00 / 00

Laurie Abraham reads from and discusses her book "Mama Might Be Better Off Dead"

BROADCAST: Oct. 1, 1993 | DURATION: 00:48:36

Synopsis

What started out as a 5-piece article on health care became Laurie Abraham's book, "Mama Might Be Better Off Dead: The Failure of Health Care in Urban America". Through her stories, Abraham points out the many hardships and catch-22 scenarios of some poor families. One woman, after caring for her mother all day, Julie, wanted to work part time in the evenings. However, she soon learned that she'd be making too much money and she'd no longer be eligible for Medicaid for herself and her children.

Transcript

Tap within the transcript to jump to that part of the audio.

OK

Laurie Abraham "But the old woman was becoming ever more pessimistic. 'It looked like my body just getting black things all over it,' she told Jackie one day after she came home from the hospital in October. Her grandmother's continued deterioration distressed Jackie, too. She considered a nursing home for her grandmother. 'That might be best for her. They would do better than me. I guess she gets depressed just laying in here'. Jackie considered her grandmother dying. 'Sometimes it seems like Mama might be better off dead,' she said. 'You want it, but you don't.'"

Studs Terkel That's a provocative passage that really tells us everything. It's from the book called Mama Might Be Better Off Dead, a shocking title. The subtitle may explain why, The Failure of Health Care in Urban America. And Laurie Abraham is my guest and she was a, a crack photographer, photographer, a reporter of The Chicago Reporter of which Roy Larson is publisher. And Roy got Jackie the idea of writing something about health care in poor communities, especially a certain African-American community in the West Side. To find a family of four generations and its experience with health care, I should say a lack of it. And Mama Might Be Better Off Dead was Jackie Banes who is a strong, resilient woman talking about her grandmother whom she calls Mama. And there's her father who has his own illnesses and hang-ups, her husband who has his own, and her grandmother, her Mama, and the kids she raised. The University of Chicago Press are the publishers. By the Reporter you worked for, you did a series on this, and perhaps a word about The Reporter.

Laurie Abraham Yeah, The Reporter wanted to look at health care sort of from the bottom up, and really look at people's experience, so we chose to focus on one family to do that, and I did a five-part series for The Reporter on this family, but really a lot had still been left out. A lot had been said, but a lot I wanted still to say and was able to, to expand it into book.

Studs Terkel We'll come to this family in a moment and the experiences. This is a metaphor you might say, it's almost a metaphor for people up against it, and a great many, and health care or the lack of it itself.

Laurie Abraham Yeah. Even the title. I mean, I think Jackie Banes who said, "Mama might be better off dead," likes to think of it as a metaphor, and a metaphor for how frustrated she was and how painful everything was, because it's kind of disconcerting for her to read the title of that book now. She feels -- she 'cause along with that feeling of "Maybe mama would be better off dead" was a real desire for her grandmother to live, because she was very close to the woman, she'd raised her. Her grandmother'd raised her.

Studs Terkel So let's go into the beginning, just a word. We haven't explained The Reporter. It's a monthly magazine, paper, journal

Laurie Abraham Yeah.

Studs Terkel That tells us

Laurie Abraham It focuses on race and poverty. It's investigative. It often has a lot of numbers. This was a little different in that it really told a narrative story, but it, it's picked up by a lot of the newspapers in town, and

Studs Terkel It had, but your, your statistics, when you have numbers, have faces. At the, we suddenly we see Jackie Banes and Cora Jackson, her grandmother, and Tommy Markham her father, and Robert Banes her husband. Suppose we start. Who is Jackie Banes and take off with her and the four generational

Laurie Abraham Okay. Jackie was 30 years old when I met her. And she's a healthy woman herself. Living in North Lawndale in a second-floor apartment there. She was caring for her grandmother who was 69 when I met her, and who'd had diabetes, high blood pressure, congestive heart failure, and near, had had a month before I met them, had her leg amputated because of diabetes. And Jackie's goal while I was with her was to try to save her grandmother's other leg. That seemed that symbolized a lot to her for a long time. Jackie's husband had been diagnosed with a kidney disease at 27. A kidney disease that is, ultimately destroys the kidneys but could have been slowed significantly. He got no medical treatment and showed up at the Cook County emergency room with his kidneys working at less than 5 percent of their capacity and then went on dialysis. And during the time that I followed the family and, and still am in contact with the family, he's had two transplants. The first one failed, which often happens. Finally, Jackie's father was not living with the family at the time, but she often ran errands for him, he needed a lot of extra help. For a time he came and lived with them later on. His, he had had, he did have a stroke at 48 from uncontrolled high blood pressure, an entirely preventable disease, but he hadn't taken the medication, partly because he didn't have insurance and didn't have a way to get it, but also because even when he could get the medication it caused a side effect of impotence, something no one likes to have. And finally there were Jackie's three children in the family who were healthy.

Studs Terkel So here's Jackie. She's it. She's

Laurie Abraham She's taking care of

Studs Terkel She has a job, too?

Laurie Abraham She was on welfare at the time, but she would often talk about how she wanted to get out and work nights. You know, when her husband would be home, but, and she was real frustrated by the situation. But there was no way that she could work with all this caretaking going on in her life. And she also, now she is working, I just want to say, she's working as a preschool teacher, and, and, and but can't afford health insurance for her kids.

