Aliusmodi Fasho

Aliusmodi Fasho: A Phenomenological Look at Current Ideographical and Ideological Inadequacies in Describing the Difference between Medical and Social Models of Disability

Joseph Barry

California Baptist University

Author’s Note:

This paper is being submitted to Prof. Carol Minton, Ph.D. in partial fulfillment of the requirements for Sociology of Disability, DIS 540A on December 14, 2012

Aliusmodi Fasho: Current Ideographical and Ideological Inadequacies in Describing the Difference between Medication and Socialization

Introduction:

Terminology surrounding concepts of disability has long been point of public contention (Barton, 2009; Brown, 2002; & Gronvik, 2007), however persons described as having a disability are doing the rest no favors in being easily labeled. Such a quandary is understandable considering prevailing macro culture assent and limited education available on the topic. Furthermore, because our classic concepts of disability hold meaning in the subject rather than the object, agreement is required in order to share and advance theoretical perspectives.

For purposes of this paper we must establish some definitions in order to advance the position. First, we will use the term “aliusmodi fasho” to describe the phenomenon of what is commonly known as being disabled or having a disability or impairment. However, “aliusmodi fasho” is meant to describe the actuality that is the experience of the individual regarding such phenomenon. Aliusmodi fasho is a neutral term meant to imply nothing more than the experience. There should be no attribution of value or significance otherwise to such term. Second, the term “disability” will be used to implicate distinctively and only issues pertaining to society, the individual interaction thereof, and the social implications of such regarding what is here described as Aliusmodi Fasho. The term “disability” will refer to what is currently considered a social model of such. Third, the term “impairment” will be used to address only the particulars of an individual’s relations and interaction with concepts of medical treatment and rehabilitation, or a medical model. Finally, the objective physiological idiosyncrasies of individual persons, while being relevant to issues of aliusmodi fasho, disability, and impairment, will be addressed here as naturally occurring “qualities” in the unique makeup of each human being. The term “quality” is meant to be a synonym for characteristic, and does not imply good, or bad for that matter, when referenced.

The purpose of this work is not to set a standard from which to define certain personal traits, currently and incorrectly, passed as disability and impairment as is often the aim of other scholars (Barton, 2009); instead, it is provided that a sharp distinction be made between the concept of disability and that of impairment as previously discussed. The reason such a distinction is important is ultimately dependent upon context but generally is the basis from which to obtain actualities about, and encompassing the naturally occurring qualities in question and aliusmodi fasho.

Brown (2002) accurately stated, “The disabled community is the most diverse there is” (p. 92). In order to engage thought and accurate learning, we should welcome expanding definitions as opposed to perpetuating stereotypes by minimizing conceptual definitions. Finally, the intrinsic attachment of impairment, a medical construct, to disability, a social construct, is inaccurate and unethical in most contexts; to which, persons in a position of power should at least be made aware of.

Qualities, Traits, and idiosyncrasies of the individual:

When using the term “quality,” we do not mean to assign value; rather, we only wish to describe variance along the dynamic that is human life. The concept of “quality” as described here, stands in sharp contrast to the ideograph that is the term disability. Disability, by our definition, implies value to an actuality that is dependent upon context and many environmental factors for accurate value attribution. When you remove context and look at individual physiological makeup, you realize that the incorrectly applied terms of impairment and disability often complicate what is, at the base, variation in the natural occurrence of the human being. Variances in the physical mind and physical body, whether inherited, innate, or acquired, are naturally occurring instances. By definition something that occurs without an amount of chemical, physical, or spiritual/psychological manipulation is considered natural. Even acquired qualities such as traumatic brain injury, paralysis, or cancer occur naturally. Such qualities are randomly expected to occur in people. After all, we do not get into a car accident and grow literal wings; until a documented case of this naturally occurs, such an instance will continue to be considered unnatural. It is very important to restrict the attribution of value to human variance. Such attributions should be left only to the individuals united with any given variance in question.

Qualities of the individual are more permanent and are subject to the natural evolution of bodily processes. Whereas an immediately broken and dislocated finger is an injury, and classic example of impairment; whether treated or untreated, the injury changes the actual permanent physiological makeup of the finger. This change may be made more, or less, intense as the person attached is treated (medically) and/or ages. Such an injury may or may not constitute a disability depending on the social factors implicated. The permanence and untreatable nature of the physical variance, whether acquired or innate, is what makes it, (physical variance) natural. However, because something is natural, does not implicate the subject to be automatically accepting of such qualities. Two dynamics begin to interact on any of our individual makeups: they are; 1) the ability to change such qualities through such things as surgery, diet, exercise, etc., and 2) the desire to change such qualities. Permanence and/or the untreatable nature of some qualities put the subject in a quandary, only when the quality is perceived to be undesirable. This undesirableness, assumed to a given quality, emphasizes the importance of allowing persons attached to such qualities to be the only ones allowed to attribute credible value to such qualities. Value attribution to personal qualities by persons who do not share the same, or very similar qualities, only convolute and confuse a subject; a subject that may already be wrestling with many issues within the self. For this reason it is very important that distinctions between disability, impairment, and individual qualities be made.

Such uncontrollable qualities can be a great source of pride and/or anguish; much like height, race, natural hair color, eye color, etc. because such traits may be used as the physiological identifiers of cultural membership, such identifications not only have implications for how we perceive ourselves, but also how we perceive our world. Without making an argument here why I feel persons who share a certain set of qualities, and are linked together through social labels and definitions such as disability, constitute a culture, we will simply note the significance. Klopf and McCroskey (2007) posed, “Essential to know is that culture provides a blueprint that determines the way we think, feel, and behave in our society, a blueprint that is unlikely to be shared by other cultures” (p. 21).

Disability:

Our general concept of the actuality of Aliusmodi Fasho manifests itself in what is commonly considered disability. Disability is dependent upon social factors that are very real, and potentially, the main actor in our approach to the subject. There is a propensity to automatically consider the social aspects of disability as negative. However, to do so would be inaccurate. Whereas we cannot change individual qualities, and where impairment is changeable dependent on medical and scientific innovation, disability as a social construct, can be influenced, molded, and changed. Furthermore, the importance of disability as a concept is highlighted because much like individual qualities, society can be a source of either anguish, pride, or both. Because society arguably has the most potential for immediate and dramatic change, and because that change can have a positive and/or negative impact on all parties involved, disability should be a main focal point of social scholars and professionals alike. There is no problem with using the term “disability” as long as it is understood that disability refers to the social phenomena that contributes meaning to Aliusmodi Fasho.

