The Art of The Casual Lie

Your friendly neighborhood super advocate is back! This time I have a question. Have we reached a point where it is okay to tell a “casual lie” rather than the truth?

You may ask what made you pose the above question. The answer is sad but simple. During a recent follow-up appointment with my pain management doctor, I began talking to his nurse. I have been to the office several times in the last few months because my pain pump needed to be replaced. On this particular occasion, I found it easy to talk with the attending nurse for that day. For privacy purposes, I will not give her name here. 

Throughout my appointment, we chatted easily. She asked me general questions about my education and other topics, and I did the same. As the appointment progressed, it eventually came out that I was a disability blogger. I told her about this blog and mentioned that we had a Facebook page. She seemed genuinely interested, so I invited her to like the page and add me on Facebook. Truth be told, I was not expecting her to do so, however, she immediately responded with the following “Sure I will add you. My name is (blank).” She then preceded to give me her name. After doing so, she said, “Now I post some crazy Crap, so don’t be offended.” I chuckled because I also post crazy stuff as well. The appointment concluded and I went home.

Later that evening, I was on Facebook checking my various accounts and I decided to look her up. While there are numerous accounts with the name she gave me, after looking for quite a while I was unable to find her. Although I expected this from the beginning, the casual way that she

blew me off with what I am sure she thought was a harmless lie got me thinking.

In America today we have become a culture that is dominated by the casual lie. We no longer dare to be honest. If the young lady had no intention of adding me on social media, I would’ve been okay with that. All she would’ve had to do was say “something to the effect of” I would love to, but it is against office policy”.  Instead, to not hurt my feelings she came across as patronizing.

I believe this not only highlights a societal issue that needs to be addressed, but on a deeper level, it brings up the issue of how people view individuals with disabilities. For the longest time the general population has seen those with disabilities as fragile. Several years ago, I wrote a blog entitled” The Protection Complex.” That blog addressed a similar issue that is still relevant today. I believe society views us as fragile because they do not see us as equals whether it’s an individual’s family unit, boss, or during social interactions. People with disabilities are often coddled and are not forced to face the realities of life. You may think I’m reaching, but I believe this young lady blew me off because she thought one of two things. That I was just hitting on her like everyone else does, or, as I believe, she probably saw me as fragile and felt that I couldn’t take the truth. 

Why has the truth become such a toxic thing in America today and especially with people with disabilities? I think the answer is quite simple. Oftentimes, the truth is raw and may hurt, however, if we continue ignoring the truth, we will become a softer and more anxious society. As a final thought, it may be good to try and soften the blow once in a while but by doing so we may do more harm than good.

Anyway, let me step/roll off my soap box for the evening. Hope you guys have enjoyed the read. I look forward to a vibrant discussion about any or all of the issues I brought up in this post. 

Until Next Time,

Your Friendly Neighborhood Super Advocate,

Jay

Thirty Years Gone but Not Forgotten; A Letter to My Pop-Pop, My First Best Friend

This Christmas will mark thirty years since the passing of my mom’s dad, or the person I like to call my Pop-Pop. To be quite honest I've been lost in my thoughts for a few days now.

Late last year I was presented with the opportunity to become a Florida SAND Fellow. The Florida SAND fellowship has allowed me not only to continue my writing which I have been neglecting for the last couple of years but equally as important, it has allowed me to strengthen my advocacy skills. There have been ups and downs throughout my fellowship but as they say, things happen when they are supposed to. As a result of my fellowship, I finally found the best friend I have been searching for my entire life. Nearly ten months ago on a dare from my caregiver, I approached my now girlfriend Samantha Lebron and started a conversation. I did not know it at the time, but God put me right where I needed to be. 

For the longest time, I held a belief that I could never date someone in a wheelchair because of the childish assumption that our physical limitations would get in the way. Boy was I wrong! I now have not only found someone who I can bounce ideas off of, but my little blue-haired alien is just as quirky and nerdy as me. I never thought my dreams of traveling the world, starting a family, or exploring what it means to have a disability on a deep level would be shared by anyone. Recently during a conversation with my dad, my feelings were affirmed when he said something to the effect that he and my mom have seen a great deal of maturity and growth in me since I started dating Samantha. He also shared that Samantha was God’s answer to his prayers. Before Samantha, he was unsure if I would ever find a true best friend not simply because of my disability but more so because of my lack of self-confidence and maturity. As much as I argue and fight with your dad, you couldn’t be more right, you hit the nail on the head. Thank you for your kind words and vote of confidence; it means the world to me. 

