Interviewing the Actor with Flippers

Interviewing the Actor with Flippers

Written by Keith R. Murfee-DeConcini

Mat Fraser is an actor with flippers in place of arms, born in 1962 in the United Kingdom. He has a rare disorder called Phocomelia,[1] as a result of his mother taking Thalidomide (the infamous morning sickness pill) while she was pregnant with him. This disorder essentially made his upper limbs develop into the shape of flippers like a seal’s, with similar bone structure and no opposable thumbs. Standing at six feet tall, with a handsome face, Mat still looks strange, even by his own regard. Many people probably find it surprising to learn that his chosen profession is on the stage in the limelight.

Mat says that over the years he has gotten used to always being on display. When he is out in public, people always stare. In his own words: “People have gotten used to wheelchair users. They see them in the peripheral of their vision and their brain computes, ‘yeah, I know what that is. I don't need to look.’ With me, they always need to look because they don't know what it is.” Doesn’t that bother him? Instead, he seems fully accepting, “It’s fine. It’s just how it is. That’s how it affects my daily living. I am always on display.” So it would make sense that someone who is stared at 24/7 might as well get paid for it, as much as they can. Some may see this as a creative coping technique but it’s more than that for Mat. It is about working to help change perceptions about what people with disabilities can do, and at the same time being fearless and unapologetic while doing so.

I first saw Mat preform his play, Beauty and the Beast, the dramatic, explicit, somewhat autobiographical, retelling of the classic fairytale, this spring after learning about it in class. By conscience, my sister, who is a musician, already knew him personally and she connected us through a popular social networking site. I invited Mat to my apartment to conduct this interview.

Mat is not shy about the subject of sexuality and people with disabilities. He is a very sexual performer, confronting the issue head on, often performing nude. It is as if he is saying, “yeah, dudes, I’m sexual. I’m a cripple and I’m sexual.” But he does it with grace and a sense of playfulness, “because it is less threatening. It’s to help people not be threatened. In real terms, it means frolicking with your partner. It’s keeping it fresh.” It also disarms the audience because Mat is so comfortable displaying his body; aside from his “arms” and protruding clavicle, he has an otherwise beautiful, perfectly proportioned body. Beauty and the Beast was X-rated but it was also innocent and “extravagantly imaginative” according to the New York Times[2] and attracted a mainstream audience.

When he is not living in the U.K, Mat lives in New York City with his beautiful wife, Julie. They met at Coney Island and although Julia does not have a disability, they both care about disability rights. With Julia being a burlesque-star, Time Out London ran a story on them, entitled Strippers and Flippers, [3] a few months after they got married. They make quite the unusual couple but that is another part of their charm.

Day to day life is, of course, challenging for Mat. Because of his shortened limbs, he has to bend over often and he bumps his head a lot, as most things (i.e door knobs) are built for people with “normal” length limbs. Mat rarely uses prosthetic arms, as he prefers his natural look. When Mat is backstage changing quickly from costume to costume, he requires other people to assist him. He enjoys cooking and cleaning at home but these tasks take him a long time to accomplish. In fact, when asked what he would want in terms of accessibility that would make his life easier, he smiles and says with a laugh, “a cleaner [a maid], pure and simple.” While certainly not assistive technology in the traditional sense, it reveals one way that his disability impacts his daily life, given how long it takes him to preform simple acts of daily living. He goes on to say, “You know, to get the little bits of cat litter underneath the shelf in the corner of the room, I mean I could do it but it takes me so long and it's so much effort involved, so much time is wasted, not wasted but used. And a cleaner would really speed my week up, cause I like a tidy place.”

He is in the process of learning a voice recognition system to keep up with emails better, even though he does type well. Traveling around the city, he utilizes an automatic car and his bicycle has chopper handlebars.[4] Although he finds that he has to be cautious about riding his bicycle around the city, he notes that it is not as bad in New York City as in London, where there seems to be a “standoff mentality” between the taxis and the bicyclists. He notes, “putting my bike lock on can be really challenging.”

Being an actor, Mat has to travel a lot, especially to the United Kingdom where he is “one of the UK's best-known disabled performers.[5] “ He often wishes he had a personal assistant to carry his bags, given that he has no thumbs. Having no thumbs is the most bothersome part of his disability, he says and then jokes, “Having thumbs or one on one hand would be a useful upgrade.” But then he counters that and says, “People talk about upgrades, like ‘wouldn't you like to have long arms?’ And in this stage in the game, No, it would really screw my life because I've gotten used to what I am.”