Regarding disability, value is attributed and/or negotiated by all parties involved. This, unlike qualities of the self and issues of impairment, is where everyone can communicate their positions and value is bargained. Disability is where we discuss with our neighbor concerns and appreciations, definitions and understandings, acceptance and favorability, etc. Furthermore, the decisions negotiated here as to the value of, and approaches to, disability surpass the simple confines of one’s lifetime. Disability as a concept is passed socially from generation to generation. How we leave this situation is how our children will inherit it.

Some social scientists want to provide that disability as a social model is inaccurate, outdated, or otherwise not useful. Tom Shakespeare (2002) has stated, “the time has come to move beyond this model” (p. 9). While it may be true that the actuality over cultural and individual experience is much more than the concept of disability encapsulates, because social constructs are such a pertinent aspect of our experience, a social model of disability will continue to be useful for generations to come.

Social experiences can be both positive and/or negative, a source of pride and/or anguish as I stated before. The potential for influence on the overall perception of Aliusmodi Fasho is greatest in this area. Pop culture, mass media, and macro cultural policies can transform the experience of Aliusmodi Fasho dramatically. Such influences, and the potential manipulation thereof, should be a focus of future research.

Disability as a concept is related to medicalization so strongly that widespread terminology to the subject does not distinguish it accurately from impairment. Scholars seek to point out the impairments of society when discussing disability as a social model. This is important, but neither disability nor impairment is an end all to the experience of Aliusmodi Fasho. The qualities in question are ultimately held in the self. Autonomy in making final judgments as to the value and self-worth of such qualities must ultimately be held in the individual, however because disability and impairment are so influential in said person’s lives, such concepts can make accurate self-construal very difficult. The voice of disability can be the ultimate source of pride, or the most damaging source of negative self-perceptions. When disability becomes polluted with an overemphasis on impairment we play a dangerous game of magnifying deficiency in the subject. Impairment, while being a very relevant aspect of the experience of Aliusmodi Fasho, is a nonnegotiable and difficult aspect of Aliusmodi Fasho.

Impairment:

While impairment will understandably be an actor on the value attribution of unique qualities to the self, related to being Aliusmodi Fasho, it is not necessary for impairment to be related to disability. It has long been hailed that a patient’s relationship with his or her doctor is a private matter that is not the business of persons close to the situation, let alone for the whole of society to attribute personal and public worth.

Impairment must be understood as the issue(s) that needs immediate medical attention. Such instances are by definition undesirable; mainly due to impending pain or the threat of imminent death. Impairment is unacceptable, not because of any social ills or concepts of the self, but because the individual does not/cannot accept its state. Examples include broken bones, depression, Burns, trauma, internal bleeding etc. impairment can be directly related to, and/or the same as, disability, Aliusmodi Fasho, and/or individual qualities. For example, HIV-AIDS, Alzheimer’s, cerebral palsy, and other individual qualities may require immediate and constant medical intervention, however, even in these instances, medical impairment remains separate from one’s actual self and attached value attributions. Even as impairment becomes a part of one’s qualities, it remains categorized separately, and under it, as one of many subsets to what ultimately is the quality in question; Aliusmodi Fasho. Furthermore, what distinguishes impairment from one’s actual qualities, related or unrelated to such, is that there is more potential to change impairment. In order to approach a quality from a medical perspective, it must have the potential to be changed. When impairment is untreatable and/or permanent it becomes an issue of the natural qualities of human beings. Even when the quality and question leads to death, once it is determined unavoidable, it becomes natural; as death is, and is ultimately rationalized, within the subject, and meeting the requirements for Aliusmodi Fasho.

Finally, because impairment is both objective and subjective its worth or value is attributed/negotiated between the doctor and the patient. While some impairment is immediately undesirable, others are figured to be undesirable based on information provided by a doctor. Persons must be comfortable discussing openly with their doctors their concerns and qualities, without such been complicated or implicated socially. This further emphasizes the importance of a separation between concepts of disability and impairment.

Conclusion:

While macro cultural discourse does not currently allow an adequate amount of definitions to discuss the subject completely, it is important to note we are not scientists of popular culture. A model is provided (see Table A: Aliusmodi Fasho) as to how a more accurate picture of the phenomena referred to as Aliusmodi Fasho can be described. This allows us to better understand the difference between disability and impairment while also being able to discuss similarities. However macro culture does more than is appropriate to attach the two. Erving Goffman (1959) in his sociological genius stated, “when an individual enters the presence of others, they commonly seek to acquire information about him or bring into play information about him already possess” (p. 1). For persons with disabilities, (that is, attached socially to being Aliusmodi Fasho), this search for information has unethically pervaded the private walls of the physician’s office. This has potentially been done out of confusion or out of the disregard for the common courtesies of those experiencing Aliusmodi Fasho. Nonetheless it is highly unethical. Furthermore, the proposed approach allows for a base point from which to make assessments for further study into potential implications for cultural establishment of those experiencing Aliusmodi Fasho. If cultural markers are present, experiencing Aliusmodi Fasho can be better understood. We may also be able to better understand the cultural dynamics of such. However, if we continue to use impairment against those experiencing Aliusmodi Fasho, such persons will become even more distrusting of concepts of disability. This can expand the distance in understanding between all parties and ultimately delay full integration, equality, and fairness. Impairment is partitioned from disability by the self and the qualities held solely within such.

Table A: Aliusmodi Fasho

Disability ·         Subjective ·         Social markers/implications for variance in human makeup. ·         Dependent upon social factors. ·         Can be influenced, molded, and changed. ·         Transcends generations. Undying ·         Undesirable/desirable actions to and from others. ·         Can be a source of pride and/or anguish. ·         Value is attributed/negotiated through communication.

Individual Qualities, Traits, and Idiosyncrasies ·         Objective ·         Actual physiological variance. ·         Psychological/Physical ·         Mainly permanent, but may change (like grey hair, balding, or body shape). Not temporary. ·         Dependent upon uncontrollable factors of human makeup/condition. ·         May be acquired, innate, and/or inherited. ·         Very little ability OR desire to change. ·         Subject to death. ·         Can be a source of pride/less anguish. ·         Value attributed by subject.

