Finding The Way

       Hi guys. This blog will go a little off format. I know this blog is designed to talk about disability issues, and this one will cover a few personal details as you all seem to have responded well to the last blog, where I told a little bit of my personal story. That gave me the idea for this one. 
       A new school year is about to begin. My baby sister is finally growing up! She moved into college dorms this weekend, and that hit me interestingly. I know it's not a very good description, but it's the best way I can describe it. I have two Bachelor's degrees, and I'm working on my third. People think that's so impressive and amazing, but I look at this little seventeen-year-old genius (yes, I said seventeen), and I wonder, what am I doing with my life? She is already certified with 90 hours of preschool assistance that translates into some certificate in Maryland. Sorry, Kim. I don't remember all the details. She's going to have about a semester or half a semester already done. Overall, she is exceptionally goal-orientated, and I am very PROUD of her. However, she makes me question myself. 
       For the past couple of days, I have been debating whether my lack of traction or mobility in my life has been a result of my disability and societal condition, the re-evaluation of my disability, or a lack of direction. My parents often said to me over the last nine months that I change direction every other month. This statement only has some merit. 
       As I've said before, until about eleven months ago, I had my life planned out. I would be a teacher first in public school then eventually at the college level, but life threw me a curveball, which throws people often. I didn't think it was going to be an identity crisis curveball, though. I finally realized that my passion and my drive didn't equal out to my situation or opportunities. Why was this?
       That is the question that I have been struggling with for days upon days since the last "hardcore" conversation I had with my mom. She keeps saying that because of a certain event, our circumstances have changed. Which they have…but does that mean my passion has changed? No. If anything else, the last year's fragility has made me realize that they must go for it if one wants something before they do not have the opportunity anymore. This philosophy is what drives me. I guess it has always driven me. That is why I've been at odds with so many people in my life. They have their preconceived notions of what I should do because of my societal limitations, and I look at them and feel that way does not work for me. It should work for anybody in a chair.  
       Many people with disabilities settle into what they think they're supposed to be as a person with a disability. For example, people in manual chairs often won't date people with power chairs and vice versa because society thinks that it is a natural fit for us. That is the only form of companionship that is "normal" or "natural." For some, I can see why they choose that route. However, my eventual life choice will not be just based on whether or not they have a disability. If they do, then they do. Suppose they don't, then they don't. This brings me back to my main point. 
       As I finish my third degree, which will eventually be "useless," I am at another crucial transition period in my life. The small town in which I live has served its purpose. It's too damn cold, and it's a transient town. All my friends that I've made here have come and gone, minus a few who I think will be here forever. As I wrap up my career for now anyway, I have to decide on where to live. 
       My parents wish for me to live close to them so that I can visit on holidays and family occasions, and so that I will be in a little safe bubble in case anything happens. I agree with the first point—I would love to be close to family, but the second point is what drives me away the most. I've always been a go-against-the-grain-type person. I have ever had to do things in a non-easy way. Not the hard way, but if there's a challenge involved, I have to take it. I see no reason why I should be limited to geographically because of my disability. Society and those around me say otherwise. This is another crucial issue that disabled people need to be vocal about. No, not the geographic location in particular, but instead is allowed to nurture our spirit for what we want it to be. Not what others think it should be. 

The Identity Crisis

 

“On the one hand, she was viscerally aware of what polio had done to her body and of the day-to-day realities of living with a disability. But she was also aware of what she called “a gentleman’s agreement” at home and at school to pretend that her disability didn’t exist.” 

