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The balance and refulgence of medicine between the social model and the medical model of disability studies; new options

Medical model vs. Social model of disability studies. A psychology / medicine report on new technologies in prenatal testing (archival research from 2018).

jacobstotler
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The balance and refulgence of medicine between the social model and the medical model of disability studies; new options

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  1. (STOTLER, 2018) 1 The balance and refulgence of medicine between the social model and the medical model of disability studies; new options within technology and prenatal testing. Jacob Ryan Stotler April 10, 2018

  2. (STOTLER, 2018) 2 The balance and refulgence of medicine between the social model and the medical model of disability studies. New options from technology of prenatal testing. The progressive movement is a term known in disability studies that describes a time that advocates in American nationalism had stressed that “individuals, businesses and the government all had a responsibility to work together to attenuate the impact of inequality and injustices that were associated with early stages of industrialization and urbanization”. (Berger, 62). The following report is intended to bring light to discovery of the futuristic expectations of quality of life, and the sciences behind the progressive movement, though in the modern age. The paper will reflect many aspects of society, and not just the view on medicine from the disabled alone. The progressive movement may in fact be evolving into the fields of medicine geneticization1, and disability prevention, because of the divine and social inequalities and the permanent, disproportional quality of life sometimes associated with some major disabilities. JUSTIFYING GENETICS JUSTIFYING GENETICS Genetics as a topic for movement in disability studies would not be a “quick” win, with experts, activists or even the disabled in general. Justifying genetics must speak to people more in a way of movement, rather than the words intending to make one. The movement to bring genetic technology as a milestone of intellect, and sophistication in disability studies, and not as 1 Geneticization – tendency and inclined reasoning behind holding or using genetic(s) as explanations.

  3. (STOTLER, 2018) 3 a target or risk threat to the disabled, would be one of the mainline / necessary arguments to properly depict the sciences involved. Genetics and mainstream sciences based upon disabilities are a quite touchy subjects to disability activists and experts. While one of the authors on disability issues Simi Linton makes one point in hopes of conveying the potential that she sees in genetic science, she makes progress for other disabled, or disability activists and/or experts with the same writing. She writes, “this new science, genetics, will be air of authority and seeming rationality to these decisions (disability rights) that will be very hard to fight”. (Linton, 245) The depths of this truth is the immaculate phenomena that is taking place in science and in the medical field now. There is cutting edge technology in these genetic sciences including the potential function of using genetics for futuristic gain, and futuristic medical and health advancement. The horizons open from these technologies because of the gain of advantages in health, especially regarding prenatal testing, and localization of the potential in DNA testing . There are still others that will not offer any open ear to the fight and breach of the advancements that genetics bring to life of the future. While perhaps a majority of writing in disability studies does otherwise; many writers, and authors portray themselves in presentiment and opposition to the technology of genetics, and prenatal testing (and concomitant procedures). This is to reflect many of the common vocabulary words and phrases of disability studies targeting the idea of disability pride and culture being attenuated due to medical advancement.

  4. (STOTLER, 2018) 4 As is said by Cuzar in an essay printed in Barriers and Belonging, he brings a prime example of a boundary that is brought to society regarding disability. As he tells his story, he touches on one of the well known applications in disability studies of the ideology of ability. This application is such that to disabled people, some ideas target the disabled, because one view from society believes that people with disabilities are somehow inferior, or stricken to a “lesser quality of life”. Not only this but the “ideology of ability” and ableism in Cuzar’s article refer to society’s efforts to the disabled, as “disabling”. (Jarman, Monghan, Harkin, 161) It is hard to imagine feeling this kind of pressure from actions and ideas, that seem to have be born to strictly assist. Another aspect of the paper can be brought from the writing of Thomas Couser. Couser brings a very valid point exactly here in this topic of making medical advancements, bringing attention and asking for articulation within these topics. Especially so, on the level of the social model of disability studies. Couser asks, “who is an authorized representative of work? While some people can associate with groups due to having a disability, and others have been elected into positions to talk about these issues. But, who is, or are all members of a group authorized to speak for that group”? Couser continues to describe that, “if one thing matters about the kind of “lobbying” (that one member does for a group), that element of importance is ethics”. (Couser, 21) Couser brings us to the justification of this report as this guide is not a priceless artifact of a social system lobbying against the disabled, but rather a scientific conglomeration of medical technology, and newly found prenatal choices that are available to all civilized parties, now on the dawning of the future. The writing and author, no less claim to be leading an entire social

