The Estrangement Factor of Mild Cerebral Palsy
By Keith R. Murfee-DeConcini
DSAB 601: Psychosocial, Cultural and Political Aspects of Disability, Spring 2014
In 1952, the official journal of the American Academy of Pediatrics published an article entitled Hypotonic Cerebral Palsy in Mental Defectives. (Yannet & Horton, 1952) Back then, the assumption of cerebral palsy as a type of mental disorder was quite common. While there have been numerous medical advances since then, little has been done (in this author’s opinion) to correct this outdated and misguided belief. The root effect of that early view is vast. It stems from the assumption that any disorder having to do with the brain in the developmental stage of new life must affect the intelligence of that person. Cerebral palsy (CP) by itself does not impact intelligence but rather, it affects the motor control (movement) of that individual. It is an umbrella term that refers to a group of motor disorders that are permanent but are non-progressive, lasting throughout a person’s lifetime. (Miller & Bachrach, 1995, 2006)
According to the Cerebral Palsy Alliance, “Cerebral palsy is the most common physical disability in childhood… Worldwide, the incidence of cerebral palsy is 1 in 500 births. There are currently 17 million people in the world who have cerebral palsy.” (Cerebral Palsy Alliance, 2014) At birth, the brain determines the muscle tone someone will have and if the brain sustains an injury, then that determination is interrupted and/or changed. (Miller & Bachrach, 1995, 2006)
The medical history of cerebral palsy begins in the late 1830s with Dr. William John Little. He wrote about the condition in 1853 and then wrote the first definition of it in 1861. Spastic cerebral palsy, at that time the only form studied, was referred to as “Little’s Disease”. The term “cerebral palsy” wasn’t used until 1889 when Sir William Osler’s book, The Cerebral Palsies of Children, was published. In Osler’s book, many other forms of the impairment were explored. (Stern, 2014)
My name is Keith R. Murfee-DeConcini and I was born at New York Hospital on October 30, 1984, weighing two pounds, eleven ounces. I was born three months premature and nearly died the first weekend of that year. A few weeks before that fateful time, I pulled out my breathing tube from my nose and proceeded to breathe on my own for eight hours, much to the amazement of the doctors, nurses, and everyone else in the Neonatal Intensive Care Unit (NICU).
I spent ninety-nine days in intensive care, living in an incubator which my mother, Elizabeth Murfee, used to bathe me in classical music by placing a tiny tape recorder inside. She was at my side every day that I was in NICU, sometimes staying as much as 20 hours a day. At my naming ceremony held in the chapel at New York Hospital the day I was released, one of the doctors noted that if I had stayed in NICU 100 days, they were going to name me an honorary doctor.
At 18 months of age, at the Preemie Clinic at New York Hospital, I was diagnosed with mild to moderate cerebral palsy, hypotonia type, hemiplegia. Hypotonia means decreased or floppy muscle tone, while hemiplegia means that one complete side (arm and leg) is affected by cerebral palsy. In my case, mainly the right side is affected.
The most common type of cerebral palsy is called “spastic”, which is the opposite of hypotonia. Instead of loose and floppy, spasticity makes the muscles affected stiff and tight; movements, when possible, are often jerky. “When people without cerebral palsy perform a movement, some groups of muscles turn on and some groups of muscles turn off. In people with spastic cerebral palsy, both groups of muscles may become turned on at the same time. In some instances the wrong muscle groups may turn on. This type of cerebral palsy makes movement difficult or even impossible.” (Cerebral Palsy Alliance, 2014) Spasticity affects seventy to eighty percent of people with cerebral palsy. (Cerebral Palsy Alliance, 2014) It is so common that it is thought of as the “stock image” of cerebral palsy. Many people who have it must use some form of mobility aid, such as a wheelchair or walker.
The public is often misinformed about cerebral palsy, relying on flawed representation and second hand knowledge. All this leads to the common belief that the most severe cases of cerebral palsy are in fact representative of all cases. The most notorious example of this is the assumption that cerebral palsy causes mental retardation (or what is now referred to as an intellectual disability). While some people with severe cases do have that, most people with cerebral palsy have normal (or above normal) intelligence. To the misinformed though, any injury to the brain that is severe enough to impact motor movement must also impact other functions to the same extent – and that is not usually true.
