This is my cousin Bianca's essay-- single spaced so it takes up less room. If you want to send her comments, her e-mail address is [log in to unmask]
Jenn
Foreword
During the course of this sociology of disability class, one thing that has become apparent from the social model is the importance of emancipatory research in the area of disability. Too often the voices of the true experts of disability, the persons living with disability, are ignored or silenced. They are substituted instead with the opinions of medical professionals and disability theorists whose ideas represent a vision of disability as personal tragedy that has unfortunately infiltrated society and influenced the way the majority thinks about disability. As such, in an attempt to give a platform to at least a few of those voices that have traditionally been forgotten, this paper includes some opinions from a number of people with cerebral palsy and parents of children with cerebral palsy from an online support group. These people were kind enough to respond to an email that prompted them to respond to a number of words that are quite provocative in the area of disability studies, including:
Normalcy Impairment Disability
Sexuality Advocacy Intelligence Capacities Medicalization Socialization
Culture Media Doctors as experts
Cerebral Palsy: Causes and Symptoms
Cerebral Palsy (cerebral meaning brain centered and palsy meaning lack of muscle control) is a non-progressive disability stemming from damage to the brain during its development. Causes can occur at three stages known as prenatal, perinatal and postnatal. Known causes at the prenatal stage, when the baby is still in the womb, include, but are not limited to, radiation exposure, intrauterine infection and chromosomal abnormality. Birth complications during labour and delivery such as asphyxia, as well as prematurity are associated with perinatal causes. Postnatal causes can include bacterial meningitis, or any trauma to the brain from things such as shaken baby syndrome, asphyxia and drowning. Postnatally, cerebral palsy can occur until about age three, when brain development is complete.
People with cerebral palsy generally get classified into one of four types, however these classifications often overlap, with symptoms present from more than one category. Spasticity refers to excessively tight muscles that interfere with normal movement. Athetosis involves involuntary muscle movement such as twisting or writhing. Rigidity is a more severe form of spasticity that involves slow laboured movements of muscles around the joint. Ataxia, the fourth classification, is difficulty with balance and coordination; a bad equilibrium, that can cause a stumbling gait. Some problems not specifically associated with a particular classification include poor motor control, impaired hearing and/or vision, and neurolinguistic processing skills.
Introduction to Normalcy and the Medical Model
The severity of cerebral palsy and the associated symptoms varies from person to person. However most people with cerebral palsy do live with some combination of problems that can cause difficulties with walking, talking, eating, seeing, hearing, movement and motor control. Basically it affects features of daily living that are very visible. As such, in society these visible features are frequently used as signals to link a person with cerebral palsy to a host of disabling features. Though the emphasis of this paper is on cerebral palsy, many of the insights are transferable to other visible disabilities. The discussion that follows shows how the medical model, by relying on traditional assumptions about normalcy, leads to the tendency to deny people with visible disabilities sexuality, to doubt their mental capacity and to ignore their expertise and knowledge of their situation. Essentially the medical model and the concept of normal on which it relies are harmful to identity of people with disabilities.
Normalcy = Asexuality for People with Disabilities
According to Sexualhealth.com, "having cerebral palsy has no physical effect on sexual desire. Genital arousal and erectile function are usually not directly affected." However, our society generally regards people with disabilities as being asexual. A dread consequence of this is that no one takes the time to educate them about sex and birth control and caregivers don't provide for dating because of the assumption that they don't need it and they aren't interested (Buchanan, 425).
Denying sexuality to people with disabilities is premised on the model of the normal appearance. For women, and increasingly men, sexuality relates to physical appearance (Lonsdale, 70). As such, people are taught from very early on that they should be conscious of the way they look (Lonsdale, 63). Increasingly, people are judged by their outward appearance, and according to Lonsdale (64), people internalize these beliefs about themselves. "A woman who is born with a physical impairment is likely to be just as influenced by dominant norms and values about attractiveness and physical appearance as any other woman (Lonsdale, 65)." The problem with this is that it is likely to have a negative effect on self-image that then gets translated into a belief that the problem stems from within the individual instead of being created by society. The consequence of this is that feelings of unworthiness cause people with disabilities to fall more and more into the background, making themselves invisible (Iazzetto, King & Yanco). Furthermore, as Sexualhealth.com points out "when people are given the message that they are not sexual or attractive, this can sometimes have an effect on their sexual desires."