Mat has a harder time accepting the process of getting through U.S; immigration while traveling. It takes him an additional two hours or more to get into the United States because security always detains him because he has no thumbs and his fingers do not fit in the scanner properly. He elaborates “I don't find that a good system….I feel that they have not really accommodated people with disabilities properly there. So I find travel really stressful.”

It is quite clear that as a performer, an activist, a lover, Mat Fraser has not let Phocomelia hold him back. Instead he has used his differences in creative ways as a tool, an instrument to inspire, sometimes to stun and to shock, all with the purpose of changing social and cultural perceptions about what people with disabilities can do, given the chance. He states that “I try to be the ambassador, the unpaid role for life of the ambassador of disability because every time someone interacts with you they are interacting with disability.” Mat is also a musician, a drummer and has played with the well-known rock band Coldplay at the 2012 Paralympics closing ceremony.[6] He aspires to be a playwright and a script writer. He says, “My big aspiration in life is to write a good film that's got some disabled people in it as characters.”

Mat has developed excellent social skills because of his disability. He did so to respond to the social model of disability. “When I first realized that I was going to be treated differently socially because of my impairment, I guess I learned to be better socially to counteract it, to become really good at social interactions with people, to become perceptive and intuitive, to be able to talk to people on their level rather than insist they come to mine, to get more from the interaction.” That has worked well for Mat, as his gentle, easy-going manner makes him easy to talk to. He is clearly comfortable in his own skin and that allows people around him to become equally comfortable with him.

When addressing the question of the greatest challenge he faces in daily life, he replies, “To be good, to be a decent, calm, responsible, respectful man that values himself and understands that the people who love him value him equally. Because that's difficult to do. I can fall into behavioral traps of the undervalued, which I have spent my whole life trying to escape.” He escapes this trap through “Perseverance and trying again, because I keep getting that wrong.”

Mat Fraser knows who he is. He is out there doing what he loves and that is preforming, while helping to change how people view disability. When he was asked what he likes most about his disability, he replied, “As a performer, the second I walk on stage I don't have to do anything. I'm always the most interesting person on the stage immediately, which is a great thing if you know how to use it to your advantage.” Indeed he does.

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[1] https://www.rarediseases.org/rare-disease-information/rare-diseases/byID/780/viewAbstract [2] http://www.nytimes.com/2014/03/18/theater/julie-atlas-muz-and-mat-fraser-reinvent-a-fabled-couple.html?emc=eta1&_r=0

[3] http://www.timeout.com/london/cabaret/flippers-and-strippers-mat-fraser-and-julie-atlas-muz

[4] http://www.amazon.com/Wald-8069-Hi-Rise-Handlebar-24-5-Inches/dp/B000WY5SL0

[5] http://matfraser.co.uk/news_pages/bandtb.php (bottom paragraph near reviews)

[6] http://www.standard.co.uk/olympics/olympic-news/disabled-drummer-gets-biggest-gig-of-his-life-as-he-joins-coldplay-at-games-finale-8122036.html

Review of The Sessions (2012)

Review of The Sessions (2012)

Starting John Hawkes, Helen Hunt and William H. Macy

Written and directed by Ben Lewin

Review written by Keith Murfee-DeConcini

The Sessions is based on the true story of Mark O'Brien, who was stricken with polio as a young boy and spent the rest of his life in an iron lung. We see him as an adult, living as a poet and journalist in Berkeley, California, after having graduated from college there. Even with these amazing accomplishments, he requires a team of care-givers, as he cannot move his body at all, except for his head. He types his poems and stories using a stick to strike a keyboard positioned by one side of his head. The main drama of the story, however, revolves around his decision to hire a sex surrogate so that he can lose his virginity and experience sex for the first time in his 38 years. The film’s source material is taken from an article "On Seeing a Sex Surrogate," written by O’Brien himself.

In the film, Mark O’Brien is portrayed by John Hawkes, while the sex surrogate Cheryl Cohen-Greene is portrayed by Helen Hunt; and O’Brien’s pastor and friend Father Brendan is portrayed by William H. Macy. The film is a touching yet hard hitting look at sexuality and disability, in this case, a severe disability. Sexuality and disability is a topic that is rarely addressed in film or in today’s media culture at all. This film helps change that in a profound way, especially given the severity of the main character’s disability and the deeply sensitive portrayal of his introduction to sex, and the superb acting by all the lead characters.

