TV Psychologist Gets It Right

There's been a story going around that I just heard about a couple of weeks ago. Abbie Dorn, a young mother of triplets who suffered severe brain damage due to complications during delivery, is in a legal battle to see her children. Her ex-husband, who divorced her just a year after the event, saying he needed to "move on", has prohibited their three (now four year old) children from visiting her, and even prohibits anyone mentioning her at all to them. Oh, and after she received a malpractice financial settlement, he's reportedly suing her for child support.

Good Morning America covered this story on April 14th of this year, and played up the "tragedy" of the whole situation. It wasn't terrible coverage, but it wasn't too great, either. It didn't really scratch the surface, so was more exploitative than anything else, as far as I was concerned.

On July 10th I happened to catch this story for the first time on CNN. The Dorn story starts about 3/4 of the way down the transcript that is linked here. After going over the basic facts, the CNN anchor went to Dr. Wendy Walsh, a clinical psychologist who specializes in relationships for commentary. I must admit that I am usually biased against talking head TV psychologists. They either seem to a) say something that is so "common sense" that you just go "Duhh", b) try to wedge whatever topic it is into pushing some agenda of their own, or c) come up with some off the wall thing that they couldn't possibly infer from never ever meeting or talking with the principle people involved.

Dr. Walsh's comments both surprised and pleased me. She was both thoughtful and insightful. After the story focused (much like GMA) on whether Abbie could actually communicate or not thru blinking, Walsh immediately cut thru that to comment

And, you know, the question is, who cares if she can communicate or not? There's a living, breathing mother there...Who deserves to see her children. And the children, you know, Don, kids - everything is new and normal in the world of small children. I don't think that they'll be overly traumatized. Would people prefer that they're given a cold teddy bear to comfort them?

Walsh quickly followed with

And, you know, the biggest question this raises for me, Don, is what's going on in our culture that we institutionalize people with disabilities to the point that now we think it's just so wrong to even look at them or be exposed to them? What does it say that we're sweeping away the ugliness and not allowing families to have an integrated experience with people with disabilities? I think it's making us lose our compassion for people with disabilities.

Walsh also blogged on the story on her own blog here, where she also wrote

I’m concerned that the more we insulate people, young and old, from seeing the full range of human possibilities the more we limit our capacity for compassion.

My hat's off to Dr. Walsh. Rather than settle for a superficial recounting of a "tragedy", she cared enough to dig a bit deeper, and provide some thoughtful analysis. Like a good documentary film maker, she challenges us to think deeper not just about this particular situation, but about ourselves and the wider world.

Maybe I should pay more attention to TV psychologists. Or at least this one.

Honesty, Justice, and Trust

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I'm not the kind of person that immediately shouts for someone to lose their job when they do something wrong. We all make mistakes, and jobs are hard to come by nowadays.

But I'm also the kind of person that gets their dander up when organizations try to sweep problems under the rug, and whitewash a situation to cover their own backside.

I recently wrote about how two police officers in Tybee Island, Georgia tased a young autistic man who was sitting outside a restaurant waiting for his brother, who was inside. They not only tased him, but wrestled him to the ground, bruising him and breaking his tooth in the process. Originally, the police chief did what might be expected. He defended the actions of his men, and even went so far as to "blame the victim" and his family somewhat by saying that he was sorry that he had been left "unattended". That last statement, which implies that no one with any kind of disability that impairs communication should ever be left alone, even for a few minutes, got me (and a lot of other people, I'm sure) very upset. I don't realistically expect that the whole world will change overnight, and that the world and everyone in it will totally understand my autistic son as he grows up. I also don't think it unreasonable that he should not have to fear being beat up and tased for sitting on the curb outside a restaurant on a hot day.


Evidently there are some reasonable people living in Tybee, and some of them are actually in a position to do something. According to this article:

Tybee drops charges against autistic teen

WTOC11 reports that,

Tybee Island Mayor Jason Buelterman and Schleicher asked Police Chief Price James W. Price to have the GBI investigate the incident and make sure no laws were broken by police.