       This is a quote from chapter 1 of Fred Pelka’s book What We Have Done: An Oral History of the Disability Rights Movements. This particular quote is a part of the Childhood chapter, and he’s introducing Corbett O’ Toole. In the pages following this quote, Corbett O’ Toole’s interview describes a fundamental problem still relevant in society today--that of identity. 
       As we progress from childhood into adulthood, we struggle to find our identity. We strive to no longer be perceived as so-and-so’s child but rather our independent person. This is no different, no matter your race, religion, sexual orientation, or gender. However, when one has a disability, the identity struggle is often internal. 
       What is the nature of the internal that disabled people face? Apart from dealing with all the obstacles that any teenager or adult deals with, people with disabilities often struggle with what I like to term the “okay with it” or “not okay with it” question. When I say that there are two sides to a disability, I’m speaking from personal experience. No, I am not referring to born with vs. acquiring your disability in later life. In this case, I am referring to accepting your disability for what it is or wanting it to be something different. This is a pervasive struggle throughout the disability community, but not many people with disabilities are willing to discuss the inner battle that occurs. Sometimes daily, this battle happens. I present here a little bit of my struggle with the question of identity. 
       I know what it is like to have a disability, but I do not know what it is like to have a child with a disability. So I cannot imagine what it would be like to raise that child. That being said, it makes complete sense that the stigma about disability is arraigned from childhood. If I were not familiar with disability, I would see it as a “bad” thing. Also, if I had never been exposed to it, as Pelka puts it, “The idea that disability is a taint, a statement about the inherent worth or character of the person with the disability, works itself out most painfully on children with disabilities who absorb, often without knowing, this prevalent but generally unspoken judgment.” (Page 30). I can say that this is true in my life, as well. The earliest memory I had was taking a ride with my mother and maternal grandfather on the way to physical therapy and falling out of the car. My mom was a therapy drill sergeant when I was a kid, and to her credit, I thank her for that. It was her belief and mine at the time that therapy would improve my condition. I believe that the treatment will help me maintain my condition, but it will not improve it. If it wasn’t for my mother taping my hands open to the playpen while I was standing, I don’t know if I would have the sense of humor I do and my ability. Her practices reflected an essential belief about disability. There is one school of thought, as Pelka puts it that, that the belief the person with the disability needs to be “cured” and “made whole.” (Page 8). My mother is easily stressed, but she is one of the sweetest people I know. She will bend over backward for anybody, but when it comes to disability, I still believe (like all of us) she has a lot to learn.
       It was ingrained in me as a child that appearance was vital. To some extent, I agree with that philosophy, but on some levels, I am sure unintentionally, it came off as treating my disability as if it wasn’t there. All that being said, I am very grateful for my parents for the support they have given me throughout all of the years—including the struggle with my identity that I am about to discuss. 
       When I was fifteen until I was about twenty, I can safely say that my parents and I didn’t get along at all. Back then, I thought it was because they didn’t understand me; they didn’t know anything or some teenage notion like that. I’ve since come to discover that our fighting was a result of something much more profound. The fight that occurred between us was a result of me not being comfortable with whom I was. Therefore, being able to stand up for my own identity. This does not mean I was not pleased with the sarcastic smiling kid I was—no, the discomfort occurred on a much deeper level. I was not comfortable with who I was as far as my disability. I would often get into fights with my mom over therapy, simple tasks like shaving, or “keeping up my face,” as she termed, trying to control the acne that would break out. What I was fighting about was the ability to control my own life. Some of you that might read this will say that this is a typical fight between a teenage child and a parent, but nothing is typical when the parent is also your caregiver. Typical goes out of the window. Not only was I fighting the hormone storm that was raging in my body known as puberty, but I was also fighting with the two people that I loved the most. Because we had never been put in a situation like this before. I mean, they had never raised a child with a disability, and they were only doing what they thought was best. For my part in those fights, I sincerely apologize. They say hindsight is 20/20. How true that expression holds in this instance. 
       Apart from the fighting with my parents—from the time I was twenty to about twenty-two, I had a hard time dealing with the social stigmas and pressures that came with disability. Without going into detail, I can suffice to say that I did not handle those pressures very well. After several years I thought I was all right, and things were on the upswing. Until fairly recently, when I discovered the underlying cause for most of my identity problems. 
       Because I had always believed that I could do anything despite my disability, whether rightly or wrongly, it would come back to haunt me. I am not saying that people with disabilities should be limited but should be aware that though it is unjust and not fair—society puts limitations on them. Recently, I came into a crisis with my school and what I had planned for my life. Those around me and those who know me well know that I am mentally capable of whatever an average person can do. However, if I am not given specific accommodations physically, I am at the mercy of others. This holds in the realm of everyday life to pursuing dreams of education and employment. Although I believed that I could be a productive teacher in the classroom, I came up against my first real sense of resistance in life. I’ve always been told by a good friend of mine (who is no longer with us) that I can do anything if I put my mind to it. Sadly, while in an ideal world, this may be true, but it is not reality when you have such obvious obstacles to overcome as I do. Without someone in a position of power supporting people with disabilities in their chosen aspirations, desire can only take it so far; hence, why society needs to develop a greater understanding of disability. Once a company develops that more excellent knowledge, then more allies for the disabled will emerge. More barriers that we, as a community, face on an everyday basis will be thrown aside. 
       