The concerns that my dad brought up in our conversation about my newfound maturity have bothered me for the longest time. I too never thought I would experience some of the things I have. Along with this thought, I have also often questioned whether or not I am a person that my grandfather would be proud of. I looked up to him like no one else. He was my first hero. He never saw my disability as something that made me different. He always treated me as if I was his best friend. I feel that on some level I have let him down. I have not always been the person that I am today. I can say that until recently I did not like who I was. I was one of the most negative people I knew, on the inside anyway. I have always been good at putting on a brave face and happy demeanor for my friends and family, but I have never been proud of who I am. All that changed quite suddenly. 

As I was going for a roll the other day, it hit me for the first time that this year is the 30th anniversary of my grandfather’s death. As I started to cry and feel sorry for myself, a negative thought crossed my mind. I felt as if evil forces in the universe were reinforcing the idea that I indeed was a disappointment to him. As if in response to my thoughts, it suddenly started to lightly rain. Immediately I stopped crying and a broad smile came across my face. I realized that the rain was my grandfather sending his love from heaven to reassure me that I am indeed on the right path and not a disappointment after all. 

Thank you, Pop-Pop, you have always been there when I needed you even if I didn’t know it. Although you are not here with me you will forever remain in my heart. I love and miss you every day. 

Jay

Parenthood & Me

Almost two years ago, I wrote a blog about disability parenthood called "Who Says We Can't Have A Family?" http://thevoicelssminority.blogspot.com/2013/07/who-says-we-cant-have-family.html In it, I discuss several issues about being a parent and having a disability. When I wrote the blog, I had just turned 27 and had a different view on life. As I am approaching my 29^th birthday, my perspective on the world is somewhat the same, but on the disability and parenting issue, I don't know if I still hold the same belief.

            In that first blog, I laid out the following arguments: It is natural to want to pass genes to offspring, considering human life is just a blip in the cosmic makeup of things, and all we have are the legacies we leave behind. While I still agree with that argument, I find myself internally struggling with the question. Although I believe disabled people as a group have the right to be parents, am I, as a disabled person, capable of being a parent?

            This argument has been weighing on my mind for several days now. As much as I am bound and determined to have a family, I wonder if I have ever accepted my limitations enough to have a family. By that, I mean, I am aware that I will not hold my son or daughter. In the first blog, I laid out physical ways to overcome this. But I did not do the emotional aspect of the problem. To become a good parent, one has to be emotionally secure with his or her self, to provide emotional support to the life they bring into this world. The same could be said for people with disabilities, except on a different level. People who have disabilities have to be emotionally okay with themselves as people. I feel this could be split even further.

People who have disabilities have to not only understand their limitations physically, but they have also to know what they mean. Physically correcting or not being able to hold someone might be possible and practical, but will it compensate for the emotional closeness when they hold the child. It is issues like this that I am not able to think about. Although in the earlier blog, I have said that it doesn't matter how many poopy diapers you change or how many balls you throw, I find myself not second-guessing the statement, but wondering if it comes from the perspective of someone who has no idea what it is like to play catch. I believe quality outweighs quantity, where I am struggling, can be best summed up in this example: I love sports, so I would hopefully instill a love for sports in my children. I look at my Uncle Richard and see how much enjoyment he gets out of coaching his son and my other little cousins, and I find myself asking if they love sports and I can't play, how will it make me feel to have someone else play sports with them, even if that someone else is my wife?

 

This blog may seem like it contradicts itself, but the earlier blog on family, and it may be. I am not sure of my capability to not have the physical/emotional bond that comes from the physical contact with a child and be okay with that. Things may change in the future, but as of right now, for this person with a disability, parenting is not in my future as much as I would like it to be.