Many politicians, both local and national, would have followed on what the police chief originally said, and would have tried to cover up the situation and hope it would go away. I applaud the mayor and city manager, who asked a neutral party (the Georgia Bureau of Investigation-the state counterpart to the FBI) to look into the matter. As police officers themselves, the GBI would have an excellent understanding of what proper police procedure in such cases should be, as well as having practical experience in similar types of situations. Yet as a neutral party, they also understand that the public needs to have confidence in its law enforcement officers. Law abiding public citizens should not have to fear their own police force. When law enforcement officers "go too far", it impairs the ability of all other officers on the force in their ability to do their job. When you are in a job that serves the public, you need to be accountable to that public. You may not like it, but that's part of the job.

According to another recent article in the Savannah Morning News, "Tybee Police Learn About Autism", the two police officers that arrested Clifford, as well as a jailer, have both resigned their posts. The police chief has been suspended, and officers are now being sent for training on dealing with people with autism.

My hat is off to the city of Tybee, for stepping up and doing the right thing. Nothing will undo the damage that has been done. Clifford will forever more be afraid of the police, and it will be that much harder for him to react calmly the next time he interacts with them. But it looks as if the city is stepping up, doing what it can to prevent future similar occurrences, and weeding out a few bad apples (while sending an important message to the rest of the department).

I don't know if the police chief will keep his job, or if he should. I am not in a position to know what he knew, when he knew it, and what he has done in the interim. But I trust now that the people of Tybee will do the right thing, because of what they've done thus far. And if he does keep his job, I sincerely hope that he issues a much more heartfelt and all encompassing apology to Clifford and his family, for them having to have endured this.

Geogia-Zero Tolerance for Differences

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Evidently it's not safe to walk around (or sit) any place in Georgia while being autistic. At least not by yourself. Because if you do, you're fair game for being tased by the police. At least, that's what the police chief of Tybee Island, Georgia seems to think.

A little over a week ago, it was a 14 year old boy being arrested on felony terrorism charges for drawing threatening one inch stick figure drawings on his homework. Now it's an 18 year old autistic young man tasered after being confronted by police while he was sitting on the curb waiting for his brother and a friend to come out of a restaurant.

WMBF news reported yesterday on how 18 year old Clifford Grevemberg was waiting on the curb outside the Rock House Bar and Grill for his brother and a friend to come out, when he was approached by two policemen. According to the police report, Clifford was staggering while walking back and forth in front of the establishment, and when questioned, responded that he was waiting for his brother to come out with some food.

The police report said that one officer asked Clifford if he had been drinking, and he responded yes. Of course, they didn't ask him what he had been drinking. Unless he was asked if he had been drinking alcohol, my 10 year old son might have also responded in the affirmative, having drunken water, soda, or some other perfectly legal beverage. The officers then asked for identification (twice), and when Clifford turned and began to walk away, they grabbed his arm. Clifford, as might be expected, tried to retract his arm away from them, which gave these two police officers all the justification they thought they needed to taser him. Which they did while forcing Clifford to the ground, causing a bruised face and a broken tooth.

The Tybee police chief, in a statement given today, tried to explain away the incident by saying that Clifford gave the appearance of being intoxicated, and tasing him prevented further damage to both Clifford as well as the officers. He gave a backhanded apology, saying

"We are sincerely apologetic for the injuries suffered to Mr. Grevemberg. We are also sorry he was left unattended under the circumstances..."

In other words, if you are so brazen as to think that you have the right to walk or sit in a public place while being autistic (and you don't have an attendant immediately at your side), then you shouldn't complain when the police tase you and arrest you.

Terrorism? Really??? Or "Get Out of Our School!"

If this wasn't so over the top ridiculous, it might be funny.

A 14 year old Georgia boy has been charged with a felony (making terrorist threats) for a small (about 1 inch high) set of stick figures he drew on a paper in class. The stick figures depict one figure (labeled "me") shooting another stick figure (labeled with his teacher's name).