The film begins in Berkeley in 1988 where Mark O’Brien accepts an assignment from Pacific News Service to write a series of articles about sexuality and people with disabilities. It is while interviewing sexually active people with disabilities, that he becomes somewhat taken aback to learn of their very, very active sex lives and their candor about the adaptations sex requires for them, which they are totally open to and enjoy. “I feel like an anthropologist interviewing a tribe of headhunters,” he quips. These interviews also ignite a struggle within himself regarding his own sexuality. He is still a virgin and feels depressed by this, but he is also conflicted about taking action as he is deeply religious. “But I believe in a God with a sense of humor,” he explains to one of his caregivers, “a wicked sense of humor. And one who created me in his own image.”

After reaching out to a now defunct academic center on sexuality, he is referred to a sex surrogate named Cheryl. Of course, he is scared to call her and before meeting with her, O’Brien seeks spiritual advice from his pastor. He wants to know if it is possible for him to know a woman “in the biblical sense,” as it is unlikely he will ever marry and he may be getting “close to my ‘use-by’ date.” Father Brendan, who after doing some meditative prayer, tells O’Brien to “go for it.” What unfolds is a deeply intimate and heartwarming story of discovery about physical and emotional attachment and disability. One film critic calls it, “An exceptional crowd pleaser married to the unlikeliest of subjects.”

We learn that O’Brien can be outside of his iron lung for about 2.5 hours and he has a portable ventilator to use when necessary. This allows his sessions with Cheryl to take place in a bedroom, first at a friend’s house and then at a motel. O’Brien, we learn, has sensation throughout his body; polio just removed his ability to move his muscles by himself. He is able to have an erection and one of the skills he obtains in the sessions is delaying ejaculation, first to the point of intercourse and then to await his partner, to receive simultaneous pleasure, or nearly so. None of these graphic moments are uncomfortable to watch because of the sensitive and delicate direction and acting. In fact, the real Cheryl Cohen-Greene was a consultant for the film and directly helped Helen Hunt prepare to portray her onscreen.

As most people have never heard of a sex surrogate, the film deftly answers the question everyone wonders, how does a sex surrogate differ from a prostitute? A surrogate, whose work is overseen by a therapist, is someone who helps with a sexual problem; there are a limited number of sessions proscribed in advance, and with no possibility of continuing the relationship. In this case, Cheryl states upfront that there will be six sessions. We also learn that Cheryl is happily married and a mother of a teen-age boy. Except for her unusual profession, she seems like an ordinary professional woman, who happens to enjoy helping people directly with sexual issues.

William H. Macy as the pastor holds his own, even being in a supporting role, and his interactions with O’Brien are very touching, and sometimes funny. Obviously, O’Brien’s need for his spiritual guidance given the situation throws the pastor some “spiritual curveballs,” but there is no doubt that his views are expanded about disability and the need to express sexuality through listening to O’Brien.

The chemistry between John Hawkes and Helen Hunt is very strong throughout the film. From the time Cheryl holds up a mirror to O’Brien’s naked body for the first time to when they confess their mutual love at the end of their last session together, one can feel the relationship as real, as nothing is forced in terms of believability. Cheryl becomes aware of O’Brien’s growing attachment to her, which she describes as “transference” in her notes---which must be a common occurrence in her line of work. Gradually though, and with great subtlety, her feelings begin to match his. And so, they end their work together two sessions early, as they must. The opening line of O’Brien’s poem to Cheryl, A Love Poem to No One in Particular, is poignant, “Let me touch you with my words.” Indeed he does.

The film features other people with disabilities---albeit in smaller roles but not throw-away parts. You learn that they are well-versed in sexual knowledge and even offer some to O’Brien. The use of humor in the film is very smart as it makes this rarely talked about subject more comfortable to the viewer. This is most noticeable when John Hawkes uses O’Brien’s natural wit, which endears him to us with great affection. He goes above and beyond in his portrayal of O’Brien, using no body double, thereby staying in O’Brien’s posture, using a ball shaped foam to curve the spine while moving only his head on and off camera during shooting. Hawkes brought polio alive for the audience to see.

