drmargaret

I was listening to the radio and talking with some people last week when it struck me that politically correct speach had gone too far. The radio advertised a fund raiser for the “intellectually challenged.” The people I talked with had decided to mislabel the neurological difficulties as “learning disabilities.” I suppose that the label of learning disabilities was somehow better than neurological impairment. But it’s just wrong.

I got assaulted when I attempted to explain this. I have the bruises from where I got grabbed when this person got adamant. In the past the police have explained that being assaulted is an “occupational hazard.” It’s not. It’s an assault. In some cases it’s an assault and battery.

Missing a structure or having something show up as positive on a CT scan or MRI scan of the brain is a neurological impairment. Having a difference between intellect (as measured by a test of intellectual ability) and achievement (as measured by a test of reading, spelling, math, writing, or some other academic measure), is a learning disability. The two are not the same thing. There may be some overlap.

Overall problems with the brain producing people with intellectual problems, get classified as having difficulties with cognitive functioning. If they have those problems since birth and if they also have problems with adaptive functions, meaning skills in communicating with others, performing daily living skills and social skills and, if young enough, motor skills, they get said to be mentally retarded. These people can get services through lots of organizations if they labeled correctly. If someone mislabels them as learning disabled, they can lose out on those services.

What’s the point of all these labels? Don’t they make people feel bad? Shouldn’t we in the “helping professions” make people feel good? I hear this argument. I heard it prior to being grabbed. I don’t think it’s a valid argument. Does someone missing part of their brain, get that piece back if I call it something else? Do they do better on the tests? Should I test them differently so they can feel better and not notice that they can’t do things like other people who have that piece? To discriminate is to treat diffferently. I don’t treat the brain damaged or the retarded any differently than I treat people without brain damage or retardation in reference to psychological testing. I just want to know how well they can or can’t do. That’s my job. But sometimes these people have been led to expect that they will get treated differently. Sometimes by psychologists. This ends up doing these people a disservice. They go out into the real world to work and they can’t function. The real world isn’t 100% supportive. It’s real. It provides immediate feedback on what you are able to do and not do. Some things are too hard. Some things can’t be achieved. Some things are failed.

This shouldn’t be a surprise to anyone I’m seeing. These people are all saying they have disabilities which keep them from functioning normally. So the first question I’m asking adults is how are you not able to function? Why can’t you work? It’s simple. It’s direct. It’s to the point. Yet it comes as a shock. I don’t understand this. I had ataxia episodically as a kid. It’s a neurological problem. I was a klutz. I couldn’t ride a bicycle. That’s not a learning disability. Nobody prettied it up. I coped. I didn’t get chosen for sports teams first. I was usually chosen last.

I was a bad speller. I still am. Some programs on computer have a spell checker. This blog doesn’t. My spelling problem might be considered a learning disability by some people. Since I was never taught the rules of spelling, it might not be an actual disability. I may just not have been taught how to spell correctly. I still cope. You can tell me I have some neurological problems or spelling problems and I’m not going to freak out. I’m aware of them. I’ve known about them for a long time. Everyone with learning problems or neurological problems who is an adult who isn’t overly sheltered knows they can’t do some things. So for me to point out that they can’t do somethings isn’t news.

It’s not the same for someone who just recently got a brain injury or stroke. They might not know. People with right hemisphere injuries notoriously misrecognize their injuries. So I’m not talking about the recent injury people. I’m talking about people with lifelong injuries and learning problems. This group should be aware as adults. I’m talking about people with no more than mild cognitive impairment. IQ range between 55 and 70 or higher. These people know they have limitations. They have awareness. They know that they are missing the questions. They know they don’t know the answers. They know that it’s all too hard for them. And it’s fine that it’s all too hard. I just need to document that they can’t do some things. I tell them upfront that I’m not expecting them to be able to do the tests. I can’t do the tests. I can only do some of them. Some of them I fail. Everyone misses some items. Some people miss lots of items. In some categories I miss lots of items. There is nothing wrong with that.

Some people decide that missing items means they are “stupid.” I’m not stupid because I can’t ride a bicycle. It’s just something I can’t do. There are other things I can do. It’s important to find out what these people can do and look to their strengths. But mislabeling them and trying to explain that nothing is wrong flies in the face of reality and limits their ability to manage their lives successfully.