Normality is represented everywhere we look. We are inundated daily through advertising and encouraged by it to aspire to look just perfect. But it is an elusive ideal for anyone. In "Constructing Normalcy" Davis (10), contends that historically, before the idea of normal, there existed the ideal. The ideal body type was god-like and no one had bodies that conformed to the ideal, nor were they expected to (Davis, 10). Society then progressed to value the norm that was based on statistical frequency of characteristics that people either conformed to or deviated from (Davis, 13). While a measure of this certainly still exists in society today, perhaps we have evolved to yet another injurious level of ideals. Advertisements, with their airbrushing and computer imaging techniques, suggest that adequacy is attainable only by resembling these perfect images. It is not only necessary to look to people with disabilities to recognize the disabling potential of this standard. The increasing frequency of anorexia, bulimia, body dysmorphia, cosmetic surgery and other 'beauty' treatments are evidence of its disabling effects.
It is from these socially created expectations that people with disabilities are judged to be asexual. Based on the construct of normal, their bodies are seen as somehow, broken, deficient and abnormal and therefore cannot be sexual. As stated earlier however, it is unfortunately often internalized, and then regarded as a problem stemming from the individual.
When you listen to the voices of the true experts of people with cerebral palsy, the people living with the impairment, sexuality is not an issue they would consider unimportant. Reagan, a young man in his twenties, living with cerebral palsy made a visit to the class to talk about his life. He was not bashful to make it very evident that his hormones worked just as well as any 'normal' male. Furthermore, one of the respondents to the email said of sexuality "WE LOVE IT as much as anybody else (emphasis in original)." Therefore, perhaps the attitudes that society hold, based on judging people's sexuality based on appearance, is the biggest disabler of people with disabilities with respect to the asexualization that they frequently endure.
Normalcy = Unintelligence for People with Disabilities
Similar to sexuality, because someone looks different, because they cannot communicate 'normally' or because they are unable to control their movements an assumption is made that they lack intelligence. This equation however is in no way natural and is the result of a social tendency based again on the construct of normalcy that attributes 'normal' bodies with sexuality and intelligence and conceives of 'abnormal' bodies as being asexual and unintelligent.
Though Stephen Hawking has ALS and not cerebral palsy, the following story is very telling of the situation that commonly faces people with visible disabilities, including cerebral palsy. The passage is an account of an instance when Hawking, his daughter and a friend of his daughter went to a restaurant together.
The waitress took the girls' orders and then turned to the able-bodied child and asked, "What does he want?" referring to Hawking without looking at him. Quick to see the slight, the young woman exclaimed, "Can you imagine the smartest man in the world not knowing what he wanted to eat?" (Russell, 15)
Russell (15) goes on to explain, "often if one has a disability.one is perceived to be emotionally immature and mentally incapable as well. Hawking, the adult, was perceived incompetent to order his own lunch, so the child was asked to do it for him."
This is a relatively frequently occurring predicament and it is not necessary to look to Hawking for an example (though it is quite telling). In a book called "Our Bodies, Ourselves" numerous insights are given by women with disabilities that represent this tendency to cast people with disabilities as mentally incompetent. The following are a few examples from the selection:
My family thinks of epilepsy as a mental illness.
People see my body and don't expect me to be smart.
People will pinch me on the cheek and use words that you
would use to a first or second grader. (Iazzetto, King and Yanco)
Similarly, as we have studied, this assumption is often made of people with aphasia. In "The Person with Aphasia and Society", Lemay (210) notes "difficulties [in speech] may lead observers in society to question the person's intellectual capacities."
Besides being disadvantaged by this standard of physical appearance that equates bodily abnormality with reduced mental capacity, people with disabilities are also disadvantaged by standard concepts of intelligence. Generally intelligence is measured in a manner that only includes things such as the navigation of language (written and oral) as well as mathematical problems. Quantifying intelligence by these limited conceptions is very problematic.
To exemplify this I turn to Ruth Enns' A Voice Unheard, the story of Tracy Latimer. Enns (40) notes at one point that Laura, Tracy's mother, did not recognize the "difference between linguistic comprehension and speech" and failed to "encourage her to develop signals for such concepts as stop." Laura judged the intelligence of her own child on the basis of whether she could communicate through speech, finding it unnecessary to facilitate communication based on Tracy's abilities. However, Tracy was only unintelligent by the standard of normal that exists in our society. "Theresa Huyghebaert, who ran the North Battleford group home where Tracy spent her last summer.said Tracy showed pleasure and recognition by smiling (Enns, 24)." This challenges the assumption that mental capacities are based only on a limited number of prescribed measures.