Impairment ·         Subjective & Objective. ·         Issue of medical doctors and patients. ·         Undesirable condition. ·         May cause immediate pain, anguish, and/or death. ·         Strong ability to influence/potential to influence. ·         Source of anguish/less pride. ·         Temporary by healing, death, or permanence. ·         Threatened/subject to death. ·         Value agreed upon/negotiated by patients and doctors.

References

Barton, B. (2009). Dreams deferred: Disability definitions, data, models, and perspectives. Journal of Sociology & Social Welfare, 36(4), 13-24.

Brown, S. (2002). What is disability culture. Disability Studies Quarterly, 22(2), 34-50. Retrieved from http://dsq-sds.org/article/view/343/434

Goffman, E. (1959). Presentation of self in everyday life. Garden City, NY: Doubleday & Company Inc. Retrieved from http://clockwatching.net/~jimmy/eng101/articles/goffman_intro.pdf

Gronvik, L. (2007). The fuzzy buzz word: Conceptualisations of disability in disability research classics. Sociology of Health & Illness, 29(5), 750-766. doi:10.111/j.1467-9566.2007.01014.x

Klopf, D. W., & McCroskey, J. C. (2007). Intercultural communication encounters. Boston, MA: Pearson Education Inc.

Shakespeare, T. (2002). The social model of disability: An outdated ideology. Research in Social Science and Disability, 2, 9-28.

Being Critical of Critics: Sports and the Public Life of Donte Stallworth

Sports, Football, and Life…

I woke up reading yesterday’s Sacramento Bee article (posted mm/dd/yyyy, Could not find internet edition as this article was posted near the end of 2014) on Donte Stallworth. The same Donte Stallworth who has spent the first part of his life experiencing both the highest of highs and the lowest of lows our American social ladder has to offer. Before I go further and sum up his experiences as the public has become to know, and believe me, I am sure that the public’s knowledge of this man is a very small fraction of who he actually is, let me first point out that he is first and foremost a man, or in political correct terms, simply just a human, a human being. He is, and always has been condemned to all of the human qualities and faults that any and all of us share in.

Now to sum it up, Donte Stallworth was the pride, along with Ontario Smith of one of Grant High School’s, and quite possibly one of the Sacramento area’s greatest ever football teams, high school or otherwise. He went on to have a decorated college career with Tennessee while his teammate, and possibly more talented, Ontario Smith took a bit more of a dramatic route, they both ended up in the NFL. Both players careers were dramatic, but for different reasons. Without making this blog about the intersection of both player’s careers we will simply say that Donte, purely as a player, had a much more decorated career in the NFL.

The paper touched on the drama that ended up catching up to Donte when after having a few drinks in Florida he drove home and struck and killed a man jay walking in an extremely unsafe manner after finishing his shift at work. Stallworth paid his debt to society and I am sure pays an even deeper debt in his soul on a daily basis.

What is unique about his situation, is that unlike many people, Stallworth was given another chance, not only at freedom, but also with his career. Was not his crime unforgivable? Of course it was forgivable. It was an accident, that as a young man growing up in Sacramento taught me in a real way that drinking and driving is something to be avoided at all costs. Not simply because I would want to avoid jail, but a bigger deterrent is based on how my feelings might work themselves out knowing I was responsible, directly or indirectly, for killing someone’s father, for lack of a better word, being irresponsible with my actions.

What must be reiterated is that Donte, like Ontario, is just a person, an athletically talented person, but nonetheless, at heart just a person. What this story was about was how Donte has been working at being a sports writer for the Associated Press. He was attacking this new endeavor on life with the same fervor he attacked his football career. The question remained as to whether Donte is as talented a sports writer as he had been athletically. What was answered for me, while reading the article is that Donte, if nothing else, is an extremely resilient person. It is hard to be the source of so much shame and still have the courage to keep fighting to live life to the fullest degree that all of us are set on earth to attempt to achieve.

Mr. Stallworth’s story is inspirational, yet such inspiration could not be possible without second chances and a bit of a reserved judgment. The saying goes that judgment is reserved only for the almighty.

Quite frankly, I am rooting for Stallworth and thankful for those who have allowed him the opportunity to not only remain inspirational, but also a testament to how not to make life altering mistakes. We are all persons at the root of our soul and Donte, despite all of our fallen Sacramento football players of the 90s and 2000s, is the one who separates himself from the others simply because he is a person who is not immune to mistakes, and represents that person hood that Sacramento represents directly from his undeniably strong spirit and the root of his soul.

Thank you Sac Bee and thank you Donte Stallworth for telling and writing not just stories about sports but more to the point stories of life and how it is played out through the magic of sports.

Social Change

http://www.ted.com/playlists/120/geoffrey_canada_7_talks_on_so

The Fight to Make California the Next State to Legalize It is STILL Beginning and STILL Struggling to Take Shape.

As the years progress California’s qualm to legalize weed takes on more angles than I think most are aware of. I am very interested in hearing all sides of the debate, as long as honesty is adhered to by those proposing how to handle the topic. I don’t think the argument here is not about, and has not ever been entirely (since 96) about, IF it should be legalized, but more importantly, HOW. Many Californians I would argue want the government to stay out of the legalization terms. Taxes, funding, regulation, etc. This is because many Californians are so detached from government that they don’t want to trust them with what is currently California’s last untapped, and possibly most profitable asset. I know that is not realistic, as do many others, thus you have the most loyal marijuana advocates voting not to legalize the herb in California. Here is a very interesting look at the subject from my brother Eli Barry. This is his very interesting work.

First Contact in a Field of Dreams

My fingers locked up; shaking uncontrollably as I pulled with what little strength I had left. Using my stomach muscles I forced myself to swing to where my foot could get a grip on the rocky cliff side. I felt my body weight pull me back in the other direction, Noooo! The rocks crumbled beneath my feet, clicking a clacking as they sped down the steep slope. I swung back to my original position. Hmmm…. I was so close to the top. A feeling of desperation came over me. This was it. Using only my arm muscles I flung myself straight up, and grasped the jagged overhang. My left hand latched on to the edge, while my right hand slipped away. I dangled, thousands of feet off the ground. I slowly shifted my body weight and began to swing back and forth, getting closer and closer with my right hand. Yes! With both hands hooked like bat claws on the overhang, I pulled myself up, planted my knee on flat ground, and rolled onto my back. I did it! A great sense of accomplishment came over me. I scaled the cliff no other man had scaled, the Flat-Top Mountain, of which so many had died attempting.