  5. (STOTLER, 2018) 5 system into a social movement against disabilities, but the work here is designed to educate people to the degree in which they feel confident in the issues that they will confront, living with, and sustaining a healthy pregnancy, intelligibly, until the very end. To divulge the caliber or revolutionary technology that we are talking about, we can compare genetic testing, and other prenatal testing with one the ideas written about in the Schwartenzberg articles. Patrick Dolan was a child with autism, and for nearly 11 years, there was no clear diagnosis for the child. The family recites “we saw over 100 doctors and we received only numerous diagnosis”. (Shwartzenberg, 11) By being able to identify disorders through genetics, and DNA, we then hurdle many other obstacles such as a clear, empirical and firm diagnosis. Not only does science undermine years of scientific analysis of the child, but we then remove any environmental factors and distractions that influence a diagnosis outside of the womb. The writing brings forth the contestation of disability studies, and numerous writers and disability studies advocates, to bring a social aspect that brings infallibility to the report’s actual intention. The major aspiration for the paper is to be legitimately accepted as an academically refulgent, and broadly justified education targeted at young and upcoming couples, and single women who face the all of the challenges of giving birth; raising and fueling a healthy pregnancy, and making rightful, and sagacious decisions on how to best administrate and articulate medical ability, within technology. The hope for the paper is to spark the idea of the same kind of “standardization” that was found in the laws regarding the ADA. When the ADA became an American household

  6. (STOTLER, 2018) 6 idealization of disability standards around 1992, people accepted this. Such that, the writer Alyse Ritvo describes in the book Barriers and Belongings, that she depended on such, (the laws of the ADA) while struggling with her disability status in college. Ritvo explains in numerous dimensions that now not only are the ADA laws and regulations accepted, but the disabled depend on these laws at times. People now depend on this technology (ADA laws and regulations) that were once inexistent, yet they are now a superb and reliable advantage to modern day American life. (Jarman, Monghan, Harkin, 26) The point that is being made, that there are major changes that take place in disability studies, and not all are welcomed at first, and not all seem to be a highlight in the lives of the disabled. Though, again, the goal for this paper is to be welcomed into people’s lives on the note that at times, movement and progress come from where there was once doubt and blindness. Ritvo continually described how much she depended on the regulations regarding the ADA. (Jarman, Monghan, Harkin, 27) This so because the ADA was put together in regards of not only accommodation, but technology, and technological advantage. There was technology that people needed, and it was recognized. There are technologies that people need, the paper is written for the chance of those technologies to be recognized and perhaps appreciated and exalted. (Jarman, Monghan, Harkin, 26) RESPON RESPONSIBILTIES WITHIN STATISTICAL MARKERS. SIBILTIES WITHIN STATISTICAL MARKERS. As of 2018, it is commonly portrayed that one in every 280 babies born (.3 percent) worldwide carry a genetic disorder or disease that could / can be detected for by carrier

  7. (STOTLER, 2018) 7 screening2. (Rochman, 22) Accordingly, 1 in 700, to 1 in 800 babies are born (exclusively in America) with a major chromosomal disorder, such as down syndrome. (Center for Disease control and Prevention, 1) One of the main delving fights for justice in disability studies is medicine, as it has been, majorly, throughout history. This, from the beliefs and pride written in the passages and reports of disability rights, and disability studies, the diehard insatiability in technologists to bring new treatments in medicine and caretaking; to the laws and arguments within contemporary nationalism that once fought for eugenics, and then appositionally, to the “Child Abuse Amendment Acts of 1984”. The “Child abuse amendment acts of 1984”, were also known as the Baby Doe amendments. The Baby Doe amendments required medical treatment to be served upon a newborn child, “unless the infant was likely to die regardless of such intervention”. Both serious, disabled relevant “movements” within society were later reprimanded and relinquished (in America) by American authorities. (Berger, 213) Both movements seeming extremities in the fight for health in American society. While arguments for medicinal prevention of disabilities is not (or not such in this case) targeted at the politics of appearance, or denigration, but naturally the argument is for preventative measures of inutility of major disabilities, and for more exalting lifestyles. The facts 2A “carrier screening” is a test that can identify people that carry a gene mutation. This is needed to identify if two parents both carry a gene mutation, because the recessive gene (a genetic disorder) is transferred when both parental parties carry a mutated gene. Carrier Screenings involve taking samples of saliva or blood. (U.S. National Library of Medicine, 1) (Know Your Genes Genetic Disease Foundation, 1)./

