Inventing and Remaking Intellectual Disability

Inventing and Remaking Intellectual Disability

Written for DSAB 620

Reaction Paper 5

Keith Murfee-DeConcini

Every word or label has a history. What the past considered mental retardation or feeblemindedness, we now refer to as intellectual disability. Asylums, almshouses, institutions or state schools had one thing in common: containment. All their pasts lead to one conclusion: failure. We are a long time from the humble beginnings of the asylum and what was considered humane treatment of patients by early medical superintendents, like Thomas Kirkbride.

Out of the early 1950s came a new type of literature: the parent confessional. This genre finally put a “face” to those parents struggling with raising a child with special needs. Those “beset” by nature to raise a child with “intellectual challenges” touched the common person. Pearl S. Buck wrote The Child Who Never Grew in 1950 about her daughter Carol and Buck’s struggles to raise her on her own. (Buck 1950) Pearl eventually put her daughter in the Vineland Training School in 1929, long before the book’s publication. (Buck 1950) (Trent 2017) Other books, such as John P. Franks’ My Son’s Story, were published soon after.

The genre also impacted the famous Dale Evans Rogers (wife of Roy Rogers), who published in 1953, Angel Unware about Evans and Rogers’ only biological daughter, named Robin. Robin lived only two years and Dale wrote the book from Robin’s “perspective,” as an angel in Heaven. In the introduction to the book, Evans Rogers wrote that, “Our baby came into the world with an appalling handicap, as you will discover when you read her story. I believe with all my heart that God sent her on a two-year mission to our household, to strengthen us spiritually and to draw us closer together in the knowledge and love and fellowship of God.” (D. Rogers 1953) Rogers herself was against institutionalization for children. “Sent from paradise the Rogers suggested, all special children should be kept at home. Angels have a purpose that is lost in an institution.” (Trent 2017)

The most famous case of intellectual disability in the time period was Rosemary Kennedy, sister of President John F. Kennedy who received a lobotomy in 1941. While the Kennedys had hoped that the lobotomy would cure Rosemary of her “mental struggles” ---the opposite happened. The Kennedys disclosed their family secret in 1962, after they had Rosemary privately institutionalized. (Trent 2017)

Although asylums and state schools grew out of different purposes, one of curing those afflicted with mental problems and the other of teaching children considered to be feebleminded, over time, they became the same. Some of the most infamous are Willowbrook, Pennhurst and Letchworth Village. Willowbrook closed in 1987 and eventually some of the grounds and buildings were merged into the College of Staten Island. (Gunderman 2017) Pennhurst, dubbed “the shame of Pennsylvania,” (Blazeski 2017) is currently privately owned and operated as a haunted asylum, a tourist attraction. A group called the Pennhurst Memorial & Preservation Alliance, however,  is trying to turn the grounds into a historical museum. The fate of where Letchworth Village once stood is still being decided. (Goldblatt 2018)

Ironically, the shock that eventually led to the closures of the above mentioned asylums and state schools and many more like them all over the country; a similar shock of even having a disabled child propelled parents to put their children away to be looked after with their own kind. A very common refrain of parents with special needs children at that time was “Someday, we’ll put him [or her] in an institution.” (Trent 2017)    

This was because during that time Americans read two conflicting ideas. One was that, “having a retarded child was nothing to be ashamed of and that heredity played only a small part.” The other was that, “Although Americans read that many institutions were snake pits, retarded people in them were forgotten children, and neglect had reached the point of euthanasia, they also read that placing a child in an institution as Buck and the Franks had done was not a reprehensible thing to do.” (Trent 2017)

However over time, the problem became that, “The mentally retarded were frequently schooled with the mentally ill, the physically disabled, and juvenile delinquents. In other words, special education classes and schools, when they existed at all, had become the dumping grounds for many ‘problem children.’” (Trent 2017) Just like with the earlier asylums, this all-inclusive dumping ground made it very hard to tell who really belonged there versus who did not.