Through a series of events I ended up seeing a physician I hadn’t seen in about 30 years. A very wonderful man. When he first saw me those 30 years ago I had a very bad infection. I was young and very frightened. I had been seeing a variety of medical doctors to try to figure out what was wrong. While no one could really figure it out what was happening was that I was getting treated badly in the process. The doctors stopped looking directly at me and started looking down at their desks. Then they stopped touching me. Then they stopped talking to me and messages were given through nurses or left on messages machines. I was a psychologist at the time and I understood how uncomfortable the ambiguity of my situation was making these medical professionals. Fortunately no one doubted that I was sick. So the waters weren’t muddy. The doctors just felt inadequate. But there was this one doctor who was different. He talked with me at the time. He even broached the possibility that I might not survive the illness and said it might be that it could be diagnosed at autopsy. He was the one who said that he would be available to make me as comfortable as possible right up to the end. I recovered and got better and he remained my physician for many years until I ended up in a health plan with a company he didn’t belong to. I worked directly for some healthplans for a number of years. So my choices of physicians stayed inside the networks of the healthplans.

Years ago, medical doctors used to meet with patients and take a history. The histories took at least 10 minutes. Christopher was different. His history was almost the same as mine as a psychologist. His history takes almost 30 minutes. In complex cases it can take longer. Managed care changed history taking for a lot of physicians. It didn’ change Christopher. There were probably six physicians involved with my medical care 30 years ago. I’ve returned to see three since that time. All three have remembered me. The case was unique. They remember different things about the case. One doctor remembers a story I told him about how I thought AIDS was being transmitted. One doctor remembers how my family reacted to my illness. Christopher remembers some of my symptoms. For him I was an individual, the illness was individualized and the symptoms were unique to me. It’s a manner of managing medicine.

I have an HMO. I paid cash to see Christopher out of the network, because I just couldn’t stand the idea of seeing yet one more new physician. People with run of the mill medical histories just don’t get a sense of how exhausting it is to see medical doctors. It starts moving up to trauma levels. The last several new physicians have been very disconcerting to say the least. There is limited eye contact and a degree of impersonalization that makes the experience cold. So for this referral I went back to Christopher.

I was rushed. The office had moved. The traffic was a mess. My schedule had everything possibly go wrong. But at the doctor’s office it seemed fairly calm. There’s weren’t lots of people waiting. The office staff wasn’t rushed. There was no sense of the frantic chaos I had just left from my own work. This place seemed serene. Then there was about 45 minutes of history with someone who actually seemed interested. This is about the second time a medical doctor actually seemed interested in taking a history from me. Most times I’m much more interested in providing one than they are in hearing about it.

The office was cluttered with images of Ireland. We talked about that for awhile. We share a heritage. We Irish are a chatty bunch. But it’s also the whole old school medicine approach. You talk to someone, you get more information than you do just looking at machinery. It’s the antithesis of Dr. House. It’s diagnosis by communication, by sight, touch and feel, rather than just by numbers. It’s personal and warm.

People are surprised at insurance companies when people go “out of network” to see doctors. There are several reasons people do this. They do it for the convenience of the appointments or locations. They do it because they trust the expertise. Or they know the person and want them.

Now the doctor I got for a referral may have been just fine. I have no idea. I just know I couldn’t see another new doctor just yet. I would either start crying if something went wrong or I would start screaming and either reaction would be way out of proportion to the situation. It would be the reaction to the last four MDs and that just wouldn’t be fair. So that reaction will be saved for my next trip to an emergency room when some idiot asks me either when I can’t breath at all or when my face looks like a balloon “What seems to be the matter?” then I’m going to let them have it. I always do. It’s never fair to them. But geez. The clerk at the desk wasn’t that much of an idiot and seemed to figure out what to write down on the form. I’m spoiled from the old school. Doctors used to take five minutes to take a pulse. They used to take it, not a nurse. They took the blood pressure. They listened to the heart. They looked at you. They touched you. They actually knew how to draw blood. They had their own laboratories in their offices. They has microscopes. They could stain cells. Young doctors rely on technology for diagnosis. They don’t recall that at one time there wasn’t a CT or MRI or the test they are now ordering. There were clinical signs. The clinical signs can show up before some of the lab tests.

Christopher remembered I used to do research. He remembered I used to have a background in medicine. It’s been 30 years. I can’t remember some of the people I saw last week. I can’t recall some of the people I saw this week. I do remember him though. He’s still wonderful.

