

A black woman friend and I went to a coffee shop on the Southside where we ran into a black male friend of hers. As I listened to them talk, a story developed. His wife had shot him. He was in the hospital for a while, then in rehab. They took him to court—in his wheelchair—so he could testify on behalf of his wife. He told the judge that it wasn’t her fault—it was his. He was in a wheelchair for a time longer, then his wife started getting together with him. Now he’s all better and he and his wife are back home together.

Honey, where I come from, if you shoot your husband then the marriage is over.

Another story: a young black couple on the Southside got married. After a while, he hit her. In no uncertain terms, she explained to him that he never, ever, was to lay violent hands on her again. After another while, they were in the kitchen. She was washing dishes. He hit her again. She picked up a knife and stabbed him in the side. They still are together and he hasn’t hit her again.

In my home of origin, nobody ever, ever engaged in physical violence against anybody else. We used words to hurt each other.

A couple years ago, I had an epiphany. White people aren’t necessarily right. The laws in this country aren’t necessarily right, either—they just were made by the largest group. White men made the rules. Among other things, they did not treat women equally if the crime was rape. Among other things, they discriminated against black people because whites are the biggest group. The laws are not the laws because they are right; the laws are the laws because the largest group says so.

The laws are supposed to be applied equally to black people as well as white, but they may be living in two entirely different cultures. A black physician or professor who lives in suburbia may be entirely comfortable living with the white man’s laws, but what of the Southside, where a long-standing and far-reaching different culture exists? Is the Southside culture unacceptable simply because it is, relatively, so small that it can’t fight back?

In other words, does the plantation owner get to make the rules for the people who live in the shacks and dance around the fire? Who says the plantation owner is right and the fieldworkers are wrong? They are just different. Just because I am offended by the black people who stand in the lobby of our apartment building and say “fuck” a lot doesn’t mean they are wrong. By my standards, they are wrong, but my standards are born of white culture. Is it considered bad conduct on the Southside?

We are two generations beyond the passage of Civil Rights laws. In all the most important ways, blacks and whites now enjoy equality under the law. But in sociocultural ways, we have made significantly little progress toward equality.

When a special service was being planned at a local church, the chairman of the board of deacons of the dominantly white church proposed that the only black person in the choir lead some gospel singing. Those of us who knew her cringed. She had been raised in a middle-class suburb, grew up in a white church and now was a librarian. She would have been better able to lead us in opera than gospel.

Administrators of the home health aide system repeatedly say that they cannot discriminate in hiring or in placement of young black aides with old white clients. But it does not work because we come from different cultures. Young black aides do not do what old white clients expect them to do. Whites see it as a problem of blacks. Blacks call whites racists.

How are we to learn?

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Dr. W.C. Elliott: The Idiot du jour


So I am sitting in a treatment room in the Nephrology Clinic at Upstate Medical Center when Dr. W. Clayton Elliott walks in and introduces himself. He is a late-middle-aged man who used to be known as Dr. William C. Elliott, and he used to work at Oswego Hospital, which is close to the end of the known medical universe.

He asks me if I know who he is.

‘God?’ I wonder. ‘The latest in a long line of medical assholes?’ I wonder. “You’re a nephrologist,” I say, puzzled by the question.

He asks me if I know where I am.

This son of a bitch is doing a basic psych evaluation—is the patient oriented to place and person! It is unnecessary, inappropriate and fucking rude. Any good physician begins the new-patient interview with one minute of social courtesy, then says “How can I help you today?” The patient begins to tell her story and—according to research studies—12 seconds into her story, the doctor interrupts for the first time. They do not listen.

Dr. Elliott goes way beyond not listening. He doesn’t even ask. He sits down and states “You don’t have diabetes insipidus.”

WTF? Shocked speechless, I mumble and mutter something indistinct. Elliott repeats: “You do not have diabetes insipidus.”

Back around 1991, I was peeing all the time. I told my psychiatrist, who did nothing, so I demanded a second opinion. She sent me to another psychiatrist who actually knew what he was doing, consequently I got sent to a primary care physician who ordered a 24-hour urine and blood tests. When the results came back, she told me I had diabetes insipidus. I cheerfully replied, “You can fix it can’t you?”

“Um, no,” she said. “It’s permanent.”

Then I went to a nephrologist who admitted me to hospital and did a dehydration test, which consisted of denying me liquids for 12 hours, starting around 8:00 p.m., and weighing me every hour all night. I lost ten pounds, just from producing large quantities of urine. Imagine losing ten pounds overnight! My grandma always said “A pint’s a pound the world around” so ten pounds is more than a gallon.