Cases like Mayo Buckner illustrate another point. Born in 1890, Buckner was labeled as a “medium grade imbecile” for little more than being shy and having taken a liking to rolling his eyes. He spent several years at the Iowa Home for Feeble-Minded Children, where he had been since eighth birthday. It wasn’t until 1957 when the institution had Buckner’s IQ tested and discovered that his IQ was 120! Could more people in these schools actually be smarter than they first appeared to be? The answer is yes, as the article reporting on Buckner’s case made clear. His case was “only one of more than fifty inmates at the institution whose IQs were normal. Indeed, several inmates had intelligence levels higher than many of the institution’s employees.” The article went on to claim that, “among the 130,000 inmates in the nation’s ninety public institutions at least 5,000 were not retarded.” (Wallace 1958) (Trent 2017)

One might assume from hearing my slight speech impediment, or the fact that I am sometimes shy and quiet, that I am either intellectual disabled, mildly autistic or both. Regardless, that would be way off base. This is the thing about assumptions, especially medicalized assumptions and treating them as if they are holy grails of insights. More often than not, they are not true, especially when based on snap assumptions.

False assumptions were prevalent in the beginnings of both asylums and state schools. While the medicalized assumptions and diagnoses helped some, they incorrectly led to the confinement of others. These assumptions stoked public fear and led to the creation of Willowbrook, Pennhurst and Letchworth Village among others. While these institutions started out with noble intentions, they eventually led to rampant abuse, as chapter 7 entitled “The Remaking of Intellectual Disability” in James Trent’s book Inventing the Feeble Mind alludes to.

I ask this question a lot: have we really learned from the terrors of Willowbrook, Pennhurst and Letchworth Village? If we have, then why don’t we teach the sordid histories of these places in order to make sure that they never happen again? Why have we become so accustomed to sweeping heinous acts from the history books? What help does ignoring history bring? As the old saying goes: Those who do not heed history are doomed to repeat it.

 

 

References:

Blazeski, Goran. 2017. “The Shame of Pennsylvania:” Inside the tragic and frightening Pennhurst State School and Hospital.” The Vintage News. (August 23^rd, 2017)

Buck, Pearl S. 1950. The Child Who Never Grew. New York: John Day.

Frank, John P. 1952. My Son’s Story. New York: Alfred A. Knopf.

Goldblatt, Rochel Leah. 2018. “A look at Letchworth Village: Past, present and future.” Rockland/Westchester Journal News. (October 4, 2018

Gunderman, Dan. 2017. “Revisiting the atrocities that once consumed the halls of Willowbrook State School in Staten Island.” New York Daily News. (April 09, 2017)

Pennhurst Memorial & Preservation Alliance (PMPA) 2010. “A Statement Regarding the "Pennhurst Haunted Asylum" (http://www.preservepennhurst.org/default.aspx?pg=142)

Rogers, Dale Evans. 1953. Angel Unaware. Westwood, NJ: Revell.

Rothman, David J. 1990. The Discovery of the Asylum (Revised Edition). New Brunswick: Aldine Transaction.  

Tarabay, Jamie. 2010. “Haunted House Has Painful Past As Asylum.” NPR. (October 29^th, 2010)

Trent, James W. 2017 “Remaking of Intellectual Disability” Chap 7 in Inventing the Feeble Mind: A History of Intellectual Disability in the United States, by James W. Trent, 216-258. New York: Oxford University   

Wallace, Robert. 1958. “A Lifetime Thrown Away by a Mistake 59 Years Ago: Mental Homes Hold Thousands Like Mayo Buckner.” Life 44(2 4 March):120-122, 125-26,129,133-134,136.   

   

 

 

 

               

Enforcing the Cursed Construct of Conceptualizing Normalcy

Enforcing the Cursed Construct of Conceptualizing Normalcy

Written for DSAB 620

Reaction Paper 4

Keith Murfee-DeConcini

In his 1995 book Enforcing Normalcy: Disability, Deafness, and the Body, disability scholar Lennard Davis talks extensively about the ongoing struggle of the deaf community to be recognized as an oppressed social class. He links not only the deaf community but also the disabled community as a whole into “the familiar triad of race, class and gender.” Before Davis explores the history of deaf people and their culture, he introduces us, in Chapter 2 “Constructing Normalcy,” to how the term “normal” came to be used. Oddly enough, the concept of normalcy only entered the English language around the middle of the nineteenth century. (p. 24) It was a term used to measure the most common human traits and behaviors and labeling them normal. Being normal or average was considered a good thing.