Footnotes: 
Pelka, F. (2012). What We Have Done: An Oral History of the Disability Rights Movement.

I Don’t Need Fixin'

So it’s been a while since I’ve written. I can’t say precisely why, but recently I’ve gotten inspiration back. I’m reading a great book by Fred Pelka, the first global history of the Disability Rights Movement that is actually told by people there. It is called What We Have Done: An Oral History of the Disability Rights Movement. This book does a great job of two things: teaching someone who is disabled more about their movement because, sadly, I am not well informed, and secondly, backing it up with scholarly research. However, it’s this book and recent conversations that have caused me to write this blog. 
       There are several perceptions of disability but one perception of disability that irritates the disability community and me in particular. Fred Pelka has the medical model of disability. Rather than using this technical term, I refer to it as the “need to fix what is not broken.” Often in my life, I have encountered both persons with disabilities, caregivers, and friends who follow one of two sides when it comes to this issue. Either one believes that disability is a problem that we need to fix or think it is an obstacle that we must overcome. 
       In my case, I was born with a disability. Like I have stated before, there are other ways to become disabled. Disabled to me is not important how one becomes disabled but how they approach disability. Recently, in conversations with my elderly neighbors, they’ve asked me the following question, “If there was a cure for your ‘disease’ would you take it?” As politely as I could, I said to them, “No, I would not.” They, like many others, had the same response to that question in which they looked bewildered. How is it possible that if I could wipe my private area, I would not take it? Simple. I believe I don’t need “fixing.” I am supposed to be the way I am for a reason. Although I think that, society as I have noted in many blogs, sees me as an outsider or outcast. I did not understand why society saw me as an outsider until I read a powerful quote from What We Have Done: An Oral History of the Disability Rights Movement. In the following section, Pelka lays out the belief system that supports the idea that disability needs to be fixed. By the end of it, he also brings to life why society, in general, has such a hard time making a place for persons with disabilities. It is not only because they d not understand the difference in terms of disability. It is indeed more merely that they feel that disability is a problem that can be eradicated and fixed. 

“Here too, however, the ideal was that the person with the disability be cured and again “made whole.” In this model, a failure to cure was not attributed to the spiritual or moral state of the disabled person (at least not overtly) but rather to a loss of medical science. Even so, the continued emphasis on cure vs. pathology, according to Richard Scotch, “assumes an idealized notion of ‘normality’ against which disabled people are always being compared. ‘Abled-bondedness’ is seen as the acceptance criterion of normality. Further, as Kaplan notes, “under this model, the problems that are associated with disability are deemed to reside within the individual. In other words, if the individual is ‘cured,’ then these problems will not exist. Society has no underlying responsibility to make a ‘pace’ for persons with disabilities since they live in an outsider role waiting to cure.” -What We Have Done: An Oral History of the Disability Rights Movements, page 9