A healthy person excretes less than two liters of urine in 24 hours; I was putting out twice that amount just overnight. I had diabetes insipidus. “Diabetes” means large quantities of urine; “mellitus” means sweet-smelling; “insipidus” means odorless and colorless. Diabetes mellitus is a disease of the pancreas; diabetes insipidus is a kidney disease. Diabetes insipidus means that you are basically excreting clear water and not concentrating urine.

My next stop was Dr. Arnold Moses at Upstate Medical Center who said that the overnight dehydration test was “barbaric” and no longer much in use. Dr. Moses is an endocrinologist and an internationally acclaimed expert on diabetes insipidus. He put me in one of his research programs and reported that my 24-hour urine output was 9.6 liters—about five times normal.

Diabetes insipidus comes in three forms: neurogenic, nephrogenic and psychogenic. Neurogenic means that the posterior pituitary gland in the brain is not putting out enough antidiuretic hormone (ADH). Nephrogenic means that the posterior pituitary is putting out ADH but the kidneys are not responding to it. Psychogenic means you’re crazy, therefore you drink too much, therefore you produce too much urine. Dr. Moses did some horrific test (talk about “barbaric!”) and reported that my diabetes insipidus was exclusively nephrogenic. My kidneys had been damaged by lithium, prescribed by a bad psychiatrist, which is the most frequent cause of diabetes insipidus.

I went on to nearly a quarter of a century of treatment by various endocrinologists, nephrologists and emergency medicine specialists, usually DDAVP—which cost about $10,000 a year—and the diuretic hydrochlorothiazide (HCTZ). About every six months, I would dehydrate into the Emergency Room. Then I stopped taking physician-prescribed pharmaceuticals and I stopped dehydrating.

I had to urinate about every two hours, including all night, and was dying from lack of sleep after ten years of this so about three years ago Dr. Tucker, chief of hospitalists at St. Joseph’s Hospital, prescribed an indwelling catheter so I could get some sleep.

And Dr. Elliott, the idiot du jour, has just informed me that I don’t have diabetes insipidus. He comes from the medical backwater of Upstate New York and probably has never seen a case of diabetes insipidus in his 35-year career. The incidence of diabetes insipidus is 3:100,000; Oswego County has a population of about 120,000.

I ask Elliott on what he bases the judgment that I don’t have diabetes insipidus and he says—wait for it [drumroll]—“I read your lab reports.” He did not interview the patient. He relied entirely on what tests other physicians, such as the rheumatologist, had seen fit to order.

A 24-hour urine collection is where you start if you suspect diabetes insipidus. There is no 24-hour urine lab report in my file.

Back in the 1990’s an internist, a nephrologist and an endocrinologist each independently did testing and arrived at the same diagnosis. It was before Upstate Medical Center began to put test results on computer. No 24-hour urine collection has been done on me in this century. Neither has there been any ADH test.

I sputter, “Bu—bu—but, Dr. Moses! This hospital . . . international expert . . . tests!”

The asshole du jour repeats that I do not have diabetes insipidus.

I leave the room, and the hospital, probably forever.

And here’s what I believe: I believe that the asshole du jour read my psych history and, based on multiple fallacious notes by psychiatrists—whose “diagnoses” are based on opinion, not any objective tests—he decided I was crazy and, since he is fundamentally incompetent, he did no testing to validate his opinion, which is that of a bigot.

Posted in American medical industry, drugs, Medical care, Mental Illness & Health, Pharmaceuticals, physician, Values | Tagged , , , , , , , | Leave a comment

Black Girls and White Women (Part II)


Black girls, like everybody else, want esteem and authority. They are unprepared to do anything else, so they work as aides and I think they are ashamed of it. Couple that with their eagerness to tell the rest of the world how to behave, and you have a problem. My guess is that with most clients, a black aide flares a couple times and the client becomes silent and subservient. Not me. I do not back down when pushed into confrontation.

My friend who has Medicaid aides is currently working with a young woman who worked—albeit briefly—for me. She is black and she does not have attitude. She also cannot read, cannot write cursive, and doesn’t know how to double ¼. In other words, she cannot cook from a recipe or make up a grocery list. She does not own an alarm clock or a watch and, therefore, never showed up for work on time. This was a problem for me because I actually have a life and make time commitments with other people. My friend is still in thrall to the medical industry and is, therefore, sick all the time and always at home whenever the aide gets around to showing up.

I only see two ways out of this problem. The first is that aides absolutely need to be paid more. They are providing the most basic, necessary services; they are essential. Hamburgers at Burger King are not a necessity; cleaning the black mold out of my toilet is. Taking care of other people should not be a minimum wage job. If all the doctors and all the aides went on strike, who would you miss first and the most? How long has it been since the pay rate for Medicaid aides has been raised? PAY AIDES WHAT THE JOB IS WORTH!