This was in contrast to the ideals expressed by classical Greek paintings of beauty, even though the conceptualization of what it means to be normal were heavily influenced by these ideals.  These paintings used the beautiful subject as an ideal to which one aspires. What the painting didn’t show is that this picture of beauty, perchance a woman, is perfection, with each part (i.e. face, neck, hips etc.…) being borrowed from different women. Thus, the ideal image of woman is actually made of several women, something that no one can actually attain.  (p. 25)

The ideal form is unattainable by imperfect beings. At one end, there is the ideal body and at the other end, the grotesque. As Davis puts it, “By contrast, the grotesque as a visual form was inversely related to the concept of the ideal and its corollary that all bodies are in some sense disabled. In that mode, the grotesque is a signifier of the people, of common life.” (p. 25) The common or normal framework was born out of the creation of statistics in 1749. The fascination of working with statistics captured the American public during the eugenics movement of the early twentieth century.

The concept of a norm differs from the ideal by implying “that the majority of the population must or should somehow be part of the norm.” (p. 29) With the rise of norms, a corollary concept was created to classify those who fall outside the bell shaped curve of what is considered normal as the deviants. People with disabilities were one of the groups who fit into the classification of deviant, defective or more plainly, undesirable. As Davis tells us, “…eugenics became obsessed with the elimination of ‘defectives,’ a category which included the ‘feebleminded,’ the deaf, the blind, the physically defective, and so on.” (p. 31)

In 1883, Alexander Graham Bell, who was the creator of the telephone, stoked eugenical fear against deaf people by proclaiming in his book (Memoir upon the Formation of a Deaf Variety of the Human Race) “a tendency among deaf-mutes to select deaf-mutes as their partners in marriage” (1969), which he warned could lead to a dire consequence:  the creation of a race of deaf people. (p. 32) This proclamation and others like it inspired great fear in the public mindset of not only deaf people but all who were known to be or suspected to be “deviant.” As they were not on the bell shaped curve of “normalcy,” they must be condemned, at the very least. It may seem unimaginable but the lingering effects of this fear still exist today and affect people with disabilities often on a daily basis.

I confront this every day. Since I have a slight speech impediment and a higher pitched voice, people on the phone constantly mistake me for a woman. While this is not the worst thing in the world, it can be pretty annoying, especially having to contend with this every day. After all what kind of parent would name a girl, Keith? The answer is unsurprisingly obvious: no one!

I live in New York City, a city of over 8 million people of seemingly every background and every accent possible. Yet when people hear me speak for the first time, they either dumb me down as if I’m still a child or they lock themselves up with fear. Some might wonder if I’m drunk or on drugs. Let me tell you, if I was drunk or on drugs, it would have to be all the time, which means I would most likely be dead in six months. Again, these are small problems to deal with in a vast world of problems; the daily occurrence of said small problems, however, can add up pretty fast.

While we as a society have moved past the eugenics movement---or so we would like to believe---the lingering fear from that era still remains in the forefront of the human psyche. The fear of the “deviant” came alive in that era and it still lingers today. So have we as a society really moved past the eugenics movement after all? One thing is certain, the effects of social fear that even associating with someone who is considered “deviant” might make oneself deviant, as if deviance is something one can catch, continues to corrupt the diversity of the human experience. We owe that corruption in a large part to the concept of normalcy.  

References:

Bell, Alexander Graham. 1969. Memoir upon the Formation of a Deaf Variety of the Human Race. Washington, DC: Alexander Graham Bell Association for the Deaf.

Davis, Lennard J. 1995. Chapter 2 “Constructing Normalcy” In Enforcing Normalcy: Disability, Deafness, and the Body. New York: Verso, Imprint of New Leaf Books.