“When hearing the thundering of hooves, look first for horses not for zebras” is an old adage of medicine. The saying advises doctors to first look for the common place before looking for the unusual. Unfortunately some doctors never suspect the unusual and for those of us with “zebra” medical conditions we remain undiagnosed or limited in treatment options for a long time.

When I first ventured into private practice I decided I needed to support myself and wanted to work with a large group of people. Most psychologists build their practices slowly over a period of time. It’s a safer route to take. I had been quite ill my last years of post doctoral study and didn’t want to work in the sex offender field. So I needed income and bounded into private practice with a business plan to get patients quickly. I was hunting for zebras. I went to several internists and primary care doctor in the area and a few family practice doctors and told them that I wanted the people they really didn’t want to see. These were the patients that weren’t getting better. The doctor may not know what was wrong with them. The doctor may have thought it was all in their mind or that the patient just wasn’t doing what the doctor wanted with treatment. I wanted people who were complaining about being sick for at least six weeks and preferably six months. I got an entire case load within three months.

Medical psychology was an almost unheard of field at the time I started practice. The first thing I did was to take a history. History taking takes time. Mine took an hour and a half on average. I drew diagrams of geneology. I listed symptoms in detail. I had people bring in bottles of every single bottle of medication they were currently taking, even the over-the counter things. I detailed out what the person told me about what was happening. Men and women talk about their symptoms differently. Men and women take medications differently. Men and women complain differently. I listened and wrote things down. In some cases, I could figure out what was going on and what was wrong with the person. I could call the MD and tell them or write a letter. In other cases I could get the patient to tell the doctor what their symptoms were using different words so the doctor would understand. In other cases I could explain to the person how the medications had to be taken and how the medications worked on the disease so the person would take them correctly.

Other cases were more complex. Some people can’t tell what they are doing when they get pain because all they notice is that they hurt. So it’s important to teach them how to keep track of pain. I helped people learn to do research on their symptoms. They learned to record, and track and grade intensity and frequency and what was going on at the time of the onset of the pain. After awhile they could see some patterns. In other cases they could experiment with different treatments. New treatments come out all the time. People think some treatments work but it’s important to look at data to see if they work or not. I taught people how to collect data.

In cases where there was no diagnosis it was important to look at a constellation of symptoms. It’s important to understand the medical decision trees that doctors use to diagnose. Lots of time it’s hard to tell what’s going on when someone has been in a lot of treatment. To get a clear picture a new doctor might stop all the treatment by tapering off and discontinuing all the treatment to get a fresh look at the case without treatment. The new doctor will order all new labs to be drawn up at that point. Laboratory studies and observation and examination form the backbone of how physicians make diagnosis. Responses to medication and treatment are next in the diagnostic process. The last part is confirmation of improvement or worsening by the patient. Patients often get frustrated and often feel disregarded by the process. Medical doctors feel that patients interfere with diagnosis and treatment and don’t follow directions.

Psychologists make diagnosis differently from medical doctors. Psychologists start off by making a series of hypotheses and getting patients involved directly in the treatment process. Medical and legal psychologists collect more data than most clinical psychologists doing general treatment do. Medical psychologists focus on medical situations. Legal psychologists deal with any aspect of law and psychology. Another name for legal psychologists are forensic psychologists. Psychological testing is used by clinical and legal psychologists and may be used by other types of psychologists as well. I used it occasionally as a medical psychologist to give a patient an idea about how well they might do with a specific type of medical procedure like an elective surgery. Testing was also used to see if people were depressed or anxious following medical illnesses like cancer or heart operations to make treatment decisions.

Psychological testing is often used in clinical trials with orphan drug testing specifically designed for people with rare medical conditions (zebras). This allows the drug company to know who might benefit the most from the drug and have the least side-effects.

Now that there’s a television show highlighting rare infectious diseases (House), more interest is being paid to unusual disease presentations. Few doctors will ever see the cases Dr. House or his team sees. I lament that a psychologist isn’t part of the show or that good history taking isn’t shown. Detective work and medical investigation into homes for possible causes of infection are shown and are hardly routine. They do show some of the genotyping and genograms episodically and they do show the medical decision trees and the countless hours of computer or library research needed into the cases. Most large cities have a medical center that has access to a medical library. It’s important when using the internet to look for articles that are from journals that are peer-reviewed and have good medical acceptance. There are a lot of articles that have no scientific basis to them.