There are a number of different medical conditions that are often associated with cerebral palsy, and an intellectual disability is only one of them. Some of these common conditions include but are not limited to: learning disabilities, attention deficit-hyperactivity disorder (ADHD), scoliosis, and dysarthria, which is commonly referred to as a speech impediment. (Miller & Bachrach, 1995, 2006)
The only way anyone who is not a doctor or a disability specialist would guess that I have cerebral palsy is the fact that I have dysarthria. What the world refers to as a speech impediment, I refer to as an accent. Unfortunately, an assumption that seems to be quite alarmingly common is that if one speaks differently in a way that few people are familiar with, then one must not be right in the head and therefore “retarded”. The fact that I am half Irish does not help matters; upon first meeting me, a lot of people either think I am drunk or retarded or both. Ironically and paradoxically in my case, alcohol seems to lessen my cerebral palsy, thereby concealing the slurred tone of my speech, giving me for a short period of time a more normal voice and clearer speech.
Aside from my speech impediment, cerebral palsy does have a profound effect on me physically; these effects are just invisible to most people. My fine motor skills are very much impacted, making everything I do, or try to do, with my right hand more difficult. Because of motor planning issues (which for most people occur automatically or unconsciously), all physical activities require much more effort. That means my stamina is affected, too. Learning disabilities coupled with ADD play a huge role in making academic pursuits more arduous and time consuming. Nevertheless, I am very “high-functioning” for someone with my degree and number of disabilities.
The hardest part of having cerebral palsy is not in having it per se, but rather how people react to it. The stigma of having cerebral palsy (much like other disabilities) is strong and harsh. People fear what they do not understand. This is especially true for those with disabilities who are “high functioning”. Since they do not fit into the mold of what the public considers typical disabilities, they are easy targets for abuse and neglect. According to a study done by the Bureau of Justice Statistics in 2012, the crimes against people with disabilities were nearly triple those against people without disabilities. (Harrell, 2014)
I am reminded constantly each day through other people’s flawed perception of my cerebral palsy that having a mild case of what can be a very debilitating disability is both a gift and a curse. It is a gift in that I am so “high functioning,” which allows me to use my experiences to educate others and speak up for those who are often overlooked or pitied for their “plight.” The curse is feeling trapped between two worlds: one for those with disabilities and one for those who do not have disabilities (yet). I do not fit into either of them fully, so there is a feeling of lingering estrangement.
This feeling of estrangement has been building and it has become more noticeable over the years. People will mistake tension in my facial muscles as signs of anger and unfriendliness. When I bring up the issue of personal stigma, people will often tell me that it is only in my head and that I need to be more comfortable with myself so that I stop projecting my insecurities onto others. Basically it is my problem and I should be the one to fix it. This brings to mind the medical model of disability, which labels the disability as the problem of the person who has that disability, and it is a problem that must be addressed and fixed. This model has been around for a very long time and although useful in some ways, like developing new therapies to aid in adaptation to disability[1], nonetheless, it is often steeped in unbridled ignorance about the value of people with disabilities. One of the major consequences of embracing this model is that it helps foster “nightmarish images of disability as a threat to social stability.” (Snyder & Mitchell, 2001)
The social model of disability, however, focuses the issue of disability as being caused by environmental, social and attitudinal barriers. According to the Michigan Disability Rights Coalition, the social model “is best summarized in the definition of disability from the Disabled Peoples’ International: ‘the loss or limitation of opportunities to take part in the normal life of the community on an equal level with others, due to physical or social barriers’”. (Michigan Disability Rights Coalition, 2014) Denying that there are physical and social barriers in society that justify discrimination against people with disabilities is the same as trying to deny that racism and sexism exist. It is these social barriers that have caused the most difficulties for me, excluding me from many of the normal experiences of youth and young adulthood.