Studs Terkel Well, now today you have, wait, it wa -- wait -- there was her husband Robert Banes, a job as security guard, but keeping that job he loses benefits

Laurie Abraham Right.

Studs Terkel Otherwise that applied to Jackie, also wasn't she offered, 'cause she was so good at someone called a caretaker?

Laurie Abraham Yeah, she was -- she was caring for her grandmother and they offered her a job to part-time be paid for that, but she couldn't end up taking the job for a number of reasons, partly because she would lose medical insurance for her children. The job would have been paying about 300 dollars a month, part-time work, but Medicaid, the health insurance for the poor doesn't cover you at that level.

Studs Terkel As you're talking, Laurie Abraham is talking, I was thinking, of course all thoughts come to mind that you had every day of the time you were there, it's a Catch-22 situation for poor people, and we find attacked by journalists who should know better, don't -- you know that these guys are to blame for their "they won't want to work", and it doesn't get anywhere near what the truth of the situation is.

Laurie Abraham No, and not, not especially for Jackie. She felt really trapped by the situation, and a lot of people would say, "See, she's just on welfare, why doesn't she get off welfare?" But with the medical insurance system the way it is, it's hard for people to get off welfare. It just doesn't make sense for them to do it

Studs Terkel So what you're doing is you covered almost day to day, you cover each of the members of the family and Jackie there. You mentioned diabetes and you mentioned high blood pressure and a lack of treatment that might have prevented or slowed it. And so we come to those illnesses and the rate, the proportion of, say, Black people who have it as against the rest of the population. Whites. These are certain kinds of sicknesses.

Laurie Abraham They're, they're sicknesses that generally can be prevented that never, they're sicknesses that people have, but their complications don't have to happen. The kidney failure rate in the Black community is, among say 25-to-40 year old men, is I think 20 times higher, and this is because high blood pressure is a major cause of kidney failure. And if you don't have medication, you can't get the help. I mean there'd be whole families affected by this disease. And the same thing with diabetes. It's a controlled disease, it can be controlled. But if you don't get insulin, if you don't have some kind of dietary counseling, you know, someone to monitor your blood sugars regularly, it kind of spins out of control, and that results in amputation, blindness, peripheral vasc-vascular disease, all kinds

Studs Terkel So you're talking also about, some use the phrase, a great euphemistic phrase, "lack of communication"

Laurie Abraham Yeah.

Studs Terkel Between doctor and poor patients. That of course is the euphemism to end all of them. So we come to a neglect of one form or another. No one any particular person's fault, though there are individuals who have been negligent indeed, doctor, but you describe that. You describe the very -- well, keep going.

Laurie Abraham Well, let me tell you, I mean, for example, Robert Banes, the, the man who lost his kidney, he was told he had

Studs Terkel

Laurie Abraham -- Her Jackie's husband, right. He was told he had this kidney failure when he was 27, and he didn't get any medical care. It was partly for the lack of insurance, but partly because he went, when he went to Cook County, he said "I didn't know the disease was so serious. I thought it would clear up on its own." Somehow no one was able to communicate to him that this wasn't just a common cold. And I talk about a physician in the book who works at Cook County who says, he gives the example that a lot of times physicians will say to patients, "You've got AIDS and there's really nothing we can do." Now, they don't mean that there aren't drugs that can't be used to ameliorate that disease, but patients interpret that to mean "I might as well just go home and wait to die. So it really does matter how you talk to people.

Studs Terkel When also the question of health care. You know, middle-class people speak, say "Who's your doctor?" This is not the case with poor people. Health care is not the most single thing on the mind because of the troubles each day surviving.

Laurie Abraham That's right. I mean, I talk in the book how Jackie during this time, there was a measles epidemic in Chicago in 1989 and she didn't get her two youngest children immunized, it was about a year and a half late. Fortunately, they did not get measles, but she was so overwhelmed trying to deal with all these other problems that something like preventive care -- I mean, to her, her kids were healthy. They were healthy. She didn't deal with that part of it.

Studs Terkel You know, you have a woman with a cat, and the cat gives this woman the allergies, and, and the doctor's sore because she won't get rid of the cat, and she's explaining the cat kills the rat that would endanger her kids.

Laurie Abraham That's right. That's right. And in that same, the same doctor, you know, got angry at one patient didn't, seemed to be getting asthma more and more, and found out that that patient was living in a house with no heat, with icicles when he sent a nurse out to visit so

Studs Terkel By the way, this book of yours has a subtext, a theme quite obviously. The subtitle is The Failure of Health Care in Urban America. Obviously we're talking about something called national health guaran-- as a right to every man, woman, and child in the country. National health insurance I imagine. I'm using that, I, I would assume you're in favor of the single-payer approach.

Laurie Abraham That's what I prefer. I'm a little bit reluctant to completely bash Clinton's plan because I don't know if you've heard, but the AMA is out against it and all these real conservative groups, so it kind of makes me nervous to not give him some credit for what he's doing and try to work with the plan.

Studs Terkel But let's get back, we know there's a, a sickness in our land and I'm not talking about a physical sick, I mean a psychic sickness, fear say that the hand of government, as though the hand of private enterprise in this matter, has been great.

Laurie Abraham Right, right. And it hasn't. I mean, this is an area where the market hasn't worked, and that's why you, it's easy to be nervous about managed competition because no one would want to market insurance to this family. This family is sicker than most families, poorer, is high risk for lots of problems, so they're not -- and it's going to take a lot of regulation and monitoring to get, to push this family into a market system when it seems to be easier to do a single-payer plan funded by the government, yeah.