The Hero Complex

            Being a new disability advocate, I find myself continually plugged into various publications. One publication I get news from is the American Association of People with Disabilities. Every week they put out a handy newsletter entitled Disability Weekly.

In a recent issue in a segment called In the News, they had a story about a mom who wrote a somewhat controversial piece. Her piece was entitled My Child with a Disability is not My Hero. As the title suggests, Miss Sarah Sweatt Orsborn asserts that disabled people but disabled children are not heroes. At first glance, even I, the non-politically correct writer, that I was taken aback. However, after looking further into Miss Orsborn's premise, I have to say I agree with her.

The premise of the article is quite simple. Orsborn suggests that the term can be more harmful than positive.  From my perspective, as a disabled person, I cannot help but agree. Every time I hear  "Oh, you're so amazing," or something of the like, I cringe. This occurs even when I listen to it from my own family. How can I be fantastic for doing such everyday tasks such as getting up in the morning and going to school? Every time someone comments on these lines, I feel like it diminishes me as a person.

I am not saying that complimenting someone for his or her accomplishments is a negative thing. I am realistic and understand that we all have egos that need a little inflating now and then. The point that Miss Orsborn and I are trying to make is that complementing somebody is fine but merely complimenting them because of the obstacles they face diminishes their self-worth and the work they have accomplished. Let me put it another way; it is like saying that we did not expect you to set the bar so high for yourself because you have this infliction. That not only causes a problem individually, but it results in a group problem.

What is that group problem? Disabled people as a whole have always expected less of themselves because society, in general, expects less of them. If we begin this second-class citizen in the doctor nation at an early age, it is no wonder disabled people set the bar so low for them.  I am a 27-year-old person with cerebral palsy who just graduated with my master's in education. However, I did not graduate with teacher certification, even though I had a 4.0 cumulative grade point average in the program. So why am I not a certified teacher, one may ask?

Simply put, I listened to society when they set the bar so low for me. Some at my school thought it was so amazing that I was getting my masters, but they saw me as too disabled to teach in a classroom. Even though it was not said directly, this was an example of the hero complex. It's so amazing that I got so far; they did not expect me to go any further and were unwilling to invest in me to help me do so. I should have done not settle for such low standards, but I did, and I have learned from it. It has helped me develop my voice as a disability advocate. It has also taught me that as good intentioned as parents are, or even family members are when they say to a disabled child, look how much you have accomplished with what you have had to go through, this has to stop.

Based on their accomplishment, judge their achievement, don't put a star beside it with a little footnote that said he or she had a disability too. Changes in culture and society do not start in Washington in the political arena. They begin with everyday people. If disabled people and those who support them want to change the way disability is perceived in this country, we have to start with ourselves. It is time that disabled people's expectations are just as high as everyone else's because we may have visible or not visible obstacles, but that doesn't make us any more or less of a person. 

Mental Health and Disability

The last blog I wrote was entitled “The Acceptance Problem.” It talked about an issue that is not often discussed within the disabled community, that of disability identity versus complete identity. Now it is only appropriate to talk about another issue that is not talked about which is disability and depression.
       There are a variety of disabilities. There are the obvious types, which can be seen, in physical disabilities. There are also hidden disabilities that impact a person’s learning style such as Asperger’s, Dyslexia or Dysgraphia, just to name a few. However, one type of disability that is not often considered a “disability” is that of mental illness. Whether it is Bipolar Disorder, Schizophrenia, or Depression these can be very debilitating, when one combines these disorders with a physical disability, the discussion virtually stops.       

My battle with depression has led me to come to several conclusions about disability and depression in general, along with the treatment of those who happen to have both. As I have written many times, having a disability comes with many challenges, which include: social, physical, and emotional challenges. The profession of psychiatry and psychology is designed to deal with individuals that have depression, but not often do these practitioners encounter individuals with disabilities. This statement may be incorrect in factual nature but it is not erroneous when it comes to experience. I have battled depression for a long time.

In my late teens, I began to realize that I was different. One may ask, how could you not realize that you were physically different before that? My answer is that for the majority of my life I was treated as if I lived in two worlds. My parents, up to that point, had always treated me as if I wasn’t disabled. I don’t know if there was the intent here or not, but they never let me consider my disability as an obstacle, so I never did. They did their best to allow me to participate in every opportunity that everyone else did. The way they treated me, it never crossed my mind that I was different. However, that all changed in high school.