What has had a significant impact on allowing me to become so “high-functioning” despite multiple disabilities, are the various interventions that were begun right after my birth. These interventions included:
Neurodevelopmental therapy, which is an advanced type of physical therapy, that I received two to three times a week beginning six weeks after my release from NICU and continuing for two years. Studies have shown that premature infants who receive this therapy before age two develop more normally. (Murfee, 2014)
Early intervention pre-school and therapy, which was done at the then newly- developed, early intervention pre-school that was mainstreamed as a part of Bank Street Family Center. I went there from the time I was two until I entered kindergarten. While at Bank Street, I received various therapies, such as physical, occupational and speech, twice a week. I also benefitted from the assistance of a special education teacher daily. Studies have shown that early intervention of this type has been found to make a significant difference in the development of premature infants. (Murfee, 2014)
Calf-ankle orthotics were used to address issues concerning my gait and stability. NY Hospital’s Preemie Clinic collaborated with an esteemed podiatrist, Dr. Paul Jordan, in making custom-made, calf-ankle orthotics- which looked like high-tech braces. Throughout the years, these were cut down as I gained more stability in movement, finally to only shoe inserts. These orthotics made by Dr. Jordan were essential in giving me stability and the ability to walk. (Murfee, 2014)
Surgery for esotropia, which was done before age two to correct the strayed eye movement in my right eye caused by the hypotonia. Studies have shown that if done before age two, the person has a better chance of developing normal vision, including depth perception and the normal use of both eyes. (Murfee, 2014)
The Tallal Method for reading, also known as Fast ForWord, was a summer program I took part in after my fifth-grade year. Developed by a Stanford University scientist named Dr. Paula Tallal, this program was aimed at improving the reading skills of children with learning disabilities and auditory processing issues. This eight-week course, using computers and extremely slowed-down speech sounds, improved my reading scores by a year and a half. (Murfee, 2014)
Physical therapy, occupational therapy and speech therapy was continued on a private basis from my early school years through high school. Then recently, as an adult, the main focus became speech therapy. (Murfee, 2014)
Without these inventions, my level of functioning would not be where it is today. I refer to my cerebral palsy as “CP Lite,” due to the fact that most of the complexities which make up cerebral palsy have not affected me nor will they, as the disorder is non-progressive. There is no way for a person to catch cerebral palsy; it either happens at birth, shortly thereafter, or not at all.
As mentioned above, being “high functioning” while living with disabilities often makes someone an easy target for abuse, especially in terms of social stigma. As one person with a disability says: “This is a personal thing, but my biggest problem with stereotypes is that the world out there thinks that a disabled person is a person in a wheelchair – or a deaf or a blind person that you can see. That is the worst kind of stereotyping there is.” (McDougall, 2006) I could not agree more.
However, there is another social stereotype that is equally damaging and that is the “super-crip”. This stereotype elevates a person with disabilities as a hero archetype who should be “outrageously admired for their ‘courage’ and determination”. This stems from the belief that life with a disability must necessarily be horrific and unsatisfying, and as such, we must admire persons with disabilities for being able to live ‘the way they do.’” (Martiniello, 2009)
This belief, which can seem and feel good-natured at first, is a paradoxical form of achievement which does little more than place persons with disabilities on a pedestal, which is “another way to denote this social group as ‘other.’” (Martiniello, 2009) It also sets an expectation from society of people with disabilities that they should be like the super-crip and if they are not, then they are obviously not trying hard enough.
This expectation is unfairly placed on people with disabilities and is very damaging to self-esteem. Even if there is no “super-crip of the moment,” the expectation can often be placed on persons with disabilities who are “high functioning” because obviously if they are “high functioning,” they are not truly disabled or they are faking it. One of my personal favorites is “get over it already.” Disabilities are not fears someone can get over; they can and have to be managed. This notion illustrates that society has a very warped view of “super-cripdom”.
Coming to terms with disability is not always easy. I remember struggling with it often. Experiencing taunts on the playground such as, “What planet are you from?” because I happened to speak differently, was extremely difficult. After a day of teasing or worse, I would come home very distraught and sob to my mother, “If I could cut out my voice without killing myself, I would if it would stop the teasing!” Learning to walk and use my right side effectively was challenging at times especially when tying my shoes or doing up buttons, but these were nothing compared to enduring the cruel taunts caused by the reactions to my voice.
I would love to say that as I got older, those taunts and the scars from them faded into the background and while some of them certainly have, I still face stigma today, be it the stares I get sometimes as I move or the awkward pauses from others when talking to them as they realize my voice sounds oddly different from theirs, if only slightly. When I talk on the phone with new people (i.e. customer support), they often mistake me for a woman and this continues even after I tell them I am a man. I still do not understand how people could mistake the name Keith as a likely name for a woman. Most of these are little things but going through these experiences day after day add up and they wear me down. They would do the same to anyone.