After catching my breath, I sat in the grass staring off the mountain, admiring the view. I pulled out the joint I had been saving for when I reached the top and began to spark it, when a gust of wind blew it right out of my hands and off the cliff.

“FUCK!!!” I yelled, and rolled over. I set my gaze in the opposite direction, not where I had came from, but where I was headed this whole time. Nothing could have prepared me for what I saw next…

The whole top of the mountain, something like a small flat valley on the highest peak, was overgrown with what looked like weed plants. I couldn’t believe my eyes. These weren’t your run of the mill weed plants though, the leaves were a turquoise blue and the hairs on them grew in all different colors, from bright orange to dark purple, and some a light green color, yet all still had the white tips. The crystals were unbelievable, sugar coated like a powdered donut with others having long crystal heads, looking as if they were covered in brown sugar. A new- found energy consumed me, I ran to them, rubbing and smelling each one, they all had such unique and potent smells! Now I knew I couldn’t smoke these plants right away, for they were not dry. I could, however, collect the sticky resin on my hands and roll it up, then smoke it in my pipe! I began rubbing all the top colas, going forth with my plan.

The first hit of this finger hash was the most euphoric head rush I had ever had, my whole body began to feel light as if I was in a helium balloon suite. I sat and admired the view.

“Through perseverance and strife your life had led you it seems,

to the top of my crop, and your own field of dreams.” Said the little bluish gray man sitting next to me, wearing cloth materials that I had never seen before. My mouth just hung open; I was too high to move. Was this shit real?

“As confused as you may be your mind speaks the truth,

you’re smoking my plants, is that not enough proof?”

What the fuck? “Why do you do that?” I said, referring to the way he talked in rhyme.

“The mind contracts and retracts, we all act and react.

The rhythm inside is where the soul resides

and to become harmonious with it

one must display it exquisite.

You’ve kept rhythm when you step,

your breath when you’ve slept,

the blood flow all combine

to make your soul glow and shine,

so it is only right that the words you have sung

carry rhythm too, as they roll from your tongue.”

It was clear this little dude wanted me to rhyme too, I think he was in my head or some shit, maybe I was just high, I thought before I spoke…

“Do you want a hit, of this dope ass shit?” I said and laughed as I passed him the pipe. He took the pipe, the hash began to glow and he inhaled without using a lighter, then he proceeded to cough.

“So tell me human being, why have you come to my field of green?”

“I don’t know, a lot of people tried, they all turned back or died, I needed a sense of accomplishment, cuz my life really ain’t never been about shit.” I said, trying to keep the rhyme, “If you’re really real, and you’re really right here, why have you never revealed yourself, um, to others, just so we’re clear?”

“Humans are dumb, we’ve been watching since the start,

instead of uniting they tear each other apart.

They judge each other for stupid reasons like skin pigmentation,

poverty levels and cultural relations.

They have all the knowledge on their portable screens,

but instead of learning they waste it on fictional dreams.

They have an abundance on this planet, enough to divide and feed all,

but the big wish to be bigger, and crush the poor meek and small.

We gave them technology not too long ago,

to advance themselves in ways they before didn’t know.

Instead of creating ships and renewable sources,

they spend on entertainment and military forces.

Fighting over currency, created for what,

so consumed with this power, gather it all up.

Not fit for galactic alliance, I’m sorry to say,

lust for power and greed will mark the end of their days.”

Damn. He laid it down! But I had one more question, “So if we are destined to fail, and beyond being saved, why are you here on this planet full of decay?”

“Well that, my friend, is simple and very plain to see,

Earth has the best weed in the entire galaxy!”

Income gaps causing lower quality of life

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The Eviction of Dorothy Morris

Eviction of Dorothy Morris

This morning, my constituency contacted me to help bring awareness to the eviction of Dorothy Morris. Dorothy is an 83 year old grandmother who has been living at her residence for many years with a section 8 subsidy. She is being ordered to be out of her residence, a senior living center (Sacramento Manor), by Jan 2^nd 2015 (next month). This is begging a lot of questions, the most important of which is how ethical is it for a property owner to evict a tenant based entirely on their legal income. Dorothy has not missed a payment or otherwise had a notice that her income would be reduced to a point that she could not afford to pay her mortgage. The property owner has decided that they no longer wish to accept section 8 subsidies thus requiring Dorothy to be displaced immediately after the holidays. As a property owner myself, I can understand that a property owner wants ultimately to decide who, if, and how, your property is utilized. I would understand if they decided to tear down the senior living center and put in a new Bingo hall. Not saying I would like it, or agree, but logically, I can see that argument making sense. This however, is not the case here. The senior living center is going to keep on as it is. It is only deciding that those like Dorothy who’s rents are subsidized by section 8, are no longer worthy of residency.  I could logically understand if the apartment complex decided to no longer accept section 8 applicants for whatever reason they determined. The right to a profit and an identity for a property owner is valid. However that right has to be put in perspective and be guided and ordered by principles. In this case, I would conclude that Dorothy’s right to a residency that exists for that purpose would rank higher in the order of rights that include those of a property owner. There seems no valid reason to cause Dorothy and other existing section 8 tenants of the Sacramento Manor such hardship.

The second part of this situation is that this sort of going on happens every day in California, probably thousands of times over. What happens to devalued populations, poor, elderly, disabled, etc., on a regular basis is highly unethical. However, because such populations are trained to take it, and it is a normal response for the public to see this type of treatment is commonplace. To see Dorothy take a stand against such accepted practices is commendable. Furthermore, those agencies who have come to her aid, not because they will get a grant, or a promotion, or some type of benefit, but because it is the right thing to do, provides us all inspiration and hope. I told Dorothy that she is very inspirational, and in turn she said the support that she had been receiving was a blessing. There is something to be said for the virtues one gets for caring about all of their neighbors, but especially those being the target of institutional bullying.

The final point to take away is that there should be more of a safety net for section 8 renters (already at risk for a loss of housing) when it comes to their housing situation. If that means that laws to protect section 8 renters already established need to be built upon, then so be it. Sacramento manor should have been required to transition Ms Morris into another situation if they felt that strongly against accepting her money. Without trying to propose actual laws or rule changes here, I will simply say that as a group, figuring out how to handle such cases as this should not be nearly as hard as, say, inventing microwave ovens, and we accomplished that half a century ago. Let us not make things harder than they have to be for the elders of our population.