       Pelka’s statement reinforces the idea that persons with disabilities are outsiders. To the “fixers” of society, persons with disabilities should accommodate society and not expect to be adopted into society. This idea is not only erroneous but also more prevalent than some would like to believe. The following section of this blog may rub some close to me the wrong way, but it needs to be addressed. 
       I do not often use personal stories without permission. I try to stay as straight as possible. However, the “fix-it” philosophy has been something I have encountered for most of my life. My posture has not always been the greatest. In fact, over time (due to my disability and laziness), it has gotten worse. For the part my laziness has played in it, I admit that I can fix it somewhat. However, I have realized that I am never going to sit up straight, and I am always going to end up leaning over at some point in my day. Some around me say that this will make me unemployable, and I should do things to correct this. To them, I have this to say, I try to maintain my posture as much as possible, but are we suggesting that we correct all of our flaws as humans? Just to fit into a pre-determined societal standard? In that case, I don’t want to fit into society. 
       Another issue that I have is that sometimes I cannot get to the restroom on time because people are not always available to help me. I used to beat myself up over this issue. In the past year, though, I’ve realized that certain things about my disability are not going to change, such as not always having assistance in the bathroom and the lobster-like hands that I have developed. You laugh, but literally, they look like chumps. My physical differences may look unsightly to some. A large majority, but they are a part of me. I would not change them for anything. If anyone cannot accept someone with a physical disability, it reflects that person and not demonstrates the person with the disability. 
       The above statement does not mean that persons with disabilities should not carry themselves and possibly can but simply that they should not be afraid to allow for their disability. If someone is unwilling to accept someone for all of who they are, they are not worth it. This includes society as a whole. If an employer does not want to hire me because occasionally my posture lags or my hands look different, then I have only one thing to say, you are missing out on a great friend because you are narrow-minded. I am not the only brain you will be missing out on. I hope you have a good day! 
       I hope this blog wasn’t too preachy. Still, my main message is that if people with disabilities are ever going to find a peaceful place, they must first accept themselves physically and emotionally. They need to stop living for what society says they should be.

 

 

Footnote: 
1.) Pelka, F. What We Have Done: An Oral History of the Disability Rights Movement. 2012. University of Massachusetts Press.

 

The Dark Side of Disability: Eugenics and Euthanasia

 

On July 26, 1990, a quiet minority found their voice. President George Herbert Walker Bush would sign into law the most comprehensive disability rights legislation to date¹. However, the Americans with Disabilities Act was just the culmination of a silent minority struggle to be heard.  This struggle is not often recognized. Since this blog is designed to empower people with disabilities and educate others, it would be inappropriate not to examine the Disability Rights Movement's history. For a group to have a powerful voice, they must understand their roots. In terms of the disability rights movement, it is important to examine the key figures involved and critical events and milestones within the training and the movement's goals up until the present day.

The term disability is defined as "lack of adequate power, strength, or physical or mental ability; incapacity" ²

Initially, the term eugenics was coined by Sir Francis Galton in 1883 in his book Essays in Eugenics. Initially, the term was meant to encourage people with good genes to procreate. Some of Galton's followers even combined it with Gregor Mendel's inheritance research patterns to explain the passage of certain inherited traits from generation to generation³.  It was not long before the term eugenics would no longer have a positive connotation. Many people would soon embrace the term eugenics and the movement that went along with it to solve the disabled problem. They would end up passing laws that would limit such activities as marriage and childbirth. Many regulations went as far as allowing the forced sterilization of people with disabilities. There were several compelling cases, which upheld this principle. Perhaps the most influential was the Buck v. Bell decision.

To understand the Buck v. Bell case, it is important to understand the law that prompted the Supreme Court to hear the case in the first place. What follows is the Virginia Sterilization Act of March 20, 1924^4.