Some people would quip, “Oh, you do not have it that tough at all!” This is the greatest fault in the perception of what it means to live with disabilities. If I am not in a wheelchair or using a walker and do not “fit” the stereotypical classification of disability, then all my complaints must signify another needy soul, unfairly looking for attention or pity, or both. Society thinks the appropriate response to this is “toughen up kid and be a man!”
I doubt, however, that many people have gone through or would know how to handle in a productive way the following experience: after talking to a young woman on the phone the previous night, out of curiosity, the next day I asked if hearing my voice shocked her; and she said, “I expected your voice to be as handsome as you are”. (Murfee-DeConcini, 2013) I am still trying to figure out if that was a compliment or an insult.
Achieving the ability to speak clearly is something that a lot of people do not understand. Why should they? Most voices develop smoothly; it is a normal and natural biological process. However, learning to speak with a motor disability is different. In my case, it means struggling everyday with paralyzed nerves and floppy muscles in my throat, mouth and face to produce sound. Sometimes the struggle is less noticeable than at other times but regardless, it takes extra effort that most people do not need to use in producing sound or intelligible speech.
A parallel example would be that when someone plugs in new hardware to a computer (i.e. a game pad or headset); most often, it installs automatically and without problem, a normal process that the computer can execute. Sometimes though, it fails to read and understand the new device, thus failing to install correctly and instead displays this message: “Device has not been installed correctly. Please contact your system administrator.”
That is essentially the message that my body sends itself and why the extra effort is required for troubleshooting, or in my case, even producing sound at all. It has only been through countless hours of speech therapy that my voice has evolved to the level it is now. So naturally, I am very protective of my voice and that is because I know the value of it in a deeper, more personal sense because I have had to earn it, and still must do so. The process is constant.
I am not trying to imply that people who are “high functioning” with disabilities have it much worse than people with more visible and profound disabilities; quite the contrary. Nevertheless we do travel along a different path. People with disabilities who fit into the expected classification of disability, such as someone in a wheelchair, are going to be more recognizable to society and are less likely to inspire total shock from those around them than someone with a slight speech impediment or someone who is bipolar. Case in point: it is unacceptable in society to cause a person who is blind to trip on purpose. Yet a grey area exists if distress is inflicted upon someone who has a disability that is hidden or not obvious.
While some people with disabilities may find community with others like themselves, as a friend of mine did when she went to what she refers to as “crip camp” for many years, not everyone with disabilities can find that sense of community and may feel out of place because of this. Add to that feeling the unfair expectation of being more normal, which is imposed by the ableist society, and the feelings of estrangement may take deep root within that person. This is what I have experienced.
Most people who are part of an ableist society that actively promotes an ableist culture will cry foul at this assertion, which is understandable to a degree given that some of them have been part of this culture without even knowing it.[2] This is because the concept of ableism is not widely known, and it should be noted that there are several different types of ableism.
The most common type of ableism is what this paper will describe. According to “The Politics of Ableism” by Gregor Wolbring, [it is a belief that] “reflects a preference for species-typical normative abilities leading to the discrimination against them [people with disabilities] as ‘less able’ and/or as ‘impaired’ disabled people”. (Wolbring, 2008) Ableism is a growing epidemic that has been prevalent in society (in this case, Western society) for an extremely long time, operating on an almost completely unconscious level. Its acceptance has been reinforced by the medical model of disability and the objectification of people with disabilities as “others.”
The estrangement factor of a mild to moderate case of a disability, in my case, cerebral palsy, comes from the feelings of displacement in a society that overly values sameness and the do-it-yourself attitude. My estrangement stems from the belief that I thought that I did not have enough cerebral palsy in order to own it, that is, to claim it fully as an integral part of my identity. This also explains why it has taken me nearly thirty years to begin to investigate this topic and learn more about cerebral palsy. I feel like I have in a sense lived two parallel lives at the same time: one with disabilities and one with the temporarily able-bodied. Those lives have been battling for control ever since.