  8. (STOTLER, 2018) 8 of originating lifelong advantages for newborns, society, and further on, are thus held definite and premier goals in medicine. (Berger, 38) PRENATAL SCREENINGS PRENATAL SCREENINGS3 3 In a study of a newborn follow up program – no mothers had birthed children that had disabilities attributed by maternal behaviors. Though this is not to dim the actuality of “doing everything by medical expectation” / or by “modern rightful standards”. Modern expectations for pregnant women being such as: getting regular prenatal care; including various diagnostic tests, eating healthy, refraining from smoking and drinking, and over the counter and prescription drugs. Also having a baby at an age more younger than older, is a modernized call for health when thinking about pregnancy. Compliance of expert medical advice too is important. (Center for disease Control, 1) (American Pregnancy Association, 1) (Mayo Clinic, 1) An expert and author on pregnancy once had written: “Prenatal screenings, and selective abortions of defective fetuses are dutiful to regulate the uterine environment. The engendered scientific attribution of equal material (genetics) and unequal social burdens, attribute to man’s proprietary interests [for quality of life]. [This being true, perhaps] assigns to women the actual responsibility of pregnancy outcome”. (Rapp, 1999b,88) This writing clearly describes the one of the main importance of prenatal testing, and the redounding after prenatal testing, women hold the power in their pregnancy, and it seems that with deep interest, they are rewarded all of the 3 Prenatal- before birth (synonym: antenatal).

  9. (STOTLER, 2018) 9 major choices regarding their own pregnancy, especially regarding their own health and wellbeing. THE OPTIONS IN PRENATAL THE OPTIONS IN PRENATAL T TECHNOLOGY FOR DISABLITIES ( ECHNOLOGY FOR DISABLITIES (EARLY 2018) EARLY 2018) Blood based tests early in pregnancy can be utilized to identify and diagnose down syndrome, and other chromosomal faults .One of the newest technologies in prenatal screening is the blood test that can screen for both a gender of the child (deducting that there should be no Y chromosome in the pregnant mothers blood unless there is a male child), and also the test assesses the blood for DNA that signifies chromosomal disorders (through similar deductive reasoning). This test is called a cell free fetal DNA test (cfDNA). It has only been available, and by requests only, since the epoch of 2011. (Greenfiledboyce, 1) (Aria Diagnostics, 1) One contemporized form of testing is *CVS (chronic villus sampling). CVS is a procedure of drawing placental tissue from an expectant mother’s abdomen. The fluid gathered contains placental cells and a tissue present before fluid was drawn (culture media). Doctors/ obstetricians call the test “equivalent” to chromosome counting. CVS can diagnose down syndrome, and other major chromosomal disorders via Karyotypes. (Amniocentesis, 1) *In vitro fertilization (IVF) is another method to supplement the chance of a healthy pregnancy. This is a process of false insemination. Eggs are collected from ovaries, and fertilized in a laboratory with sperm . The fertilized eggs are then replanted back into the uterus. (Mayo Clinic, 1) IVF is comparable to ICSI (intracytoplasmic sperm injection) though as the name sounds, the artificial insemination ICSI takes place while the egg is still inside of the ovary. ICSI is used when semen quality or number is a problem. (Mayo Clinic, 3)

