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

We’re Really Not That Different: Part 2

Disabled and can’t work? Call xxx-xxx-and-we-will-get-the money-you-deserve-at-no-fee-unless-we-win-your-case. I saw this ad for a law firm that will remain nameless late last night as I was browsing my Cable, and it raised an interesting question in my mind. Are these ads another way to perpetuate stereotypes of disability? I was not convinced one way or another until this morning I saw one of those ads that claimed the following: “Does your child has a birth injury?” And then listed several, including my disability. The ad went on to say that the disabilities entitled the persons concerned to large sums of money. Then they guaranteed that they would help advocate for that money.

After seeing both of these ads, it raised a profoundly disturbing question. Why do we perceive disability as so weak? This goes back to my terminology debates. In my opinion, but quite simply, I believe we perceive disability as a weakness rather than an obstacle. This is by the way we address it.

       To bring home my point, let me address two crucial areas of life: social interaction. The other being that of earning a living. Finally, I will manage a broken system, which reinforces stereotypes. As I’ve said previously, there are two types of disability. One a person is born with and one a person acquires through some means or another later. No matter what type of disability one has, though, it seems that as soon as one is labeled with a “disability,” they are also labeled as weak and need protection or assistance—for example, the law firm’s ad equating disability to not being able to earn a living. I have several things I could say about this ad, many of which are not pleasant, but the most constructive response I have to it is I understand their desired message. However, the way they present it could be different.

       Any lawyer out there who does disability work can feel free to correct me on this point. I believe that the producers and writers of this and are trying to convey that if one is suddenly overcome with a disability after not having one for so long, then it can be overwhelming either emotionally, physically, and in the least thought about way, which would be financial. This point is fair, but I argue the premise that one who is disabled can no longer work needs to be re-thought. Perhaps instead of disabled and can’t work—we will get you the money you need to survive…the slogan could be something like below. “Disabled and have to re-think things? We will get the money you need to get things back under control.” Just because someone is disabled doesn’t mean they cannot contribute to society. Ads like these are not the only element of society preventing disabled people from being meaningful contributors to society in great need of contributions.

The second element is that of something I like to call “the social and projection bias.” What is this bias, you ask? Simply put, it is the idea that disabled people need to be protected from themselves and cruel society. This idea is not only archaic, but it is detrimental to disabled people and society in general. I know many people that believe in the “fixing” philosophy, i.e., that wherever possible, a portion of the person’s disability that can be fixed needs to be. This is harmful from a social interaction standpoint. I agree that if a person’s health is in jeopardy from a particular facet of their disability, that needs to be addressed. Otherwise, aspects of their disability that are aesthetically are not pleasing or cosmetic adjustments be left alone. Simply because this will give the disabled person a better sense of identity and realism, another social aspect that needs to be addressed is that disabled people are supposed to fit a specific mold that we are supposed to be one type of person.     As I have said in “We Are Not That Different,” disabled people are just that! People first. Because we are all people first, we are all different. We do not fit into a cookie-cutter mold. Some of us are quiet and reserved that enjoy our solitude, while others are outgoing, adventurous, and even a little crazy (in the right way). What am I getting at? Society, and more importantly, the people close to people with disabilities should not restrict their activities because they are disabled. If there is a safe way for someone to (for example) go skydiving without becoming a chalk outline, then, by all means, they should be allowed to go for it. I don’t know how often I get the question, “Wow, you drink beer and go out when you’re disabled? How is that possible?” Let me re-emphasize again; the chair does not define me. I define how I use the chair. All that said, ads on T.V. and social perceptions are not the main problems. They are just part of it. If disabled people want to be seen as “not that different,” there is another issue we need to address.

       In general, the system is broken, and by that, I mean all aspects of the system, in general, are broken. The perception of disability as a weakness is reinforced by ads on T.V., implying that once you are disabled, you can no longer contribute to society. At the same time, social stigmas would have created those ads in general. The disabled community as a whole is oppressed by a society living in an archaic mindset and being oppressed by themselves. They are okay with a social security system that only earns $65 a month without losing their benefits. They should be screaming bloody murder at this injustice, but instead, we sit back and take it. It all comes down to one thing. Change is not easy, but to quote a dear friend of mine who is no longer with us, “There are doers, and there are talkers. Which one are disabled people as a community going to be?”