Crooked Face News

Joseph Barry
Politics of the Underrepresented
Stan Oden
Fall 2010

The Cat in the Hat
I don’t want to be here. I’ve always wondered, “why not?” Why don’t I want to be here? Why do I feel so different? I like pizza and sports. I like freedom and fast cars. I love California beaches in the summer. I want to work and play hard. I want to drink a beer while I tend to my bar-b-que and watch fireworks on the Fourth of July. Why do I feel so un-American? Why am I so uncomfortable with myself in relation to others? Why do I feel like an outcast? Could one very minor aspect of the whole me be at the epicenter of such intense feelings? Could my wheelchair, which is equal to my socks as far as personal characteristics go, be the cause of such mass hysteria in my life? Let us deliberate.
I was born in California during Jerry Brown’s 2nd term in 1978. It was a time in which the technology era was just beginning to sprout, civil rights movements had been in full swing and were obtaining results, and society was embarking on waters yet waded on both social and technological fronts (we will come back to this). I was born a healthy child, all of 22” and 6lbs 10oz. In 1981, all of that changed. While playing by myself at the babysitter’s house when I was 2 ½, I broke my right hip. “We had took you to the doctor 2 weeks prior, because you were having pain in your knee, but the doctor never looked at your hip,” (Brown). I went to the hospital, where my parents were advised mistakenly, that I had bone cancer throughout out my body and would not live past 90 days. This incorrect diagnosis began my lifelong journey into a world of oppression, pain, fear, and hate. Between 1981 and 1987 I endured countless broken bones and 13 major surgeries to my lower extremities (ages 2-8). I can still remember the smell/taste of the anesthesia given to me before the first 12 of my surgeries as a child. Deformities to my face, arms, legs, ribs, and back began to slowly develop. The diagnosis of cancer however turned out to be false. Since then I have been re-diagnosed 3 times and still there is debate as to what condition, I actually have. My condition causes my bones to form legions on their own that deform and break easily. Despite the hell that I went through as a child, I always was and still am, very thankful and happy to be alive. In the past I may not have been given that chance as I will discuss later.
As I began elementary school in Reno, Nevada, some crutch use and a limp evolved over several years to a wheelchair, at first part time and then permanently by the 6th grade. This evolution was mirrored by an increase in ridicule and social torture from my peers and fellow students. I knew that I was different. All sides of the demographic rainbow made it a point to uniformly single me out. Blacks, Whites, Asians, Mexicans, girls, and boys all came together to agree that I was unacceptable. I knew I was different, but I felt normal, aside from the chronic pain. I never realized how different I was until I looked in the mirror, or displayed my deformed legs at a public swimming pool. Then I would have some visual evidence to base my conclusions regarding how different I actually was. Part of me often felt that, “It isn’t that bad. You should be proud. You are worthy and handsome considering the circumstances.” However, another side of me felt disgusting and shameful. As a child I saw my mixed responses to my own assessment of my self-worth, in part, as a result of the assessments placed on me by others. I did not know the historical context of my situation. I was not taught disability history in school. I did not realize that the world has made a long practice of ostracizing those who are different, especially persons with disabilities.
The attitudes and beliefs held by society today toward persons with a disability are the result of a plethora of variables. By definition the term disability implies a sort of inferiority. There is much debate as to what the correct and uniting term should be. Furthermore it is important to note that the disability characteristic faces a sort of double prejudice. The quality that is characterized as disability has been used to be the valid reason of applying prejudice to other oppressed populations throughout history. Theories used to oppress Blacks, Jews and Women (just to name a few) were often based on beliefs that these populations were physically, mentally (or both), impaired or inferior. Disability was used as a valid reason to marginalize minorities from obtaining equality in society. This history coupled with the prejudices aimed at actual persons with a disability, is what I would refer to as the double prejudice. We however are going to focus on the history because it must be understood what that history is before we can discuss other variables further. We must understand the historical context that supported the environment that led me to feel such widespread rejection by society in 1984.
The world did not wake up on November 26th 1978 and decide to give me and others like me, a hard time for the rest of my natural life. There was not a sudden shift to treat persons with a disability negatively and set up barriers to their inclusion in society. Barriers were not built. They were there from the beginning. Today’s attitudes are not popular attitudes. Today’s attitudes have roots that are very deep.
The term, “idiot” was used by ancient Greek society to refer to people with intellectual disabilities. Hippocrates (460-357 BC) was the first westerner (argued to be the first person) to conclude that disability was not the result of some divine or spiritual cause, but rather a biological/medical quality. During this same time roughly, Aristotle, the great Greek scientist/philosopher, argued that persons with deformities should not be allowed to access life. He is quoted to say, “As to the exposure and rearing of children, let there be a law that no deformed child shall live,” (Minnesota Governor’s Council on Developmental Disabilities). This era of Greek enlightenment known for its great contributions to science and philosophy, also laid the groundwork for the next 2 millennia of injustice for persons with disabilities. Up to and through the 16th and 17th century, abandonment, murder, imprisonment, and mutilation were normal and acceptable responses by society toward persons with disabilities. In some cases, as with ancient Sparta, it was the law, “abandonment of deformed and sickly infants was a legal requirement” (Minnesota Governor’s Council on Developmental Disabilities). As you will see, when I say that I felt lucky, and happy to be alive, it has a literal meaning that elicits very intense emotion among those that I represent.
In grade school, I was drawn to another boy that, to me, shared very similarly, my plight. His name was Joseph Johnson (or possibly Joseph Jackson, my memory fails to be 100% accurate) and he was the only pure Native American child in the whole school. He came from the Paiute Tribe, which is known to be one of the toughest Native tribes west of the Mississippi (Scalping was a practice of the Paiute Tribe that carried a legendary connotation of Native pride and toughness). He would often come to class (I remember his 2 long shiny black braids always perfectly in place), bandaged and casted from having to fight the other kids that would constantly ridicule him. All told he was a very tough 2nd grader. Stories went around the class about Joseph being able to take on 2 or 3 5th and 6th graders at a time. He was very soft spoken but could be angered after enough instigation, into fighting with fury. He was expelled after breaking another boy’s nose. I wonder if the kid who broke Joseph’s ribs was expelled too. I remember Joseph’s silent but prideful spirit willing to fight for his self if need be. Inside, I too hoped to be as brave when facing the world that seemed to be laughing at me as well. When researching, the uncovering of the consistent and long lasting history of instigation and heckling of disabled persons by those considered normal brought my mind back to these times.
It is argued that the current idea of imprisonment (not forced labor or holding of persons for that reason, but rather the sitting of persons in cages to protect society) was born out of the ancient policies toward persons with disabilities. Often times, people who were mentally and/or physically impaired were considered a danger or a burden to society and put into cages that were often placed in public view (usually at town centers). People could feed and offer charity to the caged persons as they wished. Heckling of these caged persons was a normal and acceptable practice as not only were these cages meant to protect and serve society but they were often used for entertainment purposes. According to the Minnesota Governor’s Council on Developmental Disabilities, “These cages were known as idiot cages.” The official practice of idiot cages is said to have curtailed around the 16th century, but as I stated before to some extent the practice arguably continues today. The ending of idiot cages by no means meant that the heckling and public ridicule of persons with disabilities stopped or even slowed for that matter.