There is no question that his drawing the picture was both inappropriate and wrong. There is also no question in my mind that the school's response is so wildly disproportionate as to make me question why they would do such a thing. There has been no allegation of the boy attacking his teacher, bringing a weapon to class, or even of having formed a definite plan as to how he would accomplish the task in his drawing. There has been no mention of the school consulting with anyone else (the boy's doctor, their own psychologists, the police) to evaluate the situation as to how likely it was for the boy to be able to carry out his threat, much less evaluate the seriousness of the situation.

Many people threaten to kill their spouses every day. They very seldom get arrested, much less charged with making "terrorist threats".

So why would a school do such a thing?

My guess (and it is a guess, as there's been no statement I've seen from the school) is that this charter school where the boy is enrolled wants to dump this "problem student" from their school, and that they are using this as a convenient excuse. Many charter schools don't want to spend the time and money it takes to properly educate children with special needs.

This could end up as a case of "zero tolerance" gone wild, but I suspect that, in the end, the school will come up with some "compromise" that will entail dropping or lessening the charge, as long as the boy withdraws from the school (or accepts another placement they have suggested).

Liverpool-More than the Beatles

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As most fans of the "Fab Four" know, today a digitally remastered collection of Beatles songs was released.

As most are surely aware, the group got their start playing in pubs in Liverpool. But what I really want to talk about today is something else that Liverpool may become famous for-The Liverpool Care Pathway. I bring this up to illustrate what I believe is one of the major ways that government directed/socialized medicine is potentially life threatening to those with disabilities.

Basically, the Liverpool Care Pathway (LCP) is a standardized method of dealing with people that are expected to die soon in the UK. It is a standardized treatment method that has been vetted by a panel of "experts" to improve how one dies in the UK. On its surface, there is much to recommend it. Rather than be hooked up to machines one doesn't want and subjected to procedures that have little probability of success, it is much preferable to die in relative peace. I have often advocated for patients to have the right to say what they want, and have had many "difficult conversations" with patients regarding what kinds of interventions they wanted if they became unable to communicate. But it appears that the LCP goes way beyond advocating for and implementing patients' wishes. Combined with the Mental Capacity Act of 2005, which gives doctors the ultimate decision making authority when they judge patients unable to make their own decisions, the LCP allows patients to have fluids withheld and deep sedation given IV until they die. Once doctors decide that you fulfill entry into the LCP, one's death becomes a self-fulfilling prophecy, as the deep sedation masks any indication that you are improving.

The LCP was initially used for people with terminal cancer, but its use has expanded to patients with other conditions, such as after a stroke. As this presentation shows, all you need to be entered into the pathway is to be hospitalized for 48 hours, and two of the following conditions present:

"- bed bound
- semi-comatose
- only able to take sips of fluids
- no longer able to take tablets"

It doesn't take a rocket scientist to see that many people with disabilities might enter the hospital with at least one strike against them. And combined with the general attitudes towards the elderly and disabled in healthcare settings, it isn't hard to see how some people feel that they need to rescue their loved ones from the LCP. As noted in some of the articles I linked, it doesn't matter if your friends and family disagree. Family members have been threatened with arrest for feeding their family member once they were put on the LCP fast track to death pathway.

But why bring this up now? Why don't I, living across the pond, just MYOB (mind my own business)? Because of course tonight is the night that President Obama makes his pitch to push the current health care bill that is before Congress. While I freely admit that there are many things that need to be fixed (including access and cost issues), I heartily disagree with the Utilitarian approach that government provided healthcare provides. If there is going to be rationing (and basically all forms of healthcare provision involve some rationing at some point), I want to have the decision making capacity of what is provided, not have it be the decision of some anonymous government committee.

As others have noted, the healthcare bill under consideration creates 52 new government organizations, including an independent advisory council on what are best medical practices. Dr. Ezekiel Emanuel (Presidential adviser and brother to Whitehouse Chief of Staff Rahm Emanuel) has written:

"Substantively, it suggests services that promote the continuation of the polity—those that ensure healthy future generations, ensure development of practical reasoning skills, and ensure full and active participation by citizens in public deliberations—are to be socially guaranteed as basic. Covering services provided to individuals who are irreversibly prevented from being or becoming participating citizens are not basic, and should not be guaranteed. An obvious example is not guaranteeing health services to patients with dementia."