Studs Terkel What is it they become -- what is it that Jackie's father, Tommy Markham, the guy with the high blood pressure and God knows what else, what is it he says, the first thing they ask you is how much -- yeah.

Laurie Abraham You can be damn near dying, and the first thing they ask you is, "Do you have insurance?"

Studs Terkel So

Laurie Abraham Yeah.

Studs Terkel This whole -- so we're talking about, and no help 'til, this is the thing. The illnesses you've described are not a sudden thing like a heart attack.

Laurie Abraham No. No.

Studs Terkel They are things that are there.

Laurie Abraham And they just sort of eat away at your body. And the thing that I talk about, for white people these are diseases of aging. When you're past 65 it -- for Black people these are middle-aging diseases. It's a really different phenomenon.

Studs Terkel From the 40s and things like that.

Laurie Abraham Forties and 50s, this man lost his, had a stroke at 48, that's a young age to have a stroke.

Studs Terkel Who? Tommy

Laurie Abraham Tommy, yeah.

Studs Terkel Tommy Markham, Jackie's father.

Laurie Abraham Right, right.

Studs Terkel Which leads to a comment, you made a rather shocking observation then, a guy in Bangladesh, Bangladesh! -- has a better chance of making 65 than an African-American.

Laurie Abraham Yeah. In Harlem. Yeah. And I'm sure it's much the same in Chicago's poor communities.

Studs Terkel So we also have something called -- and this is the crazy part of life. You called it this wasteland in the middle of the medical community. This is the West Side where Jackie lives.

Laurie Abraham Right.

Studs Terkel A socioma.

Laurie Abraham Socioma is what doctors call patients who come in with so many other life problems. What you mentioned, the rats in the house, drug problems, difficulty getting transportation to the doctor. Family difficulties. Just so many social problems that physicians really can't treat. And you see doctors in the emergency room trying to sort of put Band-Aids on these problems, but it just -- it can't be treated just by the medical system, which is why controlling costs is so important, because some of these problems don't have much to do with medicine really.

Studs Terkel Well, you, you -- little things. You, this idea of transportation comes in a great deal during your book. Things that are taken for granted by middle-class fams a car, family car drive out there. Transportation. I think it's a case with Robert Banes is going for his dialysis.

Laurie Abraham Right.

Studs Terkel Why don't you describe the, the difficulty with -- or Cora Jackson, Jackie's grandmother?

Laurie Abraham Right. Well, her grandmother had always taken the bus. Cora had always taken the bus, but of course after she lost her leg that wasn't possible anymore. And there is a pro-- for -- to get a roundtrip ride to Mount Sinai where Cora saw the doctor was $70 for the two-mile roundtrip ride. For a while, Jackie had Medicai-- or Cora had Medicaid, so that could -- that paid for that, but her coverage under that program was very erratic. So Jackie, when her grandmother didn't have it, would resort to calling the ambulance and trying to make her grandmother sound sicker than she was, so that the ambulance would come out there and take her. Sometimes the ambulances came out and said, "We're not taking her. You know, there's nothing that wrong with her. They're just going to send her home." And occasionally Jackie was able to plead with them and get them to do what she wanted. But it, it's, it goes against everyone's notion of what good medical care should be. It shouldn't -- you know, you need to see the doctor regularly when you have these chronic conditions, and she just didn't. After she had this amputation, when -- her, half of her foot was amputated first, and she really needed to be watched closely then if she was to save the rest of her leg. She wasn't. She went to the doctor I think twice in that time.

Studs Terkel Well, she subsequently died.

Laurie Abraham She

Laurie Abraham And both legs were amputated.

Laurie Abraham Yeah, and then eventually she just was getting sicker and sicker.

Studs Terkel But this little matter of transportation involved also Jackie's husband going for his dialysis, the guy with the kid - Robert Banes, who was tall, what, five ten?

Laurie Abraham He was five eleven.

Studs Terkel Five eleven and weighed 137 pounds.

Laurie Abraham Yeah, yeah.

Studs Terkel And he sees "I wish I had the blood of that woman going by".

Laurie Abraham Right.

Studs Terkel Now what, he had a problem with transportation too,

Laurie Abraham Well he was in a program called Medi-Car which, he could, he could get transporation because he could get his own body to the street. And that's the key. Mrs. Jackson couldn't get herself on her own steam to the street. So he was eligible for a program, but that program could be up to an hour late. So then by the time he got to the dialysis unit he was behind for dialysis so they pushed him back. It eats up, it ate up his entire day. And people would say "Why isn't he working?". Well a lot of times he'd be working there all day, in effect. It was his job. Some people in dialysis talk about it like "I'm going to my job". And dress for it like they might with a

Studs Terkel -- And they dress for it too.

Laurie Abraham Nice red blouse and a plaid skirt, one woman I spoke with, yeah.

Studs Terkel This, by you describe, we should point out that Laurie Abraham, wonderful journalist because what she does not capture more than the overall problem itself but the individual, the details that are so telling and become metaphors though actual. And Mama Might Be Better Off Dead, this ironic bitter quote of Jackie Banes about her grandmother. [pause in recording] Laurie Abraham and, and this book, Mama Might Be Better Off Dead which could be, you know this is the kind of book that could be what The Jungle of Upton Sinclair was to packinghouse people.

