Wednesday, February 20, 2013

Forced Sterilization of the Disabled



















EUGENICS

Eugenics is a despicable part of the history of the disabled community. This trend, which had its inception towards the late 1800’s, attempted to improve the quality of American citizens by implementing restrictive social policies that discouraged marriage and/or reproduction of individuals who were presumed to have inheritable undesirable traits. In other words, if you had, or accused of having, any type of disability, it was unlawful to marry or have children. Without even a shred of evidence, it was believed that all social ills, such as prostitution, promiscuity and even poverty, could be linked to people with cognitive disabilities.

During this movement, a tiered hierarchy of defectiveness developed in order to be able to categorize different levels of “feeblemindedness”. Idiots referred to individuals with a mental age of two years or less; imbeciles represented those with an arrested mentality of three to seven years; and morons referred to those attaining a mental age of no more than twelve years of age (Snyder & Mitchell 624-625). These words we throw around today as a general insult were actual medical terms in the late 1800’s, early 1900’s!

Using this pseudo-science as a rationale, prominent figures – doctors, scientists, lawyers and others – of the early twentieth century attempted to purify the American race by passing legislation legalizing compulsory sterilization of individuals believed to be "feeble-minded", epileptic, or otherwise “socially inadequate” individuals. Because this latter criterion was so broad the number of people who were at risk of falling into this category was almost infinite. Those who were institutionalized were almost guaranteed to be sterilized. Approximately 60,000 Americans were sterilized due to compulsory sterilization of institutionalized patients. Although it was a topic of interest throughout the world, the United States was among the less than a handful of countries most involved with this pseudo-science. Between 1907 and 1937 thirty-two states required sterilization of various citizens viewed as undesirable: the mentally ill or handicapped, those convicted of sexual, drug, or alcohol crimes and others viewed as "degenerate"(McCarrick & Coutts, 2010).

CARRIE BUCK 

Carrie's wedding photo after being deinstitutionalized

The most infamous case of eugenic sterilization was that of young Carrie Buck. Shortly after her birth, her mother was placed in an institution for the feebleminded. Carrie was raised by foster parents and attended school until the sixth grade. At 17, she became pregnant. Her foster parents committed her to an institution on the grounds of feeblemindedness and promiscuity. She gave birth to a daughter who was adopted by her foster parents. The child died at the age of eight due to complications resulting from the measles. Soon after being committed, Carrie was picked as the first patient to undergo forced sterilization after the enactment of the Eugenical Sterilization Act in Virginia. Officials claimed that Carrie and her mother shared the hereditary traits of feeblemindedness and promiscuity therefore Carrie was the "probable potential parent of socially inadequate offspring." (Lombardo) In Buck v. Bell (1927) the Supreme Court of the United States upheld the sterilization law, with Justice Holmes infamously proclaiming in his opinion “Three generations of imbeciles are enough.” Carrie Buck, along with her daughter, Vivian, was sterilized

But this “justice” was in actuality an abuse of government and law which by extension was abuse of “degenerate” citizens. Carrie was not promiscuous; she was raped by a nephew of her foster parents who sought to cover up the family embarrassment by institutionalizing her. At her trial, “experts” who had never even met with Carrie testified to her feeblemindedness and moral inadequacies (Lombardo). Not only was her defense attorney childhood friends with the prosecuting attorney, he was also a longtime supporter of sterilization and a founder of the colony to which she was committed (Lombardo). School report cards showed that Carrie had passed each year with very good marks and Vivian had made the honor roll (Pitzer, 2009). She and countless others were the victims of corrupt individuals who used their education and standing in society to abuse the judicial system in order to reach personal political ends.

END TO FORCED STERILIZATION

The Nazis cited the American eugenics ideology as their model behind their “ethnic cleansing”. The systematic murder of over 250,000 disabled people between 1939 and 1945 helped to finally dilute the fierce support for engineering a master human race here in the U.S. Fortunately, we have seen the end of compulsive sterilization albeit more than a little late for the more than 65,000 people in the United States alone who were forced to endure this procedure. Thank goodness, too, because if forced sterilization was still in effect, Myra Brown would never have a chance to become an honors student with the goal of attending the University of Cambridge in England.



Citations:

Lombardo, Paul. "Eugenic Sterilization Laws."Eugenics Archive. N.p., n.d. Web. 4 November

2010. <http://www.eugenicsarchive.org/html/eugenics/essay8text.html>.


McCarrick, Pat, and Mary Coutts. "Eugenics." Georgetown.edu. Bioethics Research Library at

The Joseph and Rose Kennedy Institute of Ethics, July 2010. Web. 3 November 2010.

<http://bioethics.georgetown.edu/publications/scopenotes/sn28.htm>.