Emanuel sees a world where "the community" comes first, and individuals are only judged worthy of expenditure if they have value to the community (with not even a nod to the intrinsic value of all human life).

So as you listen to the speech tonight, know what the President's adviser on healthcare is telling him, and what this bill before Congress will result in. Don't think that you'll get healthcare reform passed now, and worry about the details later. If you happen to get sick, there just might not be any later for you.

Obamacare and Disability

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Like many Americans, I watched President Obama talk about his health care plan on TV tonight. Many others will comment on the plan in general, but I want to point out what I think are some possible implications for care of the disabled.

First of all, FULL DISCLOSURE-***I am a DOCTOR***. Now I know in a lot of people's minds that immediately may make them tune out anything that I will say, assuming that whatever I say will be self serving. I happen to think that since I have worked continuously in health care in one job or another continuously for decades (yikes!) that I may just have some insights into a couple of things. Your mileage may vary.

Basically, on the surface, today's talk by the President promised that nearly everyone will be covered, you won't lose your present doctor or insurance choice, you'll get all the health care you need, and it won't cost you or the country any more money. Sounds great, right?

Well, anyone with a lick of sense knows that all of that can't be true. So let's look at one of the things that WAS said, and think about it's implications.

One of the things that has been advocated (and that the President heartily endorses) is some sort of a national group of "health care experts" that would determine what treatments should be covered. This group would be a "non-partisan" group in Washington, D.C. This is being sold as "We'll eliminate unnecessary treatment", but there have been no parameters floated saying exactly what kind of treatments they will eliminate in order to save money.

I suspect that some of them may be reasonable, such as requiring prescription of generic drugs when available (though there are several times when patients react badly to a generic, and not to a brand name). Also, undoubtedly, many services for senior citizens will be either delayed or denied. Such things as hip replacements and knee replacements, as well as cataract surgery. Criteria will be imposed, and if someone is judged either to be not debilitated enough, or not to have enough useful years left, then they will be left without service. No one in the administration will admit this, but all healthcare economists pretty much agree on this. This is certainly what happens in other countries that have nationalized their healthcare system.

Now the reason I bring this anonymous, faceless committee up is the effect they may have on the disabled. The whole concept of futility and futile care has been big in ethical circles of late, and this concept is sure to enter into any decisions made by such a committee.

The problem becomes when this central committee decides on what constitutes futile care for a particular person. Instead of a decision being made with the person themself, their doctor, and their family (if the patient cannot communicate), this central committee will make decisions as to whether a particular person's life is worth investing more health care dollars into.

I don't know about you, but I don't have much trust that such a committee won't have an inbred bias against the disabled. Society as a whole is biased against the disabled, but society as a whole up to now hasn't been able to out and out condemn individuals to die from lack of treatment. Such a committee will.

For those of you that will disagree with me, ask your legislator if he/she can guarantee you that no disabled person will be denied care based on their disability. They can't.

Also one last thought for tonight. The non-partisan Congressional Budget Office predicts that millions of Americans will be forced out of their present insurance plans by the institution of Obamacare, and force into the "public option". The most telling thing (IMO) regarding the public option is that both the House of Representatives, as well as the President himself tonight, refuse to include themselves in the public option. The President waffled tonight when asked whether he would submit himself to the same requirements as the public option. The House last week voted down an amendment to the health care bill which would have required House members to take the public option.

If they don't want that option for themselves, why is it good enough for millions of other Americans?

Eugenics With a Smile

When I was younger, I used to wonder how people who lived in Germany let the Holocaust occur. Over the years, I have come to believe that it was a series of small steps which seemed somewhat reasonable at the time, combined with a sense of "that doesn't apply to me" when many things came up, and finally, a tendency to believe those in authority.

Today I think I saw up close and personal how things like the Holocaust get started.