Laurie Abraham [laughing] That would

Studs Terkel It, it suddenly sets them off, because this is, they use the actual case, don't you? That you'd -- how did Jackie and her family react to you? You

Laurie Abraham Well, at first they were real excited that I was there, because they were getting a lot of attention. But as time went on it became more difficult, and both of us couldn't understand how intense it would need to be. You know, I was there in their house sort of just sitting around listening, which is kind-- can be disconcerting. And the series was running as I was continuing to follow the family, so they would see things about their home that they didn't consider, that they were embarrassed by. You know, their couch was old and I mentioned that, those were the things that really bothered Jackie, and to this day still bother her. She wants everyone to know that she has new furniture since she got her job. You know, she -- it wasn't the things about the health care, because they thought their story really needed to be told. But it was the things about their personal situation that were difficult.

Studs Terkel But in the midst of, we'll come to hospitals, and the emergency room, your description is all so funny, I mean funny in a, a darkly humorous way,

Laurie Abraham Yeah.

Studs Terkel [Macabre?] that enables I suppose doctors and nurses and patients to survive sometimes that you describe [laughing] the situation.

Laurie Abraham Well when, I mean, I don't know if it'll come up, but one of my, I was just -- laughed so hard when I heard it. There was a man who came in, he had been, he was drunk and he had been riding his bike and he was hit by a car and knocked off his bike. He wasn't that seriously injured it didn't seem, but they tested his blood and his blood sugar was real high which, that often happens, patients come in there with one problem, they find out they're diabetic and never have been treated for it. So the nurse said to him, you know, "Are you a diabetic, sir?" And he screamed back, "No, I'm a Baptist!" And I mean it was, there's those humorous moments in the emergency room. Sometimes it's so dark to be really discomfiting but

Studs Terkel I, I like the casual thing. This, this kid's gone wild, they put them in leather, in restraints 'cause he's wild, he's -- and after a while he says, "Open the, take me out of the restraints, I want to finish this Coke, and then put me back into it."

Laurie Abraham Which is exactly what they did!

Studs Terkel It's that casual aspect of it, too, it's almost part of daily life,

Laurie Abraham Well, there are so many people now on the streets that previously would have been in some kind of mental health institution that are regulars in the emergency room. You know, the nurse knew this guy, she knew he wasn't a big danger. She's letting him have his Coke

Studs Terkel Let's come back to Jackie Banes, so this family is really the metaphorical family for the country, of have-not people or have very little people

Laurie Abraham Right.

Studs Terkel And medical care and the lack of it. So Jackie and there're four generations, but they're also, the certain religious oriented institutions that come through like a house afire.

Laurie Abraham Yeah.

Studs Terkel There's first of all Sister

Laurie Abraham Mary Ellen.

Studs Terkel Mary Ellen. Who's Mary -- these are people coming in, these are home

Laurie Abraham She's a home social worker who was really one of the people who could reach out to Mrs. Jackson. Mrs. Jackson was depressed, you know, after she lost her leg and was, would often just be as still as a stone. And Sister Mary Ellen seemed to have a little bit of rapport for her and -- but the problem with Sister Mary Ellen is, her main job was to enroll people in programs. She was the queen of paperwork, so she didn't have much time to spend talking with someone like Mrs. Jackson, drawing her out. No, she had to fill out her papers to hope that she might get medication, or hope that she might get transportation, and, and that's how she came to see herself, which was sad, because she had so much ability to reach people.

Studs Terkel But there's a guy named Dr. Arthur Jones,

Laurie Abraham and He's

Studs Terkel The Lawndale Christian Center. Now, is this a denominational thing?

Laurie Abraham Well, it's a, evangelical

Studs Terkel -- Evangelical.

Laurie Abraham Church but

Studs Terkel -- Now, here's something that's interesting. We're, we'll talk about Mount Sinai and Reese, of course, that figure in this as well as Cook County.

Laurie Abraham Right.

Studs Terkel And to some extent Provident that was back in action.

Laurie Abraham Yeah. Yeah.

Studs Terkel But back to the, this theologically oriented one.

Laurie Abraham Yeah, he was really an inspiration for me and for the book. I found him to be one of the most caring doctors I had ever, and most probing at the same time, physicians I had ever observed. At the same time he's extremely financially savvy, had opened this clinic in the neighborhood, lived in the neighborhood, and is now, the clinic is extremely successful, expanded, and his patients are all either uninsured, paying according to a sliding fee scale, few dollars, what, you know what they can pay to keep them, his doors open, or Medicaid patients. But he -- Jackie loved to go there. You know, she only found out about that place a little bit later on or got connected with it, because they were so warm to her children. They, they really reach out to the people, and it doesn't look like it's for poor people. They paint it in nice pleasing colors. There's a basketball court next to the waiting room. I mean, it's just a totally different environment. Right next door to it is the public aid office. And that is a -- the windows are all smudged, the chairs are all around the room, people are snapping at you. You have to stand in line and "Don't move until you're told." I mean, it's a totally different environment. So Jackie appreciated that. They still, they're still using that.