Who says we cant have a family

 So, it's been about a week or so since I last posted.  Since then, I've gotten older.  I had my 27^th birthday, which was a quiet one this year.  One of the more unexpected gifts that I got was a Voiceless Minority T-shirt. It looks pretty awesome.  I will soon post pictures, thanks to my family for getting it for me.  Speaking of family, it due to recent conversations that family and disability will be the subject of this post. 

            I am not a psychologist, even though I took a few classes here and there.  However, I do believe it is human nature to want offspring. Our lives are only a blip on the cosmic radar.  It is through offspring that one leaves impressions and legacies behind.  This blog will not discuss how there is an overwhelming number of disabled children in America that need to be adopted, even though that is the problem that needs to be addressed, instead let's talk about disability and love.

            In one of my earliest blogs, I talked about the eugenics movement in the US.  That blog is called The Dark Side of Disability.   Supporters of the eugenics movement felt that disabled people should not be allowed to reproduce.  In a sense, they were dictating for us without us.  I, like many others, find this to be unacceptable.  In a book that I am reading entitled, What We Have Done, an Oral History of the Disability Rights Movement, by Fred Pelka, I continue to learn more about the disability movement I have recently become so passionate about.  The opening line in the book hits me extremely hard.  It is a slogan that is used widely throughout the disability rights movement.  Simply activists demand, "Nothing about us without us."  This slogan refers to several things, but it can be mainly applied to the family discussion.

            I recently turned 27, and like most late twenty-somethings, I have become a bit more focused as of late.  Apart from focusing on finishing a degree, I am also focusing on what my future holds in all aspects of life.  I have decided that I am bound and determined to have a family.  Some have told me that this is perfectly reasonable, while others have launched the following point against it.  You would be missing out on so many life activities of your kids, i.e., Playing ball, holding them without assistance, changing diapers… wouldn't that be too hard for you?  And still, others have said you would be basically just donating sperm and being there for emotional support.  To all who have waited on the issue, I appreciate it; however, I have this to say on behalf of myself and, I hope, also, on behalf of disabled people in general:

            What makes a good parent?  Is it how many times one can throw a ball back and forth?  Is it how many diapers one changes in a lifetime?  That is part of it, but it is not the heart of it.  The nature of being a parent is instilling caring and love into another human life for eighteen years.  By that point, you hope that they have become good people and productive citizens.  How often do you look back and wonder, "Did I change their diaper right on that first Wednesday home?"  I realize that people with physical disabilities are limited as far as the type of physical interaction they can involve themselves in.  However, accommodations can be made.

            When a baby is firstborn, he needs a lot of attention physically and emotionally. While I am grateful that I can't change a poopy diaper, I present a way that a male who is as physically challenged as I am can connect with his son or daughter.  I have often criticized these inventions as "hippie" or "new age." Still, in all seriousness, those baby carriers one occasionally sees would be the perfect solution to my lack of ability to hold my infant without "lobster-clawing" it to death.  The mother, my future wife, could indeed position the infant in my arms and on my lap as my parents did with my cute, "Q-ball headed" baby sister.   On a final note in regard to males and raising their infants, I'm sure with a little outside the box thinking, one could even rig up a way to feed their small alien a bottle at three in the morning.  

            While I am not well versed in what a female has to do with nurturing and caring for the infant, I am aware that she is often more physically involved than the male's participation.  To go out on a limb, I can suggest that if a female was in my situation, her partner could take on diaper duties, and as far as breastfeeding goes, there would be a way to adapt that as well.  Before I end this section on raising infants and physical contact, I must ask the question, are our minds as a society so narrow that we are unable to think about anything other than what we are used to?  To the several individuals who have recently tried to dissuade me, I say that disabled people have great gifts to share with society, and it is sad that you want to pass over those gifts before we have had the chance to share them with the rest of the world.

            The physical care of an offspring is an issue, but others have raised a more pressing and disturbing case to me when it comes to family.  They suggest that it might be hard for me because I'm missing out on certain activities with my child.  In response to that, all I can say is, "Come on, man, you make that argument?"      I have missed out on various aspects of it; walking, running, standing, using the restroom, etc. At first, I have accepted the issues of this part of my disability. I have had enough time to deal with it.  I acknowledge that some disabled people have not accepted their disability for what it is. Still, the majority of the disability community is well aware of what they are missing out on.