Peter Singer gave a talk today on a local campus. His topic was "Medical Decisions in Life and Death". After watching him today, I don't think that the devil wears Prada. Instead, he wears a rumpled shirt, smiles, is generally pleasant, and advocates for things like puppy dogs and poor people, right before he tries to convince the audience that some people are more valuable than others, and killing babies is OK if their parents decide it's the right thing to do.

OK, maybe Singer isn't the devil. But it was somewhat chilling to see students sitting in the audience quietly listening while Singer glibly tried to show that the definition of death is shifting and arbitrary, and that what we should be using to determine whether someone's life is worth living is Singer's somewhat nebulous definition of "personhood" which depends not on brain activity but on the ability of the person to be self reflective. Since he doesn't believe that humans are self aware before they are several months old, they are not persons, and therefore it's OK to kill them, especially if they are disabled.

Singer started by questioning the definition of death, then used selected quotes from (and pictures of) George Bush to (not so subtly) suggest that those who oppose Singer's definition of death and personhood are right wing religious wackos. Singer then quickly reviewed several cases where people with persistent vegetative states had their feeding tubes removed, and suggested that there was no difference between removing the feeding tubes and letting them die, and actively killing them. He finished by talking about assisted suicide, and how Oregon's law is leading the way forward.

There was time for questions at the end, and after waiting a respectful 4 seconds (so it wouldn't appear that I was gunning for him) I went up to the microphone to ask him a question. I was hopping mad, and I could hear my voice shaking just a bit. I asked him how he could place so much importance on preventing what he terms speciesism (discriminating against other animals merely because they are members of different species) while he so freely engaged in disablism by advocating that parents should be able to decide to kill their children up to several months old just because they (the parents) decided selfishly that their own lives would be better, and that the child's life was not worth living. After all, when disabled adults are surveyed, the majority of them report being happy. Singer was not fazed at all, and thanked me politely for the question. He then proceeded to respond with a bland recounting of why babies weren't persons (because of the lack of self response) and how we should respect the parents' wishes. He then moved on to the next question.

I looked around the room at the audience, which was composed mostly of students. Some seemed to get the point I was making, but most just sat there.

And I think that's what happened in Germany, too, when people heard that the Germans were killing the disabled, and later the Jews.

For a much better account of how Peter Singer is up close and personal, read Harriet McBryde Johnson's account of her time with Singer here.

Don't Help Them-Arrest Them

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If there is anyone left that hasn't read Bev's excellent post "I Am Joe's Functioning Label", I highly encourage you to do so. I think that the phenomenon that she describes, whereby people slap certain labels on others, and then make all sorts of assumptions about them, applies to a story I read.

According to the online version of the Kansas City Star,

The sheriff is recommending charges in the case of a western Kansas woman who sat on her boyfriend’s toilet for so long that her body became stuck to the seat.

Ness County Sheriff Bryan Whipple said Thursday he asked the county attorney to file charges against Kory McFarren for mistreatment of a dependent adult. The county attorney will decide whether any charges are brought. ...

... McFarren, 36, told the sheriff at that time that Babcock had not left the bathroom in two years, although McFarren now contends he’s unsure how long she was in there. Whipple said Thursday that judging by the woman’s condition — she had open sores on which the toilet seat would stick — it appeared she likely sat on the toilet continually for at least a month.

Now I don't know all of the particulars surrounding the story, and I'm certainly in favor of punishing those who abuse the disabled. But some things in this story don't add up to the typical "caretaker abuses person in their care" scenario.

First of all, the person being charged is described as the woman's boyfriend, not her caretaker.

McFarren said she moved around in the bathroom during that time, bathed and changed into clothes he brought her. He brought food and water to her. They had conversations and an otherwise normal relationship — except it all happened in the bathroom.

But the sheriff disputed that account: “She hadn’t bathed for quite some time, I am safe in saying. She obviously was not keeping herself up.”

McFarren said he finally called police Feb. 27 after he became worried because Babcock was acting groggy, as if she didn’t know what was going on around her. ...

...McFarren, who works at an antique store, said he has been taking care of Babcock for the 16 years they have lived together.

So, they live together for 16 years. Since there's no mention in the story, I'm assuming that this is the first time that the authorities are being called to intervene in this couple's life.