The Desirability of Disability: The Social Misconception of Asexuality

The Desirability of Disability: The Social Misconception of Asexuality

Written by Keith R. Murfee-DeConcini

Disability should be seen as a desired variation on what is considered beautiful, not something to be feared --- but people fear what they do not understand.  So instead, society views disability as a weakness and something to be avoided. The cultural perceptions of masculinity and femininity do not allow disability to fit into them. Men are supposed to be strong and in control and women are supposed to be nurturing and to bear children. These perceptions are crude and thankfully have evolved and expanded over the years to empower women, for example, into having more roles than only bearing children. When people with disabilities try to embrace broader perceptions for themselves, they are looked down upon by society. There could not be a clearer example of this than when it comes to being sexual. In fact, society denies the sexuality of people with disabilities and prefers to see them as asexual.

Sexual desire is the driving force of humanity. We are made to seek out sex from desirable partners. The media plays a huge role in shaping the normalized view of desirability. In Sexuality and Disability: The Missing Discourse of Pleasure, Mitchell S. Tepper, Ph.D. states “However, the media has exploited sexual pleasure for gain. Sex is portrayed as a privilege of the white, heterosexual, young, single and non-disabled.” (Tepper, 2000, p.285)

Therefore, it is not hard to grasp that social attitudes towards people with disabilities in general and especially in regards to sex are negative, albeit most of them may stem from the unconscious level. Society would rather not see people with disabilities as sexual beings with the same sexual needs as everyone else. Why? There are many reasons, and the most prevalent reason is discussed by Alex Comfort, M.B in Sexual Consequences of Disability. “The needs of such people [people with disabilities] are better minimized or ignored, rather than discussed, for fear of embarrassing them---by which we mean that they embarrass or disturb us.” (Comfort, 1978,  p. 1) It is much easier for society to label people with disabilities as asexual rather than facing the collective insecurities around sexuality and disability.

Parents, too, struggle with accepting that their son or daughter with disabilities can have romantic desires. In The Sexual Politics of Disability: Untold Desires, Tom Shakespeare et al, offers this example: “As the mother of a disabled young woman stated, on hearing her daughter had a boyfriend, 'I thought your disability meant that you wouldn't be interested in boys, and that your father and I would be saved this embarrassment.’” (Shakespeare, 1996, p. 17) Understanding the underlying beliefs of this asexual label allows one to better understand the magnitude of the problem this label creates.  It is a microcosm of all the stigmas associated with disabilities.

The first belief is that people with disabilities cannot or even should not reproduce.  If someone cannot do that, then why should they have access to sex or even want it to begin with?  “Disabled populations are not viewed as acceptable candidates for reproduction or even capable of sex for pleasure. We are viewed as child-like and in need of protection.” (Tepper, 2000, p.285) While it is true that some people with disabilities cannot reproduce, it does not mean that they are not able to find pleasure in having sex. Furthermore, not every disability prevents the bringing of new life into this world, which is the most fundamental creative experience that should not be denied to people with disabilities.

The second belief touches on the details of the sex act itself. Those with physical disabilities sometimes require adaptions to sexual intercourse that society finds unnatural or repugnant, at least when used by people with disabilities. For the general population, it is widely accepted that pleasure is enhanced by multiple positions available for sexual intercourse. So the different standard is contradictory. Just like people without disabilities, those who have disabilities rely on the pleasurable exploration of different positions. This is just an adaption but society finds some adaptions less wholesome than others.

The attitudes and perceptions towards disability and sexuality are steeped in misconceptions. As a study on this topic done by Shaniff Esmail et al, finds “People have a really specific perspective of what being sexual means and it would be challenging for a lot of people to expand that to include people with disabilities… it is automatically impossible in many people’s minds for people with disabilities to have sex.” (Esmail, 2010, p.1151)  Many people consider sex to be a sacred act and the mere thought of people whom society deems as defective engaging in that act can be very disconcerting.

Facing the fact that it is not impossible for people with disabilities to have sex is beyond many people’s comprehension. They even go so far as to demonize the very idea. It calls to mind a parallel taunt to in Othello when Iago tells Brabantio “I am one, sir, that comes to tell you your daughter and the Moor are now making the beast with two backs.” (Shakespeare, 2004, p. 6) The very notion of this act is viewed as vile and unnatural, because the Moor is of a different race than his new wife. So too, sexuality and disability are viewed as vile and unnatural.