Phineas Taylor Barnum was born in Connecticut in 1810. Barnum is considered the father of the modern circus and the freak shows in America. Popular culture in the United States was very much based on these shows for a long time from the early to middle 1800s through the early to middle 1900s. Huge crowds would pay to see persons with obvious physical disabilities such as Tomb Thumb who was a dwarf advertised to be all of 25 inches tall. According to Encyclopedia Britannica, “In 1871 he established the Greatest Show on Earth, a traveling amalgamation of circus menagerie, and museum of freaks, etc.” (pgs. 124-125). The circuses of the 1800s popularized the notion that persons with disabilities were freaks and objects rather than human beings with feelings and beliefs. This was an important time significant in the development and early stages of U.S. popular culture. This objectivity or dehumanization of persons with disabilities is often still present today.
As I progressed through school and got older, my condition progressed as well. The deformities and broken bones became so prevalent when defining me that by the time I was in 9th grade, I was ready to quit school. I remember strangers/classmates would talk to the person nearest me when wishing to address me. I was on object not a person, “What is his name? What happened to him? Can he walk?” were all questions regularly posed to someone other than myself while I was physically present and coherent. In 7th grade I had changed schools due to domestic issues. On my first day at my new school in Sparks, NV in 1992, a fellow student, whom I was instructed to sit by from my instructor, stood up and said to the teacher, “I am not sitting by that! I do not want to catch whatever it has!” Upon enrolling me in high school at Kennedy High School in my mother was seeing firsthand how I was being objectified, now even by school administration. The school continuously made and effort to show her how they were unable to accommodate the needs of students like myself. To them, I was not a student, I was a cripple. Over a one year period with my education suffering, I was ushered (for lack of a better term) to another school. The school’s inability to see past my wheelchair did not allow me to be taken seriously as a student. By the time I had reached 11th grade I was a high school dropout and involved in a life of crime.
Nearly all, if not all, accounts of history and making of public policy prior to 1800 were written by persons not considered disabled. Prior to the 1600s in Western culture it was commonplace for infants or children with abnormalities to be literally placed outside to face the elements; Most of the time the child perished. If a child did survive, it would sometimes be considered a miracle and be let back into the home. This however, was usually not the case. Children who survived the elements often grew up on the streets and became beggars and/or thieves. Religion played a major role in the views placed on persons with a disability in Western cultures. Christianity and most other religions of the day preached that God is all good. A person created abnormally must be the work of the devil or of evil doings. Prior to the 1800s these abnormal people were thought to hold evil or bad luck. Tod Browning states in 1932, “In ancient times anything that deviated from normal was considered an omen of ill luck or representative of evil.”
The birthing of what would become the U.S. during the middle of the 2nd millennium after Christ brought Christianity to the New World. Devout Christians and most Christians after approximately 1800 were of the viewpoint that pity and charity should be the response toward persons with a disability. Christians often believe God chose persons to be made with a disability so that they could serve a life of humble suffering. God wants them to be feeble and weak as a way to humble and test his followers, especially the healthy ones. It was mostly Christian influences that started the influx of the institutionalizations that began to take place during the 1800s. Institutionalizing persons with a disability became very popular during the 1800s. The life of a person in America up until the 20th century often rested somewhere in-between abandonment and being out-casted by ancient methods, to being abused and coddled into helplessness by Christian methods. Institutions and their treatment methods, it could be argued, supplied the general public with the satisfaction of both abandonment and charity toward the disabled.
Both my mother and my father would describe themselves as devastated by the news in 1981 that I had bone cancer and my death was imminent. My diagnosis marked a very unhappy time in their lives. I was the oldest of 6 children but only my brother, Kevin and I shared the same 2 parents, and were relatively close in age. During the time my condition was causing me the most problems (1981-1987), I was being raised by my mother. I lived with her and my little brother, Kevin, who was also very young at the time.
My mother was a very beautiful, yet vain woman (I speak of my mother with every bit of love and respect that I have in my heart). You could tell that she was the type of person that really looked down on disabled people before God put me in her life. As a child my mother gave me a lot of strength and encouragement. She was a single mother and I believe that she too went through, to an extent, everything that I went through. Having been a single father myself, I cannot imagine the pain she felt watching her first born suffer as much as I did. For this reason I try not to fault her for her shortcomings in raising me. Had anyone been put in her situation, I think that all of the negative aspects of her character would be a normal response. My mother was there for me through every surgery, every scream, every muscle spasm, every time I was sick from drugs, and anytime I awoke from under the knife she was there. My mom told me to never give up, and to, “Never say I can’t” (Brown) do something. What my mom lacked in being able to associate with my disability, she made up for in loyalty and inspiration. I am certain that the inspirational things she told me were due to her belief in Women’s Rights. My mother was cut from the molds of Susan B Anthony and other Women’s Suffragists. She did not settle for less from men and strongly stood against stereotypical roles for women in and out of the home. Being a woman in the 20th century really held her near to these qualities.
As I said before my mother also had a very negative side as well. I am not sure if this was due to the pressures she was under from society, her own personal history/beliefs, or as a way to motivate me or prepare me for the ways of the world in which she was readying me for. It is possible that it was a combination of these factors. In addition to her inspirational messages, she would also tell me that I am helpless. She would say that I could not do anything but wash dishes. She would tell me that a loving and/or sexual relationship was not for people like me. My mother had a bad temper and I often thought she did not mean the things that she would say. Nonetheless, after fighting this battle with every path I crossed, I often found having to fight this battle at home to be quite overwhelming. By the time I was 15, my mother and I had mutually agreed to part ways with our living situation. She went back to Reno, and with my Dad not being part of my life, I stayed in Sacramento to live with friends off of a modest income of $180.00 per month. To this day the dynamics of the relationship that I share with my mother rely heavily on aspects of my disability. I still feel that my mother has a hard time seeing past my disability when she sees me. I feel that these pressures on our relationship are reflected heavily by the history of persons like me, especially up through 1990, and the current social standing of persons with a disability.
During the 1800s persons with disabilities not only had to deal with the dynamics previously mentioned as coming from ancient history and Christianity. Also as previously mentioned they were dealing with the dynamics being placed on them from U.S. culture. This culture was based on two main levels; political and popular. Both often went hand in hand and fed into each other. We made reference earlier to the popularization of the circuses that formed many people’s ideas about persons with disabilities. These ideas not only formed the ideas placed on these persons, by the general population but also formed the ideas within the disabled community itself. The stereotypes transferred themselves into actualities for many persons with a disability. After the death of Phineas T. Barnum persons with disabilities, who were often homeless and/or beggars any way, began to use the newfound notoriety circuses gained them, as freaks and oddities, in their panhandling methods. The situation began to reciprocate itself; stereotypes are fed into by actions and behavior is feeding into the stereotypes. By the mid to late 1800s panhandling is an epidemic in the disabled community. Terms such as handicapped begin to be born out of this beggar culture. The cap or hat was used to collect earnings for begging. People often missing fingers, limbs, or having other strange deformities would use this quality when collecting money in their cap. Political response was soon to come.
