I just wrote a review of a book called Moloka'i, which you can find at my Historical Fiction - Reviews blog, http://teribookchat.blogspot.com. If you read the review, you'll probably notice that I don't say that much about the book, but do spend a lot of time talking about my interest in leprosy -- now called Hansen's Disease.
While writing the review, I began to realize a lot of different thoughts were resonating about the novel, and its historically accurate (for the most part, I believe) depiction of the treatment of persons with Hansen's Disease from the 1890's into the 1960's. What struck me is that how the attitudes of the public and the public health officials evolved over time is in keeping with the overall evolution of society's attitudes toward people with disabilities in general.
The Moral Model of Disability
[I should say here, for those readers unfamiliar with the study of the history of persons with disabilities, these "models" of disability are not my idea or creation, but are the work of historians such as Paul Longmore, Ph.D. I summarize them here, however briefly.]
The "moral model" essentially captures and describes that period of time (which some might say we've never entirely left) in which disabilities were seen as a punishment from God for the evils or misdeeds of either the person who had the disability, or the family into which such a person was born.
Corollaries of this would be merely that the person in the family with a disability was an object of shame for the family and was to be hidden away and not mentioned. The degree of "badness" associated with the incidence of disability depends on the culture, the predominant religion, and the era.
Followed by...The Medical Model
Under the medical model, people with disabilities weren't necessarily embodiments of evil in the world, but more akin to broken toys -- mechanical problems with medical solutions. Here, a person with a disability isn't really treated as a person in a holistic sense -- rather they are a problem to be solved.
One cultural phenomenon that seems to go along with the medical model is eugenics, including involuntary sterilizations. Nazi Germany has a well researched history of this, followed quickly by "euthanasia" and extermination. In By Trust Betrayed, Hugh Gallagher discusses the fact that people with disabilities were among the first to be exterminated in a systematic way in Germany under Hitler.
Born in 1957, I believe I arrived during the "medical model" period. Doctors did not know what to do with me; they couldn't fix me, they couldn't really treat my skin condition except to try to make it look more "normal" -- which is impossible. They focused on pseudo-normality -- it is better to walk in pain and with difficulty than to use a wheelchair, for example. Many of the extremely time-intensive cosmetic treatments, which I rejected pretty early on, made my skin look different, but not normal. In addition to taking up 4-6 hours a day, the treatments if performed as prescribed made my skin so delicate and sensitive that most activities -- dressing, getting in a car, playing -- resulted in injury.
But the focus was on fixing the broken toy -- me -- not figuring out how to get the most function and the most life out of what was working.
This experience is not by any stretch, unique to me. I saw children with cerebral palsy struggle to walk with heavy braces and crutches, only to be given wheelchairs in their early 20's. I had a good friend in special ed who had lost her legs in a house fire. She completely rejected her prosthesis, and used a wheelchair instead, and scooted along the ground on her hands much faster than I could walk.
And Now...The "Cultural Model" or "Civil Rights Model"
Today, we have supposedly evolved past the moral and medical models of disability, and are into the era of the cultural or civil rights model of disability. I don't know that there is universal agreement about how to define the era we presently inhabit.
I reject the moniker of "cultural" model as being unworkable. The non-disabled public does not embrace disability culture as another culture to be recognized, like African or Hispanic culture.
The hallmarks of disability culture that are alive and flourishing, I think, are to be found on the Discovery Health Channel -- or the Freak Channel, as I call it. Shows like "Medical Incredible" and "Diagnosis Unknown" almost invariably feature people with disabilities that have an element to them that makes the person look freakish. [Dictionary.com defines freak as "a person or animal that is markedly unusual or deformed" -- I'm not just using the word "freak" to be inflammatory.]
Further, if a subject of one of these shows is a person with a marked and noticeable disability who is thriving, successful, etc., they are portrayed as a hero. I postulate that it should not be a mark of heroism to adapt to one's circumstances and get on with life. This thought can be modified, however, in light of the additional obstacles that society throws up in the way of that disabled person who is merely trying to keep on keepin' on. That, I think, takes an extra measure of guts sometimes.
I'll Take The Civil Rights Model
Born in the 1970's, with the Independent Living Movement, the Education for All Handicapped Children Act and Section 504 of the Rehabilitation Act of 1973, all the way to the coming of age in 1990 with the Americans With Disabilities Act, American society is saying that persons with disabilities are entitled to the same civil rights as citizens who are not [presently] disabled.
What flows from that are job opportunities, equal public education and accessible public transit. The reality is that we are still in our infancy, crawling toward these goals. The "Disability Rights Movement" is, in my opinion, where the "Civil Rights Movement" was in the early 1960's. And no one is saying those goals have been comfortably achieved.
Meanwhile, Back on Moloka'i
My point was -- starting in the mid 1800's, people who were diagnosed with leprosy were exiled to Moloka'i. Sometimes they just threw them in the water in sight of shore and the lucky ones swam in without getting attacked by sharks. When Father Damian went there in the 1870's, there was nothing but the barest shelter; families would bring rudimentary supplies and leave them at the beach.
By the time the novel opens, there is a hospital and a nascent public health system. The shame and terror of having a family member sent to Moloka'i were in full force.
Even after the development of drugs stopped the progression of the disease, as well as ceased it from being actively contagious, people with Hansen's Disease were shunned and isolated, and quarantined.
For many, by the time the quarantine was lifted, many residents chose to stay on Moloka'i. Today, as few as 50 remain.