Even romance between someone without disabilities and someone with disabilities makes society uncomfortable.  In Enabling Romance: A Guide to Love, Sex and Relationships for People with Disabilities (and the People who Care About Them), one of the authors, Erica, who does not have a disability but was dating (and later married) someone who has a disability, recalls a shocking experience: “…when I walked into a local bookstore one day and asked the sales assistant whether they had any books about disabled people and romantic relationships, ‘Why would anyone want to read a book about that?’ he said, his face clearly showing his disdain.” (Kroll, 1992, p. 12)

These “mixed” relationships are considered essentially unbalanced.   According to one study, this is attributed to an overlying “fear of being a caregiver rather than a partner.” This idea stems back to the general public’s inability to reconcile the concepts of physical impairment and emotional/sexual relationships.” (Esmail, 2010, pp.1151)  Likewise, people with disabilities are also affected by this attitude, fearing that “their partners would assume that ‘I deserve better than to be with a defective person.’” (Esmail, 2010, p.1151)

Both of these fears are understandable and they are very common fears to have; but they are mainly influenced by social pressure.  People are taught from a very young age to strive for perfection and to find that special someone who is also perfect. Ideally these beliefs evolve as people grow out of childhood fantasies into a more mature mindset. These beliefs, however remain as deeply rooted as the ones presented at the beginning of this paper. Disability does not fit the ideal of perfection or the imagined picture of that special someone who is perfect for us, by society’s standards. Having a partner with a disability is seen as settling for something less than desired.  When people see someone with a disability, they most often only see the disability and not the person themselves.

The stares and hushed whispers from other people can be very difficult for a “mixed” couple to handle, especially when concerns come from people they care about, such as friends and family. Comments such as “They’ll always hold you back.” or “Wouldn’t a partner with a disability understand you better?” may seem well intended but they do nothing to inspire confidence in a new relationship, rather only voice society’s distain. (Kroll, 1992, p. 13)

In a modern retelling of Beauty and the Beast, Actress Julie Atlas Muz tells the story of her engagement to Mat Fraser, one of U.K’s best known disabled performers.  Muz’s mother was more than a little horrified and blurted out, “Why do you want to marry someone like that?” Her response was unusual in that she thanked her mother for being so honest about how she felt. Julie was able to then openly share her feelings about the many wonderful things that Mat brings to her life. (ONEOFUS, 2014)

As Tepper concludes, “In the words of Benjamin Seaman, a visitor to sexualhealth.com, access to pleasure is ‘the real accessibility issue.’…Full inclusion means access to pleasure. It means a reasonable chance for relationships.” (Tepper, 2000, p.289) When people hear the term “accessibility,” they think of things like ramps, lifts or specialized restrooms. However, the term actually has a broader focus, one that includes interpersonal relationships at all levels because these enhance the quality of life most of all.

The third and final belief that attributes to the asexualization of people with disabilities, which is the most shocking and demoralizing, is the notion that if someone who does not have a disability is intimate with someone with a disability, then they will get infected with that disability.  There is no data or research to support this fear.  Disabilities are not contagious, yet the idea persists.

According to an article published by Disabled World, a worldwide disability news site, “The medical model is presented as viewing disability as a problem of the person, directly caused by disease, trauma, or other health condition which therefore requires sustained medical care provided in the form of individual treatment by professionals.” (Langtree, 2010)  This model puts the term “disability” on the same level as the term “disease” and it has been used historically as the normalized view of how society constructs disability. Disease equals danger--- which brings the possibility of substantial pain or death.  Since the act of sex is the physical merging of two separate life forms into one, spiritually and emotionally speaking, the fear might be understandable, however completely irrational.

Society has referred in the past and, still to some extent continues to refer to people with disabilities as “unnatural,” “unclean,” “defective,” “weak,” “diseased” to name but a few choice phrases.  This paper has only scratched the surface in exposing the magnitude of the problem imposed by society of labeling people with disabilities collectively as asexual beings.  This puts them in a sterile box, thereby taking away their basic humanity. It is this act, above all else, which the author finds truly hideous.

There is another way and it is beginning to emerge more and more. It happens when disability is appreciated as a part of someone’s beauty, like seeing a beautiful sculpture of a desired variation. As artist Riva Lehrer says, “Variant bodies are infused and vibrating with lived histories….Variant bodies are wondrously alive and inhabited in ways that make unmarked bodies seem silent and vacant.” (Lehrer, 2014, p. 163) People with disabilities can be seen as entities of pleasure, taking their rightful place in the most rewarding of human connections.  This view is possible and it is within our reach, closer than ever. 