Adolescence is hard for everyone. Kids in middle school are trying to find out who they are, but they don’t even know that that’s what they’re trying to do. In high school and even at the end of middle school, people are trying to find their niche. I don’t know why, but cliques start to develop. Suddenly, the littlest difference is made obvious, and it is an individual’s goal to hide their difference. However, when one has such physical differences from their peers, it’s kind of hard to hide. I’m not saying that children are malicious on purpose; just that society has taught us to fear difference.

As I began to become aware of my difference for the first time, it was kind of a slap in the face. I took out my anger on my Mom, Dad, and younger sister. The relationship I had with them throughout those years was not the prettiest. And for the constant fights I caused, I apologize. When I first began to deal with depression, I did not handle it properly. I did not seek out professional help. I don’t know whether its because I had been taught by society to fear the stigma that comes with dealing with emotional issues, or what it was, I just know I didn’t handle it properly.

In fact, it was not until an extremely dark incident in my late twenties, that I began to seek help. Many who read this might be uncomfortable with what I’m about to say, but I will honestly say that I had reached the end of my rope. Through a series of incidents, I realized that something needed to be done about the way I approached life and my disability overall. I thought that accepting the problem for what it was and dealing with it would be the biggest hurdle that I had to overcome, but I was wrong.

As I began dealing with the mental health profession, I realized that there was a disconnect between mental health professionals and the disabled community. Most of the mental health professionals that I dealt with seem to think that once I accepted my disability that I would not be depressed anymore. For their part, they were partly right, accepting my disability was part of my problem but not the whole problem.

Acceptance is only the first step. And that is only part of the depression at least for me when it comes to disability. For years I’ve complained that there are two types of disabled people, people that are okay with it and people that are not. However, I’ve recently learned that this is not necessarily the case. There is a third type of disabled person. One who is okay with their disability from a personal standpoint, but who is not okay with society’s treatment of persons with disabilities. Honestly, I can say that I fall into this third category.

It is hard to take the mental health profession and mental health professionals seriously when they do not often believe that there is room for this third type of person with a disability. Luckily, currently, I have the pleasure of working with Dr. Michael Mercatoris who has given me permission to use his name. Mr. Mercatoris is the first one of his kind that I have worked with, who seems to understand that depression and disability is a two-pronged problem.

First an individual, in this case, me, has to accept themselves for who they are and not what society thinks they should be. Secondly, an individual has to realize that there will be societal obstacles associated with their physical disability that may cause depression. The depression will not go away simply because society is not ready for such a radical change and full acceptance of disability as a norm. Rather anyone dealing with depression or a mental illness along with a physical disability must be willing to go against the grain. They must be willing to stand up for who they are and what they are and must be willing to sacrifice in order for society to slowly change, that being said, there are other things that need to happen as well.

If one accepts the premise that depression is going to be associated with disability from day to day, there are certain things that must occur. The mental health community in general needs to be better equipped to deal with i.e. help those with physical disabilities along with their mental health issues. One might ask: how can they do this? I don’t have all the answers but one answer might lie in the way they treat individuals in inpatient and outpatient programs. For example, if one is so desperate that they need to go into an inpatient facility and they have a physical disability, it might be appropriate for all involved with the individual to make sure that that the facility has adequate personal care available while participating in the inpatient the program so that they are not worried about their physical care needs to be met along with their mental health needs. As far as my own personal experience, I can recommend that providers may want to be more open to the idea that individuals with disabilities are intelligent beings and perhaps their pain or emotional issues go deeper than not accepting themselves for who they are, but perhaps they are too reflective for their own good and realize that society is in a sad state of affairs when it comes to disability. Although it is the 21^st century, in some aspects of disability, society is still in the middle ages. This may be a hard pill to swallow for many who are disabled, including myself. However regardless of how hard it is to swallow, the disabled community should have outlets in the mental health community who understand us as people and not just a disorder. Thankfully, I have found two, Dr. Michael Mercatoris and my aunt Eileen. For that I am very thankful. 

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.