Studs Terkel How do you explain the, the, the, the Christian Center? Dr. Jones' place,

Laurie Abraham I think, I mean I came to believe that about Dr. Jones as well as some of the Orthodox Jewish physician that I wrote about. They need, in this medical system, you need some other motivation other than money if you're going to work in a neighborhood like North Lawndale, and his motivation was truly serving God, and that meant to him being in the neighborhood, bringing back the neighborhood, not just racing in in the day, mending a few people and getting out at night. There's very few people with that kind of commitment.

Studs Terkel How, how, how was that -- is that clinic attractive or anything. How was that subsidized?

Laurie Abraham Well, he gets some Medicaid, some sliding fee scale, and he is good at raising money.

Studs Terkel That's it. So here's -- now we have come to contrast, don't we?

Laurie Abraham And his doctors don't make a lot of money, let me say.

Studs Terkel No, and now we come to contrast without seeking villains, there's something you call, you think, you've [missed?] a phrase, a lack of communication and the treatment whether Tommy Markham or Banes or Jackie's grandmother. Now we come to -- you said what -- now -- by the, this is -- we're talking about privatized medicine, aren't we? Private, you know.

Laurie Abraham Right.

Studs Terkel They're into "Watch out for governmental hand." We hardly mention the fact the British Isles, even the most Blimpish of Tories would never dream of cancelling National Health Insurance. But here we talk about the word, so perhaps a word about that aspect of the hospitals and other

Laurie Abraham Well, the -- Mount Sinai for example is a private non-profit hospital, but to be a private non-profit in a neighborhood like North Lawndale is a constant struggle. They are always in debt, always trying to keep their doors open. Most hospitals, say, in the suburbs, have a few uninsured patients, a few patients on Medicaid, the health insurance for the poor, and then a lot of privately insured patients. So what they do is they charge the privately insured higher prices to cover these people who we haven't seen fit to cover well, and so they're able to cost-shift is what it's called in the, in the industry. Mount Sinai doesn't have anyone to shift costs onto. They don't have -- they have five percent privately insured. I mean, most hospitals, that is a ticket for demise. You -- I mean, there are a lot of hospital administrators that couldn't believe Mount Sinai managed to stay open, but they're able to get foundation grants, they are able -- they've got some support from the government, because if Mount Sinai went down, it would be a real sign that we don't care at all and we can't care

Studs Terkel Mount Sinai is one of those few hospitals that is there in the community and handles the cases.

Laurie Abraham Right.

Studs Terkel Mount Sinai. Reese to some extent, too? Or the change to

Laurie Abraham Michael Reese to some extent, too. You know, Reese is now Humana. So Humana is a for-profit hospital, and you know, they've pledged to keep their Medicaid percentage at 25 percent. I really haven't followed how they've done that. But Mount Sinai is much more anchored I think in the community now, and part of it and you know, plans. They've struggled to stay there. There have been a lot of times when people on their board and other people have wanted to go to the suburbs, because they started out as a Jewish hospital, and those Jewish people have been their major supporters, but they're not serving many Jews except for some Russian Jewish immigrants. So it is, you know, it's hard for some in the Jewish community to justify not serving their people, but they have, you know, hewed to the ethic of serving the people who need them most. I really think they've tried to do that. It does not perfect over at Mount Sinai, but they're at least

Studs Terkel Limited though what it can do, therefore the -- and to some extent, lesser extent, Reese. The only open to them really is County, isn't it?

Laurie Abraham Right.

Studs Terkel To some extent.

Laurie Abraham Right. And this family used County. Jackie was pregnant with her first daughter at 18 and got no prenatal care for the child until her 6th month of cat-- 6th month of pregnancy when she went to County's emergency room, and she had the baby in County, which is like having a baby sort of -- in a, it's -- all the women are lined up in stalls next to each other giving birth all at once. I mean, it's not a place you'd want to have a baby, I don't think, but they -- it's a place to have a baby. It's the only place available for real poor people.

Studs Terkel You know, if, if -- you know, we read books about heroines, you know. To me, Jackie Banes, her resilience and her strength is remarkable, how -- what she handles and what she does and how she does it.

Laurie Abraham Yeah, yeah, she -- I mean, she is a very strong woman. She'd love to hear that, she doesn't feel like she did everything she could. I mean, she talked a lot to me about feeling guilty. Guilty on the one hand that she was thinking of putting her grandmother in a nursing home. Guilty on the other hand that she didn't put her grandmother in the nursing home, because she worried the only reason she wanted her grandmother home was for the money her grandmother got through Social Security. She was nagged by this doubt she was depending on her grandmother financially. So it was, it was constantly self-doubt.

Studs Terkel The book is called Mama Might Be Better Off Dead, shocking title but more about that, the failure -- the subtitle, of course what it's about, The Failure of Health Care in Urban America, University of Chicago Press the publishers. [pause in recording] We're talking about how survival takes place with families up against it.

Laurie Abraham Yeah.

Studs Terkel So her, Jackie's grandmother is the one with diabetes who lost a leg and subsequently another leg.

Laurie Abraham Right. But, but before that happened, Jackie's grandmother was responsible for raising her, and she had been declared disabled because of arthritis and high blood pressure which enabled her to get a $200 disability payment each month from the government, as well as eventually be covered by Medicare, the health insurance program for the elderly and disabled. Well, $200 a month wasn't a lot of money obviously for she and her granddaughter, so she worked under the table as a waitress at a truck stop and was paid cash for that. So they managed to bring in another 500 a month doing that. She also, when her -- a man that she had been living with for a while died, she managed to get a marriage certificate so she could eventually retire and use her, his retirement since she didn't have any retirement really coming through Social Security having worked under the table so much. So these are the things she talked about, getting over, getting by, her granddaughter always would say, you know, "You're going to get thrown in jail," and she's "I'll cross that bridge when I come to it." But for it -- as -- focusing on the health part of it, if she had not have been declared disabled, she would not have had any health insurance. And there, the chances are, she had three chronic conditions, that she would have been disabled a lot earlier in life if she had not sort of worked the deal a bit.