References

Comfort, A. (1978). Introduction. Sexual Consequences of Disability (pp. 1-4). Philadelphia: George F. Stickley Company.

Esmail, S., Darry, K., Walter, A., & Knupp, H. (2010). Attitudes and perceptions towards disability and sexuality. Disability and Rehabilitation, 32(4), 1148-1155. Retrieved March 17, 2014, from http://informahealthcare.com/doi/abs/10.3109/09638280903419277

Kroll, K., & Klein, E. (1992). Our Own Love Story. Enabling Romance: A Guide to Love, Sex and Relationships for People with Disabilities (and the People who Care About Them) (p. 12). Horsham: No Limits Communications.

Langtree, I. (2010, September 10). Definitions of The Models of Disability. Disabled World. Retrieved April 19, 2014, from http://www.disabled-world.com/definitions/disability-models.php

Lehrer, R. (2014). Beauty in Exile. In Caitlin Wood (Ed.), Criptiques (pp.151-175). San Bernardino, CA: May Day Publishing.

ONEOFUS in co-production with Improbable, Beauty and the Beast, Abrons Arts Center, New York City, March 13-30, 2014

Shakespeare, T., Gillespie-Sells, K., & Davies, D. (1996). Barriers to Being Sexual. The Sexual Politics of Disability: Untold Desires (p. 17). London and New York: Cassell.

Shakespeare, W. (2004). Act 1, Sc. 1. Othello (p. 6). New York City:  Simon & Schuster.

Tepper, M. (2000). Sexuality and Disability: The Missing Discourse of Pleasure. Sexuality and Disability, 18(4), 283-290. Retrieved March 17, 2014, from https://thesorce.co.nz/assets/Resources/Sexual-Diversity/Tepper-2000-SD.pdf

The Estrangement Factor of Mild Cerebral Palsy

The Estrangement Factor of Mild Cerebral Palsy

Written by Keith R. Murfee-DeConcini

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, weighting two pounds, eleven ounces. I was born three months premature and nearly died in the middle of December of that year. A few weeks before that fateful time, I pulled out my breathing tubes 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 NY 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 as well 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, what 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 speak 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. 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 say, 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, for example, 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 to 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 and 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 is the various interventions that were begun right after my birth. These interventions included:

Neurodevelopmental therapy, which is a 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 when 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 preemies. (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, to only shoe inserts. These orthotics made by Dr. Jordon 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)

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 8-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 throughout much of my early school years through high school. Then recently, 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 that 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 and neglect, 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 difficult 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 to 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-Criptum.”

Coming to terms with disability is not always easy. I remember struggling with it a lot. 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 where the greatest fault in the perception of what it means to live with disabilities is. 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 albeist 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 (DIY) 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 in 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’s 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 awesome.”

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.

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[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

An Injustice in New Mexico

An Injustice in New Mexico

by Keith R. Murfee-DeConcini

We are taught from a very young age to always respect authority because that is what society expects us to do. In most cases, that is perfectly understandable and agreeable to do. However not in all cases.  I learned this in spades during my final year as an undergraduate and it was a devastating experience.

My college was small but excellent, known for its creative faculty in a southwestern town that attracts artists of all types. With my interest in creative writing and music, it was a good match for me and I thrived academically, often making the Dean’s list. I was elected cultural diversity officer which made me a part of student government, so naturally I was very active in helping the college promote a more diverse student body and in hiring more diverse teachers, including at the time, their first writing teacher with a disability. I also advocated in the Santa Fe community to help merge the financially struggling college with a much bigger university system, which led to my being appointed by the Governor to a special Task Force charged with saving the college. Further, I had obtained an internship with the city as an ADA Coordinator for the bus system.

My success socially, such as it was, left a lot to be desired. My disabilities were a part of that picture (including a speech impediment and a nonverbal learning disability which impacted my social skills) and the stigma because of these seemed ever present. I had a small select group of friends but a lot of others on campus were only acquaintances, just the “hello” types, no matter how much I tried to deepen those connections, especially with most women.