Normalcy = Refusing to see People with Disabilities as Experts of their Situations
Related to the assumption that people with disabilities are mentally incompetent, they are also generally not regarded as being experts of their own situations, of their own bodies, essentially of their impairments. Combined with this is the prevailing view that to not be 'normal' is a personal tragedy and the best way to deal with their deficiencies is to attempt to make them as 'normal' as possible through medicalization. The outcome is that doctors are conceived of as experts (by society) with the "doctor knows best" attitude prevailing, representing and perpetuating the hegemony of normalcy.
People with disabilities are expected to accept the medical classification and treatment of their disability without question because doctors are trying to help cure them of abnormality. As such, a good patient is considered one who is passive and obedient, one who defers to the doctor knows best attitude (Lonsdale, 55). A bad patient is one who is highly motivated to help oneself, independent, active and even aggressive (Lonsdale, 55). According to Hansen (52), "those who are knowledgeable [about their condition] are not respected by medical professionals."
Furthermore, those who do not see themselves as tragic victims of their disability are often subject to the label of being unrealistic or uncooperative (Hansen, 53). As such, an attitude of acceptance and comfort with one's disability, or disagreement with 'normal' procedure is often cast as a psychological problem. For example,
Research on institutional establishments for physically disabled people found, that a wish to leave the institution was categorized as troublesome and inappropriate, and explained either in terms of a feature of the disability, such as 'multiple sclerosis euphoria' or in terms of a failure to accept disability. (Morris, 86)
Again, the problem is not traced to the construction of what is normal, but instead is conceived of as problem that stems from the individual.
Once again, turning to the voices of people with disabilities, it is seen that doctors and the medical profession are typically not regarded as experts. The following are a selection of quotes from reactions received to the prompt of doctors as experts.
Doctors are seldom the "experts" that society holds them up to be.they don't know your own child as well as you do, nor do they know your own body as well as you do. Doctors should be viewed as advocates, not experts. They can assist you in finding solutions to your medical problems, but they can rarely do it without your help.
There are doctors and there are experts. I feel I am the expert when it comes to knowing my son's abilities and disabilities. I take offense when a doctor will examine my son for an hour and then assume they know everything there is to know about my son.
Doctors are people who have gone to medical school and still don't know the first thing about the reality of living with "xyz" problem. Experts are the people who live with "xyz" situations and really know what it is like.
Doctors believe they are the experts, but they tend to see the person as parts.the eye doctor, the heart doctor, etc. They could use some work on seeing the people.
These views express that they don't see doctors and medical treatments as the divine saviours of their decrepit lives as would be expected under the medical model. As stated above they would be regarded as unrealistic based on how one should 'normally' respond to not being 'normal'. But the reality is, that only by being knowledgeable about their disabilities, being the experts on themselves, are they able to make informed choices about treatments.
Though found in fiction, the story of Hippolyte the clubfoot stable boy from Madam Bovary is exemplary of what happens when the hegemony of normalcy and therefore the medical model rules the lives of people with disabilities. An operation to 'repair' his clubfoot, that had not interfered with his performance, but was actually something he used to his advantage, was done because of the belief that the abnormality rendered him animal and that the operation would make him human. The irony of it was that the surgery left him with a gangrenous infection that led to the amputation of his leg (Davis, 20-21).
Medical Model Solutions
The medical model of disability that creates the assumptions as described above that people with disabilities are asexual, unintelligent and unable to make medical choices for themselves is premised on the concept of normal and how deviations from that point need to be adjusted or fixed to make them acceptable. While it fails to see the construct of normal as socially created it increasingly sees these assumptions as problematic. However, the solutions it proposes are generally ones that rely on the individual making changes or adjustments to overcome them.
In "The Personal and Social Implications of "Passing" in the Lives of Women Living with a Chronic Illness or Disability," the authors allude to the usage of "passing" by people with disabilities as a method of reducing negative assumptions that might be made of them. Passing, a term used by Goffman "refers to the ways in which individuals attempt to minimize information which could discredit them within society (Todoroff and Lewis, 29)." They tried to glorify "passing" as a tool of power. They suggest that it is a method for people with disabilities to negotiate their social world and minimize difference that is helpful in resisting the definitions of people who saw them as objects of pity and dread (Todoroff and Lewis, 38).