Pitzer, Andrea. "U.S. eugenics legacy: Ruling on Buck sterilization still stands." USA Today (2009): n. pag. Web. 1 November 2010. <http://www.usatoday.com/news/health/

2009-06-23-eugenics-carrie-buck_N.htm>.


Snyder, Sharon, and David Mitchell. "Eugenics."Encyclopedia of Disability. 2. Thousand Oaks,

CA: Sage Publications, 2006. Print.




Thursday, February 7, 2013

Another not-so-great doctor visit


Sigh..
In January of 2012 I sat in the ER room, waiting for the doctor to come in to see my son, again, and tell me why his oxygen level was low enough that he needed an oxygen mask to breathe. I held my baby as he slept, looking down at his sweet 3 month old face and wondered what could be the possible cause. The tears wouldn’t stop and the ones I didn’t catch in time dropped on his hospital gown. The quiet tears turned to very deep sobs. I prayed to God that it wasn’t something permanent. “Please, God, PLEASE, whatever it is, don’t let it be something permanent!” I BEGGED. Just sitting there, rocking him, begging out loud, praying and sobbing, that whatever was causing the repeated ER visits and now the oxygen mask would be just a blip in his timeline.

But it wasn’t. First we discovered he had PCP which is a very serious pneumonia, very rarely seen in babies, more often seen in patients with compromised immune systems caused by HIV. But why did a little cold progress into such a serious illness? After a series of blood tests, X-rays, MRI’s, scopes and biopsies, Bruton’s was the reason. And it is very permanent.

Yesterday we go for a regular follow-up at the immunologist’s office and I leave there with the doctors concerned that he has a speech delay. He is 16 months old and does not say  even one word. He makes “mama” and “dada” sounds but they are not directed at us. He doesn’t call us by our names. And he should be. I have a call in to early intervention for a speech evaluation but I am praying that it is nothing permanent. Again. I pray that it is just because his older sister is non-verbal so he is mimicking the only other kid that he’s really around right now and his words will soon be exploding from his mouth. 

There are so many layers to this traumatic doctor’s visit. Going through yet another thing with my son; having two kids with special needs; looking forward to the Italy I missed out on with my first kid and landing in Holland again. I can’t even form coherent phrases to everything in my brain right now.

Please, please, please don’t let this be permanent.
I want to hear “mommy” from one of my babies.

Monday, February 4, 2013

Is inclusion a good thing?

INSERTION VS. INCLUSION
           Inclusion is a murky word. Proponents of inclusion want to have classrooms, social activities and workplaces where there are disabled and non-disabled individuals getting together, commiserating, cooperating…It scares the crap out of me. Why? Because too many people believe that insertion = inclusion and frankly my friends, it does not.
Let us ask ourselves: have the disabled been integrated into society since the “purging” of the state hospitals (deinstitutionalization) began in the 1970’s? By definition, inclusion is “the addition of somebody or something to a group or mixture” (Encarta dictionary). However, inclusion can be nothing more than a simple insertion of an individual into a setting where they are not truly accepted but are merely tolerated. A person can be tolerated without being recognized. Think of that kid that sits alone at the lunch table, not being picked on but not being played with, either. Tolerated but not recognized.
They can be admitted without being incorporated. A student with Down syndrome has a right to be integrated into a non-specialized public school but doesn’t his lack of friends or any after-school programs geared towards his socialization needs and interests prove that inclusion does not equal acceptance? In this case, we are not just talking about his acceptance by his peers; the teachers, administrators, coaches, mentors and the school system as a whole is in question.
Now, “federal officials are telling school districts thatthey must offer students with disabilities equal access to school sports.” Schools will be required to make reasonable accommodations to include students with disabilities. If doing so changes the nature of the game drastically then new programs that have “comparable standing as mainstream programs” must be created.