"An emergency exists; this act shall be enforced from its passage. An ACT to provide for the sexual sterilization of inmates of State institutions in certain cases. They were approved on March 20, 1924. Whereas, both the health of the individual patient and the welfare of society may be promoted in certain cases by the sterilization of mental defectives under careful safeguard and by competent and conscientious authority, and Whereas, such sterilization may be effected in males by the operation of vasectomy and in females by the operation of salpingectomy, both of which said operations may be performed without serious pain or substantial danger to the life of the patient, and Whereas, the Commonwealth has in custodial care and is supporting in various State institutions many defective persons who if now discharged or paroled would likely become by the propagation of their kinda menace to society but who is incapable of procreating might properly and safely be discharged or paroled and become self-supporting with benefit both to themselves and to society, and Whereas, human experience has demonstrated that heredity plays an important part in the transmission of sanity, idiocy, imbecility, epilepsy, and crime, now, therefore 1. Be it enacted by the general assembly of Virginia, That whenever the superintendent of the Western State Hospital, or the Eastern State Hospital, or of the Southwestern State Hospital, or the Central State Hospital, or the State Colony for Epileptics and Feeble-Minded, shall believe that it is for the best interests of the patients and of a society that any inmate of the institution under his care should be sexually sterilized, such superintendent is now authorized to perform, or cause to be performed by some capable physicians or surgeon, the operation of sterilization on any such patient confined in such institution afflicted with hereditary forms of insanity that are recurrent, idiocy, imbecility, feeble-mindedness or epilepsy; provided that such superintendent shall have first complied with the requirements of this act. 2. Such superintendent shall first present to the special board of directors of his hospital or colony a petition stating the facts of the case and the grounds of his opinion, verified by his affidavit to the best of his knowledge and belief, and praying that an order may be entered by said board requiring him to perform or have performed by some competent the physician to be designated by him in his said petition or by the said board in its order, upon the inmate of his institution named in such petition, the operation of vasectomy if upon a male and of salpingectomy if upon a female. A copy of the said petition must be served upon the inmate together with a notice in writing designating the time and place in the said institution, not less than thirty days before the presentation of such petition to the said the special board of directors when and where said the board might hear and act upon such petition." 

Based on this act, a seven-month-old named Vivian Buck and her mother Carrie and her grandmother Emma were "feebleminded" on May 2, 1927, by the U.S. Supreme Court. The primary reason they were believed to be feebleminded was that Carrie had Vivian out of wedlock⁵.  

These individuals were classified under a term that had no clinical definition or meaning. The state of Virginia would later apologize for its role in the eugenics movement; however, the apology would come decades too late. The Buck v. Bell decision would give the green light to other state laws, which would lead to the sterilization of an estimated 65,000 individuals with disabilities⁶. Although eugenics was a deplorable practice, it did not promote the killing of the disabled population. Eugenists believed that the disabled community should not be allowed to procreate. It is not until the Holocaust that a much greater tragedy would occur.  

Mostly everyone is familiar with Hitler's Holocaust against the Jewish community, in which 6 million Jews perished. However, the Jewish community was not the only one to suffer at Hitler's hand. A program known as Aktion T-4 was instituted to eliminate "those unworthy of life." The program was designed to destroy those who were physically and mentally disabled. At one point in Germany, the program even went as far as to decree on August 18, 1939, that all births of physically and mentally challenged persons be reported to the public health offices. This decree was later extended to adults⁷.

It is no wonder that people with disabilities have undergone struggles from the beginning. They were subject to a natural human habit—a nasty human habit of judging those different from us. The difference is, what makes humanity great, but often it is not celebrated. It is looked down upon. This blog examines what happens when the fear of difference goes too far. The euthanasia and eugenics movement were perhaps some of the darker obstacles the disabled community has had to overcome. This blog is not meant to focus on the negative, but one cannot gloss over certain parts when examining one's past and still hope to understand them better.

 

Footnotes:

1. http://www.politico.com/news/stories/0710/40205.html

2. http://dictionary.reference.com/browse/disability?s=t

3.http://www.hsl.virginia.edu/historical/eugenics/2-origins.cfm

4. http://www.eugenicsarchive.org/eugenics/image_header.pl?id=1236&printable=1&detailed=0

5.http://eugenicsarchive.org/html/eugenics/static/themes/39.html

6.http://isc.temple.edu/neighbor/ds/disabilityrightstimeline.htm

7. http://www.deathcamps.org/euthanasia/t4intro.html