  10. (STOTLER, 2018) 10 Ultrasound monitoring is also a well known technology that could asses, identify or even diagnose certain problems or abnormalities of the fetus. Ultrasounds are a noninvasive, and non- radioactive form of using ultrasonic imaging (sound based) to asses nearly the entire fetus (excluding bones and certain activities of the fetus’s organs). Problems and identification of down syndrome can be foretold around the 12th– 13th week of pregnancy. Testing can be done by ultrasonic probe, both interior of the mother and exterior. (University of California San Francisco Health, 1) * Amniocentesis (Amnio for short) or AFT (Amniotic fluid test) is defined by American Pregnancy Association as a diagnostic test following an irregular “triple test result”4. AFT or Amniocentesis (performed between week 14 and week 20) is used to test for down syndrome / trisomy 21, cystic fibrosis, spina bifida, and undeveloped or underdeveloped lungs and some potential issues with other organs. Paternity tests can also be drawn from AFT. Amniocentesis is known to have a superior level of accuracy, though there is a .5 percent chance of miscarriage (due to possible infection, water breaking, or accidental induced labor). (American Pregnancy Association, 2) THE THE FUTURE FUTURE OF OF DIS DISA ABLITY RELEVANT MEDICAL ASSESMENTS. BLITY RELEVANT MEDICAL ASSESMENTS. Knowing or finding out possible medical or health issues while the fetus is still in the womb can do one of three things: 4 A triple test is a blood screen test, best administered around the 20th week of pregnancy. The blood test assesses the three substances, AFP (alpha-fetoprotein) a protein produced by the fetus, hCF (human chorionic gonadotropin) a hormone reduced within the placenta, and Estriol (an estrogen produced by both the fetus and placenta). Abnormal levels of these three substances may indicate the developing fetus has a chromosomal abnormality. (American Pregnancy Association, 1)

  11. (STOTLER, 2018) 11 1.A family or maternal parent can be forewarned about the struggles of pregnancy and within the life of the antenatal person. 2.The family or maternal parent and doctors can perform needed or chosen evacuation of the fetus. 3.The diagnosis, or genetic relevance to detrimental disorders can be identified for the earliest treatment possible. Early treatment in innumerable disorders may mean the difference between what is rehabilitative, and what is immedicable. These ideas are more sensitive than blaming the ill-mannered ideations of “the designer baby”, and fears of the innovations of genetic engineering. Many authors write about these possible “social risks” in disability studies. (Berger,217) A more stable thought in production is that of taking the disability movement “the celebration agenda”5 (Berger, 216) and making and altering this idea into the celebration of success in evolutionary medicine. This movement would be genteel and making these technologies a celebration of health would be futuristic. The future can vividly accept that the medical field and emanating scientists are confirming success by narrowing the struggles of the new born baby. Medicine battling institutionalization and lifelong health struggles is cleansing the futures of persons potentially facing a lifetime of melee, because of misconfiguration by genetic occurrence. The elephantine lead, and trust that the future has (or should have) in medicinal experimentation is multicultural. Medicine is always multicultural because progress in medicine is worldly relevant, chronologically relevant, and if not at the moment of discovery, within the weeks and years to come. 5 Celebration agenda - now the intention to bring celebration to disabled people because of their disability (Berger, 216)

  12. (STOTLER, 2018) 12 The founding ideas behind prenatal testing for disabilities (and others) are not eugenically based, nor are they support systems for tectonics of ill intention, they are the writings to breach the effectiveness and potential in rehabilitation to the contemporary time. Prenatal screenings and prenatal technologies are in a sense medicines and technologically based options, that can bring through cooperation, proper prioritization and technological instrumentation. CONCLUSION CONCLUSION Some transparent disorders from prenatal screening may lead to the advantage or the option of feticide6. Perhaps the fear or religious beliefs of this being a “wrongdoing”, may not be as accurate as science, and quality of life. With an unbiased opinion, and even though there seem to be minimal numbers of disabled activists that preach of disabilities making life unbearable of struggle, there seems to be a populated, quantitative and qualitative advantage of feticide when in fact the life could or would suffer an arduous and ongoing melee, such as a major disability or major chromosomal mutations. It seems indubitable that even activists for the disabled can argue for a better future of human life. (Young) *As a marker of reading through these futuristic methods of successful pregnancy, it is known that some of the prenatal screenings, and some tests available while pregnant hold a risk of miscarriage. Please make sure you ask of these risks before you strum the entire spectrum of prenatal screenings. Perhaps this too will be a technology that the future will bring: risk free prenatal testing. (Rochman, 1) 6 Feticide – synonymous of selective abortion. (Berger, 214)

  13. (STOTLER, 2018) 13 While it is known throughout the world that prenatal gender tests are available, perhaps prenatal testing for race, autism, developmental delays, depression and perceptibility for mental disorders and chromosomal disorders, are becoming yet more possible and more common.If we are not decorating around people’s feelings and emotions (linked with views on social pride and celebrations of being disabled), perhaps we are attempting to save vulnerability in humanity, and deliver the future advanced technology and medicine, and bring more reverence and veneration to people’s lives. Perhaps there will be acceptance of prenatal technologies even in disability studies, with proper due diligence and respect for growth and technology. Social morale as well as science and health, remain priority within these ever-evolving options.