During the 2nd half of the 19th century, cities responding to the panhandling problems began to enact what were known as “ugly laws” (Kraut). Ugly laws were laws enacted usually in big cities and applied strictly to persons with disabilities. The laws were aimed at deterring panhandling, but were written so that it was illegal for persons with obvious physical disabilities to be seen in public spaces. The laws also made it illegal for immigrants with disabilities to migrate into the U.S. The laws were an open act of discrimination practiced by the government. They further pushed the average person with a disability into a position where discrimination and hate were acceptable public responses to their existence. The Anti-Defamation League states in their brief assessment of disability history, “In the 1800s, people with disabilities were considered meager, tragic, pitiful individuals unfit and unable to contribute to society, except to serve as ridiculed objects of entertainment in circuses and exhibitions. They were assumed to be abnormal and feeble-minded, and numerous persons were forced to undergo sterilization. People with disabilities were also forced to enter institutions and asylums, where many spent their entire lives. The ‘purification’ and segregation of persons with disability were considered merciful actions, but ultimately served to keep people with disabilities invisible and hidden from a fearful and biased society” (pg. 4).
The 1900s namely WWI, brought about the true influence of the Industrial Revolution, science and technology would make huge advancements, and political and social movements would make huge strides in the fight for equality. Changes came slowly over the century, mainly for reasons that we discussed earlier regarding the double prejudice, for persons with disabilities. During the first half of the century there was what was known as the Black Stork Movement. Science was making an argument that persons born abnormally should be euthanized or let die. The Encyclopedia of Death and Dying is quoted, “From 1915-1919, prominent Chicago Surgeon Harry Haiselden electrified the nation by allowing or speeding the deaths of at least 6 infants he diagnosed as physically or mentally impaired.” This sentiment was covered by the media in both print and by film and was at the center of the nation’s attention for several years prior to 1920. The doctor played himself in the movie, The Black Stork (1916). This part of the nation’s history is not spoken of often as issues of euthanasia and eugenics were debated as to their worth as a national policy. Euthanasia and eugenics provided the scientific basis for racial and cultural cleansing, and helped to plant the seeds for Germany’s Hitler and the beliefs that helped fuel the holocaust.
By the 1930s the Great Depression was grasping the nation. The nation’s problems were increasingly being seen for their true causes (poor governmental regulation of big business) and it was increasingly harder to blame minorities for the average person’s struggles. Veterans from WWI were helping spearhead a change in the way persons with disabilities were seen by the public. For the first time in history a concerted effort for persons with disabilities to unite (however minimally) was underway. The movements of eugenics and euthanasia were losing steam in the U.S. and a new president was going to address the problems of persons with disabilities in a way that had never been before. Franklin D Roosevelt became the first acting president to have a disability in 1933. Roosevelt was a leader and pioneer in disability rights. Roosevelt was paralyzed. An argument exists as to why he was paralyzed. The longtime understanding was that he contracted Polio. Some say it was another disease. A small number of historians argue that he may have been paralyzed by an accident. Roosevelt set up many social systems for persons with disabilities that remain in effect even today, such as SSI/SSA and State temporary Disability Insurance, as part of the New Deal. However Roosevelt still saw disability, even his own, as shameful and as a flaw. He went out of his way to hide his disability. He would appear in public as standing and would not allow photos of himself to be taken that included his wheelchair. I would pose Roosevelt as both a hero and a hindrance to the rights of persons with disabilities.
The mid 1900s brought about the Civil Rights Movement that continued to lay the foundations for the Disability Rights Movement. Congress began to officially extend civil rights to persons with disabilities in 1973 with the Rehabilitation Act of 1973. “The Act prohibited discrimination on the basis of disability in programs conducted by Federal Agencies, receiving Federal financial assistance, in Federal employment, and in the employment practices of Federal contractors” (Wikipedia). The Act laid the groundwork for the Americans with Disabilities Act of 1990 (ADA). The ADA, “affords similar protections against discrimination to Americans with Disabilities as the Civil Rights Act of 1964” (Wikipedia). This made discrimination illegal in most circumstances. The ADA was amended in 2009 to be applied more broadly. The disability Rights Movement is still brewing and most within the movement feel that it has not yet climaxed. Today persons with disabilities still face widespread marginalization in America. “People with disabilities have had to battle against centuries of biased assumptions, harmful stereotypes, and irrational fears. The stigmatization of disability resulted in the social and economic marginalization of generations of Americans with disabilities, and like many other oppressed minorities, left people with disabilities in a severe state of impoverishment for centuries” (Anti-Defamation League, pg. 4).
This history is quite depressing but does offer hope for the future. With the advancements in both social and scientific realms during the 20th century, there is a now a base to work toward the future. The history presents a very big and daunting challenge to the cause for equality for persons with disabilities however Disability Rights is an issue that still must be addressed. Children born with disabilities are still bearing the brunt of our nation’s history of oppression. Lives are acutely affected by the social processes that influence those persons with a disability. I will finish with my own example and beg my reader to realize that we need to continue to work on fixing these social inequalities so that no more persons can attribute their lack of inclusion to the neglected policies of our nation toward persons with a disability.
The constant reinforcement of worthlessness led me to believe that society as a whole had rejected me. My opinions, my beliefs, and my life seemed not to count. To this day these feelings haunt me. In my younger days I would demand respect from people by carrying a gun. Having a constant frown was normal for me for years at a time, because I was unhappy with life and I wanted everyone to know it. I wanted to convey to the world that the feelings of un-acceptance were mutual. The world did not approve of me; or me of it.
In 1997, shortly after turning 18, I found myself in a Nevada prison on weapons and drugs convictions. At that time I considered myself a sworn enemy to America and America an enemy to myself. I blamed my situation on a lack of opportunities and an abundance of elaborate social and political systems aimed to oppress me and others like me by any means necessary, including imprisonment. I had never had a job, nor did I want one. Any interviews I went on ended with me being nearly laughed out of the building. That being said I did not like prison at all. I decided that I would rather die than be locked in a cage (conversely, I did not want to die either). So now this was a fight for my life. I tell this story of myself to apply the histories of the U.S. to an actual outcome. Not that our history always has this effect on persons with a disability but this history perpetuates a negative outcome far more than it combats it. I want my reader to feel the ramifications of not having a history as I knew very little to nothing, of this history before this assignment (I am 31 years old and one semester away from obtaining a BA). I want you to know that our tangible position in society is often dictated by our culture’s history. I am not driven by greed. I am not driven by forces to improve or clear my name. I am not driven by money. I do not have a hidden agenda. I am driven by reality. I am the cat in the hat.
 