Second, I would make it mandatory to link aides to education. Reconfigure aide work as the first step, not the last step. The medical industry provides a clear ladder from Certified Nurse’s Aide to Licensed Practical Nurse to Registered Nurse to Nurse Practitioner. Link aide work to education. Let the agency pay for the education on the condition that the employee will continue to work as an aide for a period of time. When employees can see that superior performance on a menial job is their way up to a better job, I would expect it to be reflected in a change of attitude.

Finally, I would ask for compassion for the clients. By and large, we are old white women. There comes a time in our lives when we should no longer be challenged to change to accommodate the culture of young black women with whom we have nothing in common. At this times in our lives—old, and too sick to take care of ourselves—we should be allowed to rest in the comfort of the known and familiar. Can you please get me an aide who looks like me?

Posted in activism, disability rights, Government Services, Medicaid, Onondaga County, Poverty, Power, Values | Tagged , , , , , , , , , | Leave a comment

Black Girls and White Women (Part I)


I only know one other person who is getting Medicaid home health aides and she is just as outraged as I am at how we get treated. She concurs with everything I say about aides being arrogant and bossy, and she goes even further than I do at finding their behavior unacceptable.

The issue is that they are black. Fifteen years ago when I first started getting home health aides they were mostly white, like me. It matters a lot when you have people in your home that they look like you, have similar life experiences to you, and comparable expectations. My father was a college professor; my mother came from a farming background; I grew up on a college campus.

Nobody but me is willing to address the fact that aides are now black. I haven’t seen a white aide in years. And what are the experiences and expectations of young black women? I have somewhere between little and no understanding of the day-to-day lives of these women.

Of my last four aides, two expressed intentions of getting more education and going on to better things; the last two were merely frustrated and had no expectation of getting out of aide work, which is, admittedly, the bottom of the barrel. The women know this, and hate it.

Today, Nakima was very clear in her verbalizations: she refused to get her hands dirty; she demanded that I work with her as an equal; when I was not submissive to her demands, she became outraged and walked off the job. At one point I pointed out to her that she was not here to do me favor; she was being paid to do a job. She replied, “Yeah, and not enough.”

If I am reading the situation correctly, aide work, as paid by Medicaid, is the lowest-paid job a woman can get, so now the only people who will take the job are black women who have no training for anything. It used to be white girls who got pregnant; now it’s any black woman.

And the problem is that black women come with attitude. In the olden days, I think there was among blacks a culture of subservience; you didn’t talk back to whites. What black people said to each other about white people was not the same thing as what black people said to white people.

Now, two generations after the passage of Civil Rights legislation, have we come to a point where young black women feel no restraints to mouthing off to the white women they are supposed to serve? These women are young enough to be my grandchildren yet they talk to me as if we are equals. Home health aide work is a service industry, and they don’t want to serve. Well, okay, I get that. In the United States today, across the board, there is a real crisis of nobody wanting to serve.

There is a subtle line between power and service. I see it all the time in the transportation industry. There are very few people who are able to say, “How can I help you?” What most of them say is “You will do what I tell you to do.” Their position is that they are not here to serve you; they are here to be in charge.

The last aide, Sabrina, when I tried to show her how to wash dishes in my home, snapped “I know how to wash dishes!” Every home is different; every kitchen needs accommodation. Instead of being willing to learn, she demanded the right to do it her way. (Among other things, I don’t have room for a dish drainer in my kitchen; among other things, Sabrina dumped the garbage down the drain.)

Young black women working as aides now feel free to talk to their old white clients the same way they talk to each other. Typically, when white women are stressed, they withdraw into silence; they close up and hunker down. Not black women. They come out swinging, all loud mouth and confrontation.

I am sick and tired of having to fight for the right to have things done my way in my own home. I had a white girl working for me as an aide for a year and half. In her parting, she wrote that I was “organized, reasonable and generous.” Black girls leave yelling that I’m a racist. I’m not, but what they mean is that I won’t let them do whatever they want in my home.

Posted in disability rights, Medicaid, Onondaga County, Poverty, Power, Values | Tagged , , , , , , | Leave a comment

Home Aide, Homeopathy and Immunology (Part II)


Continuation to http://annecwoodlen.wordpress.com/2014/08/28/home-aide-homeopathy-and-immunology-part-i/

On the bus, I pull out the most recent lab reports. I have been using homeopathic remedies for exactly three months, so how’s it working?

There is no significant change in the blood work; the urinalysis results are not in yet. So how come I feel better?

Maybe we are not measuring the right things. Next week I will ask to have the immunology tests repeated.