There are a couple of very basic books I recommend for people learning how to communicate with their doctor about their symptoms:

The Merck Manual-this book lists medical conditions and symptoms, common tests, and prognosis. It is updated every few years. It contains normal laboratory chemistry values. It requires a medical dictionary to understand some of the terminology. If you are a person who gets every disease you read about, then don’t read this.

The Physician’s Desk Reference-this book is a compilation of all those inserts you get with all the prescription bottles from the manufacturers. It has pictures of the pills or capsules or ampules of common medications. It lists the side effects and common dosages. It lists some interactions. There is also a version for herbs and over the counter medications and supplements.

Gray’s Anatomy-this book contains pictures and line drawings of body parts. If you don’t know what something is or where it’s located, this tells you and shows you a drawing in cross section. There is also a coloring book version.

I have no financial interest in any of these publications.

I don’t know how many of you reading this know about Dr. Kenneth Clark. Growing up he was the most famous psychologist I ever knew heard about. In the 1950’s his work got brought before the United States Supreme Court in a very famous case about segregation. He had designed a study using dolls with children. It was a simple study using four dolls. Two of the dolls were boy dolls and two of the dolls were girl dolls. One boy doll and one girl doll had brown skin tone and one boy doll and one girl doll had white skin tone. Most of the children in the study, done on children in segregated schools in the South, said that they could tell which dolls looked like them accurately. But when asked to point to dolls that were pretty, smart, or had other likeable features the children chose the white dolls. When asked to point to dolls that were stupid, ugly or had unlikeable characteristics the children chose the brown skin toned dolls. The study was accepted by the US Supreme Court in Brown v. Board of Education in 1954 as part of psychological practice and it was part of what made me decide to become a psychologist. Dr. Clark died in May 2005.

Unlike Dr. Clark, I’m a Caucasian psychologist who has published on racism. I’ve replicated the doll study enough to know that even today it can be replicated with ease. Young children will still tell you that the brown dolls look like them and that the pretty, smart dolls are the white dolls. Lots of psychological and sociological effort has gone into trying to change that. There’s been an entire Afrocentric movement in the hopes that will change that, but we know segregation for positive or negative purposes really doesn’t work well.

As a journal author my picture doesn’t accompany my articles on racism. Young psychology students write me on occasion at the email address or at the mailing address at the end of the article. It’s clear there is a presumption that I’m African American when they write for advice on school selection regarding dealing with issues of racism and racial identity in the application process. When I got the first of these letters I asked a colleague about this. I said I wanted to make sure the school I was going to wasn’t racist, had a good mix of faculty with a focus on cultural and ethnic diversity, and that I could work with a broad based population of people from all walks of life. I didn’t worry about being discriminated against because I was white. I worried because I was young, I had money, I wanted to work with poverty level people and mainly minorities and I wasn’t sure I had enough of a research background, people going to schools like UCLA were already trying to get something published. I was providing tutoring services for poverty elementary school students on-campus at Washington Street Elementary School in Los Angeles to help students who were having difficulties in the class. It was an early intervention program. Being African-American would have raised different issues. My friend and colleague said for me to stick just with the issues and to leave my race out of it. He said the question was about school selection and the criteria used. So I wrote back a detailed letter about how I look for objective and subjective signs of institutional sensitivity to race. I look at the published documents the organization sends out and see if they have diverse pictures of people representative of all types of people. I look at how they go about selection decisions–are they just looking at test scores or are they looking at other means of making selections. I look at how many people in the organization are from various groups–how diverse is the organization and at what levels. Is senior management diverse or only the contracted staff? Finally I want to see how they support the research I want to produce–who do they have on their faculty doing the type of research I want to do? I ended up attending California School of Professional Psychology in Los Angeles. At the time I enrolled there they were one of the only schools that had a non-discimination policy in writing that included sexual orientation and was activly recruiting for African-American students. It was a school that was attempting to establish itself as much more than tolerant, but as welcoming.

Coming from that environment, it’s interesting listening to people who don’t know anything more about me than the fact that my skin tone is white. These are the same 2/3 of people who said the white dolls were prettier.

I have two quote on the back of a miniature quilt. The first is from Michelle Wallace in 1975 “We exist…working independently because there is not yet an environment in this society remotely congenial to our struggle–because being on the bottom, we would have to do what no one else has done: we would have to fight the world.” The second is seventy years earlier from W.E.B. Dubois in 1903 “The problem of the twentieth century is the problem of the color line.” The other problem is that it’s 2005 and both quotes hold up now.

Dr. Clark will be missed.