  14. (STOTLER, 2018) 14 References American Pregnancy Association [Promoting Pregnancy Wellness].Triple Screen Test. 2018. Accessed April 14, 2018 from http://americanpregnancy.org/prenatal-testing/triple- sCFVcreen-test/ . Amniocentesis, CVS tests decline despite increase in number of older mothers." Women's Health Weekly 24 June 2004: 113. Business Insights: Essentials. Web. Accessed April 21, 2018 from http://bi.galegroup.com.libproxy.uwyo.edu/essentials/article/GALE%7CA118353137?u= wylrc_uwyoming&sid=summon . Aria Diagnostics Unveils New Prenatal Test. Professional Services Close-Up 9 Feb. 2012. Business Insights: Essentials. Web. Accessed April 21, 218 from http://bi.galegroup.com.libproxy.uwyo.edu/essentials/article/GALE%7CA279412503?u= wylrc_uwyoming&sid=summon . Berger, R. Introducing Disability studies. Lynne Rienner Publisher. Pp. 2 24-31. ISBN: 978-1- 58826-982-9. 2013. Center for Disease Control and Prevention. Occurrence of Down syndrome in the United States. Birth Defects. Accessed April 21, 2018 from https://www.cdc.gov/ncbddd/birthdefects/downsyndrome/data.html . Couser, T. Paradigms’ Cost: Representing Vulnerable Subjects. Literature and Medicine, Volume 24, Number 1. Pp. 19-30. (Article). Spring 2005.

  15. (STOTLER, 2018) 15 Greenfieldboyce, Nell. DNA blood test gives Women a New Option for Prenatal Screening. NPR (online articles). Accessed April 21, 2018 from https://www.npr.org/sections/health- shots/2015/01/26/368449371/dna-blood-test-gives-women-a-new-option-for-prenatal- screening . January 26, 2015. Jarman, M, Monoghan, L., Harkin A. Barriers and Belonging: Personal Narratives of Disability. Philadelphia: Temple University Press. Pp.157-162. ISBN: 9787439913871. 2017. Know Your Genes Genetic Disease Foundation. What is Carrier Screening? Published online. Pp. 1. Accessed April 20, 2018 from http://www.knowyourgenes.org/carrier_screening.shtml Linton, S. My Body Politic; A memoir. The University of Michigan press, Ann Arbor. ISBN-13: 978-0-472-11539-6. 2010. Rapp, R. Testing Women, Testing the Fetus The Social Impact of Amniocentesis in America. Routledge Publisher, New York, London. ISBN:0-415-91644-5. 1999. Rochman, B. The Gene Machine: How Genetic Technologies are changing the way we have kids and the kids we have. Scientific American / Farrar, Straus and Giroux. New York. ISBN 9780374160784 . Pp. 1-275. 2017. ---. A Blood test determines a baby’s sex earlier than ever. But at what cost? Time Magazine. Pediatric Genetics Aug. 10, 2011. Accessed April 21, 2018 from http://healthland.time.com/2011/08/10/controversial-blood-test-can-determine-babys-sex- earlier-than-ever-but-at-what-cost/ .

  16. (STOTLER, 2018) 16 Mayo Clinic. In Vitro Fertilization (IVF). Mayo Clinic Online website. Accessed April 15, 2018 from https://www.mayoclinic.org/tests-procedures/in-vitro-fertilization/about/pac- 20384716 . University of California San Francisco Health. Pregnancy Ultrasound. Online Article. Accessed April 21, 2018 from https://www.ucsfhealth.org/tests/003778.html . Schwartzenberg, Susan. Becoming Citizens: Family Life and the Politics of Disability. The Dolans. University of Washington Press. Pp. 10-15. 2005. U.S. National Library of Medicine. What are the types of genetic tests? Published online. Pp. 1. Accessed April 20, 2018 from https://ghr.nlm.nih.gov/primer/testing/uses . Young, S. Ted Talks: I am not your inspiration, thank you very much. 2018. Accessed April 21, 2018 from https://www.ted.com/talks/stella_young_i_m_not_your_inspiration_thank_you_very_mu ch?language=enLinks to an external site. .

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