Studs Terkel This is Catch-22. And that is, you have to, what she did was, she wouldn't have made it. Wouldn't have got over, the phrase is "to get over," would not have got over were it not for doing this.

Laurie Abraham That's right. And it's, I mean a friend of mine calls them "tax breaks for the poor," I think or it's -- I mean, I -- you can analogize it to that. People are so critical of people who are poor doing this kind of thing. But you know, she was trying to care for herself and her granddaughter and doing the best that she thought she could.

Studs Terkel And some of the doctors at the hospital doing the best they can in an impossible situation. Others of, shall we say, to use a euphemism, casual about it.

Laurie Abraham Yeah.

Studs Terkel There's that. And you of course you change a few names here and there, but it's that, that, not coming through,

Laurie Abraham Well, there was no sense in this time. Mrs. Jackson got her care from an outpatient department at Mount Sinai, and she really didn't have one doctor that followed her case real closely. For example, when she was having difficulty even getting to the doctor's office, she was taking a blood-thinning drug called Coumadin that if, that she needed to be monitored closely. No one was really watching it. She went to, she managed to get to the doctor one day and he'd already left, so she went to the emergency room. They couldn't really follow it up very well, and she ended up overdosing on this drug because there was no coordination, no management, someone to say "Hey, there's a problem here." And she spent a week in the hospital and Medicare, our tax dollars, paid for that. So we can say "Well, you know, maybe she should have been taking her medication more correctly, and that's her problem." But the fact is, we pay for it too if you want to think of it from an economic sense. Not only the human misery, but it costs more.

Studs Terkel And sometimes the machines are the CAT machines

Laurie Abraham Yeah. Mount Sinai is a hard-pressed place, and you know, there'd be times when you just wait for hours to get different tests. I mean, part of the problem with Mrs. Jackson there is the labs can take hours to come back. So for, the, the scenario was that she never found out that she was potentially overdosing on this drug.

Studs Terkel Yeah. I know the guy who was administrator there, there was a great one named Ruth Rothstein.

Laurie Abraham Yeah.

Studs Terkel And [successful?], is a pretty hardworking guy, and he says "The system doesn't allow us to do that which we want

Laurie Abraham Yeah,

Studs Terkel That's

Laurie Abraham Really poignant story in there about how his wife lost a baby at a hospital in the suburbs and the, all the loving care they got. And as much as he appreciated it, at the same time he was frustrated. "We never do this. We can't do this for people."

Studs Terkel You know, the, that blame, individuals are blamed often you know for not, as you say, didn't take the medication, you're speaking about the gaps that are there. Access gap. And there's also something else, folk belief. And you know a certain reluctance at times of African-Americans toward certain institutions because of a history. Perhaps a word about

Laurie Abraham Well the, yeah there's two diff-issues. The second, I'd looked a lot at medical experimentation and how Blacks have been used as subjects. I had written about health care for a while before I did this book, and I'd heard people talk about being experimented on, "I'm a guinea pig," and this kind of thing, and never really took that, those things seriously enough until for example, I'm talking to Tommy Markham and he tells me he's part of a, he was part of a malaria experiment when he was in prison where mosquitoes would feed on his arm so that then they could be infected with the virus and infect prisoners so you could test new drugs on them. I mean, and then the most horrific experiment of course is Tuskegee, where Black men who had syphilis were told that they were being treated but were not being treated, that went on until the early '70s for 40 years. And this experiment in prison and the Stateville prison only ended in '74. So these are not ancient history. Black people know about these things and it stokes a kind of distrust in them.

Studs Terkel As you say this I remember -- I go back now 60 years, about that, I lived in a rooming house in the West Side in the Cook County Hospital area. And at the time, before dorms I guess, there were some nurses or res -- student nurses living at the rooming house as well as interns, students, and I remember stories told. I believe many people poor, that is white as well as Black, who were at the time, believed in the black bottle. The black bottle legend is that the black bottle is used to get rid of people in beds to clear the, have open beds for others. Poor people speaking about, that kills them, some poison the black, that was also a legend, that went on, that no doubt came out of folk belief

Laurie Abraham That kind of fear, and it also, I write about organ transplant in this book because of Robert Banes needing a transplant, and Blacks donate many fewer organs than whites, partly because they think "They're going to kill us off to use our organs." And the, that sounds maybe, that sounds extreme and extraordinary to a lot of white people, but those beliefs have a lot of resonance in the community, and they're reinforced. Cook County several years ago had a problem where they had an experiment or research that was being done without informing the subjects. All of them were Black and Hispanic women. So the headlines are, you know, "CCH Experiment: Black Women Subjects," and people read those things and, and remember.

Studs Terkel So you're coming, throughout this book, you're with the Banes', Jackie Banes and her family, and this is what happens to them, too. I suppose Jackie Banes' mother subsequent, grandmother that's called "Mama," subsequently

Laurie Abraham Died.