 Another point I will use to support my argument is the example of single motherhood.  With many single mothers in this country, one cannot help but notice a few things.  In many cases, single mothers are not helped out by the fathers of the children.  One may ask how they deal with missing out on certain male experiences crucial for male children to have.  The answer is that if a mother is thinking outside of the box, they seek other strong influences in their children's lives. That being said, why couldn't this be the case if a child had a disabled parent?  Yes, my spouse or I may lack in certain areas, but that is what a strong support system is for.  Even though it only takes two people to make a child, it takes various people, including relatives, parents, friends, teachers, and others, to develop a child.

Finally, as I've said in many of my pieces, it is not my goal to force people to see the world the way I do, but it is the goal of this blog to show people that disabled people are human, too.  We are not defined by our disability.  Oftentimes our disabilities are simply a very small part of who we are.  As it is in human nature to want to pass on legacies and values, it is in the nature of the disabled to want to do the same.  I ask this question if we have overcome obstacles to this point of our lives, what is parenthood but another obstacle to overcome.  The only difference is that this time, we want to struggle just like everyone else.

Way to go, Georgia!

  So usually, I don’t follow up blog after blog. My typical average is about two a week. I am willing to give you guys enough time to process the blog because I am not writing about the latest fashion trend or celebrity gossip but essential issues that matter. However, today I can’t help but note one. 

A friend of mine tagged me in a link on Facebook. Curiously, I clicked on the link, and it was a link to a news website. The article, which was published by the site RT.com, told a sad story. It was similar to the story I wrote about earlier in this blog concerning the little boy being excluded from a photo. This story, though, hit me close to home.

       I hold two degrees, one of which is in History. A lot of History can be seen in museums. Museums are one of the few public attractions that people can enjoy for little to no cost while also learning something in the process. The R.T. article told a heart-breaking story of a little girl being denied access to the museum.

 The Haas family of North Carolina was on vacation in Georgia and intended to visit the “Ships of the Sea” museum on a Sunday before they left. The father admitted in the article that he was aware that it might be difficult for his daughter to make the journey into the museum, but he was baffled by the reason she was denied access. What reason could have confused him so much? A museum employee said that the little girl in a wheelchair was not allowed in the museum because “the carpets would get too dirty.” No, don’t adjust your computer screen. You are reading that right. The little girl Lexi, who has a disability, which requires her to use a wheelchair, was denied access not because her wheelchair wouldn’t fit in the building, which would also be wrong—but because the carpets would get too dirty!

       I usually am not surprised by anything anymore, but this one makes me go, “WHAAAAA--?!” The museum later fired, to put it nicely, the “misguided employee. “ When I read this, I thought that they had handled the situation correctly, but when I read further down in the article, I came across another incident where a similar problem occurred at the same museum. With Lexi’s situation, there was a literal apology issued. Still, in the second situation where a boy with Muscular Dystrophy was denied access, the article made no mention of an apology. While these are only two incidents, these incidents highlight a point, which I have made before.

       The legislation does not change people. Even though the ADA is in place to safeguard the disabled community from these types of incidents, sadly, they still occur. More often than not. Several years ago, I went on a school trip to Boston, Massachusetts, around Halloween to use a personal example. The trip was designed to showcase the Witch history of Salem. On this tour, the professor from The Edinboro University of Pennsylvania was in charge of it was under the impression that all sites would be accessible for the few other disabled individuals that went on the tour and me. However, we found this not to be the case. Granted, I am aware that Salem is a historic town, so a lot of its buildings do not fall under the ADA because they are a grandfather. I still believe that accommodations could have been made for the other disabled person and me on the trip to view certain sites. Instead, we were given personal money to go to an alternative activity. I was appreciative of the gesture, but I felt it was a gesture that she should not have had to make. In the RT.com article, they noted that the Haas family was offered the option for Lexi to view the little tour on T.V. While this is an option, it takes away from experience and further separates people with disabilities.

       As I’ve said above, this incident and others like it make me wonder. Will society ever step out of the ’80s? If it is only persuaded to do so by words on paper, I fear the answer is no. My question is, what will it take to bring society fully into the 21^st century when it comes to equality? For not only disabled people but other groups as well. 

 

Footnote:
http://rt.com/usa/museum-rejects-disabled-girl-024/