This battle for control is not unusual. It is a staple of human desire, as society has been searching for a way to cure or wipe out disability for decades, most infamously the Eugenics movement in America from 1910 to 1940; (Allen, 1989) which in turn, inspired and fueled the Holocaust. This human need for absolute control in purging “defectives” from existence is, in the author’s opinion, one of ableism’s deepest roots. The extreme use of the medical model of disability only adds weight to this conclusion. If society cannot attack defective traits or those traits it deems as defective directly, it will do so indirectly in “the nearly unconscious acceptance of ableism and the new emerging forms of ableism and disableism”. (Wolbring, 2008)
Instead, what should be purged within a person with a disability is the feelings of estrangement from their disabilities. When left unchecked, feelings of estrangement can and most often do lead to feelings of resentment towards disabilities, which is the sole purpose of ableism. In order to combat this, cultivating the realization that disabilities are actually a desirable form of beauty must be achieved, even if that form is a different shade from what society is used to admiring. Realizing this is a powerful step in healing from estrangement and the toxic effects of ableism. What is more, by doing so, this will begin to promote the concept of society seeing past disability as a hindrance to life to instead seeing and embracing disability as an asset to life.
From the viewpoint of someone with a mild case of cerebral palsy, putting the above into practice is certainly easier said than done. However, that does not change the fact that someday, when someone asks me if I am ashamed of my disability or if there was ever a cure for my disability, would I take it? I hope to be able to look them straight in the eye, crack a grin and say with conviction: “Why? It took six months to create this awesomeness.”
References
Allen, G. E. (1989). Eugenics and American social history, 1880-1950. Genome , 885-889.
Cerebral Palsy Alliance . (2014, April 20). Types of Cerebral Palsy. Retrieved from Cerebral Palsy: https://www.cerebralpalsy.org.au/what-is-cerebral-palsy/types-of-cerebral-palsy/
Cerebral Palsy Alliance . (2014, April 28). What is Cerebral Palsy. Retrieved from Cerebral Palsy Alliance: https://www.cerebralpalsy.org.au/what-is-cerebral-palsy/
Cerebral Palsy Alliance. (2014, April 15). Spastic Cerebral Palsy. Retrieved from Cerebral Palsy Alliance: https://www.cerebralpalsy.org.au/what-is-cerebral-palsy/types-of-cerebral-palsy/spastic-cerebral-palsy/
Harrell, E. (2014, May 8). Crime Against Persons with Disabilities, 2009–2012 – Statistical Tables. Retrieved from Bureau of Justice Statistics: http://www.bjs.gov/index.cfm?ty=pbdetail&iid=4884
Martiniello , N. (2009). Lesson 6: The ‘Super-Crip’ Phenomenon. Retrieved from Disability in the Media: http://www.trinimex.ca/disabilityinmedia/lesson6.htm
McDougall, K. (2006). ‘Ag shame’ and superheroes: Stereotype and the signification of disability. In B. Watermeyer, L. Swartz, M. Schneider, M. Priestley, & T. Lorenzo, Disability and social change: a South African agenda (pp. 387-400). Cape Town: Human Sciences Research Council Press.
Michigan Disability Rights Coalition. (2014, May 6). Models of Disability. Retrieved from Michigan Disability Rights Coalition: http://www.copower.org/models-of-disability.html
Miller, F., & Bachrach, S. J. (1995,2006). What is Cerebral Palsy? In Cerebral Palsy A Complete Guide for Caregiving (2nd ed., p. Part I). Baltmore: The John Hopkins University Press.
Murfee, E. (2014, May 6). Interventions for Keith Murfee re his premature birth and diagnosis of mild to moderate hypotonia (cerebral palsy) at 18 months. (K. R. Murfee-DeConcini, Interviewer)
Murfee-DeConcini, K. (2013, September 8). Empathic Judgement Communion. Damascus Road Church.
Snyder, S. L., & Mitchell, D. T. (2001). Re-engaging the Body: Disability Studies and the Resistance. Public Culture, 13(3), 369. Retrieved from http://muse.jhu.edu/journals/pc/summary/v013/13.3snyder.html
Stern, K. A. (2014, May 1). Origin and History of Cerebral Palsy. (Stern Law Group, PLLC) Retrieved from My Child at CerebralPalsy.org: http://cerebralpalsy.org/about-cerebral-palsy/history-and-origin-of-cerebral-palsy/
Wolbring, G. (2008). The Politics of Ableism. Development, 252-258.
Yannet, H., & Horton, F. (1952). Hypotonic cerebral palsy in mental defectives. Pediatrics, 204 -211.
[1]The rehabilitation model is more focused on using therapies for adaptation but is an offshoot of the medical model. See Michigan Disability Rights Coalition reference in bibliography.
[2] http://www.vox.com/2014/5/8/5694742/are-you-a-jerk-to-people-with-disabilities-without-even-knowing-it