Certainly the girlfriend has problems that need attention. But it sounds like the boyfriend and her had some semblance of a healthy relationship, though extremely odd by conventional standards. And it sounds like when the boyfriend perceived there was really trouble, he called for help.

To make matters worse, it sounds like the sheriff doesn't consider the boyfriend to possess full capacity

“The unfortunate thing is this truly is a case of two people, in my opinion, with diminished mental capacity,” Whipple said.

So why did the sheriff want to press charges?

He (McFarren) insisted that he tried to coax her out of the bathroom every day.

“And her reply would be, ‘Maybe tomorrow,’ ” Whipple said.

OK, so they live together for 16 years without having any obvious problems. Both parties have some issues, and boyfriend exercises some poor judgement in when to seek assistance for his girlfriend (though there is no contention that she wanted any outside help). Since McFarren (the boyfriend) holds down a job, he is assumed to be able to fully make all decisions that not only affect him, but also another adult.

And the sheriff comes in and sees something which he considers too weird, and wants to press charges.

Doesn't the county have any psychiatric social workers?

Addendum-I missed the fact that Casdok had already blogged about this. Please see here for her take on this story.
Joe

Serendipity

Sometimes things just happen.

I'm sure that the New York Democratic Party never envisioned Governor Eliot Spitzer resigning, which means David Paterson (the current Lieutenant Governor) takes over as the Governor of New York State for the next three years. There are probably scores of politicians in New York who now regret not pursuing the post of Lt. Governor. And there are probably a lot of New Yorkers that will be surprised to learn that their new Governor is not only Black, but legally blind.

The position of Lieutenant Governor in New York has always been a somewhat weak one, and one that is not eagerly sought after. And no one ever envisioned the youthful and energetic Spitzer would ever need to be replaced. And when the job is playing second fiddle to one with an ego as large as Spitzer's, not everyone might want the job.

When Spitzer wanted to reach out to minorities he tapped David Paterson, who was formerly the minority leader in the state Senate. Paterson had also been widely speculated to be the probable replacement for Hillary Clinton in the U.S. Senate if she became President. Likely few outside of New York noticed, or cared, when he agreed to run as Lieutenant Governor.

From all accounts, it sounds like Paterson is the perfect person for the Governor's job. He is seen as a consensus builder, and is respected by people from both parties. From what I've read, he did a good job in the New York state Senate. During an interview this week he was asked if he ever visited a prostitute. Showing a wry sense of humor, he responded "Only the lobbyists."

Paterson also noted in the interview that 71% of blind people in this country are unemployed, as are 90% of deaf people. I hope he continues to highlight such statistics, while pushing New York to be a leader in working to change them.

Sometimes things just happen. And this time, I'm awfully glad that Paterson is the soon to be Governor of New York. He sounds like just the kind of person that can demonstrate with quiet competence that discrimination against the disabled is not only wrong, but bad for business and society as a whole.

What Makes Someone Be So Cruel?

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Like a lot of other people, I've been following the Poling case closely. But another case in the news caught my attention this week.

This week, in the sleepy Mississippi river town of Alton, IL, 6 people have been charged in the death of a developmentally disabled woman who was 6 months pregnant. The 6 people charged range in age from 43 down to 12 years old. According to the story

Police said the autopsy revealed Dixon died on January 31 after being repeatedly shot with a BB gun, being scalded with a hot liquid and being beaten on her head and body. They said Dixon's fetus also died.

And lest we think that this horrid incident was a crime of passion,

Police said the attacks lasted for four to eight weeks.

I agree with others that it's not these things we need to worry about so much, as everyone realizes how unacceptable this behavior is, and that most people, when it is explained what the Judge Rotenberg Center does, also feel that it is unacceptable. I also feel that what we really have to worry about are the things that fly under our radar, like all the things that happen in institutions daily that we never hear about, and how most of us never think twice about the "helping" paradigm in disability.

But still, when I read a story like this one, I still don't understand how people can do such things to each other.

All involved in this have been charged with first degree murder, as well as a variety of other charges.