Studs Terkel Died. What, was it, just everything caught up with her, was that it?

Laurie Abraham Yeah, she, she just, all her systems were failing. She eventually, she was in Mount Sinai for months after her, her second leg was amputated, and eventually was transferred out to Oak Forest Hospital, which is one of the county hospitals, and out there she just got sicker and sicker and eventually her heart stopped. Ironically and sadly though, after all these years of struggling to get decent care, they tried to resuscitate her at that point even though every one of her systems was failing, they tried to bring her back by sticking tubes down her nose, giving her medication, pounding on her chest, which is what they do when, in resuscitation, and you know, ultimately she didn't recover. But I, it's sad to me that that's how her life ended. Out there with this desperate effort to save her when there had been so much little before, when it might really have made a difference for her.

Studs Terkel Now there you have it, too. There you have it. The thing, the sit-- you just described. All those frantic efforts to save that had been so neglected before.

Laurie Abraham It, it seems absurd.

Studs Terkel For one, one reason or another. We have that. That's almost a metaphor, too.

Laurie Abraham Yeah.

Studs Terkel Right there. That part.

Laurie Abraham And, and you find that in every part of this book, because we won't in this country just let people die in the streets. In the end we'll rush to save them, when saving them may mean they'll be a lifetime of disability, not being able to walk, not being able to think. I mean, and I mean, one thing I heard, too, for example, there as a rehab center right across from Mount Sinai called Schwab, and some of the patients there are there for gunshot wounds to the head. And these people have, most of them were unemployed before they got there. Once they're devastated, have this devastating brain injury, there is so much money poured in to bringing them back that they have more people employed after their brain injuries than before their brain injuries, because okay, now we're going to dump a lot of money, but when these mostly young Black men needed help getting work or, you know, getting into some kind of system, there's nothing there.

Studs Terkel It's crazy.

Laurie Abraham Yeah.

Studs Terkel I mean, now this is insane. This is loony. Yeah.

Laurie Abraham I, I agree.

Studs Terkel Now, what happens to Jackie Banes' husband, Robert Banes, and the dialysis and the kidney and weight, skinny, and what happens to him?

Laurie Abraham Well, he, he was on dialysis when I met him, he eventually got a transplant. It kind of happened in a -- I don't know, not a very ext -- it wa -- in, in, in a suspicious way, I guess would be the way to say it. He had a drug problem as well. And when he was being called, when the family was being called to alert Robert that a kidney was available, he wasn't there and was out partying, and so they had a hard time tracking him down. But they did track him down and eventually gave him the kidney. So it was kind of a strange way for it to happen. I know for Jackie extremely uncomfortable.

Studs Terkel How is he getting along?

Laurie Abraham He is now gone to drug rehabilitation twice. His kidney's okay.

Studs Terkel The kidney's okay.

Laurie Abraham Mmm hmm. And the thing is, what, what destroyed his kidney has, and I've been told this by a lot of doctors, had nothing to do with drug use. It's a, it's a chronic disease that they don't know the cause of it. But the fact is his, his drug use affects his ability to take the medication that can prevent the body from rejecting a new kidney. So for him the struggle is to stay off of drugs enough so that he can take his antirejection medicine for the transplant.

Studs Terkel What about Jackie's father, who lives elsewhere and now lives with Jack, Tommy Markham

Laurie Abraham Tommy Markham

Studs Terkel -- With the high blood pressure and stroke?

Laurie Abraham Right. He lived with Jackie for about a year and a half and now he is in senior citizens' housing and has got some friends over there and is -- you know, now he has diabetes. He used to have just high blood pressure. Now he has diabetes, and

Studs Terkel -- What

Laurie Abraham What his mother had, the same two things she had. So, you know, he's getting by. Not great,

Studs Terkel What about Jackie and her kids, now we come, Jackie has a number of dimensions to her responsibilities.

Laurie Abraham Yeah, well she's, she's doing pretty well now. She got a job as a preschool teacher over there at a Catholic school on the West Side, and her three kids are pretty healthy, doing well. One of them's enrolled in Von Steuben, in high school, which is a real good high school in the city. And but, like I said, she doesn't have health insurance now. She's making just over $1000 a month. And to get health insurance for her and her three children would cost her $300 a month. So that's a third of her income almost.

Studs Terkel So now we come to the question of no health insurance and benefits, and we know more and more as far as jobs are concerned, employment, that we hear the phrase "temp," temporary worker. Many of these people are.

Laurie Abraham Right.

Studs Terkel And when you're a temporary worker, there's no seniority, no seniority there's no pension, there's no health benefit.

Laurie Abraham That's

Studs Terkel And that is more and more the case, so what is happening, what has happened to Jackie Banes and her family and the Lawndale district of Chicago, what you call the wasteland, in the middle of all these medical centers, can happen on a broader scale, too.

Laurie Abraham Yeah, I mean there are a lot of working poor and then working more middle-class people who don't have insurance. That is a key thing we need to change if we want to keep people healthy, provide basic insurance for everyone.

Studs Terkel It's amazing, isn't it, how health has become, suddenly we're aware of it, even radio programs and newspapers have, you know, health news. They have financial news, they have sports news of course, they have hype -- entertainment news, but now there's health news. Rather interesting, isn't it?

Laurie Abraham Yeah.