Similarly, in "Managing Imperfection in a Perfectionistic Culture: Physical Activity and Disability Management Among Women with Disabilities," Guthrie speaks of a concept similar to passing, called managing. She highlights how physical activity can be used to manage disability by attempting to normalize the body. Physical activity, as a technique of management, is used to "improve their physical appearance and sexual attractiveness, to lose weight, gain muscle tone, or maximize their body's functional status so that their bodies and motor function did not appear abnormal or aesthetically displeasing (Guthrie, 367)."
The problem with these solutions is that they are merely band-aid and they do nothing to deconstruct normalcy or overcome the medical model. By placing the onus on individuals to change themselves to fit society's idea of normal, it reinforces that the problem lies within the individual rather than society. Further, the attitude that disability is a personal tragedy that must be overcome is not challenged. That difference is seen as unwanted or undesirable is ridiculous, difference is not the problem. Judging people by a standard of normalcy that casts some people as worthy, useful and human because of their congruence with the standard and casts others as unworthy, useless and 'other' because they do not fit the image of normal is what is problematic.
Social Model Solutions
Recognizing that society is the location of these disabling assumptions is the highlight of the social model. As such, solutions under the social model to overcome the harmful effects on the lives of people with disabilities that the medical model has created must seek to effect change within society. While many changes are necessary, a very important step is deconstructing normalcy. In so doing, the hope is to change the conception of disability from a personal tragedy that must be dealt with individually, to a 'normal' experience that requires society to breakdown disabling barriers, both physical and social. But deconstructing normalcy is not an easy task. As shown, normalcy is a very pervasive concept that is unconsciously perpetuated. So where can we start?
Language is the first place that change should be sought. Language, whether recognized or not, is not value-free. Society has placed significance upon words that are now ingrained into the way people communicate meaning. To be conscious of this and make an effort to avoid using words and phrases that are hurtful and oppressive to people with disabilities is an important step. The language of normal and abnormal must be challenged. "For instance, take the saying "you must be blind not to see that." is a raw example of how blindness is equated with being dense, yet how many would realize that they insult blind people when they allude to blindness in this manner (Russell, 15)?" In an interesting reply to the word disability, an email respondent suggested, "I'd rather the word was 'difability'.just different abilities." This highlights the tendency for society to classify people with disabilities as 'other', as less, as abnormal; but through a change in language it will be possible to give disability and difference their deserved place in the realm of normal.
In an article entitled "People First Language," Kathy Snow points out that it is imperative that an effort is made to effect change within the realm of language. She points out that while the government has made changes to legislation to include people with disabilities in equal rights protections, "government cannot legislate morality, values or feelings.Since our language reflects our values, our language must change (Snow)." Snow feels that it is only when society's language changes, that "perceptions will change, attitudes will change, society's acceptance and respect for people with disabilities will increase and an inclusive society will become a reality (Snow)."
Another area of change that would help in the deconstruction of normal is within the media. Media and popular culture have consistently invalidated the experience of people with disabilities by ignoring them or representing them only in ways that impose the non-disabled world's definitions on them (Barnes, Mercer & Shakespeare, 191). These representations have been defined by the medical model and its conceptions of normal that portray people with disabilities as not powerful, not attractive and uses impairment as a metaphor for evil (Barnes, Mercer & Shakespeare, 191). The problem with this is that these representations are "then regarded as confirming what it means to be a disabled person.[and are used as] rationalization for treating disabled people as 'deficient' (Barnes, Mercer & Shakespeare, 190-91)."
Media, while it can be a reflection of the values of society, can also provide a powerful forum for change because of its pervasive nature. Media can be used to provide positive representations of people with disabilities while also exposing the disabling barriers that exist within society. The following reaction from an email respondent is eloquent in its summary of the way in which media has been disabling, but how through change it also can be used as tool to breakdown normalcy and overcome oppressive attitudes:
There is never enough representation of people with disabilities in film or television. What little there is, is either focused on making the person undisabled or overcoming it to such a degree like climbing Mt. Everest, that not many can live up to that height. We need a drama series where the mother has CP and is coping with her family like they do on 7th heaven.