FORCED INSERTION
This worries me some. There are some unintended consequences I can foresee here. Forcing teachers and coaches to make a spot for a kid with a disability in their “normal” routine they’ve been accustomed to can be traumatic for all involved: the teacher/coach, their current students, and the kid being inserted into the team.
Once, when I was working as a hair designer in my previous life, before inclusion went from being a notion to an action that is actively pursued, a client who was a middle school teacher was venting to her colorist how she was being forced to have special needs kids in her classroom. She commented on how difficult it made her life now that she had to develop a lesson plan for a kid “like that” and still have to be able to teach the “normal” kids. The venting went on for a while and I eavesdropped the whole time. This clearly shows that inclusion must be done in a thoughtful, meaningful way. We can’t just tell a school, “You have four kids with physical disabilities and none of them are on sports teams. Stick them in somewhere by next week.” Can you imagine the resentment towards those four kids felt by the coaches and the other students because of a forced insertion? How will that resentment play out? Ignoring them? Dirty looks? Hurtful words? Physical harm? I know that not all teachers, coaches & students will feel this way but is this a risk you’re willing to take with your kid? Not I! And yes, I know, nobody is saying that schools will have a week’s time to make the necessary changes. In fact, there’s no deadline for schools to comply which seems like a built-in loophole to me. But there is ALWAYS resistance when institutions that have not complied with ADA regulations for the entire time they’ve been in existence is told that they must make changes. Just take a look at the whole pool-lift debacle.
Another very real concern I foresee is: how can instructors & teachers who have never had any experience with special needs students be expected to include these students without any formal training?? Not everybody can be a special needs instructor. Just because someone is “good with kids” and gets good results in their classroom or on the field does not automatically ensure that they will know what to do when they’re presented with a whole new set of….problems, shall we say? A kid with autism who self-stims, for example, can be hard to deal with when you’re used to things like Tommy taking Sandy’s pencil. Forcing a teacher to take on special needs kids because of an “inclusion doctrine” with little or no training is detrimental to the students and teacher. I have not read anything, anywhere, which talks about appropriate training for these instructors who now have to figure out ways to truly include new athletes.
And of course we will have those ridiculous comments about how enforcing these regulations will only serve to raise taxes and school districts will become even tighter with their budgets. Oh, and now, regular programs will suffer because they will have to be cut in order to funnel cash to creating new programs for those other kids. Do you know what Title IX is? It made huge positive changes for women in sports. It demanded equal sports programs for women as for men and it led to a large increase of female participation in sports. But of course, there were those idiots who found a way to make it a negative by saying men’s sports had to be cut because of Title IX. AND??? Does that mean that women shouldn’t have the same opportunities because now the men have slightly less? Why should it be any different for people who have disabilities?

MAKING CHANGES
I started off by saying that inclusion scares the crap out of me but I do believe it is necessary and vital to a healthy society, not only for those who are disabled but also for the walkers, talkers & others who are not disabled. Access to school athletics, whether at the elementary, high school or collegiate level is A RIGHT, not a privilege! Too many times people with disabilities are seen as pity-cases. But guess what, people? There are actually people with disabilities who can do things society believes they cannot. Have you heard of Mitch Ryan? Yeah.
 So what is the answer? How can we stamp out stigmas and eradicate discrimination? We can protest and march against the unfair and unequal treatment of those with disabilities. However, to date, research suggests that protests do not promote positive attitudes or increase knowledge about disabilities (Westerholm, et al., 1506).
Education is the main conduit to a better understanding of the life of a person who happens to have a disability. The sharing of correct information will assist in the reduction of stigmas attached to individuals who are physically, mentally and developmentally disabled. In the case of mental illness, for example, after-care information is of particular importance because studies have shown that people who only receive information regarding psychological symptoms increased their negative attitudes about the illness (Westerholm, et al., 1506).
There needs to be an attitudinal shift when considering disability rights. Rather than charity it is imperative there be a focus on civil rights; rather than pity, a belief in a wide range of human possibilities is crucial. A disastrous consequence to the stigmatization of the disabled population is the tendency for the disabled to avoid contact with the able-bodied and, conversely, the able-bodied to ostracize the disabled. I have a firm belief that the best approach to reducing stigmatization and discrimination is to increase meaningful personal contact between folks who have disabilities and those who do not, i.e. full inclusion with appropriate training, not just insertion. For the disabled, this dynamic can help foster a sense of trust towards the non-disabled which may increase their willingness to involve themselves with social interactions they may have previously been resistant to. The development of this dynamic can provide for those who are not disabled important information regarding the positive and negative impacts of mainstream society on those who live with disabilities.
Imagine a world where people with disabilities aren’t fearful of the non-disabled and the non-disabled are not uncomfortable around people who are disabled. That’s the world that I want to live in.

THINK ABOUT THIS
Reverend Martin Luther King, Jr. was an American dedicated to the realization of the equal rights promised to all African-Americans in this country. In his famous speech he described the state of being of African-Americans a century after they were to have been emancipated:

“One hundred years later, the Negro lives on a lonely island of poverty in the midst of a vast ocean of material prosperity. One hundred years later, the Negro is still languished in the corners of American society and finds himself an exile in his own land.”

What he proclaimed was a concept that should have been obvious without being stated – that every person has the right to be treated equally and fairly.   We can see very strong similarities between the tragedies that the African-Americans and the disabled citizens of this country have been forced to endure. Must we wait one hundred years after the beginning of deinstitutionalization before the civil rights of the disabled are truly recognized?


Citation:
Westerholm, Robert, Laura Radak, Christopher Keys, and David Henry. "Stigma." Encyclopedia
        of Disability. 4. Thousand Oaks, CA: Sage Publications, 2006. Print.

Edited for broken link