So I go about my shopping, buy bread, beef, cheese, ice cream, zucchini, nectarines and zinnias, and take the bus back home. At home, there is no sign of the aide. I put the zinnias in water, the ice cream in the freezer, and call the agency. The scheduler reports that she has just gotten off the phone with the aide.

The aide’s story is that she was sitting on the stones around the koi pond at 9:45; my story is that I was sitting out front at 9:45. Three minutes later, the bus arrived. The aide says she never saw me or the bus. I went hunting for her and did not find her. Nine minutes later the bus and I left.

This is where it gets good: the aide says that she waited for me from 9:45 to 11:15. What kind of moron, who is on the clock getting paid, waits for a client for an hour and half without reporting it to her supervisor? Aides are given clear instructions that if they arrive at a client’s home and the client is not there, they are to call the office immediately.

And then the aide called and talked to the scheduler for half an hour. It took me three minutes to report the problem and five to discuss it. Why did the scheduler let the aide waste half an hour of her time?

The scheduler says she will find another aide to work with me the next day, and will call me back later in the afternoon.

So then I go to the office of Dr. Sheehan, board certified allergist and immunologist. I have been referred to him by Dr. Kelly, an endocrinologist at Joslin Diabetes Center. While being processed in, I am handed paperwork that says they do not accept Medicaid. I have Medicare primary and Medicaid secondary.

Shit.

The co-pay must be paid at the time of delivery of services. It is August 28, three business days before my Social Security check comes in, and I have just come from grocery shopping. I have about eight dollars in my pocket. So I go talk to the receptionist, who decides this is a question for Linda, so she goes and gets Linda and I talk to her. I ask her how much money we’re talking about.

She says that the co-pay is 20% of the doctor’s bill.

And how much would that be, I ask?

Linda replies that she doesn’t know. The charge would depend on what the doctor does.

Years ago, I used to go through this crap. I’d go to a doctor’s office, extend my Medicare and Medicaid cards, and be required to sign a statement that I would pay for anything not covered by my insurance. So, I would ask, what kind of expenses are we talking about? Where I come from, you find out what something costs before you agree to pay for it. In the medical industry, they expect you to sign without knowing.

I got a whole bunch of people mad at me because I asked questions they couldn’t answer. They would say well, it will be whatever it will be—now sign! They didn’t like it even when I would quietly explain that I had no money, and I didn’t want to stiff them for the bill, so I was asking in advance. The doctor’s office staff would get all huffy and put a note on my computer file that I was uncooperative.

When I go into JC Penney’s and want to buy a set of sheets, I look at the price tag before I take the product to the cashier. I have limited funds and need to know if the purchase is within my budget. I am sure that some people are wealthy enough that they can buy sheets without looking at the price, but most of us look at the price before we decide to buy. Not in a medical office. You are expected to pledge to pay without knowing the cost.

Medical bills are the most prevalent cause of personal bankruptcy, even among people with insurance:

http://www.cnbc.com/id/100840148#.

http://www.nerdwallet.com/blog/health/2014/03/26/medical-bankruptcy/

http://finance.yahoo.com/news/pf_article_109143.html

So Linda keeps telling me that it will be 20%, and I keep asking, “Of what?” and she finally says, “Oh, you mean you want me to figure it out?” Duh. Yes, please, I say. So she goes and does the calculations and tells me that for a new patient appointment Dr. Sheehan charges between $60 and $150, so the co-pay is between $14 and $30. That’s a big help, I think, thinking of the $8 in my pocket.

So you don’t treat poor people, I say.

Oh, yes, we do, she says. We accept managed Medicaid!

I have regular Medicaid. I don’t know what managed Medicaid is, and I don’t know how it’s different from regular Medicaid, and I don’t know why Dr. Sheehan accepts one but not the other. What I do know is that Dr. Sheehan only treats some poor people. I am not one of them, so I leave and go home.

The All-Metro scheduler has not called back, nor does she on the remainder of Thursday.

I wait 24 hours and then call her back. She apologizes for not having returned my call the previous day, then tells me that she has a call out to another aide. The scheduler says she will follow up with the other aide and call me back Friday afternoon.

She doesn’t.

So for all you people who think that Medicaid means you get a free ride, the answer is no. You don’t get any “ride”—aides or doctors—at all.

Posted in Alternative therapies, Government Services, Medicaid, Medical care, Onondaga County, Poverty | Tagged , , , , , | Leave a comment

Richard Gottlieb: In Conclusion (Part II)


See also http://behindthelockeddoors.wordpress.com/2014/08/31/richard-gottlieb-in-conclusion-part-ii/

Posted in activism, Fraud, Power, Powerlessness, Sex, Values | Tagged | Leave a comment