Late one night in the middle of my final summer, I was on a popular social networking site, playing around, and I sent a slightly risqué message to a few female friends, including a fellow student who had just started a full-time job at the college. I then went to bed, having not giving my message a second thought.

Upon awakening the next day, I realized my error in judgment and sent apology messages around to my friends. Some agreed my email was inappropriate, some ignored it, and one recognized it as a joke and made a similar joke back. The young female employee, however, forwarded the message onto her boss, who in turn forward it to his boss, an ultra-authoritarian woman, who for the purposes of this paper shall be called Judy. Before the college’s merger with a much bigger university system, Judy had been the director of Treo, the college’s disability services program, mandated by the federal government. Naturally being the director of the program, she was well-versed in my disability profile; she also oversaw my work with a mentor. Although we did not always see eye-to-eye, up until this point we maintained a friendly, professional relationship. Now, she had been promoted to a position similar to a dean of students.

Judy was notified by John, her employee, of my error with Ashley. John was told to bring me in for a talk. But it was not a talk; decisions had already been made. John claimed that Ashley felt sexually harassed and so, despite my attempts to apologize, they were going to officially charge me, saying that the email message was sent through official college channels, even though that was not true, it was sent through a 3^rd party website --- and to several other people other than Ashley as well. The meeting with John felt like entrapment. Nothing I said mattered and I was not allowed to have my mentor (who was no longer employed by the college) as my advocate. Despite all this, while further “investigations” were pending, every position I had with the college was taken away. I was isolated, prevented from participating in anything but classes.

My dad, who was in the midst of a medical procedure back East, flew-in to New Mexico and mounted a passionate defense, with the help of my mentor. The college refused to reconsider their extremely harsh ruling, silencing their own professional ADA advocate in the process, banning her from speaking to me or my family.

My family saw that the situation was getting out of hand and would only get more unfair, so we decided to hire a lawyer; and the newly-christened university did the same. Looking back, I can see that the email message I sent was in poor taste certainly, but it did not even come close to matching the definition of sexual harassment in the student handbook. So it quickly became clear that this was like a “railroading” situation, though we could not understand why. It felt like they just wanted me “gone” and they did not care what they had to do to achieve this hideous objective.

 Of course, I was not taking any of this well at all. I was emotionally deeply distraught, also angry, could not sleep --- well, it was awful.  I could not face the painful reality that the college I loved, that I helped to save, was doing everything possible to demonize me in this process. My lawyer appealed the ruling by the university; and I received a number of letters of support from local politicians (including the Mayor); from friends, including one who received the email message; and my doctors, especially those who understood my disabilities and the role they may have played in my poor social judgments. Everyone who sent letters of support on my behalf (except for the Mayor) were women.

Still, despite this outstanding show of support, it did nothing to persuade the university to reverse their ruling, at least at first. They seemed to have little interest in my record of support and achievement. They also did not care that they willfully trampled the employment section of the ADA (since I was a college employee, front desk manager at the fitness center) or any other section relating to fair and equal treatment for students with disabilities from institutions that receive federal money.  Finally, after many excruciatingly painful months, they dropped all charges.

In the end, though, in some ways they won, because of the deep psychological pain inflicted upon me, which required months of healing aided by doctors, therapists and treatment programs. I felt stigmatized, because of my social skills, because of my disabilities, because I’m different, because of who I am. It seemed surreal:  one small lapse in judgment, a 3-sentence rather tame email, and Judy, drunk with the power of her new position, wanting to make an example out of me, I guess. The lesson I learned is that basically people with disabilities cannot make mistakes at all --- and if they do, they are persecuted, with no second chances allowed.

Meanwhile, I had to go through one of the darkest periods of my life.

The man who would become president of the university, I had met long before this incident. He told me one time that if anyone hassled or abused me because of my disabilities, then I was to come to him directly. I tried to contact him --- and he never responded. So his promise of support turned out to be very hollow.

This situation is one reason why I decided to explore the area of disability studies, to perhaps gain some understanding of why things like this happen. This sort of abuse of power by authority figures has happened for far too long to all kinds of people, especially those with disabilities. The time to curb these offences or completely eradicate them is long overdue. Revenge never solves anything and in almost all cases is self-destructive.  However, I wish there was more justice possible in this; though the charges were dropped, the college still inflicted pain and there is no way to make them pay for that. I believe that people must be taught about differences and how to respect them; and to understand that all humans can make mistakes. Sometimes those people are people of authority.