Studs Terkel Laurie Abraham and her quite remarkable book, Mama Might Be Better Off Dead: The Failure of Health Care in Urban America, University of Chicago Press. [pause in recording] How long did you spend? When'd this begin with the Banes family?

Laurie Abraham In May of 1989 and I spent until well into '91, '92.

Studs Terkel Good couple of years, almost three years.

Laurie Abraham Yeah, almost three years.

Studs Terkel Three years, and it began, began when you were working as a staff member of The Chicago

Laurie Abraham Reporter,

Studs Terkel Reporter, and, and Roy Larson who was publisher, said "Why don't you go ahead and work on this thing?"

Laurie Abraham Yeah, it was a great, it's a real luxury for a journalist to be able to follow one group of people for so long. Usually we get in and out of the story, so this is great.

Studs Terkel So you, you did that. Did Jackie knows you pretty well now.

Laurie Abraham Yeah. We both, we know each other pretty

Studs Terkel And you know the other members of the family. So what, what do you -- feelings now about the work and the, not just the Banes family but the millions of Baneses. But over and beyond that, that middle-class family who are having a tough time with health, if, if there is no insurance.

Laurie Abraham Right. I think that we need to make a commitment to providing health care to all our citizens. And we, when we do that we can't forget that poorer people like this family have been struggling for a lot longer than the middle class and have some basic problems and basic needs that we often don't think of like we've mentioned today, things like cars, you know, some kind of transportation, things like adult diapers, things like medication, you know, can't afford medication. And these are things that could get lost if a lot of the attention is focused on the middle class and providing insurance security for them.

Studs Terkel You know you're talking, it's interesting. Transportation, oh, how is that a problem, you know. Diapers for adults or old people, how is that a problem? Medication you'd think -- these are things suddenly become the obstacles that were taken for granted as having, being had by others. But my point is this will affect the middle class as well.

Laurie Abraham Yeah.

Studs Terkel I mean once you hav-don't have it, you know, well you know what happens to any family, hardworking that is not particularly affluent when someone becomes seriously ill and there's not enough insurance to cover it.

Laurie Abraham Right. And it happens to middle-class people all the time. Even in my own family I have a sister who can't get insurance. So people, this could be a warning to people that this is how bad it can get. I'm not saying it will for a lot of middle-class people who have family resources to perhaps depend on, but it can get this bad. And you know, that's a warning.

Studs Terkel One of the things you just said, the book is a warning. Yeah. So any further thoughts -- oh, just one little thing. There's so many things come -- I'm just looking through a note here, "Adele better off separate from her husband of 33 years."

Laurie Abraham Yeah.

Studs Terkel You have all these other aspects of it, too. The nature of, of

Laurie Abraham The nature of government programs is that if you're single and disabled, and your husband works, his income is counted against you. So you can't be eligible for Medicaid, so you can't get your medications, and you can't get a disability payment, so a lot of people who are on dialysis separate on paper for the unit or and sometimes get a divorce because financially they can't do

Studs Terkel You know, this is this case people on welfare, on relief back in the '30s, overwhelmingly white

Laurie Abraham Yeah.

Studs Terkel That there again, if the husband's found in the house, he's not working [unintelligible] they're cut off. You know.

Laurie Abraham Oh, that still happens.

Studs Terkel They would have people coming at night, you know, looking at it, in those days they had social workers and, and detectives. And they were called, they were called "midnight creepers."

Laurie Abraham Really?

Studs Terkel Yeah. And so, and so they had to separate or go away. And so the same thing applies to medical aid here, too.

Laurie Abraham It's surprising, and there's still that same fear of the welfare worker. I can remember Jackie seeing her welfare worker across the back porch and saying, "Oh, I wish I had a scarf on so she wouldn't recognize me." There's just this fear that they're going to find out something or somehow take your benefits away for a wild capricious reason.

Studs Terkel So we come back, perhaps you end to Jackie Banes. You found a winner. Jackie Banes is really a heroic figure. And she's a preschool teacher now.

Laurie Abraham Right. Right. So and, that job has given her a lot more confidence and belief that she knows she's going to make her mark in the world, because she was pretty down during a lot of the time I was watching the book. Managed to hold things together, but wasn't feeling very good about herself.

Studs Terkel What, any base we haven't touched you feel like hitting, any thought?

Laurie Abraham I guess one thing that I did want to make the point of, a lot of people you know consider Medicaid recipients as these bad people on welfare or something like that, and we need to know and pay attention to the fact that a lot of Medicaid money is in fact these days being used for middle-class people, and maybe middle-class people can understand this because they, we -- middle-class people use it for nursing home care, because nursing homes are so expensive, and when you go in a nursing home, you quickly exhaust any savings you had and you go on Medicaid. And I have figures that say that half of Medicaid recipients are children, but they account for only a, afifth of expenditures, and the elderly and disabled account for a quarter of Medicaid recipients, but 73 percent of expenditures. So it's mostly elderly and disabled, it's not these poor women and children out there, you know, taking all our money from

Studs Terkel Laurie Kaye Abraham, guest, and the book is Mama Might Be Better Off Dead, and Alex Kotlowitz, you know, wrote that beautiful book There Are No Children Here.

Laurie Abraham Yeah.

Studs Terkel Book was a provocative combination of our health delivery for the poor. Might I add, for more than that, for the possibilities in a, in a dark way, what it could be for the middle-class people, too.

Laurie Abraham Yeah.

Studs Terkel Thank you very much.