Turning the Disability Tide

One of the complaints that I have often seen in regards to how autism is treated by society is that autism is approached from a medical oriented/disease based perspective, and not a social model.

In a recent JAMA (Journal of the American Medical Association, Vol. 299 No. 3, Jan. 23, 2008) journal there is a commentary written by Lisa Iezzoni, M.D. (Institute for Health Policy, Massachusetts General Hospital and Harvard Medical School, Boston) and Vicki Freedman, Ph.D. (Department of Health Systems and Policy, School of Public Health, University of Medicine and Dentistry of New Jersey, Newark). The article is entitled "Turning the Disability Tide: The Importance of Definitions". Unfortunately the entire article is only available online if you (or the institution you work for) has a subscription to JAMA. Requests for reprints can be made to the corresponding author, Dr. Iezzoni, at liezzoni@partners.org . JAMA can also be found at most public libraries.

Both Dr.'s Iezzoni and Freedman served on the Institute of Medicine's Committee on Disability in America, so one can presume (both from that affiliation as well as publication in JAMA) that their opinions are valued in the medical community on this subject.

The authors start with a brief overview of disability in America:

Forty million to 50 million individuals in the United States now live with potentially disabling conditions. According to the Institute of Medicine (IOM), this number will likely increase substantially in coming decades. Aging baby boomers will fuel much of this growth as this enormous cohort enters age ranges with the greatest disease and disability risks. Although rates of some serious limitations among elderly individuals have declined, sobering reports warn of higher rates of potentially impairing conditions among children and working-age adults. ...

...As have others, we argue that devising strategies to confront disability must first start by defining disability. Definitions implicitly connote goals, which in turn suggest potential solutions and targets for action. When it comes to preventing or deterring disability, this definition matters.

The authors then describe a brief history of disability definitions, detailing how by the early 1800's physicians had been designated as impartial arbiters of disability, and how increases in technology that allowed them to obtain objective data only solidified that role. Moving on, the article describes how:

Decades later, social changes upended medicalized notions of disability. Confluent forces, including the independent living movement, self-help initiatives, consumerism, deinstitutionalization, and civil rights campaigns for racial and ethnic minorities and women, catalyzed an incipient disability rights movement. By the 1970s, a new paradigm held that "problems lie not within the persons with disabilities but in the environment that fails to accommodate persons with disabilities and in the negative attitude of people without disabilities." Disability is "imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society." This new "social" model of disability diverged importantly from medical model tenets. "The social model . . . views the issue mainly as a socially created problem and basically as a matter of the full integration of individuals into society. Disability is not an attribute of an individual, but rather a complex collection of conditions, many of which are created by the social environment." The issue is therefore an attitudinal or ideological one requiring social change, which at the political level becomes a question of human rights.

Finally, the authors remark about the importance of the International Classification of Functioning, Disability and Health (ICF) which was published by the World Health Organization (WHO) initially in 1980, later revised in the 1990's, and unanimously approved by 190 member countries in 2001. The authors support the fact that the ICF integrates the medical and social models of disability.

Explicitly recognizing the role of external forces (physical, social, and attitudinal) in precipitating or mitigating disability represents one of the major contributions of the ICF. Equally noteworthy, the ICF introduced participation in daily and community life as an explicit component of health. This concept shifted the emphasis from strict prevention to maximizing functioning and well-being—perspectives consonant with public health goals in an aging society. By presenting disability as a continuum, the ICF emphasized the universality of disability and stressed its "relevan[ce] to the lives of all people to different degrees and at different times in their lives."

My opinion (as I've stated before) is that doctors, for the most part, are not the initiators of the oppression that the medical model places on those with disabilities. Rather, they reflect the predominant societal thinking at a particular time and place in history. This commentary, then, is important because it means that societal perceptions and goals are changing.

While I think it important that physicians lead when possible, I think that for the most part this commentary reflects an emerging trend within society, and not just the views of two isolated individuals. Getting definitions right will help society to fashion laws and policy that lead towards a more inclusive society. And that is something I can feel good about while I contemplate what the future holds for my autistic son.