Of course these changes are just a beginning and must be implemented along with changes that seek to abolish other barriers that people with disabilities face as a result of the medical model and society's internalization and naturalization of its premises. The purpose of this analysis of social model solutions was only to show how challenging it is to deconstruct the concept of normal, though not impossible!
Conclusion
The medical model of disability relies upon a concept of normal that views people with disabilities as deviations or abnormalities that must be adjusted and fixed to fit into society and be deemed worthy and human. The harm that is inherent in this way of thinking has been shown at length in this paper. The point must be driven home however that the ultimate "danger of the "normal" construct is that it serves to make disabled people seem less than human (Russell, 17)." Unfortunately this has been used to justify years of eugenic programs to sterilize and eliminate people with disabilities (as shown in Carol's seminar). The harsh truth is that despite the end of these policies, these attitudes still exist in society today and are fuelled by the construct of normal. The murder of Tracy Latimer and the public approval of her father's actions that followed is perhaps the best example of the way these attitudes are still thriving in today's society.
It is questionable why this concept of normal has to prevail in society, casting some as insiders and some as outsiders. "Disability is often treated as though it were a deviation from the rule. In fact, it is not an anomaly. One out of five persons in the U.S. (and I imagine similar numbers in Canada) have an impairment, yet disability is perceived as an "oddity" rather than as a natural occurrence (Russell, 16)." Perhaps a continuum of normality should be advocated instead of a fixed point that is getting harder and harder and more ridiculous for anyone to fit into. To that end, it is poignant to refer to a thought of one of the email respondents about the construct of normalcy.
People with cerebral palsy are just as normal as other people. That's not to say that other people are normal, because they aren't. There is no such thing as normal. That would imply that a majority of a given group is the same, but people are very different. Some people look different than most, some people act different than most, but there are so many different kinds of people. So, to sum it up, there is no such thing as normal.
It is time to stop focusing on similarities and time to start focusing on celebrating difference!
Works Cited
Barnes, Colin, Geof Mercer and Tom Shakespeare. Exploring Disability. U.S.A.: Blackwell Publisher Ltd., ©1999
Buchanan, Susan. "Surviving a System: One Woman's Experience of Disability and Health Care" in The Psychological and Social Impact of Disability, Robert Marinelli and Arthur Dell Orto, Eds. New York: Springer Publishing Co., ©1999
Davis, Lennard. "Constructing Normalcy." Publication information unknown.
Enns, Ruth. A Voice Unheard: The Latimer Case and People with Disabilities. Nova Scotia: Fernwood Publishing, ©1999
Guthrie, Sharon. "Managing Imperfection in a Perfectionistic Culture: Physical Activity and Disability Management Among Women with Disabilities" in QUEST. U.S.A.: National Association for Physical Education in Higher Education, ©1999.
Hansen, Nancy. "Surmounting Perfect Body Syndrome: Women with Disabilities and the Medical Profession" in The More we Get Together, Houston Stewart, Beth Percival and Elizabeth Epperly, Eds. P.E.I.: Gynergy Books, ©1992
Iazzetto, Demetria, Linda King, and Jennifer Yanco. "Physical Disability and the Pressure to be Physically Perfect" in Our Bodies, Ourselves. www.ourbodiesourselves.org/body.htm
Lemay, M.A. "The Person with Aphasia and Society" in Living with Aphasia. Publication information unknown.
Lonsdale, Susan. Women and Disability. London: Macmillan Education Ltd., © 1990
Mecham, Merlin J. Cerebral Palsy. Texas: Pro-ed Inc., ©1996
Morris, Jenny. "Gender and Disability" in Disabling Barriers - Enabling Environments, John Swain, Vic Finkelstein, Sally French and Mike Oliver, Eds. California: SAGE Publications Ltd., ©1993
Russell, Marta. Beyond Ramps: Disability at the End of the Social Contract. Maine: Common Courage Press, © 1998.
Snow, Kathy. "People First Language." www.modmh.state.mo.us/sikeston.people.htm
Todoroff, Milana and Tanya Lewis. "The Personal and Social Implications of "Passing" in the Lives of Women Living with a Chronic Illness or Disability" in The More We Get Together, Houston Stewart, Beth Percival and Elizabeth Epperly, Eds. P.E.I.: Gynergy Books, ©1992
www.sexualhealth.com
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