Works Cited

Anti-Defamation League. Equal Treatment Equal Access: Raising Awareness About People with Disabilities and their Struggle for Equal Rights. Anti-Bias Lesson Plans and Resources for K-12 Educators. unknown: unknown, 2005.
“Barnum, Phineas Taylor.” Encyclopedia Britannica. 1959.
Brown, Leslie L. Interview. Joseph Barry. 5th November 2010.
Freaks. Dir. Tod Browning. Perf. Tod Browning. 1932.
Kraut, Alan. “Book Review: The Ugly Laws: Disability in Public.” Journal of American History (2010): 214-215.
Minnesota Governor’s Council on Develpmental Disabilities. “Parrellels in time: A 6-Hour History of Disability.” 6th November 2010. :Minnesota Governor’s Council on Develpmental Disabilities: Promoting Independence, Productivity, Self-Determination, Integration, and Inclusion. 5th-6th November 2010 .
Pernick, Martin. Encyclopedia of Death and Dying. 2010. 4th November 2010 .
Wikipedia. Americans with Disabilites Act of 1990. 6th November 2010. 6th November 2010 .
Wikipedia. Rehabilitation Act of 1973. September 14th 2010. 3rd November 2010 .

The Disability Vote

There is a push getting underway to “Ramp Up the Disability Vote.” Historically persons with disabilities have been largely left out of the political process. Without making this a blog about disability history and oppression, and all things horrible as to why marginalized persons are left out of the political process, let us me just say that I personally take my right to vote very seriously. I could make this a blog about why us minorities should take pride in voting at every opportunity possible, especially considering the election of our first black president ever: A feat that I never thought I would see unless years from now, when I became very old, but nonetheless was elated to be a part of, and able to see such a feat in my lifetime.

Now to the point;; of all minority demographics, race, age, sex, and sexual orientation included, persons with disabilities, especially those also encompassing another of the before mentioned demographics, are of the very least included groups in the political process. We are not represented, for lack of financial interest, other than a picture of burden often painted by politicians, we are often not even given a role in the metaphorical play that is the political process.Yes, it is true that sad stories still exist, politics and disability are a 21st century societal shortcoming and one of those still existing sad stories. Yes the situation is going to get better and in the years to come this backwards social construct will no longer exist. However this is going to be another one of those long drawn out social processes that will play out much like the time frame from the African American emancipation – to the keys to the White House.

The issue of disability will be the next 100 year battle into the future between good and bad, and what an ethical human social race will mean to the average citizen. That is why it is important for all minorities, and especially minorities that include those with disabilities, to unite in some form or fashion on issues of politics and voting. If we continue to exclude ourselves from the process, the stigma attached to those with disabilities will only become stronger, and social participation even that much more difficult. Steps backwards for social groups already marginalized, almost always begin at the polls.

This blog is meant to inspire all who read it to vote, including and importantly, those with all types of disabilities. We have to embrace love as a political concept and hold politicians and lawmakers accountable, not for anything else but showing less than love to thy neighbor, for whom they are ultimately responsible to.

If you wish to organize with me for the upcoming November Election to not only ramp up voter turnout in general but in the process specifically that of the disability vote, please feel free to contact me @ 916 225 5634.

SSI Advocacy on horizon

SSI/SSP Advocacy Conference Call

Today I am participating in a conference call among community leaders geared toward a potential advocacy venture at the state capital regarding improving the living status for persons living on such programs specifically as SSI/SSP. Currently persons receiving such aid are living at 97% poverty. What that means exactly, I don’t know. But what I can say from not only experience but also from the testimony of others, is that persons living such a way are not only having trouble paying bills, they are also having trouble keeping a roof over their head and food in their stomach. What this might mean to people who do not immediately draw their income from SSI is that there is understandably a notable propensity for homelessness, blight, and an increase in crime for their neighborhoods and cities. I personally do not prescribe to this type of thinking; rather we should look out for others because not all people are in bad positions because of their own wishing/doing. Circumstance sometimes gets the best of all of us. We should hold our brothers and sisters up when they are weak because we would only wish that others would do the same for us should we ourselves fall on times that are less becoming. What was accomplished during this call was to organize a team of persons that are dedicated to the upcoming venture and to set a future date to discuss logistics of a potential venture at the state level